Harvoni in hand, but Afriad to take the 1st Pill

[Amj1951]

Hi everyone, I have been reading the forum for a few days and I appreciate all of the thoughts, information and personal stories I’ve found. I have Hep C. They seem pretty certain I have had it since I was 12 and had a blood transfusion which was in the early 1970’s. I was approved through my insurance with no problem for the Harvoni 12 week treatment. I am a genotype 1a. My pills came today and my treatment coordinator says that I can start the pill now or tomorrow. She suggested in the morning. My doctor is a liver specialist here in Dallas and they said they are seeing a lot of cleared viral loads at the 4 week tests and/or very low numbers. I forget exactly what my number is but it’s not quite 3 million and I do have scaring but no cirrhosis.

I am scared to death to take this pill.

I do not talk about having Hep c with ANYONE but my parents and the man I have dated for almost 15 years now but sadly he lives about 3 hours away and can’t be here tomorrow. I sound like a 5 year old.

I was born with one kidney and I have some damage but the kidney is fine for the treatment, so everyone says. I see a kidney specialist and will see him more often while on the treatment. I understand I have to get rid of the Hep C. I am excited on one hand that I very easily was able to get approved for the treatment and I have the pills in hand, but I am so afraid that my kidney will be more compromised.

When I read what some of you have gone through, I feel kind of foolish voicing my concerns, but they are real and some of this I won’t say to my parents or my friend. Protecting and not worrying them is important to me.

Has anyone here had any real issues with how the Harvoni is affecting your kidneys? Or any other organs? I cant find much information other than the information Harvoni put out that its best if your kidney numbers are at a certain point, etc etc… and perhaps that means it really wont cause a lot of problems??! My understanding is the numbers can go up during treatment but they have shown to go back to normal or to what they were once treatments over. I have issues with protein. My kidney leaks protein and my creatinine is elevated and that is one thing I saw that can be affected. I take losartan hctz to control it and its working so far. I guess my fear is I will take the Harvoni pill and my kidney will shut down, then I have to stop the treatment and perhaps lose my kidney and be on dialysis. Sigh : )

The first pill is the hardest? My friend will not be down till the weekend and I think taking the pill, on my own, alone is what is so VERY scary right now, but I know I have to take it. Also what time of the day to take it? My treatment coordinator said to take it in the morning but reading on here some say they do better taking it in the evening.

Other things I wonder about is how many of you talk about brain fog and fatigue etc. I guess I have been very lucky and I have never had any symptoms yet or if I have, I did not know it. My liver numbers have always been very slightly elevated but no one has ever really been concerned. My doctor says ‘when this is over you’ll feel better’. When she says that I always think I don’t feel bad now so feeling better than I do now minus the anxiety I am feeling right I guess will be pretty spectacular?!?!

I am sorry for rambling. Is there anyone else in my position with other issues besides the liver, and was afraid of taking the first pill? I would love to hear from you if there is.

Thank you for reading this.

[PaulG]

Just about done with 8 week treatment 3 more days The pill is about has easy as it gets a few headaches. Good luck  to you

[Amj1951]

Thank you for the note. I KNOW what I am feeling is anxiety, but sometimes it is hard to overcome... like right now.

[harvonitoo]

I was worried as well before my first pill, I even bought some Tylenol in case I needed but I'm on almost two months with NO SIDE EFFECTS whatsoever! Nada, zero, zilch! It doesn't not mean that you will not get any headaches but that's the worst of it! Or you may even be one of those people that don't get none like me.
 Just drink a lot of water throughout the day! The sooner you take it the sooner you gonna get rid of that hep c! I was undetectable after 4 weeks! I have been working 12 hrs/day and even 15 believe it or not..Feeling great!

[Mike]

Hi Amj1951,

I certainly understand your reluctance about starting treatment and the fear that it may cause other health issues.

I would encourage you to remember that your health team, including your Nephologist have cleared you for treatment and will be closely monitoring  your treatment.

There will be routine blood tests and your kidney function will be included in the blood work.

This is the best time to be treated and you have an excellent chance at a cure, finally ridding your body of this pernicious virus, which will greatly improve your overall health.

Sometimes the unknown can be scary, and can overwhelm a clear path.

But once you start the journey, you might find it wasn't worth the worry.

You have a good medical team which think it's time to move forward. Please take their advice and focus on a the new you - and the Hep-C free life that is just 12 short weeks away!

Best wishes, Mike

[amy1662]

I know how you feel I was very nervous when I first started treatment. I had paryoxil afib and had a catheter ablation procedure to control it. I was worried that the treatment would aggravate my condition. I was told by my doctor that Hep c can affect more than just the liver. The doctors could not find the cause of my afib episodes. My cardiologist told me that my liver disease could be aggravating or even what triggered my condition so with that thought in mind I knew I had to put all my trust in this pill that it would cure the hep c. I am now six weeks into my treatment and feel great. I know its hard but you have to try and put your fears to the side. Try and remember that having hep c is putting you at risk for some serious health issues. That pill you are about to take is your savior and your ticket to good health free from a very serious disease that could actually hurt your other body organs including your kidney. There is so much about hep c and the way it affects our bodies that we are still learning. Trust me that pill is going to only help you. Your doctors would not have prescribed it for you if they felt you were to much at risk. Harvoni has very minimal side affects. When I first took it I was worried because I did not feel anything at all. After a week I noticed that I was a little more tired than usual but that was it. You are going to be pretty surprised at how great this medication is. Once you get that first pill down the rest will be easy trust me. you are going to be OK and make it through this. do it for the sake of your kidney and your future health. You can get through this and remember we are all here for you. try not to worry I know its hard but you will be OK. sincerely, Amy

[Mugwump]

I do have scaring but no cirrhosis.

I am scared to death to take this pill.

 

 
Thank you for reading this.

Edit I just read your last post and understand your fears, I do not have blood pressure issues or a heart condition so you will need to work in close cooperation with your doctor. But if your doctor already approved the med then it should not cause a problem if the treatment regimen is followed. The strain on your kidneys and vascular system should not be that great otherwise the company would have posted these as serious side effects for physicians to make clinical decisions. There is a strong warning against double dosing so there is no doubt that Harvoni has strong effects on systems but then again so do many drugs. A double dose of interferon and pills could have killed me when I took the first series of treatments

My deepest feelings of sympathy and understanding. You are at precisely the stage I was at about 11 years ago when I went for my first treatment with peg interferon and ribaviron. That treatment had less than 50% chance of clearing my virus but I did it anyway. To be free from the worry of spreading this disease was of much greater importance to me than fear of treatment failure or something even worse occurring, even the known adverse side effects of Interferon treatments. So I followed the treatment over 48 weeks without missing a shot or pill. It weakened me greatly and was very difficult to take as my essential blood cell counts went for a dive.

In the end Interferon combo treatment did not work for me, the dice were not with me and I was completely devastated as I realized that I would have to live the time I had left with the worry of accidentally infecting someone else unless a new treatment came along.

Please do not fear treatment instead celebrate that you are not so far along in the progression of this cursed affliction that it will have a poor chance of helping you.

I started Harvoni on Dec 3 and at first only felt slight headaches and thirst. After 2 weeks of treatment my liver started to really respond and after eating I felt sleepy and then ZOOM a tonne of energy as my liver metabolized the food at a better rate than it had in years!

In short follow the directions very carefully as it will make you extremely thirst at first, if you get nervous and loose some sleep do not dwell on it instead do things to occupy yourself and DO eat if you start to feel hungry.
I am much more active than I was a month ago and losing some weight even though I am eating a full diet for level of activity.

THIS DOES NOT MEAN Harvoni is making me lose weight, it only means that I am certainly healthier than I was only a month ago. Beside Harvoni would be a tad expensive to use as a 'fad" diet pill. ;->

If I do not eat then I suffer what others call brain fog and a lack of sleep because of it! I suspect this so called "brain fog" is actually mild hypoglycemia which will also cause mild headaches.

Good exercise will help your system moderate the mild side effects of suddenly having a more robust liver calling the shots and making you more thirsty and hungry.

...........

It is not necessary or perhaps even a good idea to over eat to compensate if you miss a meal. For example I didn't eat much the day before Christmas so that I could consume more food on Christmas day. The end result was my first experience with so called "brain fog".

After Christmas I ate something that might just have done me an insult and I wound up spending a full day on the john.
I did the all the cooking so I have no one else to blame in this case, fortunately it was only a mild dose of some little bug I suspect survived all the cooking an cleaning. Sometimes being the cook is more dangerous than being the recipient of the culinary exploits of copious types of turkey based dishes. Taste testing is a dangerous profession and should only be done by professionals with cast iron stomachs this time of year.

So I suspect my immune system is fine because what ever the bug I got a few days back lost the battle in one day unlike during the first treatment where some bug almost put me in hospital half way through the treatment with interferon and lasted over a week.
......................

To shorten up this little tale of my experience with Harvoni so far;

1: It will cause you to pass urine immediately in much greater amounts than most are used to. KEEP WELL HYDRATED

2: You can become confused on this med if you do not eat adequately and if the headaches persist or become hard to bear consult your doctor. And carefully read and follow the treatment regime.

If you experience some other symptoms then tell a physician. I already informed my doctor about having a bout of gas that could have blown a ship out to sea when I started on this med. So far no one else has noticed this side effected, much to the good fortune of global air quality as there were a few times that I drove my spouse out of the room and even had her making excuses to go shopping!

3: Fear all by itself is as dangerous as the HCV beast that never leaves until it is forced out.

For me the treatment is working so far and I fully trust that it will clear me of the virus by the end of 24 weeks of pills. Because you have not yet progressed to full blown cirrhosis your chance of clearing the virus is about as good as it gets.

The fear of having to live the remainder of my days with this devil of a disease and early liver failure is much greater than my fear of taking this medication.

I hope you sail through your treatment and you only feel the minimal effects that many are experiencing.

 
We are all afraid of this disease, but HCV and corresponding fears can be conquered, the science will do this, it is not something to fear although it may at times seem to be magic!

Eric

[Roger]

Hi Amj,

I remember fighting to be able to actually get Harvoni, so the day it came I felt like eating 1/2 the bottle!

I also only have 1 kidney and that was the first question I asked several doctors as well as 2 different people and the nurse at Gilead.  For me anyway, all was ok to go for it - and I am super glad that I did.

There have been up's and down's with the tx, but "really" the side effects are so slight that they are hardly worth mentioning.

Be sure to drink at least 2 liters a day. Measure your water consumption - no guessing allowed.

It's better than living with a disease the will end up killing you eventually.

All the best to you.  Got kill that beast!

[kate0b1]

Amj1951, it sounds like all of your doc's are on top of things and will be watching for any troubling labs, maybe you could ask to do more freq labs if that will keep your anxiety at bay. @harvonitoo, I am chuckling that you bought a bottle of tylenol for the journey, I did the same thing! I have only taken maybe three so far (almost finished week three) and @mugwump, I am in awe of anyone who completed 48 weeks of treatment, I  made it to 22 weeks and had to bail.

[Amj1951]

Thank you ALL for your encouragement. Please bear with me while  I figure out how to post and reply and if I don’t do it right please don’t feel I am not responding to you. All of your responses are greatly appreciated.

I feel asleep shortly after posting last night. I think the anxiety got to me but now I am wide awake and the Harvoni pill is foremost in my mind.

I’ve been sitting here an hour and my GOAL is by 10am I WILL take the pill.

Intellectually I KNOW they would never have given it to me if they did not feel I am capable of getting thru it. I KNOW waiting only means there is a chance my kidney could get worse and then I would not be a candidate. I KNOW it is the smart thing to do. I KNOW by this time tomorrow there is a huge chance I will be sitting here laughing at my anxiety (I hope!), but stepping past that fear is a b**** : )

I am really glad I found this forum.

Now I am going to enjoy another cup of coffee and start drinking some large quantities of water so I can enjoy the full benefits of that $1,125 pill!

I hope you all have a really great day!

[Amj1951]

BTW.. ERIC, do you fly fish? (I noticed your quote.) We are learning and love it!

