Author Topic: Mavyret Tx., Treating the relapse (Read 71824 times)

slats1056 · « **on:** October 28, 2018, 12:37:28 pm »

Hello to all You guys around Heplandia!

Here We go again! Trying to slay the Dragon for good this time instead of putting him into hibernation again. Got the Rx. in hand for 16 week Tx. after relapsing from Harvoni Tx. back in 2015. I guess a little back ground is in order being that I need to update My signature profile. Labs show EOT SVR and SVR12 ( see RETURN OF THE BEAST on after Tx. thread for EOT & SVR12 LAB copies posted for Me by Hep C staff and the Google link for current LABS. for reference ) Last hcv quantitative test was SVR12 which at the time I was told by Gastro, and Gilead was the gold standard for eradication and therefore SVR of the virus. All of My other blood work showed a couple of anomolies after Tx. but ALT/AST enzymes all stayed within normal range. Fast forward to August , 2018 where I returned to Internist after a prolonged hiatus due to personal & legal issues , and getting flooded out of the house due to Hurricane Harvey and the ensuing repairs/problems that came along with that. In the interim My Gastro. retired 11/16 (My follow up was scheduled for 1/17 , but that fell through the cracks.) I knew My blood pressure was through the roof due to being off of meds., so I knew internist would do a complete work up since I had not seen him for a long while. Asked him to run the HCV RNA PCR QUANTITATIVE test for Me. Was not expecting to get an call from him to come in instead of the usual follow up appointment 10 days later

SURPRISE-SURPRISE!!!!! Several highlights , but I was floored by the viral load of 1.02 MILLION COPIES

$:-\$

After several conversations and a couple of melt downs , the Doc himself called Me and explained things thoroughly. Referred to New Gastro and got My medical records together. ALL THE WHILE HOPING FOR A SCREW UP , rescheduled new tests for confirmation of the bad news. So Lab results came back 9/18/18 which really suck 'cause that was My Birthday!!!! Some present HUH? I won't go into all of the other things swirling around in the shit storm that is My life right now!!!!!

Apparently The new Gastro. had his Med. asst. begin processing paperwork for approval to BCBS and Abbvie right away .

And so , here I am!

Starting My 16 week Rx. Monday 10-29-18

I have found alot of Harvoni relapsers during My research, BUT , not very many that have gone so long before any thing showed up!

Sorry about the long winded rant , I am sure I left out something!

$:-\$ . But as usual I feel much better after getting all of this off of My chest! I must say that this Forum is one of the most Supportive , informative , knowledgeable , and all around best one to be a part of! Thanx to all of You guys out there , especially the unsung , unpaid , and underappreciated moderators on the staff!

Thanx All!,
Slats

P.S. I USED UP ALL OF MY SICK DAYS , SO I CALLED IN DEAD!!! Bam , there it is! The humor is coming back slowly!

:

Lynn K · « **Reply #1 on:** October 28, 2018, 02:09:49 pm »

Good luck slats I’m hoping and believing that this one will get them all

KimInTheForest · « **Reply #2 on:** October 28, 2018, 02:17:05 pm »

What a story, Tommy! You have been through the wringer on this. I was surprised to hear you have discovered a lot of Harvoni relapsers in your research, because of course we don't hear much about that side of it. In fact we're led to believe it virtually never goes that way on Harvoni.

My own Harvoni/ribavirin treatment ended up having quite a serious impact on my health in ways I have never detailed here, but am still dealing with. But at least it did seem to cure me of HCV. Although after hearing your story... maybe I should have that checked again too!

Glad to hear you are starting the new treatment. Let's hope this one gets the job done!

kim

slats1056 · « **Reply #3 on:** October 29, 2018, 09:14:48 am »

HERE WE GO BOYS AND GIRLS , THE MAVYRET TRAIN JUST LEFT THE STATION.
HERE IS HOPING FOR AN EASY AND UNEVENTFUL TRIP!

How are divorces and enemas alike?

??At first they are pretty crappy , but in the long run they feel pretty good!!

Onward through the frogs people.

LindaBalz · « **Reply #4 on:** October 29, 2018, 12:51:36 pm »

I am starting Mavyret today also. Oct. 29. First treatment ever. let hope it works!

KimInTheForest · « **Reply #5 on:** October 29, 2018, 12:58:45 pm »

Good luck to both of you, Tommy & Linda!

kim

slats1056 · « **Reply #6 on:** October 29, 2018, 09:33:00 pm »

Twelve hours into first dose , all is good. A little speed/jittery after a couple of hours and a little spacey feeling. Keeping an open mind and hoping for the best.

LIFE IS HARD, IT IS HARDER IF YOU ARE STUPID! JOHN WAYNE

slats1056 · « **Reply #7 on:** October 30, 2018, 01:33:59 pm »

Day 2 going fine. Nothing to worry about. Drs. office and Abbvie Nurse representative both called to confirm start of Tx. on time! Smooth sailing so far.
Stomach ache woke Me up in the middle of the night , I am writing that off to dinner at this point. Able to go back to sleep. Seem a little more tired then usual , but not out of the ordinary!

Doctor's office: All our records are electronic now just fill out these 12 forms.

slats1056 · « **Reply #8 on:** October 31, 2018, 08:31:29 am »

GOOD MORING ALL! Day 3 starting , dull headache and a little nausea. Not bad so far. Only taking Multi-Vitamin and BP Meds. , no Advil or OTC Meds at all! Got a letter , an e-mail , and a call from Abbvie yesterday verifying start of Tx. and Patient Support. Have not had a chance to check out the e-mail yet.

LindaBalz · « **Reply #9 on:** November 01, 2018, 08:42:12 am »

Hey I guess they don't care about me. I got nada.

slats1056 · « **Reply #10 on:** November 01, 2018, 09:48:39 am »

DAY 4 DOWN THE HATCH! So far everything is going great and according to plan.
I guess maybe after the first week or two I will go to weekly updates. Apparently there is still not a lot of info. out there on Mavyret.

Linda ,
Check with Your Medical Assistant , Or hell just do like I did and call Abbvie. I had talked with them prior to treatment to get My Rx. straight before starting. Wrote down names , dates , times , everything. So I was already on file with them by the time My Doc contacted them. Like I said , sometimes You just gotta poke the damn bear!

slats1056 · « **Reply #11 on:** November 01, 2018, 09:29:36 pm »

Don't want to jinx Myself , but everything is extremely mild as far as side effects go. I have to admit that after the problems with Harvoni compared to everyone else , I was a tad anxious about starting Tx. with Mavyret. It is still early on , so I am thinking positive and keeping My hopes up. Been sleeping good , with some weird dreams at times. I seem tired most of the time though not anymore than usual except close to bed time. Not the fatigue or exhaustion that I was so sure was normal. Don't sleep but 4-6 hours a night unless I am sick or overdo it with working full time and work around the house. I could get used to this I must say!

DOES AN APPLE A DAY KEEP THE DOCTOR AWAY????ONLY IF IT IS AIMED CAREFULLY

slats1056 · « **Reply #12 on:** November 02, 2018, 08:39:12 am »

Fixin' to chow down on #5 in a few. All good in tha hood! Here we go!

slats1056 · « **Reply #13 on:** November 03, 2018, 09:35:52 am »

Day 6 of what is so far an unremarkable first week of 16 week Tx.

It should be so easy for the remainder. Here is hoping for death of the lethal infection by Mavyret Guys and Gals!

Hope this post finds You all well and in good spirits!

CHOCOLATE COMES FROM COCOA , WHICH COMES FROM A TREE , RIGHT?? I BELIEVE I WILL HAVE A DOUBLE CHOCOLATE SALAD IN THAT CASE! THAT WOULD MAKE ME AT LEAST PART VEGETARIAN , RIGHT?

slats1056 · « **Reply #14 on:** November 04, 2018, 05:35:59 pm »

First week of sixteen is almost history people! No real Sx's to speak of. Minor head aches and upset stomach at times. Took a few advil , no other OTC's except multi vitamin and BP meds. Appetite is there , been able to eat just about anything. Strange that Sat. morning I had oatmeal for breakfast and got acid indigestion within an hour or two. I'll try it again and see how it turns out. My right shoulder has been bothering Me more so than normal , but I could have just slept on it wrong. Seeing the Chiropractor and getting a massage next Saturday. Still having some joint and mobility issues from last Tx. , but as everyone keeps telling Me----You know You are getting old , Right?

But it is what it is! $:-\$

Like I need reminding!

Hope it all keeps up at this pace for the remainder of Tx.

Hey Linda,

How are You doing. I hope You had a good outing with the family. I envy You the outdoor trip I must say. Glad You got the opportunity for the diversion from treatment. Let us know how it is going when You get time.

Anybody else out there just starting or getting ready to start treatment?

BEFORE YOU CRITICIZE SOMEONE ,WALK A MILE IN THEIR SHOES. THAT WAY , YOU WILL BE A MILE AWAY AND YOU'LL HAVE THEIR SHOES!

Slats.

jschmoo123 · « **Reply #15 on:** November 04, 2018, 05:55:30 pm »

Quote from: LindaBalz on October 29, 2018, 12:51:36 pm

I am starting Mavyret today also. Oct. 29. First treatment ever. let hope it works!

