Author Topic: Back Again After a Few Years (Read 17686 times)

Lukey · « **on:** May 08, 2018, 04:07:42 pm »

Some of you may remember me from a few years ago. I went on Harvoni for 8 weeks starting January 2015, was UND at week 6 w/ normal ALT and AST, then relapsed 4 weeks post.

Then I took good care of myself and didn't think about Tx much, until now.
I saw the gastro April 26 and had blood work. VL of 540,000. AST and ALT are about 65 and 113. HCV for 35 years. I'm almost age 67.

Fibrosis test says I'm F2. I guess that's to be expected for having HCV for 35 years. She said they're going to try to get me accepted for 12 weeks of Vosevi. Do I have a very high chance at succeeding this time with 12 wks of Vosevi? What I've read about Vosevi so far sounds like I have a 96-97% chance of kicking HCV's butt this time. I'm a 1a. Does 1a do good on this?

If I relapse again I feel I'm up ____ creek without a paddle.

Lynn K · « **Reply #1 on:** May 08, 2018, 08:03:01 pm »

Hi Lukey nice to hear from you

There have been a couple of people who relapsed on Harvoni who went on to be successfully treated one of the new treatments.

I found this on the AASLD treatment guidelines for those previously treated with a NS5 medicine GT1

https://www.hcvguidelines.org/treatment-experienced/gt1/ns5a

“Recommended Regimen
Sofosbuvir/Velpatasvir/Voxilaprevir
The placebo-controlled, phase 3 POLARIS-1 trial evaluated a 12-week course of the daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)/voxilaprevir (100mg) in patients with a prior NS5A inhibitor-containing DAA regimen. The majority (61%) experienced a failure with a combination regimen of an NS5B inhibitor plus an NS5A inhibitor, such as sofosbuvir/ledipasvir (Bourliere, 2017). The overall SVR12 rate was 97% (146/150) in genotype 1-infected patients. SVR12 rates were 96% (97/101) for participants with genotype 1a infection and 100% (45/45) for those with genotype 1b infection. A single genotype 1-infected patient experienced relapse; this individual had subtype 1a infection and cirrhosis. Baseline RASs and the presence of cirrhosis were not significant predictors of virologic failure in genotype 1 infection. Serious adverse events were similar between the placebo and treatment arms; only 1 patient discontinued therapy due to an adverse event. Headache, diarrhea, and nausea were more common in those patients receiving sofosbuvir/velpatasvir/voxilaprevir compared to placebo.

So looks like your odds of being cured with 12 weeks of Vosevi are about 96% as you said. Also the one person who relapsed GT1a has cirrhosis I am assuming without finding the study the other 3 who failed may have discontinued treatment (97/101) so it does sound like you have a good fighting chance.

Best of luck to you please let us know how it goes

Lukey · « **Reply #2 on:** May 08, 2018, 09:08:45 pm »

Hi Lynn,

Thank you.

I remember you.

The 1a with no cirrhosis seems to have an excellent chance. I wish I fell under that 100% 1b category but 96% should take care of it, though it will be a nail biter until I get SVR24.

Lukey

Lukey · « **Reply #3 on:** May 08, 2018, 09:13:55 pm »

Congrats on getting free of HCV. Were you F4? What are you now?

If I do happen to relapse on Vosevi, I can still treat later with something else and kick it later, is that right?

Any every time you treat, doesn't that help reverse the scarring / fibrosis?

Lynn K · « **Reply #4 on:** May 09, 2018, 12:32:24 am »

I was F4 diagnosed in January 2008 with a liver biopsy. I had been getting biopsies every 5 years. Five years earlier in 2003 I was F3.

When I was diagnosed F4 I had probably been infected for 30 years.

When I was treated and finally cured on my 5th and last treatment I had been infected for 37 years and had the official cirrhosis diagnosis for 7 years.

I had a Fibroscan done just before I started that treatment the result was 27. One year after I finished treatment my Fibroscan result was slightly higher at 33.

My before treatment platelet count had been around 80 to 90 with normal being 150. After treatment my platelet count has been holding steady at a slightly improved 110. Still below normal but improved.

