Author Topic: last pill (Read 28509 times)

beto · « **on:** October 03, 2015, 02:11:22 pm »

Looking at the lone soldier...the last Harvoni warrior. I will miss you, you tiny beacon of hope. Truly, as stated before, I wished that I had pushed for 24 weeks...alas too late for that. Now is when I dig down deep for that belief that indeed my bugs have all moved on to viral heaven or, hell, whatever the case may be and SVR awaits me at the next turnstiles of recovery.

Those of you that have moved into the stage of EOT know well the feeling. The glass of RO water sets next to an orange (or pink, male color blind) diamond in the rough, with the initials "GSI" (which I assume means Gilead Science, something ). For the last and final time I will imagine Gilead guns firing salvos in the direction of a waning or, long dead foe.

The treatment battle is won. The war continues...with only my own army of T-cells and immune factors, as the garrisons of protease and polymerase inhibitors pull out. I can only imagine the victory flag.

Here goes..."gulp"...goodbye ol' friends. Please find your way to the untreated millions awaiting your assistance to put this long bad dream to a timely end. Fellow Heppers, let's all continue to work beyond our own SVR's (or potential ones) for those fighting for these meds. This will sound corny, however, we are, all of joined at the hip...never relent until every last one of us (all geno-types) pass that finish line.

So glad I could share the moment with my new family. Rock on survivors...Our time!!

Bree · « **Reply #1 on:** October 03, 2015, 02:37:11 pm »

Way to go Beto!!! Congratulations on finishing treatment! It's an interesting journey on the other side. I have a very fond affinity for Harvoni. I actually miss it. It has given me the promise of a better future! Rock on!!!

KimInTheForest · « **Reply #2 on:** October 03, 2015, 03:04:25 pm »

Right on, Beto! Way to go!!!

kim

julu49 · « **Reply #3 on:** October 03, 2015, 04:00:22 pm »

You've done it, Beto! Congratulations and happy new life.

Philadelphia · « **Reply #4 on:** October 03, 2015, 05:48:01 pm »

My completely unscientific opinion is that you've got this. All the very best and keep posting on "The Other Side" ie this forum, too.

beto · « **Reply #5 on:** October 03, 2015, 07:25:22 pm »

thanks all...here's to the harvoni graduates of 2015

KimInTheForest · « **Reply #6 on:** October 03, 2015, 09:00:42 pm »

Quote from: beto on October 03, 2015, 07:25:22 pm

thanks all...here's to the harvoni graduates of 2015

That's so cool! We're the Class of 2015!

kim

Bree · « **Reply #7 on:** October 03, 2015, 09:27:31 pm »

Just think we can have virtual class reunions!

KimInTheForest · « **Reply #8 on:** October 03, 2015, 09:35:59 pm »

Quote from: Bree on October 03, 2015, 09:27:31 pm

Just think we can have virtual class reunions!

I look forward to that! I never finished high school (although I did later go to university). So I never had a graduating class or class reunions. 61 years old isn't too late to start the tradition!

kim

julu49 · « **Reply #9 on:** October 04, 2015, 12:29:59 am »

Me too. I got hep C during the last quarter of school right along with 3 of my friends. I was hospitalized the longest. I was sooooo sick. Weighed 72 lbs. and was bright orange. I couldn't even swallow my own spit. Needless to say, I went nowhere for about 3-4 months. I wanted to just take extra credit or make up the classes I was doing poorly in anyway, but nope. No go for a college prep school. No graduation but I know everyone and have been invited to all of the reunions. Amazing no one knew. So, my advice, get yourself a fb page and find some old friends. That's how it happened with me. You can still go to your reunion. No need for the grad cap.

