Author Topic: Conflicted about starting treatment (Read 18611 times)

BuyAVowel · « **on:** April 27, 2016, 07:54:19 pm »

Hi everyone.
I am looking at generic harvoni as an option and was hoping for some feedback.

A little about me:
I'm 30 and I was diagnosed in 2013 by chance when a new Dr ran a bunch of tests when I asked for a physical as a new patient.
I don't know how long I've been infected, or how I was infected. My mother caught hep c when I was 12 from a blood transfusion, and died of heart disease when I was 26. My dr thinks maybe I caught it from her somehow, like sharing a razor.

I am asymptomatic. I have normal liver enzymes and a fibrosis rating of <1. My viral load at diagnosis three years ago was 44,000. It's now about 350,000.

I am better than I was at diagnosis, but still afraid. I have a warped view of chronic illness; growing up in a house where people got sick and never got better with heart disease and diabetes afflicting both sides of my extended family, and watching my mom deteriorate over 20 years. The past couple years has been educational.

Separately, I've never had to take a medication for something; I don't drink and don't even like taking aspirin, and I'm very concerned about an 8 week regime of something.

I was excited about harvoni because of how minimal the side effects were reported to be. However I've heard about people with lasting side effects long after treatment is ended. I've even some random statements about harvoni causing liver cancer in some people. I couldn't find anything to support that, although I was reading a study this month discussing correlation between hcv direct acting anti virals with recurrence of tumors in patients who had previously had liver cancer. I haven't read enough yet to know how much weight to give this information.

Has anyone heard of that; a link between harvoni and liver cancer? Can anyone who has undergone treatment comment on that?

Separately, I'm concerned about taking a medication that could cause lasting problems of any kind, when I haven't experienced any symptoms yet from the hep c. I felt really guilty after my diagnosis, for not knowing how this happened, and feeling like it was all my fault. I would hate to end up in a scenario with health problems from a drug that I choose to take voluntarily and didn't need to.
..nor do I want to risk the slew of complications that comes with hep c.

I feel like I'm at a stale mate, and was hoping maybe I could get a new perspective from people who've lived with this longer than I have, and maybe have already gone through treatment.

Thank you in advance.
BaV

AllShookUp · « **Reply #1 on:** April 27, 2016, 09:34:45 pm »

From what you said, I would suggest that you wait a couple of years before seeking treatment.
I also would not worry about how it was contracted.

KimInTheForest · « **Reply #2 on:** April 27, 2016, 10:42:57 pm »

Welcome to the forums, BuyAVowel!

I think most of us have felt conflicted about whether we should 'risk' treatment, especially with a drug that is still new, or just stay the course and wait for something even better and with no risk to come along.

And it is very common to feel asymptomatic - in other words, to feel good while living with Hep C. So why rock the boat, is the way the thinking goes.

In your case because you are young, you probably could wait a while with no significant damage or worsening of your health. On the other hand... the ability to eliminate the virus from your body forever is here now. And at some point it becomes psychologically disabling to know that you can eliminate the Hep C but are not doing so. There is indeed something to be said for just getting rid of the damn thing.

Most people seem to have no problem on the new drugs, and no bad aftermath. So I think you could assume that would be your scenario too.

The correlation to liver cancer was the recent piece of news from the international liver conference in Barcelona earlier this month, when researchers presented evidence of a recurrence of liver cancer in people while they were on the new Hep C drugs or immediately post-treatment. The researchers theorized that the new drugs (DAAs) may be interfering with the body's innate immune surveillance system, which is what normally suppresses emergent cancer anywhere in the body. The research that was presented in Barcelona involved patients with cirrhosis and previous known incidence of liver cancer. Still, it is worrisome (the suppression of immune surveillance), and could potentially affect a wider pool of people than the small group documented in the study.

kim

Coach Mike · « **Reply #3 on:** April 28, 2016, 11:30:13 am »

Hi B,
You seem to be very "accepting" of the fact you have HCV. If it doesn't overly bother you mentally, and that seems to be the case, waiting might be a good option. The new drug are very effective, but very expensive. Even the cheapest generics cost around $900 for 12 weeks. I imagine 3-5 years down the road, these medicines will be prescribed like antibiotics and cost very little in comparison to today.
You have an infectious disease, but one that's hard to transmit. Still infectious however.
Personally, I would treat. One of the hardest parts of dealing with HCV, for me, was knowing I had a disease that could be cured, but couldn't afford to buy the treatment.
Good luck,
CM

BuyAVowel · « **Reply #4 on:** April 28, 2016, 05:13:01 pm »

Thank you everyone, for the welcome ama the comments.
Regarding the comments that I should wait-
I've heard with the TPP passing generics may no longer be available to get. I expect that medication availability and pricing will get better with time, but without knowing the timeline (between cost and insurance hurdles) the generics appear to be a window of opportunity.