[Amj1951]

Roger, were you born with one kidney or did you lose one? I know there are many people who are born with only one but I have never actually met anyone. Was this part of why you had a hard time getting the Harvoni?

I have read on here where many have had to fight to get the pill and I've not really understood that because I thought especially now with the 'Obama Care" everyone was supposed to have access to everything.. no questions asked? Yes I know how that sounds, but my way of thinking is this pill is cheaper than paying for a new liver.

[Roger]

AMJ,
I lost a kidney to kidney cancer 12 years ago.  Since then, I've learned how to take care of the only kidney that I have.  I question everything and do research, as most doc's can't tell you the difference between an aspirin and a tablet of ibuprofen - or how they mix together!

I didn't have a real hard time getting Harvoni, as my insurance company finally came around.  My kidney had nothing to do with it - it had to do with the insurance industry liking to take money and not give back.  In the end they came around though.

FYI, ObamaCare does not give us 'access to everything, no questions asked'.  Obamacare is a good start, but not 110% complete yet (if ever).  I like the things in ObamaCare that have changed, but the insurance system is BIG and in comparison, ObamaCare is small.

[Mugwump]

BTW.. ERIC, do you fly fish? (I noticed your quote.) We are learning and love it!

Yes, but where we fish it is hard without using a chainsaw and a backhoe to cut a hole in the ice large enough to get in a cast.
I hope to be able to fish again in the late spring 2013 'edit: in 2015 (since when do I go time fishing!) after this treatment is over.

I might go winter steelhead fishing this year in February if conditions this year permit, but it is too expensive, weather dependent and usually down right cold out west where I live.

Regards
Eric

[Amj1951]

I took the pill and I am alive! Go figure : )

I don't feel anything. Fingers crossed it stays that way.
I TRULY appreciate all your words of encouragement because with out them, I am not sure I would have taken it today.

ROGER I am sorry to hear about the cancer. I am assuming 12 years later you are fine now?

ERIC.... We have only fished for trout so far. We've fished in Colorado a few times and Henrys Fork last year and that was a lot of fun! Locally we go to a area at the Texas / Oklahoma Line. No ice here though thank goodness, though they say we MIGHT get a flurry Friday. I hope you can go in the spring! : )

[Roger]

AMJ,
Yes, 12 years and still NED (no evidence of disease).

Take the Harvoni about the same time everyday. Do it with food.
Stop worrying, do't stop taking it.

I'm sure everybody's "thought" about what "could" happen, down the
road - as it is a new drug.  That said, what's the alternative at this point?

[Amj1951]

AMJ,
Yes, 12 years and still NED (no evidence of disease).

Take the Harvoni about the same time everyday. Do it with food.
Stop worrying, do't stop taking it.

I'm sure everybody's "thought" about what "could" happen, down the
road - as it is a new drug.  That said, what's the alternative at this point?

That is great news!! Do you have any limits on Protein intake with your kidney? I watch the amount of red meat I eat or try to.
My treatment coordinator was really repetitive about taking the pill at the same time. I had a chicken breast about a half hour after taking it and so far.. I feel normal. Actually I feel VERY wide awake and I hope that goes away at bedtime! Otherwise, no side effects yet. I normally drink a lot of water but I am making sure to get the 2 liters.

A side note on the water. I know its needed but my kidney doctor has always reminded me you can drink too much and wash out the nutrients in your body. I don't take any supplements. I respect everyone's opinion but I feel if you eat the veggies, etc you get what you need and other than Vit D I have not had a problem so far. I've always thought the low Vit D was because no one bakes in the sun anymore, but I read something, somewhere about how the liver can affect the Vit D. Has anyone else heard this? I am very curious to find out once we clear this disease (positive thinking : ) how many other little issues will disappear along with the Hep C?!?

Your comment about this being a new drug.. I have searched and cant find any information on how LONG AGO they did the trials for Harvoni, so for me the questions is how long have the people in the trails been free of the disease not just cleared? I saw on one of the forum pages how someone was doing one of the other treatments and cleared the Hep C but  months later it came back. That is a concern, but it wont stop me from trying.

My anxiety level has gone down 90%. I just needed to get the first pill down and make sure I had an appointment next week with the kidney doctor to keep an eye on it.

Btw.. my name is Meredith. I felt a bit odd giving my name since I have kept the Hep C to myself, but its very comfortable here.

[Roger]

AMJ,
At about week 2 your hepatologist will call for a complete blood panel.  Be sure he/she adds your virus level, and Vit d, kidney function & liver function. I think they do by rote, all but virus and vitamin d - so get clear and 'tell' him/her what you want.

You will not be drinking too much water, at 2 - 3 liters a day.  Is your kidney doc an urologist or a nephrologist?

[Amj1951]

Roger,  My kidney doctor is a Nephrologist. He is part of Dallas Nephrology Associates. I got lucky with both him and my liver doctor who is part of Baylor.

I see the kidney doctor next Friday the 16th, and I’m sure he’ll run kidney and I am sure liver function tests plus a 100 other things I never quite understand and then I am scheduled to see the liver doctor at 4 weeks and she'll run the same tests plus more tests I would think. My kidney doctor is great at running something extra if I ask since they are the ones who actually found the Hep C during a 24 hour urine test. They seem pretty thorough. I don't know if he can do a viral load test or not? I plan to ask him if he can see if there is a difference this early.

One thing I noticed tonight and it’s not a biggy, but my blood pressure was 124/77. It may be a result of my anxiousness. He has me check it occasionally because it normally runs low because of the Losartan hctz pill I take to help protect my kidney. I’ll check it again in the morning. Do you know if the Harvoni affects BP?

I am tired. I think it’s time to grab a book and call it a night.
Enjoy yours! : )

[Roger]

If you haven't had a FibroSure blood test, get one - it will tell you anything you want to know as well as your liver condition.  A nephrologist is best. I know urologists think they know everything about kidneys, but I'll take a nephrologist and day.

You should have had a viral load test and staging prior to Harvoni. If you did, most doc's are ordering your first set of blood tests at week 2. I think they want to see your kidney and liver function more than they do V.L. at the 2 week point.  Then they do it again at the 4 week mark.

Ask your kidney doc for any test you want at that time - or that your hepatologist didn't order.  It's good to ask questions of both, as they both know what they know, and you might remember 'other' things inbetween appointments.

[kate0b1]

amj1951 AKA meredith, good job getting that first pill down, it's all gravy now! it sounds like yours docs have a good handle on everything they need to watch.

kate

[Amj1951]

Good Morning Roger and Kate. I am at day 2 and I feel great! (knock on wood!)

Roger she did that and a 100 other tests. I know she tested for everything right down to cancer. Both doctors post online so I can see everything right away and the accounts are linked together so they each see each others tests, etc too. It even has my internist's information there too but he's not really involved in anything right now other than regular stuff. Plus another added benefit (I think so at least) is they know each other so they talk too.

If he see's me once a month and she does too then I'll get tested every two weeks which makes me feel a lot more comfortable. But one thing I hate is that NEEDLE! I have my favorites when I have blood work. There are a couple which I'm sure you've all ran into the 'type' that shouldn't be allowed to poke a orange : )

I keep a very general diary and I thought I would put whatever happens that day in it so I can take with me to appointments. Its easier for me to remember that way but so far... so good!

Btw.. my BP went back down over night to low again... so I am hoping it was only my nerves.

Roger what week are you at? Any other side effects that they do not list?

[Roger]

I'm on week 6 or 7 (?).  No other side effects.  All is really pretty easy with this Tx.

[Amj1951]

That's great Roger. I saw on another post you mentioned your doctor told you to slow down (not exact words) but mine has not told me that. Did it come later in the treatment? I wonder if I need to ask about it. My work is not stressful but I do walk and ride a bike 3-4 times a week. I would think the exercise would be good, but you mentioned gardening which I would think would be very relaxing for you? (Maybe I am too early in the treatment?!?)

[Roger]

It's a bit better now, but for that first bottle  of pills I was getting pretty fatigued.  It came in waves.

[Amj1951]

Hi Roger, I keep waiting for the fatigue, or something to hit but it hasn't. I seem to have even more energy than normal. I am hoping I sleep better tonight and if not, then maybe that's my side effect?!?

I am making a nice pot of split pea soup. Its quite cold here! Did you hear they got snow/ice in Jacksonville Fl? I guess they will need to add some socks to the flip flops : )

I hope you have a great evening!

[kate0b1]

meredith, I'm glad you are still feeling well, i just finished week 3, 9 more to go. Once I got past the first week and realized I really didn't have any side effects that were terrible I really mostly stopped thinking about the sides and just started worrying about my labs lol (trying to get that under control). I was just thinking about what kind of soup to make this w/e, I made two huge pots last w/e so I have some to put up, so i guess split pea it is, thanks

[Amj1951]

Hi Kate, The split pea is pretty darn good. I was talking to my mother about soups/stews. Why do we cook more in the winter, especially things like chili?  That's probably a topic by itself : )

Side effects, I thought I would breeze through, but yesterday and last night were retched. I've had a problem sleeping since starting the pills, but yesterday I guess I got cold and I could NOT get warm and it seemed my joints were sore, not hurt, just sore. When I went to bed, I slept from 9 to 12 then started waking up on the hour until 3 and I woke with a headache for the first time and it was a doozy. I took 1 Tylenol, went back to sleep and woke at 430 drenched in sweat, laid there.. dozed and woke at 530 still drenched... at which time I got up, showered, and here I am. The headache has receded. Its like its out there on the edge, but not really bothering me.  I don't want to take another Tylenol if I don't have to.

Have you or anyone else experienced any of that? During the day I've had a lot of energy so I think if I could avoid the nights I would be ok : ) When I talked to my treatment coordinator yesterday about not sleeping well and she said to either take 25mg of Benadryl or Melatonin which is natural. I wondered about the Tylenol PM, but she said to NOT take that. I did not go back out so maybe I'll grab some today. I would think the Melatonin would be a better choice being natural.

You said you've started worry about the labs. Are you worried you wont show clear at 4 weeks like many of the others? I bet you will! I don't think the doctors are concerned about it because its at the end of the treatment that will matter the most, but I think its good on OUR psych to see the number drop. I bet you are going to be fine. I sure hope so!

Let me know how your split pea soup comes out!
I hope everyone has a great day.

[kate0b1]

ugg I hate to cook, i cook on the grill almost always and if there is more than three ingredients I'm not making it lol, the only exception to that is soup/stew, i weirdly love making them (i do however love to eat).
I worry about the labs because i was a rapid responder to triple therapy and was UND the whole terrible time but relapsed pretty quickly (really bad day). Im pretty confident that my 4 week labs will be good, I'm just already working about the 12 week post tx. Part of me wants to know next week and part of thinks it doesn't make a difference it at the end it comes back, i know this docent make any sense, it's just hard to get my head where it should be.
Sleep- I worked 7pm to 7am for a million years (lots of coffee going on there), when i had trouble sleeping i always used benadryl, i got the 25mg and broke them in half so 12.5 mg, (baby here), (*disclaimer, I'm not recommending anything here, just letting you know what worked for me lol). I weirdly wake up at exactly 4am almost every night, I'm pretty sure this is because i am a women of age lol, i don't want to take hormone replacement (chicken) so i just tough it out, i also kind of think the meds have made it almost a little easier (kept that 4am, what ever thats about).
I did have chills/achy one day last week, I took one tylenol and that seemed to help. I will take a day here or there with chills compared to months of h/a chills, i used to take my shot on thursday, and friday night i would be in bed with an icebag and piles of blankets (i'm such a hot date).

[Amj1951]

Bless your heart! When I read stories of the other treatments they sound horrible and when it doesn't work it must have been devastating!

I have a magnet on my frig that says "It is what it is" and its true : ) Its hard to live by that and have someone say don't worry. I suspect as I get closer to the 4 week mark I will start wondering myself but I hope you will think positive! MANY that have done previous treatments are clearing on the Harvoni. We HAVE to believe it will work.

Maybe you should read more stories? Reading the stories on here and encouragement from you all is what helped me down that first pill. I read stories every day and it makes me feel more positive when I am waking thru out the night or not sleeping at all.

We can do ANYTHING for 12 weeks!