It will likely work but expect some serious side effects that don't seem to ever go away. I finished in June 2018 and now have eczema over my entire body and my eyesight has diminished.....just to name a few. Also, DO NOT expect any help from the makers of Mayvret. I tried asking them for help and they only wanted to document the side effects I am experiencing. Big Pharma making millions without regard for the patient's well being. I wish I would have gone with Harvoni. No way could it have been this bad. There is no doubt in my mind that this drug will be altered or taken off the market in the future. I wish you luck Linda.

slats1056 · « **Reply #16 on:** November 04, 2018, 10:14:50 pm »

Hey Jschmoo,

I hope You reported the side effects to the FDA and Your Doc , as well as Abbvie. The FDA and Abbvie will tell You up front that You need to talk with Your Doc to try & find ways to take care of/treat the things that come up during and post treatment. They will not give Medical advice or treat anything as You are under the care of Your primary physician. The forums are a pretty good place to start , just ask around and You can get some pretty good info. as well as references to find out what You need to know. Just curious what other side effects You have been experiencing because I am on a sixteen week regimen of Mavyret. I relapsed after Tx, on twelve weeks of Harvoni back in 2015. You should check out some of My posts back then. Trust Me , Harvoni was no walk in the park and I am still having some issues almost three years post Tx. as well as having relapsed. I am one of the few late post Tx, relapsers that I have been able to find in My research , excluding the clinical trials on record. But I digress , I am one of the few that had a rough time on treatment. At least it is a hell of a lot better than Interferon and Pegylated Interferon , especially with the addition of Ribavarin! I refused those and was told by My Gastro. that in no uncertain terms that I was out of My mind!
Oh well , water under the bridge. Do Me a favor and let us know some of Your back ground ( ie. Genotype , lab results , diagnosis date , and such) on Your signature line. Hopefully Your side effects will ease up soon. It took about a year before I noticed an appreciable reduction in mine.Still have joint pain problems that were not there prior to Tx. Vision has gotten worse as well. Don't know how old Your are , ( I just turned 62) but I always get the "You are getting old" treatment.LOL! Hope You get better soon! You should check out some of the old timers here that failed multiple treatments over the years. Some pretty hairy reads.

Slats.

LindaBalz · « **Reply #17 on:** November 05, 2018, 08:36:11 am »

Quote from: jschmoo123 on November 04, 2018, 05:55:30 pm

It will likely work but expect some serious side effects that don't seem to ever go away

Well everyone is different so maybe I wont! Time will tell. I feel 99%normal. even my heartburn that I've had like forever is way better. Yall will be first..no second, after the husband, to know

slats1056 · « **Reply #18 on:** November 06, 2018, 04:33:29 pm »

Well troops , nine days in . Very unremarkable I must say. No real sides so far to speak of. I know it is still early , but I think it is a lot easier on Me than the Harvoni Tx.. A couple of mild headaches and upset stomach at times. Calling Doc to make sure Lab orders are set up for 11-12 and 11-26 ( including viral load check ). A red rash seems to have popped up on neck and upper chest area. Not causing any issues or problems , just nice and red. In the pasted I have had something similar ( maybe a topical fungal/yeast thing ) that went away with the use of some Vaseline. Dry skin on arms and legs , using some cornhuskers on that. Later All!

YOU CAN'T BE SAD WHEN YOU ARE HOLDING A CUPCAKE!

slats1056 · « **Reply #19 on:** November 08, 2018, 08:47:31 am »

Day eleven starting uneventful. Fixing to down the days dose. I have noticed since beginning Tx. that I have been getting exceptional sleep at night. Better than I have in years!!! Pharmacy called last nite to set up delivery of the second four weeks Rx. The red rash that popped up last weekend is slowly disappearing with the use of some petroleum jelly. Almost gone after three day of applying it. Still have some dry skin issues though. All in all , thing are progressing just fine. Face and hair seem oilier than normal , oh well !! These things I can deal with , no problem!

SO YOU MEAN TO TELL ME THAT A STRESS BALL ISN'T FOR THROWING AT PEOPLE WHO STRESS YOU OUT?

Mugwump · « **Reply #20 on:** November 09, 2018, 12:32:56 am »

Hey slats I distinctly remember getting weird teenage like zits after the first week of Harvoni. At the time the Harvoni high also made me feel like superman, it was crazy. Others went on redecorating and even some house reno blitzs while high on Harvoni!
I also had a hankering to put on this recording and skid some leather on the floor for old times sake but my wife put the kibosh on that little flash back.. so I went fishing instead.

My best guess is that the liver is going into overdrive metabolizing fats and whatever like a teenager as it settles down and starts to grow more cells with DAA treatments. Certainly would explain the sudden zits and hyper energy some experience during tx.

slats1056 · « **Reply #21 on:** November 11, 2018, 08:22:02 am »

Good Morning Everyone,

Week two is getting ready to be history. All in all I am quite pleased with the lack of major side effects with Mavyret. I know that I am only two weeks into a sixteen week Tx. schedule , but as long as this keeps up I will be happy as a pig in shit for the remainder of it. I go in Monday for My first of many scheduled blood draws to make sure everything is still working correctly and there are no problems or anomalies with my liver or the meds.!

Hi Mugwump,

Yeah , starting to notice a few cropping up around My hairline and face as well as a few on My chest and legs. But this is a breeze , I got this no problem so far. I also remember the Harvoni High as well. I will gladly trade it for the great sleep I have been getting since starting Tx. this time around. Had enough of the house repairs , but still have to get some more done since the flood. I have two left feet BTW, so the electric slide is out of the question , ROTFL!!!! A lot of My outdoor equipment got destroyed/lost/trashed after the flood , I still have no idea what is what as there are still some things packed up in the shed,storage , and boat stall. I dread having to go through all of that stuff!

Here is hoping the liver got a break from the Harvoni Tx. like You said in an earlier post and delayed any further damage until the Mavyret kicks in. I have read You and several others speak of the fibroscan, but so far My Med. team has been happy with past results from Biopsy , ulrasounds , Fibrosure , etc.etc.! I am going to ask them when I go in for Lab results in a week or two. Hope all is well with Yours.

ALL MEN ARE EQUAL BEFORE THE FISH! Herbert Hoover.

slats1056 · « **Reply #22 on:** November 14, 2018, 10:35:58 pm »

Two & a half weeks in , everything is going good so far. Minor headaches and upset stomach seem to be the worst of it to date, a few dry skin issues . Rash that popped up went away just as quick with the use of some vaseline for a couple of days. I hope that everyone has this smooth of a Tx, as I am having so far ! Nothing earth shattering to report , just the opposite in fact. Hope everyone is doing well out there . Chins up and keep chipping away!

DON'T HALF AS ANYTHING! WHAT EVER YOU DO , USE YOUR WHOLE ASS!

slats1056 · « **Reply #23 on:** November 18, 2018, 09:40:50 am »

Today is the end of week three, so far it has been smooth sailing with this Tx. of Mavyret. Nothing major to report , which is good! Noticed a little spacey feeling. Forgetfulness and concentration more than anything. All is going according to plan.

LindaBalz · « **Reply #24 on:** November 18, 2018, 11:34:27 am »

yeah forgetfulness is my worst. frustrating! I need my memory! lol

slats1056 · « **Reply #25 on:** November 21, 2018, 11:53:48 am »

Three weeks and three days into. 16 week Tx. All is good on the home front. Extremely unremarkable as for as side effects. I could get used to this, LOL! I have been getting great sleep since starting Tx. , slept seven hours last nite , which is very unusual for Me. Go in Monday for four week Labs. ,follow up with GI about a weeks later.
Hope everyone is doing well! Later everyone!

Slats

LIFE IS LIKE TOILET PAPER...EITHER YOU ARE ON A ROLL...OR YOU ARE TAKING SHIT FROM SOME ASSHOLE!

LindaBalz · « **Reply #26 on:** November 21, 2018, 03:18:06 pm »

Mee too, Monday is my first blood test. I don't feel very good today, but not so good days are few and far between.

slats1056 · « **Reply #27 on:** November 23, 2018, 10:36:37 am »

Hope everyone had a good Thanksgiving! I know I ate to much , but man it was good!

Winding up week four this weekend , I hate to get on the scale and check My weight. I had gotten as low as 232 lbs. a prior to Tx. , but eating in the morning or the meds. have increased My appetite it appears. I am very happy with Mavyret in regards to the lack of side effects , very minimal and easily controlled so far! Blood draw for end of week four is Monday and Dr. follow up 7-10 days later to get results. Cautiously optimistic but , not all anxious or worried for some reason. I am content that all is going well. My main Sx. is being a little spaced out/forgetful feeling a lot of the time. You know the old walking into the kitchen and can't remember why?

Or when did I leave My wallet/keys/glasses?

The worst is going to make a list of what I need , then sitting down and not remembering what I was going to write!!! LMFAO!!

What was I going to say?

ROTFL

Oh well, I AM GETTING OLD AFTER ALL! $:-\$

Slats

I STUFFED THE TURKEY FULL OF XANAX THIS YEAR , SO WE CAN ALL HAVE A RELAXING HOLIDAY!

slats1056 · « **Reply #28 on:** November 25, 2018, 11:50:10 am »

Week four is complete , have My first empty carton of Mavyret! Just opened the second one in preparation for week five! Tx. still going great with no appreciable problems. Very satisfied so far! Cautiously optimistic about weeks five to eight.