BaV

Coach Mike · « **Reply #5 on:** April 28, 2016, 05:15:54 pm »

I couldn't agree more!
cm

KimInTheForest · « **Reply #6 on:** April 28, 2016, 05:49:09 pm »

Quote from: BuyAVowel on April 28, 2016, 05:13:01 pm

Thank you everyone, for the welcome ama the comments.
Regarding the comments that I should wait-
I've heard with the TPP passing generics may no longer be available to get. I expect that medication availability and pricing will get better with time, but without knowing the timeline (between cost and insurance hurdles) the generics appear to be a window of opportunity.
BaV

Very important point, Bav! I had not thought about the implication of the TPP on generics! I have been busy battling it on every other front, but had not considered that one thing very close to my own life and heart - access to generic Hep C meds. You are right - this window of opportunity on the generics may soon close.

kim

FutureThinker · « **Reply #7 on:** April 29, 2016, 01:06:17 pm »

Hi B and welcome! Here are some of my thoughts if I were in your shoes:

First, discuss this concern fully with your doctor, as he/she knows your full history/labs,etc. that we do not not have privy to. Maybe even get a second opinion.

Second, this disease progresses very slowly. I had it for ~ 36 years before I had any symptoms (fatigue).

Third, we are in such dynamic phase of development in treating HCV right now that new drugs are coming out at a fast pace and getting better and better.

Fourth, since these drugs are so new (Harvoni has only been on the market since Oct. '14) there are no long-term studies out yet on their long-term effects. This was my primary concern when I was diagnosed and contemplating treatment. But since my liver enzymes & fatigue were increasing, I felt it was time for treatment.

So, I would wait. As I often say, the future is bright and there are going to be a LOT of new facts out about these DAAs in the next 5 years. Good luck in your decision, FT

Mugwump · « **Reply #8 on:** May 03, 2016, 04:56:39 pm »

BuyAVowel, there is much to consider when you are diagnosed with HCV. The most important aspect is that the disease will over time effect your immune system to some extent.

Do not fall into the trap thinking that your viral load in the blood stream is an indication of how sick you are. At times over the years I felt fine, worked full time and had the least amount of flu like symptoms yet my viral load was over 10 million.

As others have stated do not waste precious energy and spirit in the self accusatory cycle of shame, anger and worry about how you were infected.

In some circles insurance companies, medical practitioners have created a public perception that HCV is a self inflicted wound. This attitude towards the disease is one of the reasons why treatment is being portioned out and this appalling self righteous, red neck attitude toward HCV infection must stop and shames the very core of the angels of our best shared values.

It is imperative that you have your liver enzymes checked every six months. Obviously some people who infect take longer to develop any symptoms at all. But therein lies the problem, you can be completely asymptomatic and still be developing liver damage until the damage is extreme.

If you can, insist upon learning which genotype you have because this is important in determining which form of treatment is most efficacious. Even though direct acting anti viral meds are quite new it is turning out that HCV is quite complex and has variants that respond differently. Harvoni might not be the best choice, in fact until you know which strain of the virus you have and if it is a resistant variant Harvoni or a generic of it, might not work.

At least see an infectious disease specialist that is up to speed because you deserve the best possible advice. If you can be treated now, and most likely you can, get treated now before the disease does any liver damage!

I have lost employment, quality of life, peace of mind and many friends and a few relatives to this disease. Yes there is a good chance that you will not be effected long term having this disease but there is also a 70 percent chance that you will over time develop other extra hepatic manifestations from this insidious disease. Your infection by definition is not chronic, do not let it reach that point.

It is absolutely asinine that the treatment costs so much that treatment is being delayed until it becomes a life saving issue. So say some of the best minds that study this problem.
http://www.wjgnet.com/2150-5349/full/v7/i1/33.htm

All the best at dealing with getting treatment early on and a long life free from HCV infection.

Eric

BuyAVowel · « **Reply #9 on:** May 03, 2016, 06:44:56 pm »

I appreciate all the new responses.

I do have a specialist, since I was diagnosed. My blood worked is checked on an ongoing basis; liver enzymes normal. My genotype is common, 1a I think off the top of my head, and I recently underwent more tests for zepatier. The insurance denied the zepatier, but the test results showed me resistant to Viekera pak, but not to harvoni.

