Hep C Discussion Forum

LC · Senior Member

RE: Thinking about delaying treatment

justvlm · Veteran Member

Thanks LC - very good advise and much appreciated. BTW - How are you feeling / doing with your treatment?

LC · Senior Member

I thought of something else, try to have them start your treatment (if you're accepted into the trial) on Friday's if that's the day you are easily able to take off. Also, that way you have a little time for your body to adjust to the meds before you have to go back to work.

LC · Senior Member

It's probably harder to go through treatment when you have additional stress, like losing a long-term job. I lost a long-term job about 4 years ago, along with most of my department, and it was hard. I work now, at a fairly new job, and it's not especially to my liking, but I am just trying to take things one day at a time. It's all we can do. I haven't told my work about the HCV or the clinical trial, I work in a hospital and my coworkers are pretty religious and close-minded bunch, so hopefully I won't have to.

It's hard to turn down free treatment when offered, especially when it's is so expensive. AbbVie does have a pretty good success rate, at least with the genotype 1's treatment naive's, and I think most of the reported side effects have been pretty mild.

I hope you don't get Ribavirin either, especially if they don't think it's going to make much of a difference for your outcome.

justvlm · Veteran Member

Hello

I went for the AbbVie screening last Friday. All fingers and toes crossed that if chosen that I don't get the Riba arm. There are 3 arms to study, 2 w/o riba and one with it.

I wouldn't be so concerned except my company is closing my office and I interviewed today with a competitor. I will be doing basically the same thing and the office seems pretty laid back. I will have to train on different software so I'll be working closely at first with co-workers. I'm not a generally high-strung type, but I'm wondering if I'm putting too many eggs in my basket.

There is also the frequent clinic visits 2 hours away - every other week for 12 weeks. The new job is pretty flexible with work hours and has a compressed week: 8.5 hours M-Th, 6 on Friday. So if I can be sure that all clinic visits can be on Fridays.... thinking, thinking, then I wouldn't have to discuss this with the new boss about a swapping the short day (I'd rather not get into WHY).

I guess I'm just rambling because I have been stressed for the last few weeks - ending a 9 yr job, HCV back on the front burner, new job - YIKES.

LC · Senior Member

Well I had my 2 week labs done, and they said it would be another week before they knew anything. They weren't flexible about when I was able to come in for my 4 week lab, and no nurse will be there on the exact day of 4 weeks, so I am going to have to take off work. cry I pouted about that for a little bit. I'm not sure why it is ok for the 2 week labs but not 4? It's not like my 4 week labs will happen on 4 weeks to the day anyhow, but they were unwilling to give me enough pills to make it thru the weekend so I could go Monday. Oh well, their pills, their rules. confuse

I found the variances in my lab results before starting treatment interesting. My viral load fluctuated 750,000 and my white blood cells went up, and my AST and ALT counts went down. I remember being extremely tired at my screening, maybe that was a factor? I am looking forward to getting the results back and seeing that viral load go down. smile

suziq · Senior Member

Hi LC,

I did 18 weeks of riba in my trial and it didn't affect me much except I got a little bitchy and my hemoglobin dropped some--not much. However, different people react differently to it. On the final result information, ribavirin made virtually no difference in SVR rate. Don't think Merck used it in their current trial. Also, the docs generally drop riba IF there is a strong reaction. You will be fine.

SuziQ

LC · Senior Member

Thank you Isis! I like to coordinate my hair accessories with my outfit. It's always nice to be appreciated for my keen fashion sense.

Isiscat2011 · Guru

Hi LC:

Even if you do have some riba side effects they should be very manageable. Keep in mind that the people who experienced severe riba sx have generally been those who were also taking Interferon with a first gen PI, which can exacerbate the sx, and they were also on tx for 6-12 months. 12 weekers on all oral combos have fared well with the riba addition.

Your mouse looks none the worse for the wear. I see her hairdo is still in place. biggrin Hang in there!

LC · Senior Member

Week 1 is done. smile My energy level came back after 3-4 days. I was scared of the Ribavirin, but so far I feel pretty good - knock on wood!

LC · Senior Member

Isiscat2011 wrote:
LOL. Isis has been trumped by a member of the canine species!
Is that mouse real? I'm not sure I like the look in that dog's eye.

Indeed the mouse is real and as shady as they come. smile Dog is just taking his body guard duties seriously.

Isiscat2011 · Guru

LOL. Isis has been trumped by a member of the canine species!

Is that mouse real? I'm not sure I like the look in that dog's eye.

LC · Senior Member

Isiscat2011 wrote:
suziq wrote:
_____________________________________________________________________________________________________________
By the way, I have spoken to my cats about attacking you and they promised they won't.

I tried that, LC, but Isis just gave me a dirty look and walked away. Sorry, things could get messy. Cats are so willful.

