Stopping treatment

[hdkash]

After 10 months (4 months of weekly Peg and 6 months of daily Infregen) of tx I am stopping treatment under my doctor's advice. My latest VL came back and I am 336 just barely down from 384 two months ago. The side effects have consistently been getting worse and I miss work 1-2 days per week, 2-3 hours of sleep and severe headaches. My doctor is concerned that there is no clear benefit from continuing and I may be causing more harm than good. We will draw labs in two more weeks and discuss maintenance treatment vs watch and wait. My liver biopsy was very early stage 4. I wish all of you in tx the best and hope you clear. I will still visit the forum and see how everyone is doing.

Thanks for the support.

[Deb_c430]

I feel for you, and agree with all, you are a warrior!  Infergen is  tuff, so hard on our bodies.

Sometimes you just have to rest,   your Vl seems so low tho, hate you have to stop.

I look to Lonestar for so much help during this infergen battle. it is like nothing else.

You are a warrior! a true hero for me any many of us, regardless that you stopped.

Deb

[Lonestar823]

Kash, I know how hard you've fought this battle.  You've stood and battled like a true warrior.  A few of us know how difficult the Infergen battle can be.  There can be a time when we know, and you found it, when we must step back and conserve our strength to battle again.  I agree with Jim regarding maintenance and it's real effectiveness.  Yes, indeed, arrange a consult with a different liver specialist soon as you are able.  Will you keep in touch Kash?  Please do.

[EspritLibre1]

Just wanting you to know you're in my thoughts and wish you the very best ... It's just got to be a very difficult time .. I'm hoping and praying your overcome this disease.. Libby

[hdkash]

Thanks for the link, that was a very informative video. Thank you also for your support.

Jim, you give great advice, I will make an appt with a hepatologists here in Austin and I am having a friend in CA check with his sister who is a Chief Surgeon specializing in internal medicine.

I did go into this with my eyes open and knew that my chances were very low. I also knew that 24 weeks of Infregen after the Peg was pushing it (since I only a a 1 log drop) but felt as long as my sides were tolerable I was going stick with it. I did check back with my doctor and he agrees that maintenance is not looking like the right thing to do.

Thanks again.

[HectorSF]

Sorry to hear you didn't clear. It sounds like you've given it your best shot. I don't want to see you suffering any more without the possibility of success. I know it's difficult to have gone though so much without the positive outcome we all hope for. In a few weeks I will probably be in the same position myself, as I approach my 12th week of treatment.

It sounds like a good time to re-evaluate your experiences so far and look for other opinions about what options are available to you at this point. Take a break and regroup. Be proud of what you have been able to do to take care of yourself. This is not an easy process to go through, but it shows you have more inner strength then maybe you knew when you started this journey.

For futher education on this matter I have a link below to a video that goes into detail concerning...HCV, CIRRHOSIS with portal hypertension (low platelets) and genotype 1. The latest data shows that chances are about 10% that patient with the above attributes will clear the virus. (When I started therapy this I thought I had a 50% chance!). In the video presentation my doctor mentions how by measuring vl at intervals before the 12th week of tx it is possible to predict which patients with cirrhosis will response to treatment and who will not. The faster you lose virus the better your chances acheiving SVR. (If the vl doesn't become undetectable (NOT just down 2 log) within the first 12 weeks, the chances of clearing the virus are very low). Also to reaffirm Jim's point...my doctor doesn't find "maintenance therapy" to be of benefit.

I know this is not happy news. But I think it is better for us to have our "eyes wide open" as we decide how we should best manage our disease.
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"Management of Hepatitis C in the Pre-Transplant Patient with cirrhosis (compensated and decompensated)"
(UCTV #14086; 39 minutes; March/6/2008)

Dr. Norah Terrault (Director of HCV at UCSF)
This video program from UCSF is part of an annual update for physicians who care for liver failure/transplant patients. This video segment covers antiviral therapies for management of Hepatitis C in patients with both compensated cirrhosis and decompensated cirrhosis in the pre-transplant patient. And the chances of patients with cirrhosis of acheiving SVR.

http://www.uctv.tv/search-details.asp?showID=14086
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I wish you all the best in overcoming this disease!

Cheers!
Hector

[smaug48]

I'm very sorry to hear that tx has not done the trick.  I think you should take Jim's advice.

smaug

[jmjm530]

Sorry treatment hasn't worked out. With the little presented, I do question your doctor keeping you on the meds so long while still detectible. Also, there have been some recent papers questioning the utility of maintenance treatment. Moving ahead, if I was you position, especially since you're stage 4, I'd arrange for one -- or preferably two -- consults with liver specialists (hepatologists) who are not affiliated with your doctor or his/her hospital.

-- Jim