Author Topic: The Return of the Beast! (Read 70886 times)

jakas · « **Reply #100 on:** October 21, 2018, 10:06:39 am »

HAS ANYONE RUN ACROSS ANYONE OR HAVE ANY INFO. OR STATS ON PEOPLE THAT ACHIEVED SVR FOR 12 OR MORE MONTHS AND RELAPSED?

No I have not heard of it anywhere you are the first. I had genotype 1a and 1b.
Harvoni for 12 weeks.
Tested at 4 weeks after treatment negative, 12 weeks tested negative, 24 weeks tested negative and 63 weeks E.O.T. negative. After 24 weeks the doc said relapse ruled out.
Thus your case is the first, I know of. I just cant figure out it was was the testing they did or how you relapsed. Following this thread very closely now. Please keep us updated.

slats1056 · « **Reply #101 on:** October 22, 2018, 11:04:41 pm »

Well , it looks like I will have to revert back to the on treatment threads in a couple of days. Still don't have my labs in hand. But the powers that be (BCBS, Prime Theraputics , Gastro ,the pharmacy, and Abbvie) deemed it necessary to fast track Me to retreatment A.S.A.P! Got calls and letters from all but the Gastro today. I am sure that call will come tomorrow. I am totally baffled by the lack of concern by them as to why I am one of the very few to be Genotype 1b , treatment naive , no cirrohsis to have relapsed after 12 week Tx. with Harvoni. Makes Me wonder if it is the Big Pharma grab or if there is a true concern for My case. From the insurance stand point it is cheaper than a transplant or cancer for sure. Apparently that is up to Gilead since they produce Harvoni. Seems to Me that there would be a little more interest as to what went wrong. But I guess it doesn't matter to them that this is a rather costly SNAFU for Me , and that I have to do it again no matter what. Makes Ya wonder don't it??

$:-\$

Just hope I can keep on working as I am still dealing with some after effects of the first Tx. Here is hoping that I don't have as rough a go of it with Mavyret as I did with Harvoni !!!!!!!!

OH WELL , IT IS BETTER TO BE BROKE AND ALIVE THAN RICH AND DEAD I GUESS.

Here is to all of My friends that are out there around the world , and to all the new ones yet to be met here in the wonderful world that is Heplandia!
As soon as I get those pesky labs in hand I will post again. But by that time I will probably Have the new Rx. in hand. LMFAO

HERE IS ONE GUYS---WHEN I PROMISE TO COME UP WITH AN ORGAN TRANSPLANT PUN-----I DE-LIVER!!!!! Later guys and gals!

lporterrn · « **Reply #102 on:** October 24, 2018, 09:53:10 pm »

Ditto on what Eric said. As for using genotype testing to see if this is a new infection, reinfection, or return of old infection, given what we know, it is most likely to be that you didn't have a durable SVR in the first place, even if the genotype is different. Although your situation is rare, it does happen. Multiple genotypes also occur.

slats1056 · « **Reply #103 on:** October 25, 2018, 09:37:26 pm »

Hopefully this works! Lab reports follow if it does. Mavyret RX. for 16 weeks in hand,start 10-29-18. On treatment Lab schedule set up. Recommended taking Meds with a full meal (breakfast or lunch suggested) or possible upset stomach and nausea will result. Suggest not taking at nite with dinner. Labs scheduled (CBC) at 2,4,8,12 & 16 weeks, Viral load week 4 & 16. EOT 2-11-19. Follow up labs scheduled for 4,12, & 24 weeks post treatment with viral load check.
The medical assistant assigned to Me said Doc is & has been treating multiple relapse cases (not sure of how many) , 4 of which were on Harvoni , all of which are assigned to her. Apparently I am the first 16 week treatment patient of the 4. Well---Here We go boys and girls, buckle up and get comfortable for the ride, no sides expected or indicated. We shall see!!

$:-\$

https://drive.google.com/open?id=1fHRbWEruUuS0hc9HivEB0LEsQUJ0CDU6

slats1056 · « **Reply #104 on:** October 25, 2018, 10:04:15 pm »

All indications are pointing to relapse, no known indicators for re-infection . Same genotype 1b now for re-treatment with Mavyret as three years ago when treated with Harvoni. the only possible scenario for re-infection is by family member & they are getting tested to rule out that and give Me some peace of mind. At this point everyone seems to think the question of relapse is a moot point. No matter , I have the Rx. for re-treatment none the less!! At this point My best guess as to Harvoni relapsers in My situation is less than two dozen. Oh well, Life is a bitch then You treat and repeat until cured ,right?