I see. cry Well, then I will just have to go with Plan B - hiring a bodyguard.

Isiscat2011 · Guru

suziq wrote:

_____________________________________________________________________________________________________________
By the way, I have spoken to my cats about attacking you and they promised they won't.

I tried that, LC, but Isis just gave me a dirty look and walked away. Sorry, things could get messy. Cats are so willful.

Tig · Admin

Hi Susan,

I'm so glad you went on and found treatment too! You've been an absolute inspiration to me and this forum! I'm so glad things are working out well and happier still that you keep sharing your knowledge with us here! Continued good luck to you...

Tig

LC · Senior Member

I am glad you didn't have to experience the interferon side effects! My of the people I was friendly with a couple of years ago got pretty sick on that, and I was afraid I wouldn't be able to work during treatment. The nurse was asking me a lot of screening questions, and she looked like she didn't believe me when I said I wasn't tired. I probably have forgotten what it feels like to not be a bit tired, so it feels normal. I do still lead an active life, but I am looking forward to having more energy. Thank you for speaking to your cats on my behalf, that was very kind of you.

suziq · Senior Member

Hi LC,

Actually, I really didn't pay a lot of attention to my Hep C. I decided, along with my doctor, when I was diagnosed in 1999 that I would not take interferon. He said I would most likely die of something else and my chances with the interferon were only about 30%. I was already 65 then and only Stage2. So, I monitored it and took some alternative supplements. I was on forums about it and that made me more determined not to take interferon. When the new meds began to surface, I began to look into clinical trials. Was given a biopsy by Merck for their trial and found that I have cirrhosis--so was rejected for that trial. My coordinator called several months later and I did the screening for the Merck trial the day after my 79th birthday. I was accepted and set my goal for SVR before I turned 80. That is now a reality.

I lost a close friend that I once used with shortly after I was diagnosed. However, she had continued with drug use for quite a while after I stopped and had continued drinking. I had stopped in 1966. Because I no longer drank and always asked if any medication would harm my liver since 1966, I felt I would be ok. It has only been since treatment that I have realized that I had been really fatigued for a long time. I just don't feel that bone tired fatigue anymore.

Although I was on Riba for 18 weeks, my hemoglobin did not drop much and I did not get a rash. I did get bitchy now and then.

So glad you were able to get into a trial! My trial coordinator was wonderful and I felt very safe. I feel so fortunate to be SVR !!!!!

I hope your experience is as good as mine was.

By the way, I have spoken to my cats about attacking you and they promised they won't.

SuziQ

-- Edited by suziq on Monday 13th of October 2014 01:00:51 AM

-- Edited by suziq on Monday 13th of October 2014 01:05:12 AM

LC · Senior Member

I am pretty sure this forum has rules about forum members eating other members... don't they? < runs off to check >

Isiscat2011 · Guru

LC wrote:
All you cats are making me very, very nervous.

Too funny.

But, you look so delicious in your pretty pink party dress and well coiffed hairdo, and we are cats after all!

LC · Senior Member

suziq wrote:
52baddog wrote
Hi LC:
I was diagnosed about 5 months ago with HEP C and was terrified of liver biopsy, but I got it done and found out that I am at stage 1.
I think you should do the biopsy, to find out about the stage of damage to your liver. Per my doctor every person is different it might take 5 years or 15 years to go from stage 1 to stage 4. So, I am waiting for the new treatment. But, I am cautious and get blood test every two months to make sure I have normal liver enzyme. Good luck.
__________________________________________________________________________________________________
Yes, everyone is different. I've had Hep C for over 45 years and I did not have cirrhosis 12 years ago per biopsy. I was Stage 2 ,grade 2 back then. Really had few symptoms over the years except fatigue and occasional pain in my right side. My viral load was only 800,000 at start of treatment and my enzymes had only started to rise the year before treatment. Sorry you didn't get mild anesthesia with your biopsy. My first one was no fun, but the second with anesthesia was easy. So a wait for a great new treatment should not be a problem.
SuziQ

Oh, I am done waiting, I just found my old thread from 2 years ago. smile Now it seems like everyone who was posting on here 2years is long cured. I said I was prepared to wait a couple of years, and turns out I had to before I got into a trial. Yeah, I remember I didn't like that biopsy but they did give me a local. I didn't like the ultrasound they gave me a couple of weeks ago, they were pushing down rather firmly on some tender organs. I guess I have some small polyps on my gallbladder but the liver was surprisingly ok.

I bet you've been through the wringer with this virus SuziQ!

suziq · Senior Member

52baddog wrote

Hi LC:

I was diagnosed about 5 months ago with HEP C and was terrified of liver biopsy, but I got it done and found out that I am at stage 1.