I am going to try the melatonin tonight and also buy the Benadryl in case that does not work, but my kidney doctor said he'd prefer me try the melatonin first. I saw you can get pills or liquid. I thought I'd talk to the pharmacists. I don't like things that taste bad so I'll probably go with the pill unless he tells me its tasteless.

FOOD! I love food and I love to cook. I divide my soups like the split pea into servings and freeze it otherwise I get burned out if I eat to many bowls. I was making a grocery list and am thinking of doing a pot of collards. Do you like greens? A big bowl of greens and a piece of cornbread. I am not a breakfast eater so I am trying to make myself eat either oatmeal or yogurt. I prefer a good cup of coffee. I like to grill too but I am such a weeny about the cold and its cold in Texas right now! I am currently warm and have no desire to feel those chills again.

Ok....... have fun : )

[kate0b1]

I love greens if they are cooked well but I don't know how to cook them, is there more than 3 things involved?
I think once I get past the first lab it will be better and my anxiety about labs will ease up (at least thats what i'm hoping) if not every lab time you guys will have to peel me off the ceiling (advanced warning).

[nicole_1234]

Hi Amj,

I had a lot of trouble sleeping the first week and did enjoy more energy in the day, but felt anxious and edgy at night. I had been taking melatonin before tx to help on restless nights (think I always had insomnia, maybe hep c related) but for what it's worth my nurse who's in charge of the hep c department/treatment at Kaiser Permenente told me not to take it with Harvoni. Since it's so new they can't really be sure what drugs interact including herb and natural medicine and even St Johns Wort is contraindicated.

Anyway, I'd just look in to it beyond one doctors advice. My nurse is probably just airing on the side of caution. My doctor prescribed me Ativan which I took for 2 weeks because of anxiety but I stopped because it started to make me really sad, I don't want to get addicted, and I don't want anything to mess with the tx. Although I'm sure the doctors know more than me about how certain things interact.

I think for many people the added energy is a sign the drugs working and it's hard to sleep, and I've read a lot of people that have the same that have the same experience as me, that a couple weeks in the body gets used to the drug and sleep becomes easier.

I would take warm bath before bed give myself warm sesame oil massages and use aromatherapy to call myself down as well as meditation twice a day and that's really helped me, along with short walks to get some exercise and the occasional light yoga class.

And yes lots of water!

Nicole

[Mugwump]

Side effects, I thought I would breeze through, but yesterday and last night were retched. I've had a problem sleeping since starting the pills, but yesterday I guess I got cold and I could NOT get warm and it seemed my joints were sore, not hurt, just sore. When I went to bed, I slept from 9 to 12 then started waking up on the hour until 3 and I woke with a headache for the first time and it was a doozy. I took 1 Tylenol, went back to sleep and woke at 430 drenched in sweat, laid there.. dozed and woke at 530 still drenched... at which time I got up, showered, and here I am. The headache has receded. Its like its out there on the edge, but not really bothering me.  I don't want to take another Tylenol if I don't have to.

Have you or anyone else experienced any of that? 

Definitely not to the extent you are describing. It took about a week for me to start to feel any real effects other than a bad case of gas that drove my wife out shopping! I did not sleep well but I was up having to take a leak every 2 hours without a let up. I backed off on the coffee and tea and just drank water and even though the need to pass urine and gas did not let up and is still greater than normal I put it to the fact that I was drinking a tonne of water and perhaps a part of Harvoni treatment is meant to make you pass fluids quickly.

Having an extreme case of gas is another question, unless rapid unrestrained methane expulsion is another way the body is discarding a huge load of dead virus particles ;-)

The headaches have never been severe enough to take meds and because I have stage 4 cirrhosis I am avoiding any drugs at all. For me keeping my mind active studying music and working around the house has been my drug of choice and it has worked wonders.
 
After 6 weeks things are leveling out but I have had bouts of anxiety due to lack of sleep. I am overweight but not obese and just perhaps we all respond differently to some extent. I have become a tad overbearing and because of that a bit of a pain to be around at times. But this is almost normal for my personality so most people who know me just think that I am being my usual obnoxious self with a little sharper wit and acerbic sense of humor. 

Essentially I am turning into an old curmudgeon, but I have earned that right having survived HCV 1a this long, all the while keeping my sanity and sense of humor.

If having a sharper wit is a side effect of Harvoni then I am all for it!

The usual holiday pressure to put on Christmas meals was a strain at times.

I was worried about my blood pressure at first as the Harvoni started to cause me to drink more and more fluids. In general having to urinate constantly like a type 2 diabetic, which I am not, also triggered a dry mouth but if I felt dry mouth and the associated anxiety then I just drank a little more water and sure enough the headache and feelings of tension in my muscles would very quickly dissipate.

Over the past 2 weeks I have notice my heart rate beginning stabilize at a lower rate than it has been in years. It is now consistently at around 60-70 bpm resting. It was over 70 for years when I am not working or exercising as much as I should.

I sincerely hope your side effects pass soon as the strain on the system does not seem to be as bad on Harvoni and you should be able to have a better overall function levels and thus more stable digestion and hydration early on in the treatment.

Keep the faith this drug is working for many and there is no reason why it should not work for you!

Kind Regards and Best Wishes
Eric

 


 

[dragonslayer]

Hi Kate, The split pea is pretty darn good. I was talking to my mother about soups/stews. Why do we cook more in the winter, especially things like chili?  That's probably a topic by itself : )

Side effects, I thought I would breeze through, but yesterday and last night were retched. I've had a problem sleeping since starting the pills, but yesterday I guess I got cold and I could NOT get warm and it seemed my joints were sore, not hurt, just sore. When I went to bed, I slept from 9 to 12 then started waking up on the hour until 3 and I woke with a headache for the first time and it was a doozy. I took 1 Tylenol, went back to sleep and woke at 430 drenched in sweat, laid there.. dozed and woke at 530 still drenched... at which time I got up, showered, and here I am. The headache has receded. Its like its out there on the edge, but not really bothering me.  I don't want to take another Tylenol if I don't have to.

Have you or anyone else experienced any of that? During the day I've had a lot of energy so I think if I could avoid the nights I would be ok : ) When I talked to my treatment coordinator yesterday about not sleeping well and she said to either take 25mg of Benadryl or Melatonin which is natural. I wondered about the Tylenol PM, but she said to NOT take that. I did not go back out so maybe I'll grab some today. I would think the Melatonin would be a better choice being natural.

You said you've started worry about the labs. Are you worried you wont show clear at 4 weeks like many of the others? I bet you will! I don't think the doctors are concerned about it because its at the end of the treatment that will matter the most, but I think its good on OUR psych to see the number drop. I bet you are going to be fine. I sure hope so!

Let me know how your split pea soup comes out!
I hope everyone has a great day.

Trying to understand why your adviser told you its ok to take Benedryl but NOT Tylenol PM since they both have the identical antihistamine which is the component responsible for their sleep inducing properties: Diphenhydramine.  I can only assume its the acetaminophen which she is advising you not to take, therefore..   Incidentally, if the diphenhydramine works for you, you can get it through a number of over the counter products targeted at insomnia, available in products of different names, online.

[Amj1951]

Good Morning Everyone! I really enjoy reading how things are going for everyone. I bought the 1mg of Melatonin and took it last night. I also made sure to finish my water by 8pm and only sipped on some tea till bedtime and I slept like a log!!

Nicole - I read what you said about your nurse saying not to take it, but mine said to take it. I think your right on they are not 100% sure what is good or safe and what is not. I personally think not becoming dependent on anything on or off treatment is a good thing.

Tonight unless there is a headache which its completely gone right now I wont take anything and see what happens. I did turn my heat down to around 65 last night and maybe that helped too. Right now its back up to 80 in here. I am a WEENY about cold weather. I much prefer warm weather!

ERIC.. you talk about gas. I haven't had that problem, but do you think it could be the foods your eating contributing to it? I have heard some people are more affected by things as simple as a cucumber or cabbage, not just 'beans'? I am NO expert.. but maybe your just looking for some alone time and don't know it?!? ha! : ) I am just teasing : ) There has to be a little humor : )

I am definitely going to the bathroom more than normal but I think that's part of the Harvoni? That is on my list of questions.. to find out if it has a bit of a diuretic in it? I can almost see my water bill creeping up : )

On the whole I feel so much better today. A little sleep goes a long way : ) I hope you are all having a great start to your day.. just think we are one day closer to the end of this disease!!

[Amj1951]

Trying to understand why your adviser told you its ok to take Benadryl but NOT Tylenol PM since they both have the identical antihistamine which is the component responsible for their sleep inducing properties: Diphenhydramine.  I can only assume its the acetaminophen which she is advising you not to take, therefore..

Hi Dragonslayer. I really do not know why they said that. Maybe its the amount of acetaminophen? They may think we wont add the amount of acetaminophen in Tylenol PM to any normal Tylenol we take and they are worried we will take too much? I hope that made sense.

As I read other stories I find every doctor does things a bit different. I think for US.. it would be nice if there was one set of do's and don'ts's but in the real world that doesn't happen. I think with the Harvoni being so new, they are learning through 'us' and my fingers are crossed we all get A+!! : )

[dragonslayer]

Amj, I usually consult first with the Harvoni prescribing document to check for coadministration prohibitions.  If I dont find guidance there, Ill check here: http://www.hep-druginteractions.org/interactions.aspx which has been recommended on this forum.  Here's what is said about diphenhydramine:

"Coadministration has not been studied but based on metabolism and clearance a clinically significant interaction is unlikely. Diphenhydramine is a substrate and inhibitor of CYP2D6 and ledipasvir/sofosbuvir do not affect this pathway. However, diphenhydramine should be used with caution in patients with moderate to severe hepatic impairment. "

I have serious problems with insomnia.. Ideally, I would coadminister nothing while on Harvoni... But the body needs sleep, and Im sure going largely sleepless for 8 wks isnt terribly favorable for a positive outcome nor for mental state well-being.  So, Ill try and sleep without taking anything, and if thats not working, Ill rotate over the counter products which work for me with one sleep prescription which I have, using the overriding principle of taking the lowest possible dose which works, and, if a dose that has been working stops working DONT increase the dose.  Thankfully, through this rotation scenario, Ive been able to avoid building up a tolerance to anything; something Im very cautious about and cognizant of.  One night, I may take a quarter of a 10mg ambien.  The next I might take a diphenhydramine..  Sometimes, 5-htp works.  Sometimes, I take nothing as Im able to fall asleep, and sometimes, nothing works.   Also, I take my Harvoni around 9-10 am, and any sleep meds at about midnight, trying to increase the length of time between coadministrations and Harvoni and  my odds that nothing will interact badly with it. Over all, Im averaging about 5 hrs sleep per night, which obviously isnt great, but isnt much different than what I was getting prior to Harvoni.  Im very active, spending an avg of 1.5- 2 hrs per day in the gym 7 days/wk.  Ive reduced the number of nights Ill use diphenhydramine mainly because I  dont like the way it usually leaves me groggy the entire next day.  It definitely works, but Id rather sleep less than deal with the grogginess most days.  Ive increased the number of nights using nothing, at least until Ive completed harvoni, which will be done in 9 more days, yay!   Over all, after almost 7 wks, energy levels are definitely up, and am looking forward to my post treatment bloodtest in about 10 days.  Ive been sick twice while on the Harvoni; once with a bad cold, and once, last week, with a stomach bug featuring fever, chills, nausea, and lack of appetite.  Im very reluctant to associate either of those with Harvoni, even though Id usually only get sick like this about once a year, and Ive already had that this year.. Still, I think odds are greater these sickness episoides came from other people.  Best of luck to everybody here!!

[Amj1951]

Hello Kate, I have a cook book that is all about dishes that are 5 or less ingredients. I think it would be perfect for you : ) Greens are good for us and if cooked right are so yummy! Mine are old school and basic and probably not the healthiest. I clean them, tear them apart and put in a pot with water and throw in a good piece of ham or a ham hock. I don't know if your butcher will do it but I can get the ham hocks cut off the bone here. I prefer that. Add some pepper and salt. A good dash of apple cider vinegar, a tablespoon of sugar and cook them down until they are where you like them. I sample a lot! I love to add a bit of pepper sauce once I serve them.. and YUM. You can cook them with out the meat if you prefer too. Its really preference. They are great sautéed with garlic too (That would get you to the 3 ingredients or less : ) Kale is good sautéed with garlic.