Lynn K · « **Reply #105 on:** October 25, 2018, 11:16:33 pm »

Well forward progress anyway

Best of luck and kick butt!

danton · « **Reply #106 on:** October 26, 2018, 02:17:48 pm »

Hi slats,

Been following your thread here and happy to hear you are getting started on your re-treatment.
It really is a moot point (interms of your upcoming treatment) to you and your doctors on whether or not you have relapsed or been re-infected, as Mavyret for 16 weeks is the right treatment for 1b relapse and it certainly would be appropriate for a new infection (although the duration of 16 weeks for a new infection might be a tad overkill)

If it was me ,I would rather overtreat than undertreat

There have been thousands that re-lapsed on Harvoni slats,however as we were all discussing earlier on this thread awhile ago ,having relapsed as late as you did has been proven by data to be somewhat a rarer occurence.

Best of luck with your treatment slats!

lporterrn · « **Reply #107 on:** October 26, 2018, 04:39:51 pm »

All looks good - go kill the beast!

slats1056 · « **Reply #108 on:** October 26, 2018, 08:10:38 pm »

Hey Lynn,
Progress is right! One foot in front of the other. Keep on Truckin' , right?

Danton, Whats' up?
Been a while. Yeah , You Guys are right. Can't dwell on the bad stuff or the B.S. , it just holds You back right. New day , new treatment! Bring it on

Still it bugs Me a little about the later than normal relapse. Hoping to breeze through Tx. without any glitches or problems. While I was typing this , a nurse representative from Abbvie called. Said she will be following for the duration of Tx. to after Tx. So , at least I will be inputing info. to them as opposed to the cattle call that was Harvoni.

Lucinda,
Yes the beast must die, here is hoping that this is the magic sword needed for the task.

BTW, has anyone ever told You that You have an infectious SMILE

?

Thanks to all of You guys , now I can try to relax a little and rest My little ol' pea brain, as well as get some rest.
I guess protocol dictates moving back to the on treatment side again when I get started next week.

Thanx again all of You guys are great and I am lucky to have all of You in My corner.

Mugwump · « **Reply #109 on:** October 26, 2018, 09:10:10 pm »

More speculation here Slats on why you may have relapsed late: but the little bird of logic that mister Spock once alluded to has spoken in my ear on one possible cause of your treatment failure with Harvoni.

It is very possible that the ledipasvir component in Harvoni is part of the equation here for some unlucky individuals.

It is know to be ingested and metabolized differently. Perhaps some people with a slightly less acidic digestive system during treatment for some reason or other, might not receive the necessary effects of a full Harvoni treatment as prescribed.

I am 3 years free from detectable HCV thus there has been no sign of the virus in me for a full three years. But I had the full 24 weeks of Harvoni thank heavens.

Either way Michael Sofia should be awarded a Nobel prize for not listening to all the detractors and naysayers in the drug industry, thus brilliantly showing the way to deliver anti-virals directly to hepatocytes and giving us the chance at freedom from HCV.
However when it comes to your Mayvret treatment and those little pieces of less than living RNA eating away at your liver Slats: as John Wayne said as he led the parachute brigade to Sainte-Mère-Église on the D Day drop... Send em to hell!! When I was on treatment EVERY TIME I had to take a crap or piddle (which was just about every 2hrs during the second week!) this is exactly what I imagined doing to the inert HCV rna and dead liver cell by products going down the shitter.

then ah what a relief it is!!!
Whether or not my imaginative aggressive murder of HCV encapsulated rna did any good is moot. It sure helped with not having to take a laxative or eat a butt tonne of prunes during treatment though. Only draw back is that my grunts and groans and at times machine gun butt shots might have seemed a little extreme for my wife and our cats. Both of whom very wisely stayed away from me while I was on the crapper during the time I was on treatment!
Cheers
Eric

danton · « **Reply #110 on:** October 27, 2018, 04:30:10 pm »

Hi slats,

You said:
" Recommended taking Meds with a full meal (breakfast or lunch suggested) or possible upset stomach and nausea will result."
---------------------------------------------------------------------
Make sure you do take this with a full" moderate to low fat meal".

Not just because you may have some nausea or stomach upset but because the prescribing info from data taken in study showed that the absorbtion of this drug is quite" significantly" reduced if not done so.

The reason I mention this slats and hopfully your doctor did also ,is you certainly would not want to take it without food just because you were feeling no stomach upset.

It can make a difference and the second time around you want to make sure you give yourself ALL the advantage.