Tomorrow is end of week four blood draw. Curious to see the results in a week or so! Still a long row to hoe , so keeping the expectations in check. There I go being pessimistic again, LOL1

Watched season one of Game of Thrones yesterday. Ended with birth of the Dragons, ironic isn't it!

Tommy

THEY SAY "DON'T TRY THIS AT HOME!" , SO I AM COMING OVER TO YOUR HOUSE TO TRY IT!

LindaBalz · « **Reply #29 on:** November 30, 2018, 10:38:39 pm »

Hey u get ur blood tests results? I am so far cleared!

slats1056 · « **Reply #30 on:** December 01, 2018, 06:59:48 pm »

OY VEY , AGAIN WITH THE GOOD NEWS!

LOL. Not yet , nothing posted to the patient portal I set up Friday. Not a big deal as I go in Tuesday anyway.

Been doing good overall with only minor Sxs. Will post results when I get them. Hope everyone had a good holiday. I know I ate too much and the Doc is going to be pissed that I gained weight!

AS I HAVE GROWN OLDER , I HAVE LEARNED THAT PLEASING EVERYONE IS IMPOSSIBLE , BUT PISSING EVERYONE OFF IS A PIECE OF CAKE! SO MUCH EASIER

Slats

slats1056 · « **Reply #31 on:** December 04, 2018, 10:34:07 pm »

Hey Guys,

Four week Lab results came back <15 undetected ! ALT & AST 18. Tx. is going good. Week six is sailing along nicely. BP still sucks 151/87. Internist is going to rip Me a new one. Oh well , at least good news from one Doc and set of labs. Glucose was a little high but I wasn't fasting , and Eosiniphils were high . Everything else was great. Cautiously optimistic , but happy--- this time around! Ten and a half weeks yet to go for the final act. Been in this boat before. Hate to sound pessimistic -- but it ain't over until the fat lady sings!!!!!

Slats

EXERCISE WOULD BE SO MUCH MORE REWARDING IF CALORIES SCREAMED WHILE YOU BURNED THEM!

Lynn K · « **Reply #32 on:** December 04, 2018, 11:05:21 pm »

Great news!!!
love your quotes lol keep em coming

LindaBalz · « **Reply #33 on:** December 05, 2018, 09:36:47 am »

That IS great news and your BP is always higher at the drs! its not so bad, anyway.

LB

andrew j · « **Reply #34 on:** December 08, 2018, 04:54:24 pm »

That's good to know, Linda - as mine is up there, too - 2 yrs post-Tx!
(You're right about it going up at the Drs.
I've run an experiment.
You can consciously bring it down by relaxing, breathing etc.) ...

Undetected at 4 weeks of a 16 week Tx is fantastic news, Slats!!

You're looking good !! ...

slats1056 · « **Reply #35 on:** December 09, 2018, 09:44:39 am »

Thanx Guys! Week six is in the bag. Ten more to go. Boy , it seems the Year has gone by so fast! And yet the last six weeks seems to have barely gone by at a snails pace. Kinda dreading the New Year knowing that health insurance resets as far as deductible and out of pocket expenses.
Overall Tx. has been great with only a few speed bumps to slow things down.Still feel a little dinged out/scatter brained at times. Not at all like the brain fog caused by HCV or Harvoni at all. Having some dental issues (have always had bad teeth) , however the Dentist does not want to do any work until post Tx. unless necessary. Also, I have gained 5-8 Lbs. that won't seem to go away. Taking the Meds. in the A.M. with food results in being hungry a couple of hours later (plus the holidays). Trying to be mindful of what and how much I eat. No complaints up to now. Hope the next ten weeks goes by as uneventful as the last six weeks and as quick as the pasted year. Ready for this to be done with and try to get back on an even keel again.

Slats

INSTEAD OF A SIGN THAT SAYS "DO NOT DISTURB" , I NEED ONE THAT SAYS "ALREADY DISTURBED , PROCEED WITH CAUTION" LMFAO

LindaBalz · « **Reply #36 on:** December 09, 2018, 10:17:44 am »

Yo Slats
Got me 6 to go. LOSTa few pounds
Lazy but i keep on exercising cause i dont want to go out and have to buy bigger size.
Being bad...drinking wine. Dr says my liver looks fine. Only drink wine once aweek.. but I have a good tolerance like with meds. They say take 1 I need 3. (ie. Pain meds)
So bad

KimInTheForest · « **Reply #37 on:** December 09, 2018, 02:25:19 pm »

You're doing great, Slats!! Keep it up.

kim

slats1056 · « **Reply #38 on:** December 09, 2018, 07:57:34 pm »

Hey Linda,

Since You lost them--can I send them back to You? Cause I found them! LOL! My Drs. won't Rx. pain meds to Me ( I do have a history from many years ago ) . But when I ask for them when I need them , You would think I was asking for a a life time prescription . I tell them just 5-10 pills with no refills , but nope! Oh well , I have endured worse pain and survived so I keep on going.

Hey Kim,

What is up these days in the shire? Hope You are thriving and feeling better post Tx. Life in general is in the crapper these days , but seem to have the household and treatment back on track for now. Small improvements but, baby steps none the less. Have You heard from Gnatty? I know she was pretty tied up with her Mom I believe who was getting to be in pretty bad shape last time I talked with her. Debating on whether or not to PM her. I know from experience the the primary caregiver thing a very hectic and demanding physically and mentally! How is the Westy doing? Get it all fixed up to Your liking? Keep in touch!

Tommy

I HATE IT WHEN PEOPLE ASK ME "WHAT ARE YOU DOING TOMORROW?" , I DON'T EVEN KNOW WHAT I AM DOING TODAY!

KimInTheForest · « **Reply #39 on:** December 09, 2018, 09:18:35 pm »

Hey Tommy,

My health fell off a cliff when I was on treatment with you back in 2015... and has never really been the same. But I keep smiling. What else am I gonna do!

I have not posted about it here in detail because I can't handle the deniers and invalidaters (not you!) who will say I can't prove correlation to scientific certainty... But here goes:

My 12 weeks of Harvoni+ribavirin in 2015 did definitely cure me of Hep C. But it triggered a huge ramp-up of a blood cancer I did not previously even know I had - Chronic Lymphocytic Leukemia (CLL). I literally went from undiagnosed stage 0 all the way to stage 4 in first 6 weeks of Hep C treatment! I think the ribavirin's impact on red blood cells and bone marrow played a role. But I think the Harvoni did too.

I was very sick and truly disabled with this illness for a long time after Hep C treatment, but I did not get it fully diagnosed until one year later in 2016. In 2017 I began treatment for the CLL. And that's going really well!. But the CLL, left me open to other cancers. Earlier this year I was diagnosed with anal cancer, caused by HPV virus. I spent the summer undergoing chemo-radiation in Victoria. It's no picnic having your butt radiated. But I am in remission at the moment on that one.

I went into the Hep C treatment in 2015 in good health with no known problems (apart from having Hep C for 45 years!). Able to go anywhere, do anything, build anything. And I have been in a state of near-total health collapse ever since - often housebound and sometimes even bed-ridden.

But at the moment - FINALLY - all is pretty damn good! Both cancers (that I know of) under control, and the Hep C gone!

I even threw myself into home renos and repairs shortly after returning home from my summer holiday of chemo-radiation. haha! New front porch and garage roof + gutters. Even tore up my front yard to replace 1940s sewer line (which was no longer up to the job). I let Roto-Rooter do most of the heavy lifting on that job.

That's been my life on the crazy train these past 3 1/2 years. That which doesn't kill us, eh!.

Keep on truckin' buddy!
kim

slats1056 · « **Reply #40 on:** December 10, 2018, 07:40:34 pm »

Well Kim , if You remember correctly , I am not the politically correct one here. So excuse My french--- but fuck 'em all and feed 'em fish heads! That is My motto. We had many discussions pertaining to this back in the day. If You or I don't speak up , no one else will! There has to be those of us that plant the seed so that it can grow. I also was in good health overall with normal aches and pains due to getting older. Now that seems to be a catch all phrase regardless of the outcome. I understand the need to not scare people away from these new drugs , but I also feel the need to have all of the info. out in the open. Which is not the case it seems. SO , speak up everyone and report all of the problems - sides - and things that are coming to light post Tx. so at least it can be looked at if not studied! But here I go ranting again. Keep Your chin up at keep on smiling in the face of adversity My friend!

Tommy

SMILES ARE INFECTIOUS ! BE A CARRIER !

Mugwump · « **Reply #41 on:** December 11, 2018, 12:18:32 am »

Kim, Slats;
even though I seem to be one of the lucky ones who has not seen problems post tx, I still think that something is going on that cannot easily be dismissed. The fact that HBV can suddenly flare up with DAA treatment and this "side effect" specifically seems to happen more frequently with Harvoni is very telling.
I can tell you that the flu shot this year made me so sick my muscles hurt like hell for 3 days after I had the shot. I had a strong immune response that almost put me in the hospital from a simple flu shot!

It seem that something is happening that can remap the human immune system with DAA treatments. Not that the DAA treatment is the cause of a specific disease or reaction but more so that there might very well be hard to predict secondary effects going on here.