I have been encouraged by a lot of the comments like this one, KimInTheForest-
"Most people seem to have no problem on the new drugs, and no bad aftermath. So I think you could assume that would be your scenario too."
and the other replies as well.

Another issue I was hoping to get feed back on was the potential link between Harvoni and Cancer. I know that a recent study was in regards to patients who had already had cancer, and that they were measuring the percentage of tumor reoccurrence in those patients.

Then, I found this article,http://www.medscape.com/viewarticle/862041, which references the aforementioned study, but also a different one. In the other study they found a 3.2% (9/285) rate of hepatocellular carcinoma among patients after DAA treatment who had not previously had cancer. These were new cases.

I will admit that the 3.2% consisted of people who were already experiencing Cirrhosis. However, I've seen some random comments in places from people who were less advanced, and developed cancer during or immediately after Harvoni treatment, specifically liver cancer.
The lead investigator was quoted saying-
"I do not think that direct-acting antivirals are directly responsible," said lead investigator Stefano Brillanti, MD, from the University of Bologna, Italy.

However, Dr Brillanti reports receiving research grants from Gilead Sciences and being on the advisory board for Janssen and Gilead Sciences, so I don't know how unbiased his opinion is.
He went on to say in the article-
"The hypothesis is that immune surveillance may be reduced too rapidly," he told Medscape Medical News. "You have an immediate drop in viremia, but also attenuation of inflammation. I think inflammation is a bad thing in terms of hepatitis progression, but it may be a good thing in terms of controlling cancer."

I think at the moment this is one of my biggest concerns regarding side effect risks.
I was hoping to hear if anyone has had any experience with cancer or tumor development following treatment. Furthermore, can people who've completed treatment and are 6 months or more out speak to the lack of these?

Thank you everyone
BaV

FutureThinker · « **Reply #10 on:** May 03, 2016, 09:17:17 pm »

Hi again, BaV -- the long term studies are forthcoming, all of these are so new there just isn't enough data yet to say unequivocally how these DAAs will affect various aspects of the body. And, these are only 1 or 2 studies, certainly not enough info yet to make any definitive claims. I totally understand your concerns about how these drugs affect our bodies, just as I was. But......... the choice right now is treat w/o long term data, or wait (determined w/ your doctor) until more data is known. For instance, the Zepatier pre-treatment RAV assessment -- this is the first DAA to require this. (I actually discussed this at length with my doctor before starting the Harvoni, to no avail; I believe (imho) it will be required for all DAAs in the near future.) We are the pioneers for these DAAs.

As for my course of treatment with Harvoni, it has been uneventful and actually enjoyable....... more energy, much better mental clarity and overall just feeling better. I have 2 weeks to go to finish my 84 pills, and I am so very, very grateful that it has been this way, as compared to what those before us had to endure with the interferon and RIBA. We are in a very exciting and dynamic phase of HCV treatment now. But the long term data is yet to come. Again, good luck with your decision and take care, FT

Mugwump · « **Reply #11 on:** May 05, 2016, 04:52:36 am »

BuyAVowel; it is logical that HCV caused inflammation will cause the production of natural interferon during the death of liver cells. And yes if you suddenly reduce the level of infection then the natural production of the trigger agents for interferons will be effected.

There is so much to learn about how HCV manages to trick the immune system and as I have stated in numerous other posts we are caught between a rock and a hard place with understanding the dangers of treating this disease.

However to my way of thinking there is a certain logic in treating the disease well before the causes of increased risk of cancer occur. The predominant risk of cancer comes from dying liver cells and malfunctioning liver structure and the problem with HCV is that it does not create liver malfunction to a degree that will cause liver cancer until there is pronounced inflammation and the level of ongoing hepatocyte death reaches a stage where the liver can no longer replace the dead cells adequately.

Therefore it is logical that the risks of developing liver cancer from treatment before severe liver damage occurs are much lower than waiting until the disease progresses past F1 pre cirrhosis.

I just wonder if using lower levels of interferon tx in combination with a high cure rate DAA might reduce the risk of treatment caused cancer especially for those who are at a higher risk level? It looks like all DAAs that work as fast as Harvoni by using the same mechanisms will increase the risks we are discussing.

Here on the forum we have already suddenly lost a member to HCC post treatment.

I will ask my specialist nurse if this possibility is being considered. Before Harvoni was approved I was considering a retreat with Peg interferon and a DAA and my specialist said it was a possibility. I was the first person here to be treated with Harvoni and was approved for treatment 2 days after Ottawa approved the drug.