Good luck!

slats1056 · « **Reply #111 on:** October 29, 2018, 09:24:24 am »

ATTENTION ALL MAVENS AND ADMIRERS OF SVR AND VANQUISHING THE DRAGON!
From here on out I will be posting in the On treatment category under Mavyret Treating the relapse.
Of course I will return with updates as Tx. progresses over the next 16 weeks. Here is to all of My friends and Tx. buddies out there. Just took My first dose and hoping for the best! BACK ON THE CRAZY TRAIN BOYS AND GIRLS

How do You tell the difference between oral and rectal thermometers?

BY THE TASTE!

Later guys!

slats1056 · « **Reply #112 on:** October 29, 2018, 08:04:41 pm »

Just getting settled down after 1st day of Tx. and doing some thinking. Learned alot about self advocacy here in the past , and something just dawned on Me! It was I who brought it to the attention of the Med. Asst. that in My case Tx. called for 16 weeks Rx. not 12 weeks.

Apparently I did learn something from You guys after all.

Still trying to find any studies that pertain to My situation ( post SVR12 to 2-3 years, for Harvoni Tx. that are at least semi-current-like 2015 to present ) Have not found any info. or ongoing studies.
If any of You have any info. or find anything , please drop Me a line on the Forum or by PM. Also , have e-mail available if needed.

WHAT IS THE DIFFERENCE BETWEEN A GENERAL PRACTITIONER AND A SPECIALIST?

? ONE TREATS WHAT YOU HAVE, THE OTHER THINKS YOU HAVE WHAT HE TREATS!

lporterrn · « **Reply #113 on:** October 30, 2018, 12:49:51 pm »

slats1056 · « **Reply #114 on:** November 17, 2018, 11:20:17 am »

Good Morning Everyone,

Have 2 out of three family members tested for My peace of mind and to eliminate possible causes of re-infection as opposed to relapse. One has come back negative and one is awaiting test results. The third is yet to be tested , that will come in the near future. Still have not come up with any causes for re-infection as of yet.
Tomorrow will be end of week three of sixteen on Mavyret Tx. , going in Monday to pick up second four weeks Rx. from Docs' office. So far , knock wood , Tx. has been rather anticlimactic as far as to side effects. A few headaches , upset stomach , and some joint pain that has worsened a little. All manageable with Advil and visits to Chiropractor and massage therapist. I have noticed a little bit of a feeling of being spaced out at times (not at all like brain fog) and forgetfulness. But as the keep telling Me -- You are getting old after all-- LOL , thanks for the reminder. I was trying to forget that!!

All in all , Tx. is going good. Just had blood wok done at two weeks to make sure all is O.K. with the Meds. not causing any problems as far as body functions. Go in for blood draw at the end of week four for full Hepatic panel and viral load check.

ME? CRAZY? I SHOULD GET DOWN OFF OF THIS UNICORN AND SLAP YOU!

KimInTheForest · « **Reply #115 on:** November 17, 2018, 12:25:10 pm »

Glad the treatment if going well!

kim

slats1056 · « **Reply #116 on:** November 26, 2018, 10:12:17 pm »

Hey Everybody,

Just thought I would check in. Just finished week four on Mavyret and went for My blood draw today. Everything seems to be going well with only minor Sxs. so far. Keeping My fingers crossed for the next twelve weeks of Tx. Still working on eliminating relapse scenario of possible reinfection by family member. My ex has been cleared , one kid waiting on Lab results and one yet to be tested. Everything else has been ruled out. Hope everyone is doing well.

Tommy

WHEN SOMETHING GOES WRONG IN YOUR LIFE , JUST YELL "PLOT TWIST" AND MOVE ON.

lporterrn · « **Reply #117 on:** November 27, 2018, 11:05:54 am »

Hi Tommy,
I really appreciate you checking in as you've been on my mind. Also, I love your 'plot twist' tag line - I'm going to try that.
Hope there aren't any more plot twists in your life for awhile!
Peace,
Lucinda

slats1056 · « **Reply #118 on:** December 01, 2018, 07:12:39 pm »

Hi there Lucinda!,
Thanx for thinking about Me. It is truly a rare occurrence when total strangers are concerned with Your well being. You my dear are an anamoly and a treasure to boot!

Been doing pretty good and settling into Tx., waiting on four week Lab results. Go in Tuesday to the Gastro. Set up My patient portal Friday but, no info. posted as of this afternoon.
I hear You about the plot twist , had more than My share lately!

BTW, It has been a long time since I have been PEACED ON!!!

LMFAO! Hope You are doing well, talk with You later.