The only reason this might happen, that I can think of, is having the liver suddenly create new structures that effect key immune responses in ways that can lessen the immune system efficiency: Or perhaps even make immune responses more dangerous as seems to be happening with me.
Essentially Harvoni treatment might not be more dangerous than any of the other DAA treatments. Perhaps the greater numbers treated with Harvoni than the other DAA treatments, is part of the reason why we are seeing more who go on to develop problems both during and after Harvoni treatment.
So far I have avoided cancers, touch wood because I know that I am prone to skin cancer and prostate cancer, which killed my father.
Slats; You got it this time around!

KimInTheForest · « **Reply #42 on:** December 11, 2018, 12:28:38 am »

I have the same theory, Mugwump - that DAAs (or at least the ones we were/are taking for Hep C) do in some way alter the immune system as an undocumented side effect. And that can have cascading effects throughout body. Depending on what pre-existing and underlying conditions exist in any person's body will explain why some people have serious aftermath post-treatment, and others nothing remarkable. I apparently had a pre-existing blood cancer I was unaware of because it was indolent prior to the Harvoni/ribavirin treatment. Or I may have just had the precursor condition of MBL (monoclonal B-cell lymphocytosis) pre-treatment. But the Hep C treatment dramatically changed that in a few short weeks. And this is normally a cancer that is extremely slow to progress - takes years to progress to degree mine did in first 6 weeks of HCV treatment.

kim

Philadelphia · « **Reply #43 on:** December 11, 2018, 07:44:42 am »

Good luck Slats. I hope this is a fast train out of Heplandia for you this time round. I’m sure it will be.

slats1056 · « **Reply #44 on:** December 12, 2018, 10:46:09 pm »

Hey Guys,
I was thinking along the lines that the immune system is now hyper active and alert to things and is in overdrive to the point of auto immune reaction. Possibly going after specific things and missing others. Thus allowing them to run rampant and unchecked until diagnosed. Strictly speculation by a lay person with an overactive imagination maybe? I have been wondering about the HBV equation as well. So far all of the Labs have shown only anomalies in the areas of cholesterol , lymphocytes , eosiniphils , and glucose . But at the moment My brain so overloaded with research info. that I have been taking a break. Just did a blood draw for My internist this past Monday and go in to see him next Monday for results , check up , and possibly a physical.

Hello there Philadelphia,
I was just checking out Your blog last nite. Thanx for the good wishes , and I am hoping so as well. I hope that Your are doing well with the issues You have been having. You should be named the goodwill ambassador to Heplandia! LOL! Keep fighting the good fight My friend. Take care and be well!

Tommy

I AM SO OLD I REMEMBER WHEN A HASHTAG WAS CALLED A POUND SIGN , AND WE PLAYED TIC TAC TOE ON TOP OF IT!

andrew j · « **Reply #45 on:** December 15, 2018, 05:08:16 pm »

Hi Kim,

I am so shocked to read of this nightmare you've been going through!

You poor thing!! ...

Your [tentative] conclusions about how DAAs can spark up pre-existing / as-yet undiagnosed / latent? cancers, certainly correlates with my own understanding.

Two or three years ago I read a number of papers (mostly out of Europe) stating that some people with established HCCs had suddenly got much worse, soon after finishing Tx.
On a personal level - I got a rash of skin cancers soon after finishing Tx (there is a high risk for it here in NZL - and I have all the risk factors) ... but it also happened to someone I know in the U.S.!
It seems, however, that DAAs can't or don't actually create cancers (where there was no cancer before) ...
e.g a couple of studies that 'dragonslayer' posted a couple of weeks ago.

Anyway - to YOU!!

As I say - I will PM you.

More soon,

A.

(Excuse me slats).

(... Maybe you could start another thread, Kim?) ...

LindaBalz · « **Reply #46 on:** December 16, 2018, 10:14:28 am »

Slats,

Sometimes, as my husband tells me, its not good to do too much research, bc he knows I am gonna think I have what is says could be a problem, bit of a hypochondriac that I am.

How are u? 5 weeks to go 4 me!

LB

KimInTheForest · « **Reply #47 on:** December 16, 2018, 11:16:10 am »

Hi Andrew. Good to hear from you. I don't need pity though. Staying strong and positive is my policy always - now more than ever.

Am not interested in starting a thread/post on my situation at this time.

and good luck to all other Heplandiers out there - past and present!

kim

slats1056 · « **Reply #48 on:** December 16, 2018, 11:47:50 pm »

Hello Everyone,

Week seven down , nine to go! Started having some pretty bad joint pain the last two weeks. Went to Chiropractor and massage therapist Saturday. Helped a bit. Still feel like hammered shit thought. Having some blurry vision , think I need to go see the eye Dr. and get them checked. Feeling thick as a brick as well. Still not to bad overall. Still tired most of the time , too. I'll get back with details later.

Tommy

A FRIEND WILL CALM YOU DOWN WHEN YOU ARE ANGRY , BUT A BEST FRIEND WILL SKIP BESIDE YOU WITH A BASEBALL BAT SINGING "SOMEONES GONNA GET IT"

Mugwump · « **Reply #49 on:** December 17, 2018, 12:24:10 pm »

Quote from: LindaBalz on December 16, 2018, 10:14:28 am

Slats,

Sometimes, as my husband tells me, its not good to do too much research, bc he knows I am gonna think I have what is says could be a problem, bit of a hypochondriac that I am.

How are u? 5 weeks to go 4 me!

LB

Linda it seems that like everything in life the aftermath of HCV is a crap shoot. I try not to buy too much trouble myself because having a dark cloud over me all the time messes with my fishing trips too much!!!

Slats; I found that daily whole body stretching exercises really helped during and especially right after treatment. The ancient Chinese are on to something with ti chi. There is a very good reason why you see Chinese seniors doing it all the time.

If I don't do daily stretch exercises I cannot play classical guitar for more than a few minutes these days. And I am only 66 years old!

slats1056 · « **Reply #50 on:** December 19, 2018, 08:21:09 pm »

Hello Eric,
Been kinda interested in checking out Tai Chi the last year. Seems to be just the sort of low impact activity with most beneficial results that will help out the old rode hard and put away wet body that I need. My internist has also been using some accupressure/trigger point manipulation on Me as well. There is a lot to be learned as far as Eastern Medicine is concerned assuming one has an open mind and is not seeing a quack. But then again , I also go to a chiropractor and massage therapist as often as affordable as well!
Glad to know that cloud isn't just hanging over Me, LOL! I haven't been fishing in a long time. Need to make time to do so. I miss fresh caught fish. Back in the day I used to go about every other weekend , weather permitting. Being on the Gulf Coast the options are just about endless. Bay , offshore , fresh , and brackish waters abound. Then there are the shrimp and crabs as well! Man , I am getting hungry and My mouth is watering just thinking about it!
Hope You are doing well and thriving. I would guess it is pretty cold up there where You and Kim are right now. Right now it is in the Mid 50's here! BRRRRR! LMFAO.

Tommy

I LOVE MY COMPUTER BECAUSE MY FRIENDS LIVE IN IT!

Mugwump · « **Reply #51 on:** December 19, 2018, 11:48:09 pm »

Slats hate to burst your bubble about how I heat my igloo these days, but just south of my locale we had a tornado touch down west of the Cascades. And the other day there was this woman on a bicycle with a dog in the back basket flying by my window. But I am not worried about this in the least: I have it on good authority that this change in weather is not due to climate change and is actually fake news. I was tipped off to the fact that this is all fake news by a new species of creature that specializes in exposing fake news.

Catch some of those great wild gulf fish for me Slats, I have to wait until the summer to go fishing anywhere in BC these days. Unfortunately the once great winter steelhead and salt water cutthroat trout fly fishery of Vancouver Island and southern BC is all but a memory due to climate change, over logging and other human activities.
But enough of the doom and gloom, seems like the POTUS has enough of that bullcrap for all of us these days, not that there is much of anything true about the dough coming out of Ottawa these days

but at least we pretend to care about the environment as our igloos melt!
Merry Christmas; Slats and all here! I am sure that you will finally see an end to the nightmare in your life very soon and you will have a happy and peace filled new year for a change.
Eric

slats1056 · « **Reply #52 on:** December 21, 2018, 08:37:25 am »

Good one Mugwump! I had to read that one a couple of times due to the multiple references You slipped in there. Hopefully the creature You allude to will become extinct soon! BTW, perhaps the lady and dog on the bicycle were headed out to visit the the fake followers of a certain religious belief since being quelled according to the creature referred to earlier. I have tried to erect an igloo for the thermal qualities inherent with the frozen building materials , however My fridge can't keep up with the supply needs! Possibly with the demise of the creature , things will improve with reduction of hot air expelled on a regular basis by it and support group that feel the need to expound the rhetoric! Meteorology is not My strong suit but , I do notice an increase in days that meet and exceed the century mark on the old thermometer. Being in Texas , we have no shortage of said bullcrap. So , that being said, these days it is hard to determine what is true and what is fake news to the average lay person that believes everything that is seen or heard on the TV and internet. I for one say " Turn it off , disconnect , and get outside and check things out"!