So no not really any regression of my cirrhosis but I had been down that road for a long time so it is a very long way back for a patient like me. For those with less damage their odds are much better than mine and even a few here recently diagnosed with early cirrhosis have had regression from F4 to F3 based on their Fibroscans. For myself I think I might ask my doctor about having a Fibroscan in 2 years when I am 5 years post treatment but what I am looking at right now is my platelet count. I figure if it should ever rise to normal that would be a very good indication of a functional improvement in my liver. But so far it has been steady for the last 3 years so we will see I guess.

But the good news is I shouldn’t get any worse unless I get liver cancer. I am still at greater risk of HCC but with being cured that risk is also much reduced. I was having annual upper endoscopies because I had developed grade 3 esophageal varicies that needed to be banded back in 2012. This year my doctor said we can now reduce that to every two years.

I doubt you will relapse but I can surely understand your concern. I am sure that if you should relapse there will be another treatment for you. But really your odds of being cured are very good.

Yes the time spent with no viral load on treatment and having normal liver enzymes does at least cool off your liver for that time and give it a break from the virus. Don’t think 8 weeks while on treatment would be enough time to allow regression of damage but at least no damage was happening during that time.

The AASLD says that for those cured who are F2 or less can go back to living as someone who was never infected. No additional follow up will be needed. With only F2 your liver is still healthy enough to to recover from the damage done by the virus.

For patients who are F3 or F4 they will still need to be followed for their liver. I have blood testing and abdominal ultrasounds every 6 months and I see my hepatologist once a year

Like you, I was Genotype 1a. I just turned 60 last month. My pre-treatment viral load was 2.4 million IU/mL.

But really basically for a 60 year old woman with cirrhosis for 10.5 years now I think I am doing pretty good. Sure when I mow the lawn I kinda hurt in my back and hips and I should definitely eat better get some exercise and could stand to lose 30 lbs. but other than that I feel fine.

I bet you get cured this time around. If they can cure me they can cure you

Good luck

Mugwump · « **Reply #5 on:** May 09, 2018, 09:34:07 pm »

Hi Lukey!

Great to hear you are taking another kick at the can. Your situation really got my hackles up about reduced treatment duration approvals by the insurance industry. We cannot know whether 12 weeks of Harvoni would have cured you, but indeed it might have regardless of whether or not you have the gt1a variant resistance to ledipasvir. The numbers who did not succeed with their treatment because the treatment was truncated to 8 weeks for financial reasons is something which should be carefully examined.

My situation was such that my specialist had to really pull strings to get a full 24 weeks of Harvoni. I may not have completely cleared with only 12 weeks because I was still strongly detected at 5 weeks. At EOT I was not certain at all whether or not I had the ledipasvir resistance because, I had no EOT test or other PCR RNA testing done during treatment. Then when my treatment was finished I had to wait an absolutely agonizing 14 and a half weeks to find out that I was SVR 12. Because there was a severe shortage of test kits at the time.
The treatment was fine but the waiting post treatment for me was almost as bad as having a 14 week long root canal treatment!
So in a way I can sympathize with your plight.

I wish for you as much happiness and success as I have been blessed with by finally being cured of HCV.

I have the feeling you are going to succeed without a hickup this time. You certainly deserve it!
I know everyone here is pulling for you with all their best wishes.

All my best
Eric (the Mugwump)

Lukey · « **Reply #6 on:** May 09, 2018, 10:07:06 pm »

Thank you Lynn. Very interesting info.

I kind of wish I hadn't sat on my hands so long but I wanted the new meds to get developed and then get on something like this.

We do OMAD and we love it. Also called Fast 5 by Dr Bert Herring. I only eat during 5 hours a day, then I fast on water for 19 hours.

Lukey · « **Reply #7 on:** May 09, 2018, 10:32:53 pm »

Thank you Eric.

Glad to hear you've cleared HCV.

Do you people think my eating only during 5 hours a day is a bad idea during Tx? And if not, how about 8 hours on and 16 hours fasting on water? I've been doing this for over 7 months now. I'm very onto whole foods, mostly organic. No grains or dairy. Healthy whole foods with lots of vegetables and fruit.

But I just want to make the best of this 12 weeks and free myself of HCV.

Mugwump · « **Reply #8 on:** May 10, 2018, 12:49:46 am »

Honestly Lukey, the easier you are on your liver during treatment the better IMO. Heavy meals during treatment seemed to be a burden for me, but then again I am cirrhotic. If found it best to spread out my eating during the day and not consume large meals. Certainly good hydration and a healthy diet during treatment is essential to help the liver normalize more quickly.