You make me think of the first time I cooked them 25 years ago. I was cooking for a big gathering and my grandmother told me since there was so much to clean to put them in my washer and let them soak. I misunderstood. She meant fill the washer and let soak and remove. Instead I ran them through a wash cycle. Needless to say for WEEKS I was pulling collards out of my clothes because they were in tiny tiny pieces. We did not have collards with that meal!! : )

If you decide to make them let me know how yours turn out.

On the anxiety.. I wish I knew how to take yours away. I know coming here helped me tremendously!!! When I get anxious I look for someone else who has gone through what I am currently feeling and it helps. I know too as I get closer to the first test I will get anxious. I suspect everyone does, especially all the ones who've gone through other treatments but it is what it is and its going to work for you : )

Now, go cook some collards.. and the smell alone will distract you  : )

[Amj1951]

Amj, I usually consult first with the Harvoni prescribing document to check for coadministration prohibitions.  If I dont find guidance there, Ill check here: http://www.hep-druginteractions.org/interactions.aspx which has been recommended on this forum.  Here's what is said about diphenhydramine:

"Coadministration has not been studied but based on metabolism and clearance a clinically significant interaction is unlikely. Diphenhydramine is a substrate and inhibitor of CYP2D6 and ledipasvir/sofosbuvir do not affect this pathway. However, diphenhydramine should be used with caution in patients with moderate to severe hepatic impairment. "

I have serious problems with insomnia.. Ideally, I would coadminister nothing while on Harvoni... But the body needs sleep, and Im sure going largely sleepless for 8 wks isnt terribly favorable for a positive outcome nor for mental state well-being.  So, Ill try and sleep without taking anything, and if thats not working, Ill rotate over the counter products which work for me with one sleep prescription which I have, using the overriding principle of taking the lowest possible dose which works.  One night, I may take a quarter of a 10mg ambien.  The next I might take a diphenhydramine..  Sometimes, 5-htp works.  Sometimes, I take nothing as Im able to fall asleep, and sometimes, nothing works.   Also, I take my Harvoni around 9-10 am, and any sleep meds at about midnight, trying to increase the length of time between coadministrations and Harvoni and  my odds that nothing will interact badly with it. Over all, Im averaging about 5 hrs sleep per night, which obviously isnt great, but isnt much different than what I was getting prior to Harvoni.  Im very active, spending an avg of 1.5- 2 hrs per day in the gym 7 days/wk.  Ive reduced the number of nights Ill use diphenhydramine mainly because I  dont like the way it usually leaves me groggy the entire next day.  It definitely works, but Id rather sleep less than deal with the grogginess most days.  Ive increased the number of nights using nothing, at least until Ive completed harvoni, which will be done in 9 more days, yay!   Over all, after almost 7 wks, energy levels are definitely up, and am looking forward to my post treatment bloodtest in about 10 days.  Ive been sick twice while on the Harvoni; once with a bad cold, and once, last week, with a stomach bug featuring fever, chills, nausea, and lack of appetite.  Im very reluctant to associate either of those with Harvoni, even though Id usually only get sick like this about once a year, and Ive already had that this year.. Still, I think odds are greater these sickness episoides came from other people.  Best of luck to everybody here!!

9 more days! I am so glad for you. Are you on a 12 week treatment.. or? Do you go to the gym in the morning or evening? I wonder if the evening affects your sleep? I walk and ride a bike but sadly its been so cold and nasty here I put it on a trainer. I think the exercise helps a lot! I always feel more pumped after riding so I've been riding early instead of in the evenings hoping that will help with the sleep but I am not sure there is a fix while on the Harvoni?!? A comment the pharmacist made when I bought the melatonin was if the Harvoni is what is causing the insomnia will anything really fix the problem until you stop taking it? I think that makes sense.

As far as what hurts us or is bad for us... I think what's ok for the liver hurts the kidneys and what is ok for kidneys hurts the liver so we have to figure out what is the less of the two evils to get us through.

Please keep me updated on your progress as you finish.
Its time for me to do something useful around here. I hope you have a great, symptom free day!

[Mugwump]

ERIC.. you talk about gas. I haven't had that problem, but do you think it could be the foods your eating contributing to it? I have heard some people are more affected by things as simple as a cucumber or cabbage, not just 'beans'? I am NO expert.. but maybe your just looking for some alone time and don't know it?!? ha! : ) I am just teasing : ) There has to be a little humor : )

My heritage is Mennonite and I absolutely refuse to give up my cabbage and beans! LOL

The gas is now down to a reasonable level and I firmly believe that cabbage is a liver friendly veggy as I have relatives that usually are found working a plow out in the fields well into their 80's.

This certainly does not mean I would go out and eat a diet of nothing but cabbage to "cleanse my system" with a new fad diet and thus be able to run our car on the results!

On the serious side though I have been careful to reduce my fatty acid intake and I have no doubt this helps with digestion for those of us who have compromised liver functions. Having a balanced diet still seems to be the best approach to liver health.

Cheers
Eric

[kate0b1]

Meredith, I will look into that cookbook lol, it does sound like its for me, I copied and pasted your greens recipe. I think I will try them next w/e. I made spinach patties today to take to work tomorrow though.

I am doing better everyday with my lab anxiety, probably because i actually have a place here to put it. I made my lab appointment for friday am before work, fridays are crazy busy days for me at work so that should work right?

kate

[Amj1951]

Eric, I think the balanced diet is definitely the way to live, though its hard to stick to it at times. I love cabbage myself and have found a new recipe I've been hooked on for a while. I cut the whole head into 1" slices and lay them on a cookie sheet, sprinkle with salt and pepper, a dot or two of olive oil and put in 400 oven for 30-40 minutes till are browning because 'I' love the browned edges. Done. No mess, no fuss. I roast a lot of veggies. I have found radishes are so sweet when roasted too.

Kate you might enjoy that EASY recipe : ) I have never had a spinach cake. What are in those?

Friday is the perfect day for your tests! I am going Friday too to see my kidney doctor so he can test my kidney and make sure its doing well while on the Harvoni. THAT is my biggest fear.. that it stays healthy enough to finish the treatment, but we must think positive!! Remember hearing.... it requires more muscles to frown than smile? I think its true about attitude too. I think a positive attitude helps our bodies far more than worry : ) You should plan to do something for YOU on the weekend too if you aren't working. A massage sounds good doesn't it?!?

Last night I did not take the Melatonin and I woke a couple of times to go to the bathroom (I think because I did not finish my water by 8 and drank two2 more bottles before bed) but otherwise I slept great. I did take a Tylenol about 6-7 because I had a stiff neck from working at the computer and headache but its gone. I am feeling good right now and I hope you and everyone else are too!

[Mike]

Here's a great cabbage recipe:

1 head of cabbage - chopped
1 medium onion - diced
1-1/2 ts minced garlic
1 15 oz can of diced tomatoes
6 strips of bacon chopped
One 8 oz link of Ekrich skinless kielbasa -chopped
Crushed red pepper to taste
Black pepper & salt to taste.

Chop bacon and cook in heavy sauce pan or dutch oven over medium heat. Once cooked, remove bacon and  add kielbasa and brown in bacon grease. Add cabbage stirring frequently until begins to boil down. Add onion, garlic, bacon, red pepper and can of diced tomatoes (including juices). Cook medium low until cabbage is done. Serve over white rice or noodles.

Best wishes, Mike

[kate0b1]

LOL, that is certainly an easy recipe, although Mikes sounds pretty great for this cold crappy weather, I roast vegis a lot if I'm cooking inside (cause easy), I also keep our bedroom a little cool at night, we turn the heat down to 66 and i have a window cracked, i can not stand feeling stuffy while I'm sleeping, we have a down comforter so it keeps me toasty without being hot. I think you sleep better when its cooler

kate

[Mugwump]

Here is a my families favourite traditional cabbage recipe.

Grannie's secret recipe, which works well as a canned vegetable dish if you have the time to can some up in jars. We make and can our own apple butter and other goodies every year.

So in the spirit of sharing here and to the best of my abilities, is a description of how to best prepare this wonderful cabbage dish  ;-)
.......

Sweet and Sour Purple Cabbage

2 medium sliced yellow cooking onions 1/4 thick inch long sliced
a few tablespoons good quality vegetable oil or butter or a combination of both

2 tablespoons fennel seeds whole or coarse ground, dill seed is not as good as fennel or added whole fennel root vegetable. But some families do use dill or no seasoning if fennel is not available.

Saute in a large pan on a medium heat until the skinny union slices are sweated to caramelized and sweet, a little brown in colour is OK but not blackened like in an onion soup or gravy. LOL

To the sweated onions add I whole 2-3 lb red cabbage shredded in sliced form the same as the onions and continue saute with small amount of water until the cabbage starts to soften, similar to Chinese style steam fry technique.

When cabbage is completely soft and cooked add some pure apple sauce or Mennonite style pure apple butter if available. Apple sauce or apple butter with added cinnamon is not really right in this recipe IMO The really old school way to add apple is to use apple slices in the saute but that takes even more prep work so it is up how much time you have to prepare the dish. Avoid commercial apple products with sulfates as they have a tendency to leave a burning match taste in this dish!

Continue to reduce moisture by steam frying being careful not to burn the dish.

Add a good quality vinegar as a steam fry component but only enough to sour the dish.

Add brown sugar or the sweetener of your choice and to your taste.

If you use salted butter the addition of salt is not really necessary. The whole idea of the dish is to concentrate the vegetable sweetness and flavors and balance it as a sweet and sour.

.....

Labour intensive yes but well worth the work when you see someone smile when they taste it.

We had sweet and sour cabbage with many different meats especially farmer sausages and served as a breakfast condiment as well as a main dish.

There are some very good expensive commercial canned versions of this dish produced in Germany, but nothing compares to having it fresh from the stove. You can even pickle it with more vinegar after cooking to keep it in the fridge for a long period of time but then it is not as good as when it was fresh or properly canned immediately after preparation when hot.

My spouse has some blood pressure issues so we have reduced our salt intake to a sensible level accordingly. This dish is great even without added salt and cabbage does contain some natural plant salts that are highlighted in the cooking process.

Cheers and good health

Eric

PS

After this treatment I really hope I can resume cooking professionally for seniors centers, at least on a part time basis. Over the years working cooking, to me there was nothing more satisfying than watching a senior who has dementia smile as they eat something wonderful that smells and tastes great. Then receive sincere compliments from the care aids who were having trouble getting them to eat anything at all.

[kate0b1]

Holy crap Eric, this sounds amazing, do you deliver? I may have to stick with the cabbage for dummies lol. Maybe when we are all done and don't  have to talk about side effects and ins co's you guys could have cook off and i'll help judge lol (says the girl who loves to eat and hates to cook).

kate

[Amj1951]

ERIC!!! I LOVE THIS RECIPE OF YOURS. I agree with Kate. Can you have mine here by say 6?!? : ) My mother used to make something similar with the apple slices in it and I could make a meal out of it. Thank you for posting it. I am going to make this. I'll let you know how it comes out.

Do you think its better with the whole fennel or if you grind it? I would think whole would be pretty and taste good?!?! Preference?

Are you a Chef for a living? I love watching the cooking shows. I took a baking class at Sur La Table a couple hears ago to learn how to use yeast properly. Its a trick!

Mike's Recipe sounds great too. Fattening but really yummy! I will be trying that one too!!