I think you should do the biopsy, to find out about the stage of damage to your liver. Per my doctor every person is different it might take 5 years or 15 years to go from stage 1 to stage 4. So, I am waiting for the new treatment. But, I am cautious and get blood test every two months to make sure I have normal liver enzyme. Good luck.

__________________________________________________________________________________________________

Yes, everyone is different. I've had Hep C for over 45 years and I did not have cirrhosis 12 years ago per biopsy. I was Stage 2 ,grade 2 back then. Really had few symptoms over the years except fatigue and occasional pain in my right side. My viral load was only 800,000 at start of treatment and my enzymes had only started to rise the year before treatment. Sorry you didn't get mild anesthesia with your biopsy. My first one was no fun, but the second with anesthesia was easy. So a wait for a great new treatment should not be a problem.

SuziQ

LC · Senior Member

All you cats are making me very, very nervous.

Isiscat2011 · Guru

OMG, lilbit. Your kitty is break-dancing! biggrin

LC · Senior Member

I bought some oatmeal bath soak awhile back ago Huey, maybe I will try that and throw some Mr Bubbles in there too.

Huey · Guru

Bubble Bath's, I know it sounds crazy, but that is how I handled the Riba Rash.

LC · Senior Member

lilbit wrote:
This is good information to know Tig. I started breaking out a little last night and didn't want to tell LC yet because she is only on day three. lol didn't want to spook her.

biggrin I am glad you are ahead of me so I can ask you questions!

LC · Senior Member

Tig56 wrote:
If you will allow me to make a recommendation, if you have itchy skin and scalp from these meds, give that shampoo from Head and Shoulders called "Refresh" a try. It has a nice cooling effect and really helped control the nagging itching, especially on the scalp. Showering in a lukewarm water temp helped as well. A OTC product called "Caladryl" which is a Benadryl/Calamine combo helps a lot as well. Good luck!
Tig

Thank you Tig, I will have to pick those up the next time I go to Walmart. It seems like scratch a lot, and I get self-conscientious about that at work. smile

lilbit · Senior Member

This is good information to know Tig. I started breaking out a little last night and didn't want to tell LC yet because she is only on day three. lol didn't want to spook her.

Tig · Admin

If you will allow me to make a recommendation, if you have itchy skin and scalp from these meds, give that shampoo from Head and Shoulders called "Refresh" a try. It has a nice cooling effect and really helped control the nagging itching, especially on the scalp. Showering in a lukewarm water temp helped as well. A OTC product called "Caladryl" which is a Benadryl/Calamine combo helps a lot as well. Good luck!

Tig

LC · Senior Member

I found this old thread I started more than 2 years ago. I had to bail on this place for awhile. It seemed like everyone was getting into clinical trials and getting treated, but poor me. biggrin I know that wasn't the case, but it was still a bit depressing to me when the clinical trial people weren't calling. Besides, I didn't have anything to report. I was trying to get into other cities trials. My insurance has a $4,000 deductible before they pay 100%, so a free clinical trial will be a huge help.

I am so thankful to have finally started treatment on Oct 10th, and that I had the option to wait on less disruptive meds. I am not married and I still work, and I still have a son in college at home who is relying on me to pay bills. I hit the big 5-0, and it seemed like I was getting sicker, more fatigued even right after waking up in the morning.

I found 1 oz hydrocortisone cream at Dollar Tree today. I have a feeling I will need to stay stocked up on that. smile I was kind of itchy before starting treatment too though. I bought some Aveeno too. I also bought new nail clippers, toothbrushes, and razors as the nurse suggested.

I take 3 different kinds of pills, 5 in the am and 4 in the pm:

ABT-450/Ritonavir/ABT-267 75 mg/50 mg/12.5 mg

ABT-333 250 mg

Ribavirin 200 mg

Here are my labs, I can see my viral load went up about 400,000. My white blood count isn't good, along with some other things.

My side effects are pretty mild so far, and I am sure I will be able to go to work. A little more tired, a little itchier, and my brain might be a little slower.

I was looking at the SVR rate and it's pretty darn good - http://abbvie.mediaroom.com/2013-12-10-AbbVie-Demonstrates-96-percent-SVR-12-in-its-Phase-III-Study-of-Treatment-Experienced-Patients-with-Genotype-1-Hepatitis-C

http://clinicaltrials.gov/show/NCT02167945 - they are still recruiting, and they even pay you $75 per office visit, which you can't beat with a stick! wink Some of you might want to get on this train before it's all FDA approved and costs boo-koo bucks.

I was looking at the calendar and I should finish on New Years Day!