KimInTheForest · « **Reply #10 on:** October 04, 2015, 01:03:19 am »

Quote from: julu49 on October 04, 2015, 12:29:59 am

Me too. I got hep C during the last quarter of school right along with 3 of my friends. I was hospitalized the longest. I was sooooo sick. Weighed 72 lbs. and was bright orange. I couldn't even swallow my own spit. Needless to say, I went nowhere for about 3-4 months. I wanted to just take extra credit or make up the classes I was doing poorly in anyway, but nope. No go for a college prep school. No graduation but I know everyone and have been invited to all of the reunions. Amazing no one knew. So, my advice, get yourself a fb page and find some old friends. That's how it happened with me. You can still go to your reunion. No need for the grad cap.

I quit high school when I turned 15, at the start of 10th grade. My life was taking me in other directions that seemed more relevant at the time than compulsory education. So I cannot say I am particularly interested in re-connecting with what might have been my graduating class, had I turned off my brain and endured another 3 years of enslavement. But I do like this idea of all of us recent Harvoni graduates being the Class of 2015 here on the forums.

Very sorry to hear about your extreme illness with Hep C requiring hospitalization when you were still in school, Julu. Sounds brutal.

Best,
kim

julu49 · « **Reply #11 on:** October 04, 2015, 01:31:54 am »

Oops, sorry, Kimi I had a whole different scenario going on in my head. Actually, I went to ONE HS reunion. That was enough. All of my friends are uh, gone.
julu

KimInTheForest · « **Reply #12 on:** October 04, 2015, 11:09:45 am »

Quote from: julu49 on October 04, 2015, 01:31:54 am

Oops, sorry, Kimi I had a whole different scenario going on in my head. Actually, I went to ONE HS reunion. That was enough. All of my friends are uh, gone.
julu

No prob, Julu. You'll be part of this Class of 2015, won't you? Finishing your Harvoni this year? Now THOSE will be "class reunions" I would look forward to .

kim

beto · « **Reply #13 on:** October 04, 2015, 11:57:32 am »

Indeed. I went to my 40 yr reunion. What a nightmare. Anyway, part of the weekend I participated in was a second reunion with folks from my drama group from high school. That part was fantastic...as if 40 years ago was yesterday. That is because these people were the ones that mattered. I could not remember anyone in the main reunion group, I was a stranger in a strange land there. At the Thespian encounter, we just took up where we had left off like a bunch of giddy kids. Anyway, this group of happy heppers are in the same ilk as the drama group. A similar experience of openness, playfulness and support.

As for my 1st day off the meds, I'm kinda jonesing. My plastic mon-sun pill dispenser is empty. In two hours I would normally be taking my harvoni with glee. I guess it is like your last day on crutches...you knew the day was coming...you wanted it to come, but damn 'can my leg handle it?' When the pills were here, I always had the feeling and knowledge that my body was being supported and protected from the scourge returning to set up up residence once more.

Good news is I don't worry if I remembered to take my harvoni...that ol feeling; "did I take it...I think I did...if I did and I take another I will overdose...oh my...if I didn't, hep C will have a resistance and come back and get me...oh no!!" Big Happy Face Here!

KimInTheForest · « **Reply #14 on:** October 04, 2015, 12:17:10 pm »

Welcome to the other side, Beto!

kim

beto · « **Reply #15 on:** October 04, 2015, 12:33:06 pm »

Thanks Kim,

Did you have the hebbie-jeebies? Any after effects?

KimInTheForest · « **Reply #16 on:** October 04, 2015, 12:49:09 pm »

Quote from: beto on October 04, 2015, 12:33:06 pm

Thanks Kim,
Did you have the hebbie-jeebies? Any after effects?

I did find myself stressing the first few days post-tx about forgetting to take my pills - like: "OMG, it's 11 am! I'm 2 hours late on my pills!" That sort of thing.

And then of course I got very sick post-tx with some mysterious malaise that I think was actually treatment related rather than foreign pathogen. I was bed-ridden for about 6 weeks. The illness part is over (thank goodness!) but I am still trying to pull out of the anemia.