Kate what part of the country do you live in? I am in Texas and I'm cringing at you leaving a window cracked unless your in Key West : ) I am a real weeny about cold. I have found since starting the Harvoni once I get cold I its hard to get warm and it could be too that we've just had some of our coldest weather yet this winter. There was actually a little frozen 'something' falling when I got up this morning. Not sure I can call it snow but it wasn't rain  : )

Has anyone had any new side effects? I've been ok. Yesterday I did not feel the headache unless I coughed then I felt this ugly pain in my head. I am getting forgetful. I guess that is the brain fog? I use K Cups and I needed some so I thought I'll grab those and call mother. A few minutes later I was standing there trying to figure out what I was supposed to do. It was a really odd feeling! I thought I'll have to start writing things down on posty notes and sticking them on my chest! I am still full of energy and am sleeping fine. So of course one of my first thoughts in the mornings is .. Is it working?!? : )

I hope everyone is having a great day!
Meredith

[Mugwump]

ERIC!!! I LOVE THIS RECIPE OF YOURS. I agree with Kate. Can you have mine here by say 6?!? : )
Do you think its better with the whole fennel or if you grind it? I would think whole would be pretty and taste good?!?! Preference?

Whole fennel is best because the cooking duration softens it to the point where it will not get stuck in your teeth..LOL

Thanks. I have studied food science and apply it to cooking but am more of a ninja home cook with camp and commercial experience.

Timing is really important as with any good cuisine, mise en place technique (good prep work getting ready for the heat) will help with the timing! Cooking time can be as low as 20 minutes, but you cannot leave it unattended or let it scorch.

As to side effects, I suppose the calmer we are during this treatment the easier Harvoni will be to get through. Keeping calm and finding things to keep mind and body active will help relieve the "brain fog" that comes from having Hep C and toxins in your system. My brain fog is clearing and my witts are still intact so as good ol' Alfred E Nueman use to claim "WHAT! ME WORRY?"

Keep the faith stay well hydrated and fed and things will be easier.

Eric

[kate0b1]

merdith, LOL, no i live in the great north east, about 25 miles outside of philly. I have a super down comforter that lives with me and a crazy hairy dog that tries to sleep with us but usually gets kicked out. I have family in texas though and they have been a little whinny about the weather. We have have not had much snow this winter thank god, last winter was hell with snow.  I sleep soo much better when its cool in the room.

sides, the brain fog should lift, I feel like it gets a little better every day (at least I think so lol). The first week I took one tylenol a few of the days and it kept the h/a away, I haven't really noticed any after that. My stomach is queasy now and them but weirdly if I eat something it calms down, and of course our mantra water, water, water.

kate

[Amj1951]

Eric, I will post my results as soon as I make the dish. Possibly tomorrow or Thursday. Need to make a run to the market.
Not sure where you live, but I grow herbs in the spring thru fall. Not much left right but there is nothing like fresh, though we can usually get most things at a place here called Central Market or some use Whole Foods too. I am not much of an organic fan. Never feel the flavor is as good. I am sure many disagree and its probably better for you.. but .. what can I say. : )

I don't suppose we can post pictures on here can we?

Kate your big hairy dog reminds me of my basset hound who loves to sleep side ways on the bed with me. Her butt near my face! 

We flew into Philly once and went to a famous place where they made the hmm what are they called.. the sandwich's with beef and cheese.. and they had these great peppers on top. BRAIN FOG MOMENT : ) Philly cheese steak!! That's it!! Those were pretty good. We were only there for about half a day and saw the liberty bell and took a car down to Atlantic City. I was not impressed with that place.

What area do your relatives live in? I am in Dallas. We whine a lot about the cold. We want just enough to kill the West Nile Virus which wasn't quite as bad this past year. One nice snow would be nice.. then we are ready for spring! I know I am but it sonly what about 69 days till spring?

Just think.. we are all going to beat this disease and walk into spring like a bunch of fresh flowers. : )

Ok time to finish my water and read a while. I hope everyone enjoys their night!

[kate0b1]

good morning Meredith, cheese steaks are the bomb, but most people who live in philly don't go to the two places you speak of though lol, and i hope I'm not offending anyone but I am an ocean city/cape may girl from way back. The only reason i can see to go to AC is to go to a show and then get the he** out. My family in texas lives not far out of dallas, around grapevine area, we have not been out to see them for a few years, I am hoping my daughter and her boyfriend get sent there in october then i will have a reason to talk my husband into going out lol. (and you can make me eric's cabbage dish)

kate

[Amj1951]

Hi Kate, I would love to meet you and make Eric's dish for you or anything else!! : )

I hope you've had a good day. Mine was busy but great. I have had no side effects at all today. I kept wondering did I take a sugar pill??!?!  : ) Do you have days like that? Yesterday wasn't bad either. I keep thinking surely I should feel something.. but I guess if its working I shouldn't complain. I feel strong and alert. No aches or pains.

On one hand I know I am overloading on water and wonder if that is why, but on the other hand I wonder can we wash it out with too much water? I am looking forward to my appointment Friday with the Kidney doctor .. I have a long list of questions that I HOPE he can answer part of. Tomorrow I have an appointment with the dentist. He's supposed to put a permanent crown on where I have a temp. Don't look forward to that at all. I really am a weeny at times : )

Grapevine is about a 45 minute drive, heading toward Ft Worth. I got my jeep there. I am about 10 minutes from SMU if you look that up. More near downtown off 75. Just let me know!

Where we went for the sandwich I am sure was a tourist spot? But it was good. I loved the peppers. We don't see those here. Seems I got one here once and they put mushrooms on it. Not the same.

I feel I have so much energy. I think I'll use it and clean a little bit.
I hope you have a great evening!
Meredith

[kate0b1]

Merdith, good morning, I feel the same way some days, this tx is so easy compared to the last that I sometimes get worried about that (I love having something to stew about). Let me know what he says about the water intake. I go tomorrow am for my labs, I am finally in an ok place about them, although tomorrow could be a whole new story lol
lol

[Mugwump]

Hi Kate, I would love to meet you and make Eric's dish for you or anything else!! : )

I hope you've had a good day. Mine was busy but great. I have had no side effects at all today. I kept wondering did I take a sugar pill??!?!  : ) Do you have days like that? Yesterday wasn't bad either. I keep thinking surely I should feel something.. but I guess if its working I shouldn't complain. I feel strong and alert. No aches or pains.

I assure you the effects are anything but the same as what happened with interferon treatment and my liver panel by extensive assay is almost normal. This is science at work and it is a wonderful truth.

Faith helps but faith in the good will of others is just as important as faith in yourself.
From a Canadian, here is our salute to you south of the border. So delivery of my families cabbage dish is a tad difficult  ;-)>

Keep your stick on the ice!

Eric

[kate0b1]

Eric, weirdly we are going to st paul this summer and were considering going up to canada (so maybe cabbage after all lol), it's so exciting to me to hear everyone talk about the labs and how well they feel, I feel privileged to be apart of great science to be a part of a new world of cure.
kate

[Amj1951]

Hi Kate and Eric. First let me say.. Eric........ I LOVE YOUR CABBAGE DISH!! It came out great!! I did a pork tenderloin with it and wow. I could have just made a meal out of the cabbage.  : ) Huge thumbs up for you  : )

You need to try this Kate!  Not hard at all.. just lay it all out.

Now miss Kate.. tomorrow are your labs and you've been on my mind but I wasn't able to get here till my guests left. I will be thinking of you : ) My appointment is at 10:40am with the Kidney Dr. I wish I were at 4 weeks with you and doing those special labs. I am almost jealous. I was wondering if I might be able to get him to run a VL just to see if anything is going on but since I am only at day 8.. who knows, but I will post if he does... but I wish you luck tomorrow and KNOW you are going to clear this Hep C!!! : )

Anyone have any odd side effects today? I had a little bit of a headache but my day was crazy and I didn't drink one of my bottles of water and I wonder if that might be the case. I think instead of forcing it down I'll just take a Tylenol instead to avoid  waking all night to go to bathroom.

Ok.. Lets all have great thoughts and tomorrow .. we are one day closer!!
Night all!
Meredith

[Mugwump]

Hi Kate and Eric. First let me say.. Eric........ I LOVE YOUR CABBAGE DISH!! It came out great!! I did a pork tenderloin with it and wow. I could have just made a meal out of the cabbage.  : ) Huge thumbs up for you  : )

You need to try this Kate!  Not hard at all.. just lay it all out.

Thank you.

Anyone have any odd side effects today? I had a little bit of a headache but my day was crazy and I didn't drink one of my bottles of water and I wonder if that might be the case. I think instead of forcing it down I'll just take a Tylenol instead to avoid  waking all night to go to bathroom.

Ok.. Lets all have great thoughts and tomorrow .. we are one day closer!!
Night all!
Meredith

If you are slightly under-hydrated then a dry mouth and some mild anxiety might happen, but don't get too concerned, just drink a small amount of water instead of glugging down a 1 liter tankard like some pop crazed teenager with a sugar fix 7-11 slurpie!

We all have a tendency to think more is better but this is not necessarily the case here, it is a question of balance and your system will adjust and the treatment will be a breeze for you.

I already have the tea shirt for not drinking enough liquids then over compensating by glugging down a swimming pool then going to the john at night every 2 hours, which drove my pour spouse crazy for about 4 days early on in this treatment! (we only have one bathroom and it wakes her up when ever I get out of bed at night. LOL)
 
Don't worry about it if you get a little thirsty by not drinking enough water just sip some instead it will make a huge difference and getting up to go to the john in the middle of the night is not that much trouble really IMO a very small price to pay for clearing this lousy virus from your system!

Cheers and best wishes
Eric

[kate0b1]

Meredith, I am off to get my labs (thanks for the support), I had a weird episode of vertigo yesterday it lasted only a moment, i meant to take my bp @ work but was so busy i forgot, i'll try and check it today, I refilled my water bottle instead lol

kate

[Amj1951]

Kate, I hope you talk to the doctors when your there about the vertigo. Maybe its was a bit of the excitement for today : ) I really hope today is a good stress free day.

Eric, All I wake up is my dogs. Its pretty pathetic when you wake them and they are looking at you like.. Excuse me?!? My friend gets down on the weekends and he can sleep through anything BUT and I think its because I do sleep alone most the time, I wake almost everything he moves and its been 15 years in April so I know how your wife feels, but I bet she is fine. Like you said it is a VERY small price to pay to rid ourselves of this. (I still got up twice last night even though I missed one bottle)

On my water, I have bottled water right now. I am finding its easier for me to make sure I am getting X amount minimum. I missed one of the 16.7oz size and I do recycle the bottles so maybe the green people wont yell to loudly at me. I only missed one of them but I feel great this morning. I am setting them out each morning and know.. that is the minimum I MUST drink!!

I did send a note to my liver doctor coordinator a couple days ago asking about the water and they said what I am drinking is more than enough. I think the rules of half your body weight is a good thing. Agree / Disagree? They said there was really no set amount but they are hearing from patients (as here) the more you drink, the less severity of the headaches.

Now another topic. I read, from someone in another topic area that in Seattle, if you are not coming up completely cleared at 4 weeks they are discussing adding 4 additional weeks on. Maybe I misunderstood this.. but if not what do you think of it?

Ok, All positive thoughts today. 
Have a great day : )
Meredith

[kate0b1]

hey meridith, i made it safely to the lab place lol, i was so busy at work today though i forgot about getting them as soon as i got there. I can't remember how long it takes to get the results so I'm trying not to think about it at all. No further vertigo, but i forgot to check my bp again, I'm gonna try to remember on monday when i get to work.

I have been carrying around the same water bottle all day, i just keep refilling it, I think i may start adding some lemon or lime or cucumbers or anything lol, its getting deadly boring just water all day.

kate

[Amj1951]

Kate, how did your doctor visit go? Mine was good. We really just chatted. My doctor is quite excited I am on this treatment. He says I am his first patient on it. Instead of doing labs today, I am going to do the 24 urine on Sunday and go back by Monday and I'll do blood work then. I suspect I'll be his Guiney Pig for the next 12 weeks and that is fine by me since he'll be watching my kidney like a hawk! :

On the water, he agrees as long as your kidney function is good, then drinking half your body weight in ounces is great. He said it wont hurt to drink more or just add other things.. like my coffee in the morning.
I brought up to him about what I saw about Seattle adding 4 weeks for those who did not clear. He said he thinks it something worth talking to the liver doctor about but of course he said YOU will clear it : )

Another interesting things he said. Was that they are learning from the trials etc.. that once cleared from the Hep C... those who had an issue with their kidneys leaking protein.. that it is a SLOW process, but over time they are seeing an improvement which would solve my kidney issue. So now I have two reasons to get rid of the Hep C.