LC · Senior Member

mallani wrote:
You do NOT have mild cirrhosis- there is no such thing.
YAY!!!! That is extra great news then! I only spoke with the nurse, and I called her because I was getting antsy so maybe I flustered her a bit with all my questions. I know I wrote down exactly what she said though. Oh well. Thank you Malcom!

mallani · Guru

Hi LC, Great results. The Stage is the amount of fibrosis, and the Grade is the amount of inflammation. So you have mild fibrosis, and mild inflammation. You do NOT have mild cirrhosis- there is no such thing. Cirrhosis only applies to Fibrosis Stage 4. You can certainly afford to wait if you desire.

LC · Senior Member

I got some good news back on my biopsy results! smile The nurse said I am stage 1-2 and Grade 1-2, with minimal fibrosis and mild cirrhosis. So I told her I would probably be interested in waiting for an interferon-free treatment to become available, but I would discuss it with the doc when I have my appointment next month.

I wanted to give her a heads up so she could whisper in his ear in case he was still expecting me to be ready to start with the Incivek triple therapy when I went in. She seems to think that would certainly be doable in my case. The nurse liked the fact that I was educating myself about HCV, and she said that her experience, the ones who are more proactive about the disease are the ones who do better during treatment.

I will see if there is a clinical trial I could enroll in for ACH-3102 or GS-7977 if the doc doesn't think waiting would be to my benefit. I am sure he will want to keep a close eye on the situation regardless, as will I, and I will do the best I can not to exacerbate my liver until I can get treatment. I am so happy! smile

LC · Senior Member

Mary Jane wrote:
Hey LC .. Excellent article...here's a few facts about me, from 2006 - 2012 my disease progressed from ClassI/ Stage F1 to now ClassII/ Stage II for F2 always had High viral load and normal ALT.. So for the sake of repeating myself after you turn the big 5 five O seems to be a turning point.. Being female and Caucasian does have some advantages.. If you read race plays a factor in all this as well. The IL28 B marker from further reading is sorta a predictor mine CT , but not always. So things will depend on YOU .. From your biopsy results to how the disease is effecting you life.. I had gotten to my rope's end and could not get out of bed anymore and WAS feeling sicker.. so tired brain fog.. I wanted to wait but I felt with the clock ticking I needed to take the bull by the horns.. All the best as it has been said knowledge is power..
good job, peace and love MJ
I can completely understand that MJ, and yeah, I think it's something that needs to be decided on a case by case basis. I know 50 isn't too far off for me. I just have another 14 months, and I will definitely take the results of my biopsy into consideration as well. I don't want to do myself more harm than good.
I am just happy an interferon-free treatment is likely to be an option soon, and I thought the Dr's discussion was interesting.

Mary Jane · Guru

LC wrote:
LC wrote:
I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.
I already did the biopsy a couple of days ago. I didn't like it at all, but I understood that it was necessary evil. Next time, I believe we would all be better off by my taking a Valium prior to the procedure. Sure, whether I start treatment for sit tight for a couple years is going to be dependant on exactly how FUBARed my liver is. Honestly though, I would probably be a pretty hard sale on Incivek triple therapy at this point.

Hey LC .. Excellent article...here's a few facts about me, from 2006 - 2012 my disease progressed from ClassI/ Stage F1 to now ClassII/ Stage II for F2 always had High viral load and normal ALT.. So for the sake of repeating myself after you turn the big 5 five O seems to be a turning point.. Being female and Caucasian does have some advantages.. If you read race plays a factor in all this as well. The IL28 B marker from further reading is sorta a predictor mine CT , but not always. So things will depend on YOU .. From your biopsy results to how the disease is effecting you life.. I had gotten to my rope's end and could not get out of bed anymore and WAS feeling sicker.. so tired brain fog.. I wanted to wait but I felt with the clock ticking I needed to take the bull by the horns.. All the best as it has been said knowledge is power..

good job, peace and love MJ

LC · Senior Member

LC wrote:
I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.
I already did the biopsy a couple of days ago. I didn't like it at all, but I understood that it was necessary evil. Next time, I believe we would all be better off by my taking a Valium prior to the procedure. Sure, whether I start treatment for sit tight for a couple years is going to be dependant on exactly how FUBARed my liver is. Honestly though, I would probably be a pretty hard sale on Incivek triple therapy at this point.

52baddog · Senior Member

Hi LC:

I was diagnosed about 5 months ago with HEP C and was terrified of liver biopsy, but I got it done and found out that I am at stage 1.

I think you should do the biopsy, to find out about the stage of damage to your liver. Per my doctor every person is different it might take 5 years or 15 years to go from stage 1 to stage 4. So, I am waiting for the new treatment. But, I am cautious and get blood test every two months to make sure I have normal liver enzyme. Good luck.

JIme · Guru

@Zilkster This is the journal I've been keeping.

http://hepcfriends.activeboard.com/t48295757/7977-journal/

LC · Senior Member

Here was an interesting discussion - Chronic Hepatitis C Infection: Treat Now or Wait?

