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338734 tn?1377160168

HCV Transplant

Anyone with transplant doing Tx? I am new to this forum.

I was diagnosed with HCV genotype 1a in 1999. After other tests and a biopsy I was told that there was only mild to moderate inflamation and that I would proably die of old age with this virus. I was told to have my liver panel tested yearly and to return for another biopsy in about 5 years. Five years later, my biopsy/blood results showed that my liver was now in end-stage cirhosis and I could not be treated. But the bad news was that the AFP levels indicated HCC. Sure enough, subsequent MRI and CAT indicated a tumor. To shorten the story, the tumor was inoperable but small enough that I landed on the transplant list with a high MELD score.

I offer this as a cautionary tale for anyone who has the disease but doesn't show much disease progression and is thinking of not needing Tx.. Apparently after being under control for decades (I most likely got the disease around 1970), the disease can suddenly progress very rapidly.

In an ironic twist, post txplnt pathology showed no malignancy in the tumor! Good news is I don't have to be too concerned about HCC having spread.

I am a year post-transplant now and having problem with HCV resurgence and am in the 21st week of Pegasys and Ribavirin. No RVR but achieved EVR (but not UND). I am in excellent health other than being immunosupressed and having HCV.

Anyone comment on what chance I have for SVR? I am praying for UND at 24 weeks.

47 Responses
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173975 tn?1216257775
Thanks for sharing your 'cautionary' tale about the pitfalls of NOT treating quickly.

That's a major point of discussion on Forum for those newly diagnosed; whether to treat now or wait for the new drugs like teleprevir.

The fact is that nobody knows how rapidly or slowly the virus will progress.

What is your genotype?  I'm not sure if that's relevant with transplant patients but I do know the CW for other heppers is that those who reach UND by week 24 should extend for 72 weeks.

Again, I'm not sure if that' true  in your situation.

Best of luck and hoping you get UND by 24.

wyntre:  
Helpful - 0
338734 tn?1377160168
Thank you.
I know your question was for Mike, but I was told that the TX was much less effective in a liver that is compromised by cirhosis and much more dangerous. I don't know shy.

Hugs2U2,
Brent.
Helpful - 0
338734 tn?1377160168
Congratulations to you, too. 7.5 years post transplant and achieved SVR!

Thanks so much for your response. It is very encouraging. I am at full dose of Riba and have not missed a dose or reduced despite some rash problems. Though my white and red counts are low, they are not problematic. I am treating depression and it seems to be working, so I am optimistic of being able to tolerate the treatment.

I think current protocol would put me on a 72 week tx if I am UND at 24, but my docs don't tell me anything.

Charm: Thanks for the thoughts. Best to you, also.

It is great to hear from people in similar situations. Hope to hear from you and others in the future.

Thanks,
Brent (Walrus)
Helpful - 0
276730 tn?1327962946
I wish you all the luck. FIngers crossed.

Charm
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Avatar universal
Congratulations on your transplant and beating HCC. I was transplanted in June 2000. In addition to me there are a few transplant recipients here. I can think of Sallyo, KCMike, Jeff and BThompson  there may be a couple I am forgetting. I believe all of them are treating currently. I treated and finally achieved SVR in 2004. I treated 3 times and the first 2 were with inadequate ribavirin doses - in my opinion. The 3rd try I treated with full weight based dose of ribavirin and Pegasys. I became undetectable at week 11 or 12 and treated for a total of 73 weeks with no dose reductions or missed doses. My type is 1b. Without looking I seem to recall that the figures on transplants reaching SVR is lower than in the general population but I think the numbers are a reflection in part of tolerability issues - people stop treatment. I believe bone marrow suppression can be more of an issue in the transplant population and that is one factor which likely contributes the issue of tolerability. If I had to guess I would say that roughly 33% of transplants who start TX achieve SVR. If my number is proximately I am sure that the SVR number would be significantly higher if you take out those who stopped treatment early. Of course,  genotype and viral load have an influence on your odds of success.
I have to run now but I wish you good luck and an easy treatment.
Mike
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