Some of my questions he said I would have to talk to my Liver doctor about so its all good.

I had a touch of a headache today that is now gone, but I did not eat until around 3 because I was so busy so I think that's why I got it.

I hope everyone has had a great day!
Meredith

[kate0b1]

merdith, I did not have to go to see the doc today, just labs, I am his first pt on this also, so kinda fun to be the first. That would be so cool if it helped the kidney function to that could make a difference for so many people. Its so amazing to be part of this don't you think? I think it makes sense to add another 4 weeks if your not cleared at 4 weeks, I don't know the gods of treatment think about it but it makes sense to me.
I always get a headache if i don't eat, i can't eat a lot at one time, but damn if i can't nosh all day lol

kate

[Amj1951]

hey meridith, i made it safely to the lab place lol, i was so busy at work today though i forgot about getting them as soon as i got there. I can't remember how long it takes to get the results so I'm trying not to think about it at all. No further vertigo, but i forgot to check my bp again, I'm gonna try to remember on monday when i get to work.

I have been carrying around the same water bottle all day, i just keep refilling it, I think i may start adding some lemon or lime or cucumbers or anything lol, its getting deadly boring just water all day.

kate

Hi Kate! I am so glad you got it taken care of. Yes, check your BP! I wonder how long it takes to get the results? Are you able to see your labs online? I can and like I can find out things quicker. Have you ever read drinking hot water with lemon is good for you? I think all the really skinny rich women here do that   : ) I have not tried it needless to say : ) ha! I like lemon in my water but on these bottles I find if I stand and just drink the whole bottle at once its best. I drink water because I need it but I do not care for it. There is something about drinking the water you need every day.. versus being on this treatment and HAVING to drink x amount you know? For me its different. Its like a job.

I have to go back out so have a great evening.
Meredith

[Amj1951]

merdith, I did not have to go to see the doc today, just labs, I am his first pt on this also, so kinda fun to be the first. That would be so cool if it helped the kidney function to that could make a difference for so many people. Its so amazing to be part of this don't you think? I think it makes sense to add another 4 weeks if your not cleared at 4 weeks, I don't know the gods of treatment think about it but it makes sense to me.
I always get a headache if i don't eat, i can't eat a lot at one time, but damn if i can't nosh all day lol

kate

I think we are both on here right now : ) I loved hearing him say that because he has always said he cant figure out why I am having the problem because everything else is good. So if its the Hep C causing at least part of it.. that would be so great! To be totally healthy. Can you imagine!! : )

I would love to hear others take on the extra 4 weeks and it'll be interesting to ask the Liver doctor about it. It kind of makes sense. We know there is no 100% cure for everyone, but maybe this is the ticket? If your clear during the 4th or 8th week, then you are clear but if your numbers are still low at even 8 wks, I'd think its a indicator to go ahead with 4 more weeks? Yes just call me Dr Meredith  ha! I know I would be happy to do 4 more weeks if needed, but with that said, I am hopeful we both clear it along with everyone else and there will be no need for extra.

Ok I have to go!
Meredith

Honestly until recently I have never really given Hep C  much thought. But now that I am on the treatment I think its very exciting.

[Mugwump]

Kate, I hope you talk to the doctors when your there about the vertigo. Maybe its was a bit of the excitement for today : ) I really hope today is a good stress free day.

Eric, All I wake up is my dogs. Its pretty pathetic when you wake them and they are looking at you like.. Excuse me?!? My friend gets down on the weekends and he can sleep through anything BUT and I think its because I do sleep alone most the time, I wake almost everything he moves and its been 15 years in April so I know how your wife feels, but I bet she is fine. Like you said it is a VERY small price to pay to rid ourselves of this. (I still got up twice last night even though I missed one bottle)

On my water, I have bottled water right now. I am finding its easier for me to make sure I am getting X amount minimum. I missed one of the 16.7oz size and I do recycle the bottles so maybe the green people wont yell to loudly at me. I only missed one of them but I feel great this morning. I am setting them out each morning and know.. that is the minimum I MUST drink!!

I did send a note to my liver doctor coordinator a couple days ago asking about the water and they said what I am drinking is more than enough. I think the rules of half your body weight is a good thing. Agree / Disagree? They said there was really no set amount but they are hearing from patients (as here) the more you drink, the less severity of the headaches.

Now another topic. I read, from someone in another topic area that in Seattle, if you are not coming up completely cleared at 4 weeks they are discussing adding 4 additional weeks on. Maybe I misunderstood this.. but if not what do you think of it?

Ok, All positive thoughts today. 
Have a great day : )
Meredith

Meredith I think that 8 weeks is the standard treatment, you should find out from your specialist why they are trying a 4 week on you. Like I have said do not fear this be pro-active and informed. If you clear in 4 weeks of Harvoni then great  BUT that is not the recommendation from Gilead so you need to find out why you are not on an 8 week program. You most likely are on 8 weeks just your doctor will let you know by your liver panel and an viral load, please do not stop the meds without talking to the right support people first. Make certain you receive your next months meds on time and follow the instruction carefully that are on the big sheet from Gilead on the pill bottles!

Sounds to me that you are doing just fine so don't fear or sweat the little bumps along the way. This does seem to be the miracle that all of us with this terrible disease have waited and prayed for!

In all kindness and respect
Eric

[Amj1951]

Meredith I think that 8 weeks is the standard treatment, you should find out from your specialist why they are trying a 4 week on you. Like I have said do not fear this be pro-active and informed. If you clear in 4 weeks of Harvoni then great  BUT that is not the recommendation from Gilead so you need to find out why you are not on an 8 week program. You most likely are on 8 weeks just your doctor will let you know by your liver panel and an viral load, please do not stop the meds without talking to the right support people first. Make certain you receive your next months meds on time and follow the instruction carefully that are on the big sheet from Gilead on the pill bottles!

Sounds to me that you are doing just fine so don't fear or sweat the little bumps along the way. This does seem to be the miracle that all of us with this terrible disease have waited and prayed for!

In all kindness and respect
Eric

Hi Eric, I may not have worded my thoughts right and I apologize for any confusion. (I am finding this morning MAYBE one of MY side effects is being too outspoken?!? : ) But I am on the 12 week treatment, not the 8 week.

I was asking about the extra 4 weeks if you don't clear during the 4 or 8 or even 12 week blood test because I saw it mentioned in one of the other topics. I was just curious about it and peoples thoughts on it if it is something they are looking at.

I would not dream of stopping the treatment. I am so excited I am able to do it. I was telling Kate earlier. I read so much about the fatigue that others are feeling, I wonder at times if I am on a sugar pill because I am the opposite. I am so full of energy its almost crazy. Before treatment I was not exhibiting any side effects that I know of so I wonder if that has anything to do with how I feel now? Its supposed to be beautiful here today so I am planning to take my bike out and hopefully ride off some of this energy.

Any new recipes you'd care to pass on to try? Your last one was definitely a hit!
Meredith

[Mugwump]

Hi Eric, I may not have worded my thoughts right and I apologize for any confusion. (I am finding this morning MAYBE one of MY side effects is being too outspoken?!? : ) But I am on the 12 week treatment, not the 8 week.

I was asking about the extra 4 weeks if you don't clear during the 4 or 8 or even 12 week blood test because I saw it mentioned in one of the other topics. I was just curious about it and peoples thoughts on it if it is something they are looking at.

I would not dream of stopping the treatment. I am so excited I am able to do it. I was telling Kate earlier. I read so much about the fatigue that others are feeling, I wonder at times if I am on a sugar pill because I am the opposite. I am so full of energy its almost crazy. Before treatment I was not exhibiting any side effects that I know of so I wonder if that has anything to do with how I feel now? Its supposed to be beautiful here today so I am planning to take my bike out and hopefully ride off some of this energy.

Any new recipes you'd care to pass on to try? Your last one was definitely a hit!
Meredith

I am sorry I miss read, I am on the 24 week because of my level of cirrhosis, What you are experiencing is normal liver functions for the first time since you were young! Be cheerful and sing, I certainly am in a mood to sing and certainly do as I study music.
You will be passing more bile and there will be times that you will feel hungry. For me when I get too energetic  I feel a stitch in my side like I did when I was young and did the 400 meter in highschool or played a full period of hockey without a break because I was the main defense-man on our team.
I feel young again and it is wonderful.
.....................................
Pork meat ball and egg plant tofu
For two.
(adjust ingredients according to the number of people and how many woks you can use at the same time!)
This is a restaurant recipe so it can be scaled up or down but I have notated the version here for two servings of 8 ounces of meat each. A seniors portion would be 6 oz of meat but the egg plant is not a concern so you can reduce the meat amount to 12 ounces instead of 16 and make the dish in exactly the same manner described.

1 lb lean ground pork
3 ounces minced ginger root
3 cloves minced garlic
3 thinly sliced cloves garlic for stir fry
two medium sized purple egg plants (Chinese) diced in 1/2 inch cubes
1/2 lb firm tofu diced the same as the egg plant
1/4 cup rice sweet chinese vinegar usually black in colour
Small amount of cashews or red skin peanuts if  guests or person cooking has no problems with them.

1 yellow onion diced the same size as the tofu and egg plant
 1/4 cup mild low salt soya sauce
1 teaspoon Chinese 5 spice powder
Semble olek? If available or a good Chinese hot sauce to taste NO CHILI POWDER! an original Louisiana hot sauce is good here too but no hint of any Mexican style spice or the dish will not taste quite the way it should.

small amount of the sweetener of your choice

Dry tofu pieces with a paper towel

Mix soya sauce, hot sauce, vinegar, 5 spice powder and sweetener in a prep bowl and put in the firm  tofu for at least 20 minutes

To the ground pork and one egg and the minced ginger and garlic with some biscuit crumbs as a filler.
Make into small meat balls that stick lightly together and pre fry carefully in a separate hot fry pan, when they are cooked put them aside as a mise en place. Do not worry if some of the meat balls leave bits of cooked ground pork it is part of the character of the dish which you add in to the final mix.

Into a small amount of hot fat in a wok go the egg plant and the garlic slices and cashews or peanuts Add the onions as the egg plant begins to cook. Toss with a wok tool until smoking hot and the egg plant is almost transparent in colour while keeping the onions firm.
Toss in the meat balls  and tofu along with the marinade that it is in.
Cover and reduce heat to simmer till all is cooked but not mushy.
Thicken dish while simmering with tapioca starch powder not CORN STARCH and serve.

Serve with any good quality rice or fried rice of your choice.

..........
I usually serve this dish with a mushroom and shrimp fried rice or a Singapore noodle to contrast the style of the original dish which is Cantonese, However the Hunan make this same dish but much hotter and with a bitter super hot carbon wok scorch flavour. 

Invite friends over for this one and you might have to charge an admission fee because it is a Vancouver BC Chinese restaurant secret dish and one of my favourite, next to 8 treasure chicken which is extremely hard to make and requires more chops than chop sticks. One of my best friends was a great restaurant cook out west where I live. I taught him and in turn he taught me about Chinese techniques. He passed away a few years back.


I am extremely happy that things are working out well for you,

Eric

[Amj1951]

I feel young again and it is wonderful.
.....................................
Pork meat ball and egg plant tofu
For two.
(adjust ingredients according to the number of people and how many woks you can use at the same time!)
This is a restaurant recipe so it can be scaled up or down but I have notated the version here for two servings of 8 ounces of meat each. A seniors portion would be 6 oz of meat but the egg plant is not a concern so you can reduce the meat amount to 12 ounces instead of 16 and make the dish in exactly the same manner described.

1 lb lean ground pork
3 ounces minced ginger root
3 cloves minced garlic
3 thinly sliced cloves garlic for stir fry
two medium sized purple egg plants (Chinese) diced in 1/2 inch cubes
1/2 lb firm tofu diced the same as the egg plant
1/4 cup rice sweet chinese vinegar usually black in colour
Small amount of cashews or red skin peanuts if  guests or person cooking has no problems with them.