My original treatment in 2004 failed most likely because for some reason or other I had very bad tolerance for Ribaviron but I tolerated the peg interferon quite well.

Either way, touch wood and fibrotic liver tissue I have no signs of cancer 1 year post treatment and my liver was a Texas sized hunk of fatty bruised and confused pork

Lynn K · « **Reply #12 on:** May 06, 2016, 12:50:50 am »

Incidence of not previously diagnosed incidence of liver cancer (HCC) are limited to those already at risk of HCC patients who before treatment are at F4 cirrhosis. Patients who do not have cirrhosis are not at risk for liver cancer.

I had hep c for 37 years and was a 3 time null responder to interferon plus relapsed after a 12 week treatment with Sovaldi/Olysio but was cured last year after treating for 24 weeks with harvoni plus 15 weeks of ribavirin.

I was diagnosed with liver cirrhosis on my 4th liver biopsy in Jan 2008 which was 30 years after I was likely infected.

Personally I had no lasting side effects from my in total 5 treatments for hep c

Good luck whatever you decide

donna kaye · « **Reply #13 on:** May 07, 2016, 03:28:56 am »

I too feel confused re treatment.I am in Aotearoa (New Zealand)It looks like Harvoni will be approved (at no cost)for people who are on waiting lists for liver transplants, & are very ill.Viekira Pak looks like it will approved for geno type 1 (free of charge) for those who do not meet the criteria for Harvoni. The warning I read re Viekira Pak concerned me, I do not have cirrhosis, I have been told that my fibro scan result of 5 point 2 is pretty good, my baseline bloods are also pretty good.However I had started the process re gaining harvoni re the redemption trials via greg Jefferies in Australia, that carries a cost, however that is not my concern, I just want to take the option that provides the best chance of clearing this ugly virus.I have buried alot of folk over the last two years.There is no national organisation in this country, & very little support, plenty of mixed messages though.I am confused & nedd to make a decision fairly swiftly.I am also due to have all of my teeth out in June, the process is expected to take 4/5 months, I assume i ought get that out of the way first, as having bad teeth is impacting my body & my immune system.Any pointers, very very welcome.Cheers

Philadelphia · « **Reply #14 on:** May 07, 2016, 04:08:35 am »

With that degree of fibrosis I wouldn't think twice about Viekira Pak - I'd go for it. If money is not a concern and you can get someone to treat you, check your bloods and importation is not a problem to NZ by all means try Harvoni but both meds have a very similar success rate. And remember,the people who were very adversely affected by VP had a significant degree of liver damage. Much more than yours.

Gaj · « **Reply #15 on:** May 07, 2016, 09:45:58 am »

Viekira Pak for someone who is genotype 1a will require Ribavirin to achieve similar results to Harvoni but if your are a 1b with your fibrosis score then the Riba will not be needed to get similar results. So if you are 1b, free VP is probably a no brainer but if you are 1a and need Riba then there is an argument for paying extra for generic Harvoni to avoid Riba sides if you can afford it.

BuyAVowel · « **Reply #16 on:** July 09, 2016, 11:31:56 am »

I just wanted to check back in and say thanks again to everyone who responded. Through strange and serendipitous events that even baffled my doctor my insurance company sent a letter approving harvoni coverage.
What ever your divine beliefs, I took that as a sign.

I'm 13 days into eight weeks of harvoni. I've had no side effects other than a few slight headaches the first few days. I didn't expect to feel much different since my viral load and fibrosis score were so low, but I've had so much energy its amazing. Despite my dr. Saying that I didn't have any significant hep symptoms, I feel better than I have in years.

Best of luck to everyone.
BaV

KimInTheForest · « **Reply #17 on:** July 09, 2016, 01:18:00 pm »

That's great news, BaV! So glad to hear it.

kim

FutureThinker · « **Reply #18 on:** July 09, 2016, 03:01:49 pm »

Excellent, excellent news, BaV! Maybe this insurance debacle is starting to turn...... FT

Philadelphia · « **Reply #19 on:** July 12, 2016, 07:26:50 am »

Wonderful news BaV!

tealblue · « **Reply #20 on:** July 24, 2016, 04:38:35 pm »

hi i would just like to say the Hep C doesn't just effect your liver. It creates much more problems ; they don't take years to feel. like aching bones and muscle; brain fot; degeative bone disease; tired, remember this poison blood it traveling through out your whole body, everything is effective. Just saying the sooner the better. it is playing a toll on your body whether you feel it or not. Just saying. Get the treatment; why wait?

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