I will copy and paste the gist of it in case it says you have to join medscape, and you don't wanna.

Slides/Video CME/CE Information

Mark S. Sulkowski, MD: Hello. I am Dr Mark Sulkowski, professor of Medicine and medical director of the Viral Hepatitis Center at the Johns Hopkins University School of Medicine in Baltimore, Maryland. I would like to welcome you to this program, "Chronic Hepatitis C Infection: Treat Now or Wait?" Joining me today is Dr Donald Jensen, professor of medicine and director of the Center for Liver Diseases at the University of Chicago School of Medicine.

Before we get started, I would like to note that a lot of what we are going to discuss is on investigational drugs: not everything we are going to talk about is approved for prescription in the United States at this time. To have this discussion, we need to talk about what is currently approved for the treatment of chronic hepatitis C virus (HCV) infections and what we hope will be available for our patients in the near future. Don, why talk about whether to treat now or wait? Give us a scenario.

Donald M. Jensen, MD: As you know, 13 months ago, 2 new drugs, telaprevir and boceprevir, were approved for the treatment of chronic HCV infection in conjunction with the standard pegylated interferon/ribavirin backbone regimen. Telaprevir- and boceprevir-based triple therapy proved very effective in improving sustained virologic response (SVR) rates in patients with genotype 1 HCV infection, but also exacerbated some of the adverse effects associated with standard interferon-based therapy. The course of therapy is still relatively long in duration, usually 24 or 48 weeks. With the prospect of newer therapies becoming available sooner than anticipated, we need to consider that some of our patients may be able and inclined to wait for treatment with future therapies that might be easier to take, better tolerated, and have shorter courses of treatment compared with the standard regimens used today.

Dr Sulkowski: You raise a fascinating point. From 1998 to 2011, we went without a single new drug for HCV infection coming to market. Then, 2 new protease inhibitors -- telaprevir and boceprevir -- were approved in 2011. In the short time since their approval, half a dozen new investigational agents and regimens look quite promising. Information about these agents is being widely disseminated to physicians and patients, who often raise the topic when we sit down with them in the exam room.

Dr Jensen: Ten years ago we thought we were on the cusp of having newer, better therapies for chronic HCV infections. I can remember telling patients in the early 2000s, In 3 to 5 years we are going to have a newer therapy. I think there is a little bit of a false start with the present situation because none of these emerging therapies has been conclusively shown to be effective. Many are in phase 3 trials, but the promise of these agents is terrific and better than it was 10 years ago.

Dr Sulkowski: You raise a good point. I remember a conversation I had with a patient recently. I said, "We are expecting new therapies that are going to change how we treat hepatitis." He looked at me and said, Doc, you told me that 5 years ago. This brings up the question: Which patients should we treat now? Yes, new medicines are coming, but we have patients who can benefit from therapy now. Let us talk about those in your practice you are treating now.

Dr Jensen: When the first new therapies were approved last year, we looked at all the patients with chronic HCV infection we had seen over the previous 12 months and tried to decide who should be treated first. Who should be at the front of the line for treatment and who could we put at the back? We realized we could not treat everyone at once; some of our patients had been "warehoused" for several years.

We decided to treat the patients with the most urgent need for treatment first: patients with borderline decompensated cirrhosis and patients who needed treatment so they could get their kidney transplant. We put patients with more severe disease at the front of the line. Next, were the patients with favorable treatment characteristics, who we knew would have the very highest response rates to the newer therapies. Then, in the middle, were patients we knew could wait and/or would not have very good responses, even with the new therapies. That middle group is the most problematic.

Dr Sulkowski: Let us focus on the patients with more advanced disease. We are seeing more and more patients with compensated cirrhosis in their 60s and 70s. When you look back, you find that they had their HCV infection for 30 or 40 years. We are seeing the HCV epidemic in the United States play out. These patients have significant fibrosis and we are seeing a lot of them. Part of the debate with regard to these patients is, do we treat now, knowing that current therapies can lead to eradication in roughly 70% of genotype 1 infected patients, but likely at the expense of more adverse effects in patients with cirrhosis? How do you decide? Part of making that decision is determining each patient's prognosis over the next couple of years.

Dr Jensen: That is not an easy decision. You hit the nail on the head. The issue is that there are cirrhotic patients and then there are cirrhotic patients: some are well compensated and I would like to treat those patients now, but we are sometimes forced to treat patients with borderline decompensated cirrhosis. If I had a better therapy, I would treat the patients on the borderline -- I do not know if they can wait another 2 years for a new therapy. The patients that I think are going to "fall off the cliff," I need to treat now because the risk for the development of hepatocellular carcinoma or hepatic decompensation is too great. I try to put myself in that patient's position. I meld together what I know about the disease progression and that particular patient with what the literature states to make a recommendation.