I had some strange changes to my taste/flavour sensitivities during treatment, which I am happy to say are finally abating post-tx, although it has taken many weeks. During treatment, I because hypersensitive to sweet and salt, to the point where I could not eat fruit or cheese. I have always been a BIG eater and lover of all fruit and high-quality cheeses. So that was very hard on me and contributed to my weight loss during treatment. But now finally, at nearly 10 weeks post-tx, that heightened flavour sensitivity to sweet and salty seems to be disappearing. (Btw, I never add sugar or salt to any food I prepare, and I don't buy any prepared food - I make everything from scratch. So fruit and cheeses are the primary source of sugar and salt in my diet.)

cheers,
kim

beto · « **Reply #17 on:** October 04, 2015, 01:48:49 pm »

Hi Kim,

Oh yes I remember now of your ordeal. So sorry it has been rough. I too have had that insatiable apatite...I have felt like a hobbit. Yes, carbs, protein and fats. I have not stepped on the scale yet. Not too bad though. Also, the intense sweet and salty overdrive has been intermittent. One time I swore that aspartame was put in my veggie juice at Whole Foods. That's kinda what it was like, natural sugars came off like over powered artificial sweeteners. This was bad for me since my olfactory senses are important to my work (fine wine...no I don't swallow...spit it out). There were other flavor qualities that were skewed...like acidity and astringency.

I think riba makes it a little harder, but gives an edge against relapse. Also both drugs affect hemoglobin, ferratin and glucose...so a double whammy of lowered blood sugar and anemia are at play. Glad you have recovered if not fully. Another month and you will be sprinting up mountains.

peace

KimInTheForest · « **Reply #18 on:** October 04, 2015, 02:14:19 pm »

Quote from: beto on October 04, 2015, 01:48:49 pm

I think riba makes it a little harder, but gives an edge against relapse. Also both drugs affect hemoglobin, ferratin and glucose...so a double whammy of lowered blood sugar and anemia are at play. Glad you have recovered if not fully. Another month and you will be sprinting up mountains.
peace

Haha! Well, I would very much LIKE to be sprinting up mountains a month from now. So here's hoping! Positive visualization and all that.

best,
kim

byebyeC · « **Reply #19 on:** October 04, 2015, 03:16:32 pm »

Congratulations Beto!

Enjoy this moment, imagine your body creating whole, new, vibrant cells to replace all your old ex-"friends".

Lookin' forward to seeing you on the other side!

Cheers!

Cal · « **Reply #20 on:** October 05, 2015, 03:43:07 am »

Good on you Beto., gold star and I'll see you on the other side too in 5 weeks! I keep imagining a crowd of us huddled together in a waiting room 'on the other side' . Cal

KimInTheForest · « **Reply #21 on:** October 05, 2015, 11:45:47 am »

Quote from: Cal on October 05, 2015, 03:43:07 am

Good on you Beto., gold star and I'll see you on the other side too in 5 weeks! I keep imagining a crowd of us huddled together in a waiting room 'on the other side' . Cal

Yeah, that "Other Side" is getting pretty crowded - which is a GOOD thing. We're all getting cured! See you there soon, Cal.

kim

Cal · « **Reply #22 on:** October 06, 2015, 03:33:03 am »

Thanks Kim, keep a seat for me! Cal

charlie0000 · « **Reply #23 on:** October 07, 2015, 02:56:23 pm »

I took my last pill on 10/05/2015 after 56 days of treatment. I took a blood test on or around 10/2/2015 which came back negative for the infection. I miss the Harvoni pill and do not know why. Perhaps it was a mental weapon against the virus which has haunted me since 1984. I go for another test in three months. When considering my glass half empty or half filled options I am neither. I will declare myself the victor until told otherwise. If bad news comes my way I will just continue fighting for a future with smiles.

beto · « **Reply #24 on:** October 07, 2015, 03:39:50 pm »

Hey Charlie...congrats and thank for the post

Just knowing we are not alone is so helpful. For 20 or so years (had it for 40yr) I kept to myself and avoided forums...now you can't shut me up.