Tommy

slats1056 · « **Reply #119 on:** December 03, 2018, 10:43:14 pm »

I found a reference to SVR24 that I posted April 15, 2016. I am trying to locate Dr. notes and lab results to verify it!

lporterrn · « **Reply #120 on:** December 04, 2018, 05:20:54 pm »

That may be quite helpful Tommy. Thanks for your persistence!

slats1056 · « **Reply #121 on:** December 10, 2018, 07:25:45 pm »

Got test results back for My son, NEGATIVE for HCV! That makes two out of three family members testing negative ( My ex. and my son ) Daughter will be tested after the first of the year due to work schedule and travel. So far that is a big load off of My mind for sure!

Tommy

DEAR LIFE , I UNDERSTAND VERY CLEARLY THAT YOU ARE NOT FAIR SO YOU CAN STOP TEACHING ME THAT LESSON!

lporterrn · « **Reply #122 on:** December 11, 2018, 11:38:24 am »

Sweet!!!!!!

slats1056 · « **Reply #123 on:** December 12, 2018, 10:53:55 pm »

Sweeter than honey My friend, sweeter than honey!

Tommy

MY MIND IS LIKE A WEB BROWSER ,19 TABS ARE OPEN , 3 ARE FROZEN , AND I HAVE NO IDEA WHERE THE MUSIC IS COMING FROM!

lporterrn · « **Reply #124 on:** December 13, 2018, 10:59:46 am »

Tommy, I am endlessly amused by your additional "insights" - this one is hilarious: "MY MIND IS LIKE A WEB BROWSER ,19 TABS ARE OPEN , 3 ARE FROZEN , AND I HAVE NO IDEA WHERE THE MUSIC IS COMING FROM!"

KimInTheForest · « **Reply #125 on:** December 13, 2018, 01:39:51 pm »

Quote from: lporterrn on December 13, 2018, 10:59:46 am

Tommy, I am endlessly amused by your additional "insights" - this one is hilarious: "MY MIND IS LIKE A WEB BROWSER ,19 TABS ARE OPEN , 3 ARE FROZEN , AND I HAVE NO IDEA WHERE THE MUSIC IS COMING FROM!"

HAHAHAHA!

I love that one too!

slats1056 · « **Reply #126 on:** December 18, 2018, 07:49:22 pm »

Hello All!

Still have a gap in My records for the first half of 2016, have not been able to locate any Labs for that period. Records custodian for retired Gastro Dr. has not gotten back with Me either. Oh well , not giving up , just not pressing the issue.
Just to let You guys know , I just started week eight of sixteen on Mavyret. Having of few issues , but nothing major. Joint pain and a sluggish brain are the worst at this point. Blood pressure meds. don't seem to be regulating things. Internist just added a diuretic to the mix. We will see how that works out.

Hey there Beto!

I see You lurking out there! I hope You are doing O.K.! Just saw a PM alert pop up , so I am guessing that it is You. Nice to see You back in the mix Big Guy!

Tommy

I NEVER MAKE THE SAME MISTAKE TWICE! I MAKE IT THREE OR FOUR TIMES , YOU KNOW JUST TO BE SURE!

beto · « **Reply #127 on:** December 19, 2018, 11:26:43 am »

Hey Gang...long time,

Just wow Tommy. I got your personal note and yes I am still reeling from it. You will get her this time around brother. I am going to get re-tested myself because of the way I have been feeling lately which is not good. Nice to revisit the spirit of support and see some of the old avatars continuing to keep things upbeat. Tommy I am praying for you for what it is worth. You are indeed a fighter and an inspiration, though that is perhaps of little consolation. We called ourselves the class of 2015. I recall we were all going to try to get together in Hawaii or something...that didn't happen.

Hope everyone else are doing well. Peace ya all...hang in there Tommy.

KimInTheForest · « **Reply #128 on:** December 19, 2018, 12:12:16 pm »

Hi Beto! I remember our plan to convene in Hawaii. Even make a documentary, if I recall!

Love our Class of 2015 - and that fact that we're still here gabbing.

kim

Lynn K · « **Reply #129 on:** February 08, 2019, 01:23:10 am »

Hey slats just wanted to share with you that I had my annual hepatologist visit and asked my doctor about taking a 4 year post treatment viral load test. I explained about your situation. She said sure thing might as well make sure things are still good.

So waiting the usual week to 10 days to hear about my results.

We did a Fibroscan also. My pre treatment Fibroscan was 27 and my one year post was 33.