Dr Sulkowski: When we look at the outcomes with treatment, the data consistently show that achieving SVR is a cure and, perhaps more importantly, decreases the risk for liver cancer, liver failure, and death. Data from the HALT-C trial, which enrolled patients with advanced fibrosis, convincingly showed that if you could achieve eradication, you had fewer adverse outcomes.^[1]. The idea that we can make a difference and possibly offer life-saving therapy to patients with cirrhosis is what keeps us going.

Dr Jensen: The average age of the patient with chronic HCV infection today is around

55 years.^[2]As this group of patients ages, the percentage with cirrhosis will increase. It is estimated that, of the approximately 4,000,000 people with chronic HCV infection in the United States, about 1,000,000 will have cirrhosis by the year 2020.^[3]That is an incredibly high number. There is an urgent need for us to treat those patients and cure them so that we do not have 1,000,000 people in need liver transplants or treatment for liver cancer in the future.

Dr Sulkowski: Let us talk about the other side of the question. A patient's liver biopsy shows METAVIR stage F1, portal fibrosis with no evidence of bridging or septae. What factors would you consider in deciding whether to treat that patient?

Dr Jensen: Patients such as that have both options open to them. I am not worried about those patients decompensating over the next 2 to 3 years while waiting for new therapies. On the other hand, patients with a favorable genetic genotype (interleukin[IL]28B CC or 1b), have mild disease, or of a younger age have a great response to current therapies. And patients who have relapsed after a previous course of therapy have an approximately an 80% chance of SVR with triple therapy, maybe even with a shorter therapy duration (eg, 24 weeks). Would the patient with an 80% probability of SVR, of being cured, want to be treated now or wait for new therapies to avoid interferon?

Dr Sulkowski: I agree. We have been using data from a subanalysis of pivotal studies published in The New England Journal of Medicine for guidance.^[4-7]One of the tests that I now order for most of my patients is IL28B genotyping, because I find it helpful. It is not that I am going to defer therapy in all my patients with the CT or TT genotype (those with less favorable response rates), as they may respond well to current triple therapy. But when you look at the CC genotype patients, the majority -- approximately 80% to 90% -- qualify for 24 or 28 weeks of treatment and have cure rates in the range of 90%. That is something patients need to know. I tend to look more at the histology of patients with CT and TT genotypes to determine whether or not to defer treatment.

You raised the issue of prior response to therapy. Patients who have relapsed after previous treatment have the highest response rates to retreatment with current triple therapy regimens.^[5,8] But, what about patients with cirrhosis, for example, those have had a null virologic response to pegylated interferon/ribavirin? How do you treat them?

Dr Jensen: They are in a difficult position. The data both on boceprevir and telaprevir in previous null responders with cirrhosis show SVR rates of approximately 14% to 15%.^[5,8,9] Treating a patient with a difficult and potentially toxic therapy for 48 weeks (all cirrhotic patients require 48 weeks of therapy) with only a 14% chance of SVR is difficult to reconcile. I would do 1 of 2 things for that patient. If I think the patient needs to be treated now, I would use a 4-week pegylated interferon/ribavirin lead-in phase, possibly with telaprevir. If the patient responded during the lead-in phase, I would continue the therapy because that points to a better outcome on triple therapy. If the patient did not respond, then I would probably discontinue treatment, at which point I would try to get them into a clinical trial that takes patients with cirrhosis (which there are not many of) or wait for future therapies to become available.

Dr Sulkowski: That is the group that really needs treatment. We have talked about sitting down with patients and reviewing their disease, viral characteristics, genotype 1 subtype, IL28, and race. The other point is how the patient feels about treatment. I have had patients say, "I do not want to live with this virus, and the interferon side effects I have read about do not bother me that much." That is a patient I would treat. On the flip side, patients have told me that tell me, "I am very busy; I do not want to commit to a treatment with a lot of side effects. I read online that better treatments are coming." Let us talk about the other side of the equation, the wait side. You used the term warehousing, which generally refers to the idea of telling a patient, We are going to defer therapy until we have different and, perhaps, better options. Tell me, what is driving that?

Dr Jensen: It is a discussion you have with patients. I do not think we ever say we are warehousing, we say are going to wait for future therapies. Some patients want to be treated now, regardless. Some patients do not want interferon in any situation. The fear of interferon is often seen in patients who have been previously treated; maybe it was very difficult for them to work or to carry on a full life when they were on interferon therapy. We go through that discussion. I tell patients that can wait that it is probably going to be 2 or 3 years until we have new therapies. We are all hoping that, by 2014, we will have an interferon-free therapy, but there is no guarantee.