Yes, miss em'. Every swallow was a pinch of hope that I never thought I would live to see. I like your attitude, never relent my friend. I too, and many others, are living with the wait and see game once again. Let's just make a pact right here and now that we just beat this thing come hell or highwater.

Best of luck to you

hepboy1 · « **Reply #25 on:** October 07, 2015, 07:39:09 pm »

hello to anyone did anyone you kno or you take herbs while on harvoni especially milk thistle
im about to kick off the harvoni and I was told not to take no herbs

beto · « **Reply #26 on:** October 07, 2015, 08:00:38 pm »

Hepboy,

I can't, and I am not going to recommend anything, however, I did continue milk thistle while on Harvoni and I have finished and have so far responded well to the meds. Milk thistle was not listed by Gilead in their 'herbs to avoid'. St Johns Wart was highly contraindicated though, as well as other herbs in the same genus. I have heard a general caution of botanical avoidance, but not sure where that came from. Many folks have taken the attitude that they do not want to do anything that might in anyway affect the meds and to be on the safe side just, discontinue all supplements for duration. This is safe advice. I also used a few other supplements that were not contraindicated. Again this was my choice after careful study of the available literature.

But, of course, ask your doc. I am just disclosing what I did.

hepboy1 · « **Reply #27 on:** October 07, 2015, 10:36:26 pm »

thanks yes im at stage 4 cirrhosis ,weak as hadies mental fog sleepy and just started on milk thistle a while back, but my viral load was 2.5 million several years ago then after one year of 4 to 6oo milligrams of selenium each day and prayer 12 bags of green tea a day and for any other reason unknown . the viral load was only 68ooo several weeks ago . anyway I start tomorrow on harvoni I could of started tonight but im tired fearful and don't want to face any hypersensitivities yet so tomorrow ill dive in unfortunately im hypersensitive to drugs but I do eventually build up a tolerance what other supplements do you take ? how have your side effect been?

beto · « **Reply #28 on:** October 07, 2015, 10:57:24 pm »

Hepboy

I have always been very sensitive to drugs and chemicals. Hardly any issues with Harvoni. I had some great successes with alternative things and have always been a natural health type. Harvoni is the real deal and it is going to cure you. You also might have a slight reversal of your F4. I have seen and heard of this happening and have posted several studies that favor this possibility. Congrats getting the medication. The 1st week is the toughest, but some have practically no side effects...grant it, some do. If you are doing only the Harvoni you will likely not have too many issues, if at all. Good luck.

hepboy1 · « **Reply #29 on:** October 07, 2015, 11:45:46 pm »

thank you and may you stay free of this demon virus ive had from 91 for sure , your the second person I come across who took milk thistle threw treatment im hoping it will dumb down any side effects and after effects as I have read many have had

Cal · « **Reply #30 on:** October 08, 2015, 12:15:55 am »

Hepboy,
I've had Hcv for near 35 years now and I have always taken Milk Thistle, (I didn't through tx though I was too paranoid. I'm on Viekira and it's very drug specific about what you can and cannot take) but I digress, I have no fibrosis at all. In fact I reversed some from 6 years ago till last measure some 6 weeks ago. I really believe in it and there has been lots of published studies on it's value. Good luck my friend. Cal

hepboy1 · « **Reply #31 on:** October 08, 2015, 02:50:45 am »

THANK YOU ALL INFO HELPS AND IS WELCOME

drummerman · « **Reply #32 on:** October 09, 2015, 11:51:44 pm »

Quote from: beto on October 03, 2015, 02:11:22 pm

Looking at the lone soldier...the last Harvoni warrior. I will miss you, you tiny beacon of hope. Truly, as

So glad I could share the moment with my new family. Rock on survivors...Our time!!

Cool Ode to the Last Pill Beto!!