Tommy

Merry Christmas and Happy New Year to everyone ! Be Happy , be safe , enjoy the small things in life , and be responsible!

DON'T TELL ME TO SAY "HAPPY HOLIDAYS" SO NOBODY GETS OFFENDED. I WILL "MERRY CHRISTMAS" THE SHIT OUT OF YOU! DON'T GET YOUR TINSEL IN A TANGLE!

slats1056 · « **Reply #53 on:** December 22, 2018, 08:56:15 am »

Hello Everyone!,

Tomorrow I reach the half way mark on My re-treatment with Mavyret! Still doing pretty good overall. Headaches have been minimal. Gained about ten pounds since starting Tx. , fatigue has been so-so . I have been sleeping better so that helps , I assume that coming to terms with all that is going on in My life has helped to a certain degree. I believe I am set for the coming year insurance wise and monetarily. Major issues have been joint pain and the eyes being blurry,scratchy , feeling weird at times. I have noticed some deterioration in eyesight as well. Just had My eight week blood draw yesterday since everyone is closed on X-mas Eve. GOOD NEWS from Drs. office. Went and picked up My Rx. for weeks 13-16 , so it is covered this year before insurance re-sets at the end of the year. Hopefully I can get personal and retirement finances back on track next year.After all , Everyone keeps telling Me " YOUR ARE GETTING OLD AFTER ALL ", I have heard that so much that I am beginning to believe it! LOL!

Merry Christmas and Happy New Year all!
Tommy

DON'T ANNOY ME THIS WEEK! BECAUSE IF YOU DO---I WILL GIVE YOUR PHONE NUMBER TO ALL OF THE KIDS AND TELL THEM IT IS SANTA CLAUS' HOTLINE!

slats1056 · « **Reply #54 on:** December 28, 2018, 10:32:42 pm »

Well Guys,
Made it through X-mas O.K. , got a couple of days off until the New Year. Tomorrow will be the end of week nine. Seven more to go. Headaches are a little more regular and a bit worse as well. Joint pain is off the chart sometimes. So far , all of My Lab work has been in the normal ranges. Still waiting for results from last Fridays blood draw. Nothing posted to the patient portal yet. Pretty tired most of the time , but still sleeping well thank goodness. Just no energy. Doing house cleaning a little at a time but, getting behind schedule. Need to do some more work on the house when I can get ahead on bills. Not sweating it , but it will have to be done eventually. Trying to keep health and well being at the fore front. Made a big pot of chicken and dumplings today. Man it was good! Now I have to clean up My mess! LOL! Keeping My nose to the grind stone and chipping away at things. Hope everyone has a good New Year.

Slats

KEEP CALM AND PRESS CONTROL - ALT - DELETE!

Mugwump · « **Reply #55 on:** December 29, 2018, 12:17:50 am »

Quote from: slats1056 on December 28, 2018, 10:32:42 pm

Well Guys,
Made it through X-mas O.K. , got a couple of days off until the New Year. Tomorrow will be the end of week nine. Seven more to go. Headaches are a little more regular and a bit worse as well. Joint pain is off the chart sometimes. So far , all of My Lab work has been in the normal ranges. Still waiting for results from last Fridays blood draw. Nothing posted to the patient portal yet. Pretty tired most of the time , but still sleeping well thank goodness. Just no energy. Doing house cleaning a little at a time but, getting behind schedule. Need to do some more work on the house when I can get ahead on bills. Not sweating it , but it will have to be done eventually. Trying to keep health and well being at the fore front. Made a big pot of chicken and dumplings today. Man it was good! Now I have to clean up My mess! LOL! Keeping My nose to the grind stone and chipping away at things. Hope everyone has a good New Year.

Slats

KEEP CALM AND PRESS CONTROL - ALT - DELETE!

Trouble is that pressing ctrl-alt-del only pisses windows 10 off now, it does not effectively shut it up the way it once did. Fortunately Microsoft has not discovered a solution to pulling the plug when the software crashes quite yet, but they are working on it!
Happy New Year to you Slats!!!

Just wondering if you know much about the state of salt water fly fishing around Corpus Christi these days for this magnificent critter, https://en.wikipedia.org/wiki/Cynoscion_nebulosus or at least which areas are still good on the gulf coast. I have heard that the once great estuary fly fishing south of Port Arthur is in serious trouble cause of the constant dredging.

Unfortunately the only trout species that is still readily fly fished and willing to take flies during the winter is largely under the ice up in Canada where I live. Once we had great winter steelhead fishing but unfortunately we have largely managed the salt water variant of the species O. mykiss to extinction here in Canada

So there is almost no chance of catching decent winter steelhead on the fly anywhere in Canada these days!
PS; the real reason why I hate ice fishing so much is: It is too bloody hard cutting a hole in the ice with a chain saw large enough to get in a good cast that presents the fly correctly to the fish!

Have a great new year Slats and SVR in 2019!
eric

slats1056 · « **Reply #56 on:** December 29, 2018, 11:20:32 pm »

Hey Mugwump,
Most of My adventures in that area were around the Port O'connor area. Lots of specks and redfish. Mostly using live shrimp or silver and gold spoons depending on water clarity. The occasional flounder as well on the sand flats at the grass line or in one of the many seismic cuts. It is the craziest thing to see and smell the specks working the area around You! Another bonus to the seismic cuts and access channels was the availability of bay oysters as well as using a cast net for live shrimp! We would camp on the tidelands in the Pass Cavallo area bringing basic groceries . Get up early and go offshore in the Gulf if it wasn't over 4-6 foot waves for several hours. Come back in the afternoon rest and clean up , then take the small boat inshore for more fun and seafood for dinner. Nothing like a smorgasbord of fresh seafood that You just caught and cooked. If not , fall back on Bologna sandwiches! LOL! Alway had fun and never went hungry.

You are correct about the dredging. However , the tidal flow and currents keep the area in a constant state of flux. Mainly fluxed up most of the time. CCA has a big presence and impact in the area trying to improved and repair damaged areas. Not a fly fisherman myself but , I am always amazed at the patience and tenacity of You guys. I guess that is why I don't bow hunt either.

It took a second for the chainsaw analogy to hit Me!!! LMFAO! Good one.
Here is to the New Year!

Slats

GIVE A MAN A FISH AND YOU FEED HIM FOR A DAY , TEACH A MAN TO FISH AND HE HAS TO BUY GRAPHITE RODS , REELS ,JIGS , CRANK BAITS , JERK BAITS , PLASTICS , FLYS , WADERS , A TRUCK , AND A BOATS!!!!!!

KimInTheForest · « **Reply #57 on:** December 29, 2018, 11:40:03 pm »

Quote from: slats1056 on December 29, 2018, 11:20:32 pm

GIVE A MAN A FISH AND YOU FEED HIM FOR A DAY , TEACH A MAN TO FISH AND HE HAS TO BUY GRAPHITE RODS , REELS ,JIGS , CRANK BAITS , JERK BAITS , PLASTICS , FLYS , WADERS , A TRUCK , AND A BOATS!!!!!!

You always crack me up! Hahaha!

slats1056 · « **Reply #58 on:** January 01, 2019, 09:38:38 pm »

Hello All!

I am a couple of days into week ten of sixteen week Rx. of Mavyret. Made it through the holidays. Bouts of fatigue have bothered Me the last couple of weeks. Hope it is a passing thing. Stomach has been upset as well. What has really been bothering Me is joint paint especially in the shoulders , arms , and hands. Other areas also , but not as bad. Advil does not even faze the pain one bit! Manual dexterity has been extremely challenging at time. Been getting pretty good sleep for six to eight hours a night , start getting tired around one or two in the afternoon. Blood pressure still elevated.

Hoping for a turn around with the New Year!

Tommy

VEGETARIAN-- AN OLD INDIAN WORD MEANING BAD HUNTER!

KimInTheForest · « **Reply #59 on:** January 01, 2019, 11:42:19 pm »

Happy New Year Tommy! Sounds like you're 2/3 of the way done. Sucks about the joint pain. And blood pressure. Hope that clears up when treatment is done.

kim

slats1056 · « **Reply #60 on:** January 06, 2019, 09:36:57 pm »

Hello Hep Warriors around the World,

Week ten is in the books , ten down and six to go! Starting to feel the fatigue creeping in little by little. Don't know if it is the Meds , or a bug starting up. Been having some strange hot flashes and dizzy spells over the weekend. Feels like My equilibrium is out of wack. Stomach stays upset most of the time. Still hungry and eating , no G.I.issues to speak of. Headaches are still minimal. Don't have brain fog per se , but seem to be distracted and forgetful a lot. Drs. don't seem to be worried , but then again ,THEY AIN'T TAKIN' THE MEDS! Joint pain is the major problem at this point. Still have six weeks to go , so not gonna take any time off work unless I have to. Just keep grindin' it out and power through the best I can. Good thing I have the distractions of working full time and house / yard work or I would be going freakin' nuts or sleeping all the time. I am wondering if some of it is due to not taking any of My regular supplements , just a multi vitamin? Just conjecture on My part , but somethins' happen' here ,& what it is ain't exactly clear!

Hope everyone is doing well and keeping their chin up!