Dr Sulkowski: A lot of patients have read about these new therapies in the headlines. For example, headlines from the European Association for the Study of the Liver (EASL) annual meeting in April 2012 read that 1 regimen, a nucleotide analog plus and NS5A inhibitor, taken by mouth once daily for 24 weeks had a 100% rate of patients remaining virus negative 4 weeks after stopping therapy (ie, SVR 4).^[10] But when you dig deeper, you see that the study included a relatively small number of patients: 44 with genotype 1 and none of them had cirrhosis. Patients are not aware these factors may make a difference. We don't know when that regimen and other regimens that look promising will be available in the clinic.

One of the things we saw in data presented at the same meeting was that for some regimens, the genotype 1a subtype became resistant pretty readily, whereas the 1b responded better.^[11] Perhaps we will use interferon- in genotype 1a patients because it is a good antiviral agent. Is interferon- completely off the table or will we still be using it in 2 or 3 years?

Dr Jensen: We will still be using interferon- in a few years, either interferon- or interferon-. I think there will be a role, hopefully a minor role. Some patients have greater benefit from an interferon-containing regimen than 1 without interferon. The goal is to minimize the adverse effects to make therapy more tolerable, perhaps by truncating the interferon duration to less than 48 weeks.

Dr Sulkowski: We have interferon- as a tool if we need it for certain patient groups. A 45-year-old woman has chronic HCV genotype 1a. Her biopsy shows stage 1 fibrosis. She is a busy person. She works and has a family. She does not want to have hepatitis. She makes it very clear to you that she wants to be cured. What conversation do you have with her?

Dr Jensen: I might measure her IL28B genotype to see whether she is in that very easy to cure group that can truncate triple therapy to 6 months. If she is, then we talk about treating now: What that would involve? What adverse effects could be anticipated? A lot of patients come to me who have never been treated and worried about the adverse effects. When they are actually on therapy, they find it is not as bad as they thought it would be. Everyone on interferon has some adverse effects, but some are not as bad as others.

Dr Sulkowski: What about the complexity of therapy with the current treatment: an interferon injection once a week, ribavirin pills twice daily, and telaprevir or boceprevir (2 or 4 pills every 7 to 9 hours with food requirements). How much is that influencing the decision to defer treatment?

Dr Jensen: It is a huge problem. Patients may be ready to begin therapy, but when I start spelling the dosages out, the pill burden and the complexity can make a difference for some patients.

Dr Sulkowski: And included in the adverse effect profile that we alluded to, there is more anemia.

__________________

Genotype 1a, VL 1,151,923. 51 years old. Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014! Undetected at weeks 2 and 4!

Zlikster · Guru

@JIme, any thoughts on GS-7977? are you allowed to share your experience on it?

i am keen on GS-7977+Ribavirin therapy, since i have saw articles about how effective is against genotype 3, but clinical trial for it is closed (end results July 2013) ;-(

Scout · Senior Member

news wrote:
Personally I think this is a good thing. As controversial as they are in this forum, I actually feel the biopsy is the best way to evaluate the condition of your liver. Experiences have varied greatly between individuals, but mine was very easy and the data from it was very valuable.

Ditto. I've had 2 biopsy's and they were really no big deal. Got to the root of it though. No maybe you is, maybe you ain't. I was, I treated, I'm better.

Mary Jane · Guru

LC wrote:
Mary Jane wrote:
LC wrote:
I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.
Glad that is over with for sure GF.. my BP usually drops from all the meds.. Yeah everyone is supposed to take it easy for a few days after being poked in the liver, no lifting etc.. Take care of yourself.. and fingers crossed on your results..
peace and love MJ
Thanks Mary Jane. I got me a new Stephen King book to read and I plan to just lounge around. Did you get your meds so you can start today?

Hey LUCY..MEDS arrived about an hour ago internet keeps going down.. was advised to do all meds at the same time so I will be in the Saturday nite budda belly dart club.. ready to get on with the shouuuuwwww.MJ

LC · Senior Member

Mary Jane wrote:
LC wrote:
I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.
Glad that is over with for sure GF.. my BP usually drops from all the meds.. Yeah everyone is supposed to take it easy for a few days after being poked in the liver, no lifting etc.. Take care of yourself.. and fingers crossed on your results..
peace and love MJ
Thanks Mary Jane. I got me a new Stephen King book to read and I plan to just lounge around. Did you get your meds so you can start today?

Mary Jane · Guru

LC wrote:
I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.

Glad that is over with for sure GF.. my BP usually drops from all the meds.. Yeah everyone is supposed to take it easy for a few days after being poked in the liver, no lifting etc.. Take care of yourself.. and fingers crossed on your results..

peace and love MJ

LC · Senior Member

I had my biopsy today. That was scary. The numbing shot was more uncomfortable than the biopsy needle, but I felt the biopsy needle too. It wasn't too bad, but my BP shot up and I was kind of freaked out. I think it bled a little more than normal. They told me to take it easy for a few days as a result.