As your enzymes normalize expect your appetite to increase though. For me it was magical, food started to have the effect it should, my digestion, strength and overall health improved drastically over night. For some of us the effect of having normal liver functions for the first time in many years is very dramatic and an eye opener about how sick HCV was really making us.

It took almost 6 months post treatment for my bilirubin levels to drop down to a point which they should be for healthy liver function. So how much healthy liver I actually have left is very hard to quantify unless I undergo another biopsy and or fibroscan test.

The one thing I did during treatment that helped the most for me was to start to consider myself as no longer incapacitated by doing many things that were difficult before because I was feeling sick most of the time. Most amazing for me is how clear my memory and mind has become with normal liver functions. I can learn and play difficult pieces of classical guitar music as quickly and accurately as I did when I was in my twenties and early thirties!

I have studied up on web coding and am starting to record and will be teaching and writing music again soon. This is a web site I recently wrote for my brother Chris who is a luthier and instrument repairman. https://chrisluthier.ca/index.html

The Gallery tab on his site has me playing Lagrima, a simple piece by Francisco Tarrega I recorded using a beautiful classical guitar he constructed for me in 2005-6 when I was still very sick after my first treatment failure with interferon.

HCV had put my life completely in limbo before I was cured, all I could do before 2015 was try to forget that I had the disease, I was out of work and almost out of hope. My wife and family could only watch as I became more and more despondent.

What can become very difficult for some of us post treatment it is to stop considering ourselves as a sickly walking bio hazard. So just to let you know, if you do find the old HCV caused habits of fear and worry still lurking in the back of your mind even after you are cured, this is perfectly normal. But a new lease on life for all ex-heppers is blessing that we should share and celebrate.

Cheers
Eric

Lynn K · « **Reply #9 on:** May 10, 2018, 01:35:35 am »

I have heard multiple small meals a day like 5 meals vs 3. If you like the extended fast that is up to you but I don’t think most dietitians feel that is a good idea. With an extended period of fast the risk for many people would be the tendency to overeat due to hunger.

But if it is working for you as long as you are getting good nutrition and keeping hydrated I don’t think it should be a problem.

Lukey · « **Reply #10 on:** May 10, 2018, 01:49:05 pm »

I know what you mean about the appetite. I used to get IV Vitamin C infusions sometimes and the only effect of them was that I had a great appetite for about 1 day. Food smelled and tasted better. It was like I had forgotten what it was like to have an appetite like that.

Dr Tom Levy uses IV-C and also Liposomal Vit C to treat HCV. I pursued it once at a local clinic but they didn't consult with Dr Levy and I didn't get enough to treat HCV. I guess they've cured Hep c with about 10 daily IVs of 50-100 grams of IV-C. I knew a guy who used to do his own IV-C every day. I was afraid he was going to kill himself. He was trying to clear HCV.

Can I ask your age, Eric? that's great about getting clear headed. Actually OMAD has done that for me. I am MUCH more clear headed and if I get rid of HCV I will probably get more clear headed. 12 hours after the last meal the body goes into cleanup mode and burns up half burned proteins in the cells. When I fast 20 hours, I'm in cleanup mode / ketosis for 8 hours. This does wonders for the cells and improves their communication.

I'll play it by ear. It's only for 3 months and OMAD will be there waiting for me after 3 months. I just want to make sure to kiss HCV goodbye.

Lukey · « **Reply #11 on:** May 10, 2018, 02:17:09 pm »

Eric, That's nice playing. Beautiful. Very nice guitars there too.

OMAD got me so I'm no longer afraid to post my pics online and have posted them on the OMAD forums and much to my amazement, they think I'm handsome, LOL.
This pic isn't my favorite but it's been on my facebook page and I just don't seem to care what others think about it any more.