1 yellow onion diced the same size as the tofu and egg plant
 1/4 cup mild low salt soya sauce
1 teaspoon Chinese 5 spice powder
Semble olek? If available or a good Chinese hot sauce to taste NO CHILI POWDER! an original Louisiana hot sauce is good here too but no hint of any Mexican style spice or the dish will not taste quite the way it should.

small amount of the sweetener of your choice

Dry tofu pieces with a paper towel

Mix soya sauce, hot sauce, vinegar, 5 spice powder and sweetener in a prep bowl and put in the firm  tofu for at least 20 minutes

To the ground pork and one egg and the minced ginger and garlic with some biscuit crumbs as a filler.
Make into small meat balls that stick lightly together and pre fry carefully in a separate hot fry pan, when they are cooked put them aside as a mise en place. Do not worry if some of the meat balls leave bits of cooked ground pork it is part of the character of the dish which you add in to the final mix.

Into a small amount of hot fat in a wok go the egg plant and the garlic slices and cashews or peanuts Add the onions as the egg plant begins to cook. Toss with a wok tool until smoking hot and the egg plant is almost transparent in colour while keeping the onions firm.
Toss in the meat balls  and tofu along with the marinade that it is in.
Cover and reduce heat to simmer till all is cooked but not mushy.
Thicken dish while simmering with tapioca starch powder not CORN STARCH and serve.

Serve with any good quality rice or fried rice of your choice.

..........
I usually serve this dish with a mushroom and shrimp fried rice or a Singapore noodle to contrast the style of the original dish which is Cantonese, However the Hunan make this same dish but much hotter and with a bitter super hot carbon wok scorch flavour. 

Invite friends over for this one and you might have to charge an admission fee because it is a Vancouver BC Chinese restaurant secret dish and one of my favourite, next to 8 treasure chicken which is extremely hard to make and requires more chops than chop sticks. One of my best friends was a great restaurant cook out west where I live. I taught him and in turn he taught me about Chinese techniques. He passed away a few years back.


I am extremely happy that things are working out well for you,

Eric

Oh my this sounds fabulous Eric!! I don't know if I have ever had a dish with both meat and tofu in it. I had a vegetarian friend years ago who turned me onto tofu and I learned it is so good at picking up flavors. And I love eggplant!!

I think this is a good weekend dish for company. Your right. I really like sticky rice. What do you think? I guess if not that then a plain jasmine rice would work? I am thinking I would prefer something plainer the first time so we can experience all the flavors of the dish?

I think I can get all these ingredients here at my market and if not there is a decent Oriental store not far. When I shopped today they were making fresh vegetable spring rolls with really thin layers of avocado around them. I could not resist one with a good spicy peanut sauce!  I LOVE good food.

Talking about this.. there is a great Thai place near me that makes a rice dessert that they use the sticky rice and it has a great .. vanilla bean? flavor. Have you heard of this? It is served warm. I would love to get an original recipe for it.

Are you coming to Texas this year by chance? : )
Meredith

[Mugwump]

I think this is a good weekend dish for company. Your right. I really like sticky rice. What do you think? I guess if not that then a plain jasmine rice would work? I am thinking I would prefer something plainer the first time so we can experience all the flavors of the dish?

 Talking about this.. there is a great Thai place near me that makes a rice dessert that they use the sticky rice and it has a great .. vanilla bean? flavor. Have you heard of this? It is served warm. I would love to get an original recipe for it.

Are you coming to Texas this year by chance? : )
Meredith

Ah! desert tofu is an art. Guilty I admit I buy it pre-made as it involves the making  of a soft tofu from soya milk and is done best in quantities not small portions. Instead try a vanilla egg custard in small sweet a light lard tart shell. Which is a classic dim sun desert basically English in origin but much loved by the Hong Kong crowd.

Whoops I see you meant a sweet rice pudding. I avoid too much sweets in Oriental restaurants as I find that is how you burn a hole in your wallet and put on a rubber tire in a big hurry. LOLx2

Thai rice or sticky is fine! But I use nutty flavoured calrose or texas short grain brown done up in low fat chicken stock as a pilaf with peas as a main rice dish if I don't make a Cantonese fried rice dish.

The brown sticky rice requires much more time but if done right it is stellar because it maintains an essentially nutty flavour.

I don't think I can take you up on the invite to Texas as finances would be a ROYAL PITA I was a bit of hippy when younger so who knows if they would even let me across the border in this day and age without a passport! I am a Canuck to the core.

But thanks for the compliments and
Keep your chops up and your stick on the ice :-> 
Eric

[Amj1951]

Eric, I have never had brown sticky rice. I'm not sure I've seen it either. I will have to look for it. Its probably better for you than the white too.

On that tire.. I know what you mean. Its a fight! I try to stay away from potato's, and bread when I can. I think given a choice I actually prefer rice.

As for coming to the USA.. haven't you noticed, we let almost anyone in : ) ha! (Maybe you have to live here to fully understand that.)

Meredith

[Katie]

I love how you guys are sharing recipes!  Too fun.  I love to cook to so maybe sometime when I am in the mood I will share too.  I have been trying to eat a lot of salmon as I smoked and canned a bunch this fall.  I am so lucky to be living in Alaska and we have so much good seafood.  I have halibut and shrimp and geoduck (large clams) and yet I find myself craving beef or pork.  Crazy, isn't it.

I do have a great shrimp recipe that is easy and healthy and also my smoked salmon corn chowder...but that is pretty rich with cream added. Let me know if you are interested.

I am definitely trying Eric's cabbage as I love it. Just made a cabbage, kale, broccoli vinaigrette coleslaw,and added pecans and dried tart cherries to have with my salmon and it is wonderful.

I passed my halfway mark on my 12 week treatment, and just so you know 12 weeks is the recommended length of treatment.  Even if you are UD at 4 weeks, I would insist on 12.  The test for detection does not go to 0, so your VL may be at 30, 20,10 or 16 and come back as UD. This depends on the sensitivity of the test and it seems that there are tests that are more or less sensitive, as I see some saying <15 and some <50.  I need to check that out.  This means if you quit your treatment early, they can start to replicate again.  Will the insurance company then approve another treatment? I don't want to take that chance.  Viruses are Sci-Fi and scare the crap out of me.

I LOVE science and know we all can be cured.  So stay proactive and get the best possible chance you can to beat this monster!

Katie

[Katie]

Eric:  I love BC!  I did a research project for 6 years in Alaska which is right on the BC border.  We would ferry to Prince Rupert and drive about 8 hours to our research site.  BC is beautiful country and miss that area....miss that project too.  It was a dream come true.

Being HepC free is a dream come true as well and can't wait!

Katie

[kate0b1]

katie, I am a little jealous you get ALL the salmon, I love salmon and will have all the salmon recipes please , but remember to keep them simple lol unlike Eric and Meredith i hate to cook (I'm working on getting delivery).
Ps how are you feeling these days, I hit 42 this thursday !
kate

[Amj1951]

I love how you guys are sharing recipes!  Too fun.  I love to cook to so maybe sometime when I am in the mood I will share too.  I have been trying to eat a lot of salmon as I smoked and canned a bunch this fall.  I am so lucky to be living in Alaska and we have so much good seafood.  I have halibut and shrimp and geoduck (large clams) and yet I find myself craving beef or pork.  Crazy, isn't it.

I do have a great shrimp recipe that is easy and healthy and also my smoked salmon corn chowder...but that is pretty rich with cream added. Let me know if you are interested.

I am definitely trying Eric's cabbage as I love it. Just made a cabbage, kale, broccoli vinaigrette coleslaw,and added pecans and dried tart cherries to have with my salmon and it is wonderful.

I passed my halfway mark on my 12 week treatment, and just so you know 12 weeks is the recommended length of treatment.  Even if you are UD at 4 weeks, I would insist on 12.  The test for detection does not go to 0, so your VL may be at 30, 20,10 or 16 and come back as UD. This depends on the sensitivity of the test and it seems that there are tests that are more or less sensitive, as I see some saying <15 and some <50.  I need to check that out.  This means if you quit your treatment early, they can start to replicate again.  Will the insurance company then approve another treatment? I don't want to take that chance.  Viruses are Sci-Fi and scare the crap out of me.

I LOVE science and know we all can be cured.  So stay proactive and get the best possible chance you can to beat this monster!

Katie

Hi Katie, Your are more than welcome to share. What kind of research do you do if you don't mind me being nosey?

I want the recipe for the "smoked salmon corn chowder...but that is pretty rich with cream added" <-- there is a PLEASE behind that : ) That sounds heavenly. Do you happen to have a great Dill sauce recipe?

The cabbage recipe Eric posted is great and it is not hard Miss Kate : ) It seems it. But once broken down... it goes quick. Most is prep.

I have this little metal thing that seals with a lid and you can smoke smaller amounts on the stove without the smell penetrating the house. Its ok, but not like a real smoker. I have a grill but have not gotten the art of smoking things.

Fly Fishing in Alaska is on our (my friend and I) bucket list once we get good enough to make it worth the trip. Right now we fish for trout so we cant even imagine landing a salmon, though I am sure its part of every Fly Fisherman's dream. In September is good for Pike? Or.... ?

Kate! 42... Was this your Hep C result or your Birthday and you did not tell anyone? If your Birthday, Happy Belated! : ) I am 10 years ahead of you. Woo hoo : )

I am doing a 24 urine today. My kidney doctor says "its so cool right now you can store it outside" and all I can picture is my basset hound dragging it all over the yard! ha! It will be interesting to see the results he gets with the Harvoni in my system. Fun Times.

I hope everyone is having a good symptom free day.
Meredith

[kate0b1]

merdith, good morning I want the corn chowder one also, i love soup and especially corn chowders, I wish i was 42 again lol, weirdly this Wednesday is my b-day but a little further out than 42, ill be 56, i am hoping my labs come back that day (good omens and all that lol). What i meant was I will be 42 pills in, so half way done treatment!!! I feel better this am, i felt terrible last evening, I'm sure it was my lack of water, so I'm gonna try and be good today, happy sunday everyone

kate

[Mugwump]

merdith, good morning I want the corn chowder one also, i love soup and especially corn chowders, I wish i was 42 again lol, weirdly this Wednesday is my b-day but a little further out than 42, ill be 56, i am hoping my labs come back that day (good omens and all that lol). What i meant was I will be 42 pills in, so half way done treatment!!! I feel better this am, i felt terrible last evening, I'm sure it was my lack of water, so I'm gonna try and be good today, happy sunday everyone

kate

...........

Smoked fish corn chowder

Seasonings; Fine white pepper or course cracked black pepper, Sea salt to taste

2 cups diced onions
1 cup fine dice green pepper, or red or yellow or combination of all three
fine dice celery but not too much
1 lb (about 3 cups) fresh from cob or frozen sweet corn
Saute until transparent and put aside do not over cook

White roux pre made mise en place for thickening http://en.wikipedia.org/wiki/Roux

Warm 1 quart of milk or cream depending on how fatty you want the dish. Do so slowly in a double boiler until hot but not boiling, add roux to thicken to desired thickness.

Add some flaked smoke fish stirring carefully to keep the flakes or chunks intact add pre saute mix of corn and veggies
If you use a fish or other sea food that requires cooking make sure it reaches food save temps with a proper food grade thermometer. 160f throughout the dish is the standard and it should stay for at least 5 minutes above 160.

If you do chicken in the same recipe, which is a corn chowder chicken ala king, pre cook the chicken to food safe!

Avoid any sour cream or vinegar in this recipe and to make certain it does not curdle. A small amount of baking soda helps to keep the dish from separating when cool and stored in the fridge.

You can add diced steam cooked small potato or even turnip
In Newfoundland this is the base for a salt cod CHOWDAR or in New England a clam chowdaar LOL in the Southern US it is the base for many mild milk based white sauce stews and soups.

The key is pre cooking and creating a real roux rather than commercial thickeners! And paying careful attention to timing and temperatures during cooking. The fat in the dish is in the roux mixed and pre cooked in the flour and that is the secret to success!

Season to taste

 
..................