Best of luck in post treatment land!

dm

drummerman · « **Reply #33 on:** October 10, 2015, 12:05:48 am »

Just noticing the comments on sups. I used to be on alot of em, and got all into the the Chinese medicine/diet philosophy. I think it helped, but it was too difficult diet wise.

Then I got on this product:
http://www.heptech.com/
(hope I'm not breaking forum rules)
Check out their research on their website. I was/am impressed.

Anyway, I felt like this really helped and was surprised at how slow my liver damage progressed. Course I know that it can progress slowly in some people. Anyway , I had to quit the product as it is very expensive. But I would go back on it if I relapsed. At this point I don't think I will ever retreat. Not unless they come with something that is absolutely 100%, no fail, effective.

After I quit the heptech product I got on glucopower from Vitacost. It has absolutely every sup needed for liver health (check out the label on the website) and it helps with insulin resistance. And you don't have to purchase 8 different bottles of sups... its all there. Only drawback - 8 pills a day.

I haven't started the glucopower back up, as I did absolutely no sups during tx and am not sure when it is safe to go back on them. No one knows for sure.

http://www.vitacost.com/productresults.aspx?ta=glucopo&Ntt=glucopower

Guess I will give it a couple of months and get back on it. Its a great multivitamin + sups.

dm

byebyeC · « **Reply #34 on:** October 11, 2015, 12:42:34 pm »

Quote from: hepboy1 on October 07, 2015, 07:39:09 pm

hello to anyone did anyone you kno or you take herbs while on harvoni especially milk thistle
im about to kick off the harvoni and I was told not to take no herbs

I don't know the specifics of why, but I did ask my Dr. about milk thistle and he said no to me taking it while on tx.

Marianne

beto · « **Reply #35 on:** October 11, 2015, 01:24:01 pm »

I did not find milk thistle listed on the gilead contraindications for harvoni only, but it is mentioned for other treatments.

I will add something though that I had read years ago about Milk Thistle (just remembered)...It may block an enzyme that is responsible for breaking down many drugs and chemicals. Now this is just my memory here, but I believe it is an enzyme in the phase one segment of liver detox. I will look up the info and post.

However the best rule of thumb that most are taking is to err on the side of not doing any. None of us want to find out the hard way. Yes, in my case I used a little Milk Thistle (forgot about the enzyme thing). Because I did not find it. I continued at less than before, but with trepidation. I guess there is plenty of time after tx or SVR. Harvoni alone has proven to be incredible at lowering enzymes and VL...so. In retrospect I may have not. No one will know the for sure for likely a long while.

Also. This is an allopathic treatment, so following docs advice is best of course.

beto · « **Reply #36 on:** October 11, 2015, 01:37:20 pm »

(Cytochrome P450 2C9 (CYP2C9) substrates) is the compound that may be slightly compromised by milk thistle.

I feel like I am splitting hairs here. I do not know the validity of this info. I have seen a hand full of meds that they say should not be taken with it. Anyway I feel like I have already made too much of this. so I'm resting my case. I would hate to get in hot water over this when I could be joking with Tommy.

Bottom line it is up to everyone to work with all of their doctors, available resources and support to make any of these determinations and if in doubt...well.

byebyeC · « **Reply #37 on:** October 11, 2015, 05:51:53 pm »

Beto,
You're clearly functioning at a higher level than I am, haha

Made my brain hurt just to read all of that! Mad props for all the info.

Tommy, feel free to pounce

Marianne

gnatcatcher · « **Reply #38 on:** October 11, 2015, 07:23:49 pm »

Marianne, Tommy took the previous two weekends off from the Hep Forums, so maybe he's done that again. I think we can safely assume that he'll make up for lost time.