Mary Jane · Guru

LC wrote:
So I found out a month ago that I have HCV, and I am not yet sick from this. My Dr is proposing Incivek triple therapy (he also said this doesn't necessarily need immediate treatment) and I am a 1a with a VL of 753,000. I don't know what stage of deterioration my liver is at yet, which may end up being a determining factor, but, the million dollar question I am asking myself is: since I have had this probably 15-30 years and am not sick from it; should I treat it now and risk the hellish side effects, or wait patiently for the nanozyme technology or other more promising drugs?
I know that, this is ultimately something I will have to decide for myself, and should be based on my particular condition and the advice of my Dr, etc... but I am just wondering if this question is something others new to HCV were asking theirselves, or what others who had been (or are going through) treatment would do if they knew there was a better drug coming along for this fairly soon? Something that wouldn't make you nearly as sick?
At all the articles I have seen talking about the future of HCV treatment, the future is so bright for this treatment - it needs to wear shades.
http://www.geekosystem.com/nanoparticle-rna-nukes-hcv/
http://www.seacoastonline.com/articles/20120627-NEWS-120629837
http://www.bloomberg.com/news/2012-01-10/merck-hepatitis-c-drug-may-anchor-future-worldwide-regimen.html
http://www.xconomy.com/san-diego/2011/09/06/dramatic-changes-in-hepatitis-c-treatment-expected-to-continue/

The future is getting brighter... gf hang in there MJ and wear those shades

LC · Senior Member

Yes, mallani pretty much convinced me. smile Also, I will feel better about waiting on the GS-7977 or whatever new drug if I know I am not going to be doing my liver too much harm by waiting. A week from tomorrow. doh

news · Guru

Personally I think this is a good thing. As controversial as they are in this forum, I actually feel the biopsy is the best way to evaluate the condition of your liver. Experiences have varied greatly between individuals, but mine was very easy and the data from it was very valuable.

Mary Jane · Guru

LC wrote:
So I found out a month ago that I have HCV, and I am not yet sick from this. My Dr is proposing Incivek triple therapy (he also said this doesn't necessarily need immediate treatment) and I am a 1a with a VL of 753,000. I don't know what stage of deterioration my liver is at yet, which may end up being a determining factor, but, the million dollar question I am asking myself is: since I have had this probably 15-30 years and am not sick from it; should I treat it now and risk the hellish side effects, or wait patiently for the nanozyme technology or other more promising drugs?
I know that, this is ultimately something I will have to decide for myself, and should be based on my particular condition and the advice of my Dr, etc... but I am just wondering if this question is something others new to HCV were asking theirselves, or what others who had been (or are going through) treatment would do if they knew there was a better drug coming along for this fairly soon? Something that wouldn't make you nearly as sick?
At all the articles I have seen talking about the future of HCV treatment, the future is so bright for this treatment - it needs to wear shades.
http://www.geekosystem.com/nanoparticle-rna-nukes-hcv/
http://www.seacoastonline.com/articles/20120627-NEWS-120629837
http://www.bloomberg.com/news/2012-01-10/merck-hepatitis-c-drug-may-anchor-future-worldwide-regimen.html
http://www.xconomy.com/san-diego/2011/09/06/dramatic-changes-in-hepatitis-c-treatment-expected-to-continue/

LC... all the things everyone is telling you is point on... I know you just got diagnosed...

Geno type is a factor which you are 1a common brand in the US

Stage & Class 1-2-3-4- etc.how far the HCV has progressed may be tougher to treat..

You being female is a + for SVR

this will be determined with a biopsy - not how it works with the liver scan?

Biopsy results- fibrous, bridging, fat etc. ( I can't remember do you have any gallbladder issues?) you will get the above as to how far the disease has progressed even if you feel fine..

AGE...is also an equation for treatment..REALLY

Viral load fluctuates in the course of a day...

NOT to scare you but I have known for 21 years the past 3 years it started raising it's big fat ugly head. I'm 54 so once you turn 50 with HCV things start to change...I have been waiting ..for Science to catch up ..it has, but not fast enough for me.. I'm doing this " triple therapy" casue I'm sick n tired of being sick n tired.. I can't wait anymore..

When you get your results you can make a better informed decision, hell as I said before no one wants to do treatment and feel sick w/ sx and all when they don't feel sick... Nano technology is at least 10 years away for clinical trials.

Hopefully you get back good results and you can get in the current 7977 clinical trials... peace and love MJ

-- Edited by Mary Jane on Friday 7th of September 2012 01:52:28 AM

LC · Senior Member

Well, the lab just called and my Dr has apparently decided I should have a liver biopsy after all.

Nice way to let me know.

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