Slats

WOULDN'T IT BE GREAT IF WE COULD PUT OURSELVES IN THE DRIER FOR TEN MINUTES AND COME OUT WRINKLE FREE AND THREE SIZES SMALLER?

andrew j · « **Reply #61 on:** January 07, 2019, 04:05:44 pm »

Slats,

It could be that your system is finally resolving the infection, now.

I felt some subtle, but fundamental shift ... yes - like a resolution - taking place at about week 8 (of a 12 week Tx (Harvoni)).

... Maybe it was just in my head? ...

Doing without your sups shouldn't make much of a difference.
That's what I found, anyway.

All the best,

A.

LindaBalz · « **Reply #62 on:** January 09, 2019, 12:42:31 pm »

11 days ago I got those weird symptoms...thinking it was the meds and voila....I actually still have THE FLU. fever almost every day. TODAY finally going to Dr bc I cant shake the cough....and everything was going soooo well.

lb

slats1056 · « **Reply #63 on:** January 09, 2019, 11:42:55 pm »

Hey Andrew,

Here is hoping for the best. Prior to Harvoni and post Tx. some of My supplements had been helpful with a shoulder problem. Post Harvoni until starting Mavyret the joint pain has increased exponentially. Been able to keep it in check with Chiropractor , Massage Therapist , and accu-pressure/trigger point manipulation. At this point I will trying anything that doesn't interfere with or react with the Meds.

Hello Linda,

Damn, that sucks eggs big time! There has been all kinds of bugs and Flu around here lately. I have had a bit of a chest cold with all of the weather changes. Not to mention I still smoke 2-3 packs a weeks. ( down from 2-3 packs a DAY several years ago ) Also , Bronchitis flairs up when I get stressed out. Good thing I have no stress in My life! ROTFL! Hope You get better soon!

Tommy

slats1056 · « **Reply #64 on:** January 20, 2019, 02:22:52 pm »

Hey Guys,

Twelve weeks down and four to go! Have a blood draw scheduled Monday. Been feeling kind of crappy the last couple of weeks. Don't know how much of it is the Meds. and how much of it is the cold I have. I get pretty fatigued mid afternoon most of the time. Stomach stays upset , some times eating helps , and some times it makes it worse. Need to schedule an eye exam. Blurred vision and some trouble reading at times. Over all seem to be tolerating Tx. pretty well.

Hope everyone is doing well!

Slats

SOME THINGS MAN WAS NEVER MEANT TO KNOW! FOR EVERYTHING ELSE , THERE IS GOOGLE.

lporterrn · « **Reply #65 on:** January 21, 2019, 02:03:50 pm »

Thanks for checking in Tommy - a cold can be crappy - there is a bad one going around - it appears to linger and comes and goes...
4 more weeks, 4 more weeks, 4 more weeks!!!!!!!!!!!!

LindaBalz · « **Reply #66 on:** January 22, 2019, 08:46:17 am »

slats,
do u have a fever, even a low grade one? are u coughing?
I cannot shake what started out as the flu turn to bronchitis, and tod ay I am going to urgent care to see if I can get a chest xray so see if it progressed. Hard to catch my breath.

Linda

slats1056 · « **Reply #67 on:** January 22, 2019, 10:14:12 am »

Hi Linda,
Low grade fever ( 99-100 ) , sinus & chest congestion , bronchitis flair up . Cough has been productive , it is starting go away . It has lasted about two and a half weeks . Starting to feel a little better today. Hope You are O.K. !

Lucinda,
A little to early to start a count down , but it is good a time as any!

Here is hoping the next month flies by uneventfully! Been waiting for My CBC blood work from before X-mas , plus did one yesterday. The patient portal has been down for the last two weeks . So I called for the results , according to the Med. Assistant My calcium is a little high , but everything else is in range. It just seems strange not having a hard copy in My hand to see for Myself.

It seems as though the last three months have lasted forever on this Tx. Not sure why but , time seems to be dragging on forever . Hopefully this year this will take a turn for the better for Me and I can put a lot of things behind Me! On that note , I need to get Tx. and post Tx. testing out of the way first before tackling My more mundane and trying issues. Also , I am hoping that I won't have the post Tx. issues that I experienced with Harvoni. ( still dealing with some residual issues that everyone is saying are age related !

) . If it goes as well as the last twelve weeks , I will be Happy.

Slats

THE SECRET TO HAPPINESS IS TO HAVE A BAD MEMORY!

LindaBalz · « **Reply #68 on:** January 24, 2019, 08:49:05 am »

woo hoo I AM STILL UNDETECTED. do u know what mey viral count was in Dec?

??
10800000! this still is a miracle. just waiting for the other shoe to drop...

LB

Lynn K · « **Reply #69 on:** January 24, 2019, 04:38:01 pm »

Congrats!

Yeah these DAA’s are truly amazing

slats1056 · « **Reply #70 on:** January 28, 2019, 10:46:46 pm »

Hello Everybody!

Starting week fourteen today. Feeling kinda out of sorts lately. Can't put My finger on it. Don't feel that bad! Just don't feel good. Still a little under the weather from a cold the last two weeks. Neck , back ,and left hip have been killing Me lately. Need to get a massage! Headaches have been more frequent lately. Annoying as hell and don't seem to be responsive to any NSAIDS in the cabinet. The weather down here on the third coast has been all over the place lately , hot then cold-wet then dry. Mother nature can't seem to make up Her mind. Typical for Texas , if You don't like it wait a little while and it will change. LOL! Need some time off just don't have the ways or the means right now. Having some transient itching a lot. A finger , knee , arm , cheek , back. All over , just not at the same time. Get tired pretty quickly after work or doing work around the house. As usual keep on keepin' on and powering through. Three weeks to go. The end is in sight!

Tommy

SOME PEOPLE THINK I AM GOING CRAZY....THE JOKE IS ON THEM. I WENT THERE YEARS AGO , FELL IN LOVE WITH THE PLACE AND DECIDED TO STAY!

LindaBalz · « **Reply #71 on:** January 29, 2019, 02:28:48 pm »

Just a few more weeks to go, that's awesome!

Got back on the dang treadmill today that flu I had kicked my hindquarters, I couldn't breathe, no less jog. Next year its the vaccination for me!

Otherwise I feel pretty good.

your finishline is in sight!

Linda

slats1056 · « **Reply #72 on:** February 07, 2019, 03:58:52 pm »

Hey Guys ,

I need for all of You to weigh in on this please! ALL of My EOT , +4 , +12 , and +24 blood draws are coming up as one week prior to the actual completion dates. I was under the assumption that they were to coincide with the actual dates and not the follow up dates with the Doc. Docs office says no , because of lead time for the labs ( especially the viral loads ) they are done early!!! Not making sense to ME!!! Being that I relapsed and can only come up with EOT + 12 testing in 2016 for the Harvoni Tx. , I am a little perplexed that this does not seem to be sticking to the protocol as it was explained to Me by ABBVIE and Med. asst. before beginning this round of 16 weeks on Mavyret. I don't know if I am being gun shy because of all of the doubts and questions that I went through as to re-infection causes and only having EOT + 12 lab results , as well as EOT testing being done early due to Holiday at the end of 2015 , and not having SVR24 testing proof just SVR12! $:-\$ $:-\$ $:-\$

I am putting a call in to ABBVIE rep. as well . HOWEVER , I really trust and appreciate Your thoughts and opinions an this matter.

BTW , I am half way through week 15 and getting a little antsy I guess. The little green monster of doubt has been creeping in lately and I sure could use a little reassurance from everyone to help settle My nerves and doubts. The closer I get to EOT , the more worried I get pertaining to the outcome of all of this. The EOT + 12 and EOT + 24 are what decides the whole thing , but that ain't helping at the moment Boys and Girls!!

PLEASE CHIME IN AND HELP PUT ME AT EASE , IF I WASN'T ALLREADY CRAZY I WOULD SWEAR I AM GOING NUTS OVER ALL OF THIS B.S.!!! ROTFL!

Mugwump · « **Reply #73 on:** February 08, 2019, 01:35:04 am »

I wouldn't sweat it Slats if you go against what the doctors say in this case. If you can wait until the actual time has elapsed.

First and foremost is getting the eot NOT DETECTED result IMO. I did not have an EOT test and had to wait until 12 weeks post to find that I was undetected and that test was late. If you are confirmed NOT DETECTED at EOT the chances of SVR go way up.
Obviously you have had an EOT + 12 week not detected result with Harvoni and for some reason or other the little bastards did not all decide to give up. In my case I really do not think that there is that much difference in whether or not I had tests done at 23 weeks or 24 at the actual eot.

The really important one in your case is now the 12 week and 24 week post treatment tests. As far as the EOT test goes I doubt there is much difference between the actual EOT and the week prior to EOT. I have no doubt that your relapse treatment duration is decided upon with an eye to caution as to not under-treat. It may very well be that 16 weeks of Harvoni may have cured you where 12 weeks did not.
Gilead overpricing their miracle cure did not help the matter that is for certain. If anything overpricing the drug in the first place caused specialists to not consider longer treatment duration and the duration in some cases were dictated by pencil necks instead of physicians.

You have it under control this time Slats, I am sure you will be seeing those words NOT DETECTED on all the up and coming tests!

On the fishy side of things;

From what I have read the period of time around your 12 week test can be hellishly good for specs as they get more active with the water starting to warm up and start to get really aggressive and move on to the flats. Provided you get some consistant weather up in the high 70f for more than 2 weeks.