Eric
HCV is a boring topic that we must pay attention to but good cooking is fascinating IMO

 

[Katie]

A little different than Eric's, so you have your pick!  Both sound good.

Smoked Salmon Corn Chowder from Katie
2 slices bacon, diced small
1/2 pound red potatoes (used 5 med), skin left on, diced into 1/2" pieces, about 2 cups 1 medium yellow onion, diced
3 carrots, thinly sliced, or cut into half moons if large
4 cloves garlic, smashed and minced (have used freeze dried to taste)
salt and pepper to taste
1-2 cup clam juice (you can substitute chicken broth but clam is better)
2 teaspoons fresh thyme leaves (use dry just a sprinkle of dried)
3 tablespoons all-purpose flour
2 1/2 cups milk
1/2 cup heavy cream
1 cup frozen, whole kernel corn (I usually add more as I like corn)
8-10 ounces hot smoked Wild Alaska Salmon, flaked, about 1 1/2 cups  (if you don’t have a lot I have used 5 oz smoked.  Probably could have used more but it was delicious.)
1 tablespoon fresh dill, chopped  (freeze dried works too)
 6-8 sliced mushrooms
In a large, heavy bottomed dutch oven or similar pot add bacon and cook over medium heat, stirring occasionally until crispy.  Stir in the onion, garlic, carrots, mushrooms and celery. Season with salt and pepper to taste.  Cook, stirring occasionally until the onions & celery have softened and become translucent. Add the thyme, potatoes and clam juice.

Simmer until the potatoes are tender, about 15-20 minutes. Whisk together 1/2 cup milk and the flour and then add it to the pot. Allow to simmer for 1-2 minutes.

Add the remaining milk and cream. Season again with salt and pepper to taste. If it looks like your chowder is going to be too thick for your taste, add a little water at this point. Bring to a very low simmer and add the corn, *salmon, and dill. Cook until just heated; the corn and salmon should be heated through. DO NOT BOIL   Serve immediately.
If re-heating leftover chowder, heat over very low heat to avoid scorching cream.

Make sure the celery is tender.  It’s the last thing to be done.
Note: adding salmon juice with the milk can curdle the milk.  Still tastes wonderful but isn’t as pretty and DO NOT BOIL.  I add the salmon juice with the veggies when sautéing them.

*You can keep a small amount of the salmon aside to sprinkle on the top with some chives or green onions to make a beautiful presentation.

[Katie]

Hi Katie, Your are more than welcome to share. What kind of research do you do if you don't mind me being nosey?

Hey Meredith,  I did salmon field research for 10 years in SSE Alaska, living in wall tents, naming our camp brown and black bears and doing physical work that was more than my frame could handle. ( and am suffering for it now)....but it was worth it.  I just loved it!     Moved into the office for another 16 years and really enjoyed training technicians and analyzing data but the politics got old.  I retired a little over a year ago and am truly enjoying my time of freedom.  Now I have the time to heal and I am grateful for everything I have.

Katie (68 yrs old and on day 46 of Harvoni)

[Katie]

I love Shrimp Scampi but it has so much butter, so I came up with this to satisfy the taste and now I prefer it.  Super simple and a big hit!

Enjoy!

Broiled Shrimp  “Scampi”

Peel raw shrimp  Arrange Shrimp on foil lined cookie sheet or broiler pan like stacking spoons in portion sized rows (big portions)
Sautee in 2 tbls of butter
•   Finely chopped onion and garlic
•   Sliced mushrooms

Spoon sautéed combo over shrimp.
Add finely chopped green and red pepper to top
Shake Frank’s Louisiana hot sauce and squeeze fresh lemon over shrimp and broil until done (only about 5 minutes).
Serve with rice, cucumber salad and garlic bread for a delightful meal.
You can take a large spatula a lift the row out and the presentation is very pretty!

[Amj1951]

I am like way off, Kate! But jealous. I wish I were further in on the treatment but it’ll get here! Wednesday is your Birthday! You’re an old fart too like me : ) ha! I am teasing you  : ) Seems we are all about the same age actually within a few years.

Katie, your research WORK actually sounds like it was fun though I am sure it was demanding work. As soon as my brain fog lifts, I’ll have more questions.. like what did it involve? The purpose was too….?

All the recipes sounds great and are appreciated. I think Katie’s sounds more involved so knowing me I will try that one first, then Eric’s. I am planning to make Eric’s Pork meat ball and eggplant tofu dish this coming weekend, so I need to keep it light this week.

I know I am normally long winded but it’s about dinner time here and though I feel great, my brain is like somewhere else tonight (I am hungry) .. so I am keeping it short. I am sautéing some kale with garlic and I have a chicken roasting and tomorrow I’ll make chicken salad out of the rest with some walnuts and grapes.

Ooo.. Just in case your all wondering, I am thoroughly enjoying the 24 hour urine I am having to do : ) NOT! There is nothing like having to REMEMBER to grab the jug out of the frig on the way to the bathroom or.. even better once your in there.. remembering you have to run to the frig and get it!

Meredith

Eric.. I don't think the Hep C is boring so much as we all seem to have about the same side effects and FOOD is so much more fun! : )

[kate0b1]

Hey guys, well for sure I'm starting with Eric's its the first one I didn't get dizzy reading lol. Meredith I'm still laughing about the dog carrying around your jug, I hope the results are good, this is your first lab/pee since being on treatment right? How long will we have to wait for the results? And Katie your career sounds pretty intense/exciting.  Talk soon kate

[Katie]

Enjoy your cooking.  Wish I could pop over and share.  Sounds good!

My research work was like a dream come true and I enjoy hard, physical work.  It has just come back to remind me how much fun I really had!   

Katie

[Katie]

Hey guys, well for sure I'm starting with Eric's its the first one I didn't get dizzy reading lol. Meredith I'm still laughing about the dog carrying around your jug, I hope the results are good, this is your first lab/pee since being on treatment right? How long will we have to wait for the results? And Katie your career sounds pretty intense/exciting.  Talk soon kate

The chowder just has a lot of ingredients but once that is prepped it really isn't that confusing. Maybe print it off. The shrimp is really quick and easy, once they are peeled. The peeling is a chore for me with my arthritic wrists but it's good to keep them moving.

Another easy favorite salmon recipe is making salmon nuggets.

I skin and check to remove the bones and then chunk it up. 
I pat dry the pieces and lightly toss them in some mayo and lemon juice
and then toss them with cracker crumbs
and fry them in olive or coconut oil. 

They cook up really fast and keep turning them until golden brown.  You could probably broil them, turning them once if you don't like frying.  I find the mayo helps retain the cracker crumbs instead of wasting a whole egg (with milk), since it is just for me.  I hate wasting stuff!

That's it for recipes for awhile but cooking is good for the soul!  No processed food allowed in my house.

Katie

[Amj1951]

I am sorry I miss read, I am on the 24 week because of my level of cirrhosis, What you are experiencing is normal liver functions for the first time since you were young! Be cheerful and sing, I certainly am in a mood to sing and certainly do as I study music.
You will be passing more bile and there will be times that you will feel hungry. For me when I get too energetic  I feel a stitch in my side like I did when I was young and did the 400 meter in highschool or played a full period of hockey without a break because I was the main defense-man on our team.
I feel young again and it is wonderful.
.....................................
Pork meat ball and egg plant tofu
For two.
(adjust ingredients according to the number of people and how many woks you can use at the same time!)
This is a restaurant recipe so it can be scaled up or down but I have notated the version here for two servings of 8 ounces of meat each. A seniors portion would be 6 oz of meat but the egg plant is not a concern so you can reduce the meat amount to 12 ounces instead of 16 and make the dish in exactly the same manner described.

1 lb lean ground pork
3 ounces minced ginger root
3 cloves minced garlic
3 thinly sliced cloves garlic for stir fry
two medium sized purple egg plants (Chinese) diced in 1/2 inch cubes
1/2 lb firm tofu diced the same as the egg plant
1/4 cup rice sweet chinese vinegar usually black in colour
Small amount of cashews or red skin peanuts if  guests or person cooking has no problems with them.

1 yellow onion diced the same size as the tofu and egg plant
 1/4 cup mild low salt soya sauce
1 teaspoon Chinese 5 spice powder
Semble olek? If available or a good Chinese hot sauce to taste NO CHILI POWDER! an original Louisiana hot sauce is good here too but no hint of any Mexican style spice or the dish will not taste quite the way it should.

small amount of the sweetener of your choice

Dry tofu pieces with a paper towel

Mix soya sauce, hot sauce, vinegar, 5 spice powder and sweetener in a prep bowl and put in the firm  tofu for at least 20 minutes

To the ground pork and one egg and the minced ginger and garlic with some biscuit crumbs as a filler.
Make into small meat balls that stick lightly together and pre fry carefully in a separate hot fry pan, when they are cooked put them aside as a mise en place. Do not worry if some of the meat balls leave bits of cooked ground pork it is part of the character of the dish which you add in to the final mix.

Into a small amount of hot fat in a wok go the egg plant and the garlic slices and cashews or peanuts Add the onions as the egg plant begins to cook. Toss with a wok tool until smoking hot and the egg plant is almost transparent in colour while keeping the onions firm.
Toss in the meat balls  and tofu along with the marinade that it is in.
Cover and reduce heat to simmer till all is cooked but not mushy.
Thicken dish while simmering with tapioca starch powder not CORN STARCH and serve.

Serve with any good quality rice or fried rice of your choice.

..........
I usually serve this dish with a mushroom and shrimp fried rice or a Singapore noodle to contrast the style of the original dish which is Cantonese, However the Hunan make this same dish but much hotter and with a bitter super hot carbon wok scorch flavour. 

Invite friends over for this one and you might have to charge an admission fee because it is a Vancouver BC Chinese restaurant secret dish and one of my favourite, next to 8 treasure chicken which is extremely hard to make and requires more chops than chop sticks. One of my best friends was a great restaurant cook out west where I live. I taught him and in turn he taught me about Chinese techniques. He passed away a few years back.


I am extremely happy that things are working out well for you,

Eric

ERIC......... Good Morning : ) Tonight I am making your Pork Meatball and Eggplant and Tofu Dish for my friend and a couple of other friends I invited over. I am excited!

I am planning to triple the recipe and I thought I would make some fresh Veggie Spring Rolls with a spicy peanuts sauce to start. I feel those are pretty light and not fattening as long as you don't eat all the peanut sauce! : )

Tomorrow I'll post the rave reviews I am sure you'll get!

How are things going for you? I am still full of energy and waking early so I am hoping (Fingers crossed) that is a side effect because I hate getting up at 430-530 everyday.. though I did sleep through the night a couple days ago. I was telling Kate I gorged.. truly gorged on Garrett's Chicago popcorn last night and maybe I am still full of sugar. As good as it was going down I hate this feeling right now! I suspect my liver does too as well as my rear end!!  ha!

Katie, if you are around, I used my stove top smoker and did a small piece of smoked Salmon this past week. I made a dill sauce but I don't think mines as good as it can be. Perhaps next weekend or when my friend comes back down again, I'm going to try your Smoked Fish Corn Chowder recipe. Yesterday I saw a interesting dish when I stopped at Itzy's. Its a deli like place here in Dallas, but they had a pasta dish, made with a Alfredo sauce with vegetables and grilled salmon that looked good but looked so fattening. I had to resist not sampling it! : )

I am going to get busy. Need to get this popcorn moving!
Have a great day everyone!
Meredith

[Amj1951]

ERIC!! Everyone loved dinner last night!! 

Next will be your Chowder Miss Katie!

Thank you!
Meredith

[NancyA]

I had my first blood test after 3 weeks on Harvoni.  NO HCV detected,  AST 17, ALT 21.
This is unbelievable after blood transfusions 43 years ago.  Thank you Gilead.  Thank you United Healthcare.  I would love to open a bottle of champagne, but I guess that's out of the question.

[MEG]

Wow Nancy! That's incredible. Congratulations! 

I'm having my 4 week on-treatment labs on Wed.....fingers crossed.

I received my blood transfusion 41 years ago...it's hard to wrap my mind around the fact that this medicine can wipe it out of our blood with such blazing speed.  Wishing you continued UD!