So, to help you put a face with a name, here I am :

Lukey · « **Reply #12 on:** May 10, 2018, 02:23:13 pm »

Thanks again Lynn. Glad to hear it. I'll play it by ear and take it a day at a time, and will not miss any doses for sure. I could say I'll eat during an 8 hour window on Tx but I'm so used to OMAD that I doubt I'd be hungry after a morning snack of fruit and a hearty meal a few hrs later, unless, as Eric says, HCV *jumps the ship* and I get a newfound hunger, which I'll look forward to. I can then adapt to the newfound appetite by possibly eating bigger meals. But I might wait until after Tx to really focus on OMAD again. I'm going to call Gilead if I can and see if I can run this by them and see what they say about OMAD and meal timing. Personally I don't think it's going to matter much either way. I think the meds are made to stay in our bodies for __ hours per day.

I just want to *roll out the red carpet* for HCV on it's way out of my body.

Since being on OMAD, I feel so much more calm and together. Both of my eyes look the same. I have a look that's all my own. I don't feel I have to try to look a certain way any more. I just plain do not care what others think of the way I look any more.

Mugwump · « **Reply #13 on:** May 10, 2018, 11:41:22 pm »

I'm 65 going on 20. Getting even for all the years HCV stole from me. No thoughts of retiring for this camper, I have far too many things to do as yet and fish to shake hands with for only one life time.
I am on OAS (old age security pension adjustment) in Canada with no corporate pension. So setting out to work only at that which I chose to do is now finally possible. If we were to rely only upon OAS and my wifes pensions then we would not be able to get by.

My music performance and the necessary communication skills to teach, compose and arrange for the craft at a higher level are only increasing now that I am finally free from the sword of HCV over my head.

I am sure there are also things you can do well once the hell that is HCV is removed from the equation of your life.

My best advice is to keep yourself active and engaged during and after treatment. For me this part of the equation was and is a very important part of being cured of HCV. And dealing the damage it does long term to both our psychological and physical well being.

Eric
https://drive.google.com/file/d/0Bxiw8Fciz7N7bkdzVVh2NXBZZFk/
Seems this forum site does not like google drive settings so instead my mug shot is at the above link.
Warning my face is still under copyright and may only be reproduced with permission from the beyond but is free to copy and reproduce on other planets or in another galaxy far far away!!!!!

Lynn K · « **Reply #14 on:** May 11, 2018, 03:03:17 am »

Nice pics guys

I don’t have a pic but I have a video from 2001

https://youtu.be/-045saAP5HU

Need to edit not really 8 minutes long really 5 with 3 minutes of blue screen

Lukey · « **Reply #15 on:** May 11, 2018, 03:10:53 pm »

Thanks for the replies.

Lynn, I'm too chicken to do that.

Lynn K · « **Reply #16 on:** May 11, 2018, 06:30:59 pm »

Heck you only go around once lol.

That was my first of about 204 jumps. I haven’t jumped in a couple of years need to get back out there but just been too busy lately

KimInTheForest · « **Reply #17 on:** May 11, 2018, 10:55:55 pm »

Hi Lukey. Good to hear from you! I remember you from 2015 when I was treating with Harvoni+ribavirin. I hope the Vosevi works for you!

I would like to know how to give myself IV-C so I could do it daily, like that guy you know is doing. I am currently getting it from a clinic 3x weekly. Helping me with some serious health problems. But not cheap.

kim

Lukey · « **Reply #18 on:** May 16, 2018, 04:07:07 pm »

Quote from: KimInTheForest on May 11, 2018, 10:55:55 pm

I would like to know how to give myself IV-C so I could do it daily, like that guy you know is doing. I am currently getting it from a clinic 3x weekly. Helping me with some serious health problems. But not cheap.

kim

Thank you.

You can get the IV bags from online lab supply stores. Then you have to mix ascorbic acid Vit C with baking soda to make sodium ascorbate. The other guy used to do that. With the new meds, he probably got cured though I haven't heard from him. It's very risky. I doubt I'd do it again.

Lukey · « **Reply #19 on:** May 16, 2018, 04:08:12 pm »

Called the gastro office today. She's been real busy up there. I haven't been approved for Vosevi yet. I didn't ask her to hurry up. She needs to schedule me an MRI because a cyst on my kidney grew since the last time and they need to make sure that's all it is. In most cases, these are harmless. I also have tiny polyps on my GB.

Now I wish I'd called sooner to ask for the results of my ultrasound. If I hadn't called today, I might have had to wait longer for the MRI.

I hate it when their office is so busy that it has to delay my Tx for a disease I've had for 35 years. But it shouldn't take too much longer.

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