Whereas redfish can be really fussy early on in the season and stay deeper. Funny but the hormone changes redfish go through if the water temp changes suddenly is fascinating. They can change gender depending upon water temp and food supplies. A trait that might become useful for our species the way things are going!
In Saskatoon the temp reached well under -50f for the first time in quite a while. There has been a sudden run on little brass balls up here in Canada, our monkeys are suffering something fierce. The poor little beggars, all you hear is clink clink as they jump around in the trees.

If I win the lottery I will come down there and put in a few casts.

Cheers
Eric

LindaBalz · « **Reply #74 on:** February 08, 2019, 10:48:06 am »

Slats

Don't exactly know what youre talking about, they are testing you earlier then when they are supposed to?

If that is it, I don't see the big deal the week should make. If it really bothers you, talk to dr. and tell them no I will be tested at the time most people are.

You are almost done. That's the important thing. You will be fine.

Linda

jschmoo123 · « **Reply #75 on:** February 09, 2019, 04:46:48 pm »

Slats, I followed your direction and filled in some profile info. I just read your post. I did 12 weeks on Mavyret and had the same concerns with the testing. But since they were coming up "non detected" I let it go. In your post you said you had a relapse and then later say reinfection after 3 years. Just curious to know if you were ever able to determine which it was. Whatever the case, I hope you fair better with the Mavyret and hope you have better luck with side effects than I did.

andrew j · « **Reply #76 on:** February 09, 2019, 05:11:51 pm »

slats,

All of us feel / felt the same sort of anxiety you are feeling - but of course it's worse for you, having relapsed, and now having your dates mucked around with.
Just relax, and step your way through it.
Remember - the odds (the cure rates) are way in your favour!

Something I've learnt to do (I live in New Zealand) is let the med professionals know if I'm not happy / feeling upset about anything to do with my med management.
Usually, they'll respond if they can.

Hoping that you're doing OK today.

A.

slats1056 · « **Reply #77 on:** February 09, 2019, 07:49:36 pm »

Thanx Guys,

Seems that You are all thinking the same way I am as to the actual outcome of testing , opposed to the timing of the tests. It just pisses me off a little when the medical community acts so condescending and holier than thou whenever I question procedure/protocol . Especially since I have pointed out errors on their part in the past. Big Pharma can suck it as far as I am concerned , and the Doctors and Medical community are after all human and prone to errors just like the rest of us. The moral of the story is to do Your research and due diligence , speak up when You have questions , don't sit by quietly , and know that higher education does not always mean smarter!

Thanx Eric and Linda!

Hey jschmoo123,
Pretty easy doing the signature profile info. , the problem I have is figuring out what or what not to put in info. wise. LOL! At this point all indications are pointed to relapse . The reference to reinfection was to the questions and doubts that the Drs. and medical community had when I tested positive after almost three years post Tx. from the Cure all that was Harvoni. All but the one wild card of reinfection by a family member have been eliminated . The family , except one My kids have tested negative . That will be done in the very near future.

Hi Andrew ,
Anxiety is putting it mildly to say the least. I find it funny that when I question the status quo the professionals get their feathers ruffled . They seem to forget that they are part of a service industry and that we pay for those services , therefore satisfied customers are at the fore front! I have reminded more than one of them that I can and will go elsewhere if need be. I am not trying to do their job , just like to be well informed as to My treatment and require answers to My questions to proceed accordingly!

BTW, I have eight more days of Meds left to complete My sixteen weeks of Tx. on Mavyret. Over all I have been mildly surprised with the lack of Sxs. as opposed to the rough time I had with Harvoni. Although I still have the doubts and anxieties , I am still positive and hoping for the best this time around. Time will tell but , it doesn't get any easier I must say!

Hope everyone is doing well , and Linda I hope You got over Your flu and bronchitis. Mine has almost cleared up this past week.

Tommy

BASED ON THE LOOK ON YOUR FACE , I ASSUME I THOUGHT OUT LOUD AGAIN!

LindaBalz · « **Reply #78 on:** February 10, 2019, 09:17:54 am »

Yes Mr Slats I am over it , but I feel like CRAP. Tired, stomach hurts, old, depressed, cant hardly exercise, some of my joints hurt like they never did before, etc etc. Shall I cheer you some more?

If you have a Bible look up Isaiah 33:24.
Matthew 6:9,10.

Only thing that keeps me going is the hope for Gods kingdom and the PERMANENT relief it will bring.

jw.org.

Keep in touch and with updates,

Linda

Mugwump · « **Reply #79 on:** February 10, 2019, 12:36:45 pm »

One thing though; it could be that your doc is as spooked as we all are and might be considering more tx with other drugs if you are weakly detected at EOT. So just maybe that is why he is recommending going for the EOT viral load pcr test early.

Who knows what is on their mind here? Although we have never seen a recommendation to do a test early in your situation it might make some sense. Especially if you did have a confirmed 24 week SVR test with Harvoni, I would say your doc is just trying to cover all the bases and you seem to be in very good hands.

danton · « **Reply #80 on:** February 10, 2019, 02:29:39 pm »

Hi slats,
Thought I would pop in and see how you were progressing on tx. and notice you are just about done.
Time flies (well maybe not so much for you). Best of luck on the SVR 12 and 24.

Dont sweat the actual dates of testing . Look at it this way. You have been undetected since week 4. So if they do a viral load at EOT+ 23 instead of week 24 it will mean you have been virus free for 35 weeks. 1 more week to test the EOT+24 would not make any difference whatsoever.

At the end of all this you should do just fine. Mav is an excellent drug for re-lapse and remember what I posted in a prev. post I copied for you the results of this drug in trial for 1b relapsers and ALL of them SVR'd(of 34 patients in this trial 100% were succesful). I copied the result for you again at bottom.

You will do great.....will pop in again to see your SVR announcement.

http://www.natap.org/2018/images%20/111918/111918-9/11191816.gif

lporterrn · « **Reply #81 on:** February 10, 2019, 07:22:47 pm »

Hi Tommy,
Personally, if I was in your situation, I'd skip the anxiety, get the slightly early testing and get retested in another 24 weeks. Additional testing is a small price to pay for the peace of mind you will likely get.

slats1056 · « **Reply #82 on:** February 12, 2019, 06:58:20 pm »

Hello All,

Week 14 labs in hand. 02/04/2019 , HCV RNA PCR <15 NOT DETECTED ! Looks good so far. Cautiously optimistic until further testing at post 12 and 24 weeks. Have another viral load test scheduled for 03/11/2019. Blood pressure still screwed up. 158/91 , go in to see Internist next week to address that problem. Dr. will test viral load yearly for the next couple of years to be on the safe side. Don't want to use the words SVR or cured lightly at this point but , things are looking good so far! Still have 5 more days of Meds to take to finish up 16 weeks Tx.

Thanx again for everyone's support , kind words , and easing My anxiety for the last six months. You guys are great!

So onward through the frogs people!

Slats

LIFE IS A PRETTY CHEESY GAME , BUT AT LEAST IT HAS GOOD GRAPHICS!

Mugwump · « **Reply #83 on:** February 12, 2019, 08:51:01 pm »

As to what we have been experiencing here; the obscure expression that I alluded to turns out to have a nautical origin as does a great many obscure phases. https://en.oxforddictionaries.com/explore/what-is-the-origin-of-the-term-brass-monkey/
I used a snow shovel today for the first time in over 10 years. My prescription to you for your blood pressure is fresh caught fish on the flats.... Slats!

LindaBalz · « **Reply #84 on:** February 13, 2019, 08:23:22 am »

YOU ARE NOT DETECTED which is awesome. Im fit and sometimes my blood pressure looks like that bc of nerves. Hey If u quit smoking, exercise a bit and loose some weight, it WILL go down. Plus I take Inderal and that helps its normally 135/80.

Linda

slats1056 · « **Reply #85 on:** February 17, 2019, 12:26:27 pm »

Well , that is all Folks! Last dose of My 16 week Tx. down the hatch this morning. I guess the train ride is over for now and the waiting at the station begins. All has gone relatively uneventful pertaining to Sxs. and labs when compared to My Harvoni experience. Still cautiously optimistic as to the outcome until I have 4 , 12 , & 24 week labs in hand that state undetected/not detected!

. Still on the fence as to stating SVR/Cured since relapsing after Harvoni

! It is My nature to question things and also am a pessimist at heart though I know My chances are extremely good at this point!

My Doc is going to be requesting Yearly HCV RNA by PCR Quantitative testing to keep an eye on things. My Liver biopsy and fibrosure tests all show F3 , so I will be watching that as well. Forgot to ask him about fibroscan procedure last week.

. He is still scratching his head , as are his assistants , as to why I relapsed so late post Tx. ! No matter , My second Tx. is complete and all that remains is the post Tx. follow up testing. The results for the new DAA drugs is truly amazing and I am grateful . Especially since I did not have to endure the earlier Txs. that were harsh and damaging to the body! My hat is off to all of You that endured that hell on earth that is the different Interferon and Ribavarin treatments. Big tough strong guy that I am , I could not justify the pain and suffering or lack of results that came with the early Txs.! Back then My Drs. knew less about Hep C than I did and in no uncertain terms that I was out of My mind when I would not sign the release and refused treatment.
Oh well that is the past and I will not dwell on it. I will live in the present and look to the future . Hopefully so bright that I can put My cheap sunglasses back on!