hepboy1 · « **Reply #39 on:** October 11, 2015, 08:28:47 pm »

milk thistle is a detoxifier ive never herd it blocks from elimination if im understanding you correctly but you say your negative and had little side effects the other person said they took it everyday and had no sides and is post neg and feeling fine when I get my first test ill post if it doesn't look as good as it should be then ill cut it out im also taking 400 mcgs selenium 2000 vit c a be vitamin 1000 milgrms soy lecithin guzzeling green tea also
and a calcium mag zinc tab mid way threw the day

beto · « **Reply #40 on:** October 11, 2015, 10:16:56 pm »

hepboy,

I am just being careful here. Thats all. This forum is an open one...I just don't want anyone to think I am promoting anything. I have used milk thistle for 25 years. Yes it is a detoxifier. You have to look hard to find anything negative about it. There are a number of great things it does and for liver health not too many things out there compare. The blocking of the enzyme was actually brought up to me by a well known naturopath. Most of the folks on this forum are either on or considering medications that could change their lives...I want to be careful what I say because, these drugs have not been around and studied enough to know what they may or may not work with. Could be that in the future we will find out that some supplements will support the treatment. I may be a little bit paranoid and forgive me if I appear to be playing devils advocate. I am sure you are going to get through the treatment well. I am sure a lot of people continued on supplements.

If you want to talk further...shoot me off a personal message, I could give you a phone number...or we can chat off the grid so to speak. All good.

Patience · « **Reply #41 on:** October 11, 2015, 11:00:15 pm »

I actually called the Gilead support line and talked to someone in their pharmacy department who said there were no indications against taking milk thistle while on Harvoni. So I took it during the whole 12 week treatment. I'm 6 weeks post now and though I had some uncomfortable sides, I'm feeling better than I did before treatment for sure. I have some lingering fatigue, but that could be "age appropriate" anyway. My 12 week post labs will be in mid November and I'm crossing every willing body part that they will come back undetected!

beto · « **Reply #42 on:** October 11, 2015, 11:20:22 pm »

Quote from: Patience on October 11, 2015, 11:00:15 pm

I actually called the Gilead support line and talked to someone in their pharmacy department who said there were no indications against taking milk thistle while on Harvoni. So I took it during the whole 12 week treatment. I'm 6 weeks post now and though I had some uncomfortable sides, I'm feeling better than I did before treatment for sure. I have some lingering fatigue, but that could be "age appropriate" anyway. My 12 week post labs will be in mid November and I'm crossing every willing body part that they will come back undetected!

Yes I did too...and I did talk to Gilead and look through the list. I did very well also on the meds. thanks patience...

willie g · « **Reply #43 on:** October 12, 2015, 05:19:33 am »

Hey what's cracking, milk THISTLE was first introduced to me when a individual I was taking care of WAS on it. Twenty years ago and he had hep b so Dr.put him on it.as time went on I saw many more were placed on it.personally I think it is good and have been taking it for years, even during TREATMENT,personally I felt it helped especially during TREATMENT for at one point I stopped due to opinions of this one and that but my side hurt more so I went back on it and side always feels better on it plus better readings. I also take fish oil omega 369 I believe and that definitely helps with bowel movements and flushing of system especially if you are on meds for pain and other things. GREAT STUFF. When I run out after about four days I start getting bound up again. Hey,if you don't like your eyeballs feeling like they are going to pop out and your pushing so hard the guy down stairs feels it lol. Give it a shot for two weeks. I take one twice a day and its like having smoothies out of the ice cream machine,lol I can concentrate on my scooter literature better and don't forget halloweens coming and just in case you were wonderingwhy GHOSTS Don't have babies? Because they have HALLOWEENIES! " Just will,"GATORFALLS"

Else · « **Reply #44 on:** October 17, 2015, 02:12:34 am »

Belated congratulations on your last pill!!! And your relocation to "the other side" as Kim so spookily puts it.

Not sure how I missed this thread other than that I'm terribly disorganized as to how I read the forum. Some email notifications help, or scanning for new threads and comments. But mostly I'm a human pachinko machine on this board. $:-\$

on edit - okay, I just figured it out. I'm in the Post Treatment forum. Not sure how I got here. I think I may be a twitchy clicker.

Forums Index

Welcome

Author Topic: last pill (Read 28509 times)