Today my 4 year post result was 29. So the good news is I’m not getting worse but I don’t think I’m going to be one of the lucky ones with early cirrhosis who’s livers improve with time. But at least I’m maintaining the status quo.

andrew j · « **Reply #130 on:** February 09, 2019, 04:37:15 pm »

Hopefully they'll come up with some new technology.

Lynn K · « **Reply #131 on:** February 09, 2019, 05:39:23 pm »

Wow got my HCV RNA test back really fast. Four years post still not detected. Yay!

I’m still ok and shouldn’t get worse unless I get HCC knock-on-wood. Of course if they come up with some meds to improve fibrosis and cirrhosis that would not hurt my feelings either.

andrew j · « **Reply #132 on:** February 09, 2019, 05:43:32 pm »

For sure, Lynn!

slats1056 · « **Reply #133 on:** February 09, 2019, 08:05:53 pm »

Wow Lynn,
Good news is an understatement! Yay indeed . Good call on the request for HCV PCR RNA testing. I think everyone that can afford it should have follow up testing the same as with Colonoscopies , Endoscopies , etc. just to be on the safe side. If they can't afford it there should be a way to subsidize it . I have not had a fibroscan to date . Here is hoping that Yours will improve as time goes by.Like You said , at least it isn't getting worse! That was some quick lab work by the way! Happy for You .

Tommy

IF DOROTHY CAN CLICK HER HEELS TOGETHER AND GET TO KANSAS , HOW COME I CAN'T CLICK MY FLIP FLOPS AND GET TO THE BEACH?

Lynn K · « **Reply #134 on:** February 09, 2019, 10:44:42 pm »

Yeah I’m fortunate to have good insurance. I have my colonoscopies every five years (history of polyps family and myself) and having my biennial upper endoscopy this Friday. Along with my biannual abdominal ultrasounds and blood testing.

Yeah I was super surprised my HCV RNA got back so fast it was a 24 hour turn around I was shocked. Guess it helps to be tested at the UW Seattle liver department

Wishing all the best!

Pepperann · « **Reply #135 on:** February 16, 2019, 09:48:57 pm »

Well dang,
I successfully completed a 12 week treatment of Epclusa for genotype 3a february 2017. I have been dealing with up and down fatigue for the last 10 years. I have a lot of energy naturally so it was hard to differentiate the hep c, menopause, (58 yr old female)etc., and I decided after having issues with the thyroid to try and get to the bottom of why after having perfect numbers with the liver why I was feeling like shxx.
After reading that Epstein Barr can be the root problem for thyroid issues I decided to get tested for Lyme's disease and Epstein Barr. Well not only were my numbers off the chart for epstein barr but I tested high for the hepatitis c antibody. I am taking valacyclovir 3x a day for 60 days. I am writing because I think anyone that is going into treatment for hepatitis C should also be screened for epstein barr & Lymes disease. 90-95% people carry the virus due to mononucleosis the kissing virus you got back in school. I never had mono but did have strep throat. (same thing).
Does anyone else have experience with this? My Naturopathic Dr which works east & western med. will test me for hep c in 30 days due to the reactivated Epstein Barr can cause false readings for Hep C & H.i.v.. Epstein Barr is what they call the virus that was originally called mononucleosis that is a reactivated viral infection in the body with quantitative antibodies showing up in test. Most people ward it off until the immune system is compromised. Like chicken pox & shingles.

Lynn K · « **Reply #136 on:** February 16, 2019, 10:14:44 pm »

Sorry about your health issues that sounds rough

Just wanted to add that anyone who has had hep c in the past even if cured will always test positive for hepatitis C antibodies. They are not the virus antibodies are your bodies defense mechanism they are made by your own body when trying to fight an invading virus.

We will always and forever test positive for hepatitis c antibodies as long as we don’t test positive for the virus on the HCV RNA by PCR test we are still free of the virus. There is no reason to have hep c antibody testing done the result is known.

The only thing that would cause a detected result on the HCV RNA test to have a viral load would be a post treatment relapse, which is very rare, or a whole new infection.

slats1056 · « **Reply #137 on:** February 17, 2019, 12:34:48 pm »

NEWS FLASH!!! My sixteen week re-treatment with Mavyret is officially done! Took My last dose this morning. Will be updating with lab result at 4,12, & 24 weeks post Tx. as they become available! Hope everyone is doing well. Heplandia is a great place to celebrate small miracles . I am glad to have such an extended family even though I have never met any of You personally ! You guys are great!

The unofficial Jester of Heplandia,
Slats

lporterrn · « **Reply #138 on:** February 17, 2019, 02:25:09 pm »

I think we should make your title official, Jester.

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Author Topic: The Return of the Beast! (Read 70886 times)