Here is to every ones good health as well as to improving health in the future!

Tommy

lporterrn · « **Reply #86 on:** February 17, 2019, 02:23:36 pm »

Cheers to you!

LindaBalz · « **Reply #87 on:** February 18, 2019, 10:29:06 am »

Congrats to making it to the finish line...

Linda

slats1056 · « **Reply #88 on:** February 27, 2019, 11:10:41 pm »

Hey Guys!,

Just checkin' in. Been feeling kind of crappy since EOT. Extremely tired most of the time. Headache behind My right eye and temple. Discomfort on the right side below the ribs to the hip in the abdomen. Not real bad , but not good either! Transient joint pain in the hands , legs , feet , and neck. Hands and feet seem to be cold most of the time as well. Suck it up ,buck up , and power through . Still working full time to pay the bills and keeping up the house and yard. Hoping for the best on upcoming EOT + 4 Lab work. Blood pressure seems to be coming down to 140/80 range finally. Now I just need to lose the ten pounds that I gained during Tx. and and get some sort of exercise regimen going when the weather clears up a bit. Tinnitus in My left ear is getting worse , going to get a referral to an ENT Doc to check it out. Eyes have been getting worse as well , have not been to the Eye Doc yet either.

Hope everyone is well and doing good.

Tommy

DON'T STRESS ABOUT YOUR EYE SIGHT FAILING AS YOU GET OLDER! IT IS NATURES WAY OF PROTECTING YOU FROM SHOCK AS YOU WALK PAST A MIRROR!

Mugwump · « **Reply #89 on:** February 27, 2019, 11:31:52 pm »

Slats good to hear you had a little less of an adventure this time around. But it still begs the question, Why the hell are some of us having aggressive joint issues and flu like symptoms during and post treatment!!!!!
Seems to me the only rational explanation is that our immune systems go into some kind of overdrive producing antibodies. There is technology to study this and there is every reason to see if this is happening. As I have said in the past we could learn a great deal here about how liver changes effect the human immune system. What I am alluding to is that other forms of treatment for diseases other than HCV could come from these findings.
Either way I am sure you are on the way to SVR this time around. NOW GO CATCH ME A NICE GULF COAST SPEC

Cheers
Eric

LindaBalz · « **Reply #90 on:** February 28, 2019, 03:36:56 pm »

I too have joint pain (knees) and a chronic sinus condition since I finished, with fatigue, and I did not have that beforehand. I wonder how many others out there have?I guess its better then having Hep c, for sure, and just maybe this will all go away. For now ITS ANNOYING.

Linda

andrew j · « **Reply #91 on:** March 02, 2019, 04:57:36 pm »

I have that fatigue, too.
I'm not entirely sure if it's post - Hep C - or the result of an operation I had which means I now have to walk with a stick [and so can't move as quickly] ... or if it's just a matter of age.
Whatever the case - it's not entirely unpleasant - and I'm generally so much better than I was with Hep C - and so much HAPPIER ...!!!

slats1056 · « **Reply #92 on:** March 10, 2019, 12:13:00 pm »

Hi Everyone!,

All seems to be going as well as can be expected. Still a little under the weather at the moment. Fatigue and joint pain are still pretty bad . Headaches are still around , just not as intense or frequent. I go for a post Tx. 4 week blood draw tomorrow. Cautiously optimistic as usual . I am aware that the odds are in My favor but , they were with Harvoni Tx. three years ago as well! And so here we are . Just because the odds and statistics are on My side does not make it any less stressful waiting on the results of testing over the next twenty weeks post Tx.

. Even as the numbers are in My favor , Luck is a fickle thing for Me. Although I have a good outlook on things , luck has not been My strong suit in the last four to five years to say the least. I have been more than a little disappointed with the out come of thing in general lately , the small victories have propped Me up . One step forward , two steps back. Trying to stay ahead of the game none the less. One foot in front of the other . Hopefully by mid year things will be looking up .

Tommy

danton · « **Reply #93 on:** March 12, 2019, 02:32:27 pm »

Hi slats

Good luck on your 4 week test. Time seems to slow inexplicably when waiting for these tests doesn't it.

slats1056 · « **Reply #94 on:** March 18, 2019, 08:27:10 pm »

Hello to to all of My extended family around Heplandia!

Well , so far so good. The four week post Mavyret Tx. labs are in.
ALT 18 AST 22 HCV RNA QUANTITATIVE <15 IU/ml NOT DETECTED < 1.18 Log IU<ml NOT DETECTED AFP 5.6 Blood pressure 124/81 Pulse 73

Now that all is said and done until twelve week post Tx. Labs , I need to find an ENT Dr. to check out hearing and severe tinnitus in the left ear , go to the eye Dr. for glaucoma test and address blurry vision and get some new readers , and start working on My dental stuff that has been ignored due to no one wanting to work on My teeth during Tx.

Oh well , if it ain't one thing its' ten others LOL! The next person that tells Me I am getting old-------POW , TO THE MOON ALICE!

Oh yeah , not only is the Oak pollen count off the chart , If You have been watching the news the last couple of days---- the chemical tank farm that makes gasoline that is burning out of control is about 5 or so miles from Me. And I thought the black cloud overhead was the one following ME! LMFAO!

Good Health to All!
Tommy

MY LIFE HAS A SUPERB CAST BUT I CAN'T FIGURE OUT THE PLOT!

LindaBalz · « **Reply #95 on:** March 18, 2019, 09:41:10 pm »

Well congrats on the cure and the good blood pressure.
Now on to fix the rest of the mess you are....

Lynn K · « **Reply #96 on:** March 18, 2019, 09:55:52 pm »

All right slats great news onyour 4 week post results now onwards to your SVR12 test and likely cured result. Of course with your resent treatment history I guess you will want a 6 months post test just to be double sure this time before you can breath a little easier.

Good news so far keep it coming

Mugwump · « **Reply #97 on:** March 19, 2019, 02:17:01 am »

ALRIGHT

Here is what caused the oil fire.

Now go catch me some specs. The weather should be starting to improve, I know several doctors here that head down to Texas at the end of March or April depending on the year. They look for reports of the mullet trying to hide from specks in back channels especially in turbid waters. I know it sounds crazy but one of them actually stirs up the bottom with oars then waits for the fish to check out the disturbance and then casts a crab or mullet imitation. We do something similar with rainbows when we cast toward the shore with dragonfly nymphs in the shallow waters. Sometimes stealth is not the answer especially when the fish are hungry! I have had large fish follow and take right at the boat if the conditions are right. One of the best rainbow I ever caught was a good example. It took lightly, I gently moved the bug it spit the hook and I gave it about a 12 inch pull and bang it took my fly and came straight out of the water about 7 feet in the air from 20 feet down, then jumped 4 times and did a run that took over a hundred yards of backing before it ran out of room and turned back toward me.

When I caught a 15 lb plus rainbow on one of the best BC lakes a friend of ours showed me some pictures of a 10 lb plus Texas speck that he caught on a streamer fly the same year in the shallows close to the end of March or early in April. He is a maniac and can cast a large salt fly with the rods he builds for stupid distances

I watch him work a fly rod with envy to say the least!

I know I would have gone nuts if I had not gone fishing at least once while I was waiting for my SVR call!

Tight lines
Eric

slats1056 · « **Reply #98 on:** April 27, 2019, 02:09:31 pm »

Hey Guys,

It has been over a month since I posted anything, just wanted to let Ya'll know I am still alive and kickin'! Twelve week post Tx. labs are scheduled for Monday. Abbvie has contacted Me about getting My status and test results. Apparently they will follow Me until twelve week tests results come in , then I will fall off of their tracking schedule. Been busy getting legal and financial affairs up to date and working full time . Not a lot of spare time once I get done with yard and house work. Still experiencing severe tinnitus in My left ear ( Internist is going to get Me a referral to check the ears out ) and fatigued quite a bit. Been having discomfort on the right side of My abdomen below the rib cage and to the side. Annoying as hell and come and goes regularly. Doc has a wait and see approach for the time being. Will discuss it with him again next follow up . Been getting some long overdue dental work done in the mean time . Not My favorite way to spend spare time and money , but it has to be done! Trying to lose the weight I gained on treatment . Need to lose about 15-25 lbs. Blood pressure seems to have normalized post Tx. and have cut way back on smoking as well . Target date to stop is My 63rd. birthday in September. My daughter has been helping Me to eat better. Cut way back on red meat and added a lot more fresh veggies and fruit to the diet along with eating healthier . But , man I am craving a big ol' steak.

Overall I am doing pretty well . Just not much spare time.
Hope everyone is doing good around the world that is Heplandia! I will try to post and update a little more regularly .

Slats

IT MAY LOOK LIKE I AM DOING NOTHING , BUT IN MY HEAD , I AM QUITE BUSY!

KimInTheForest · « **Reply #99 on:** May 14, 2019, 12:11:11 am »

Good to hear your update Tommy! Sounds like you're getting a lot done. Hope that abdomen discomfort can be sorted out. Keep on keepin on! :

kim

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