Aa
Treatment Post Liver Transplant
My 62 year old husband had a liver transplant on Aug. 5. He never had treatment before the transplant. Hepatitis C has come back already so he began treatment a week ago. He is genotype 1b. He is taking the Pegasys alpha 2a 180mcg injections and 1000mg of Ribavirin. The transplant center says he will be on these 2 medications for one year and then on the Pegasys alone for another year.
1. Has anyone else done a similar treatment after transplant? Did you achieve SVR?
2. If you treated post transplant, can you tell me what viral load you started out with and whether or not you achieved SVR?
Thank you.
1. Has anyone else done a similar treatment after transplant? Did you achieve SVR?
2. If you treated post transplant, can you tell me what viral load you started out with and whether or not you achieved SVR?
Thank you.
Mike you ARE THE MAN. It didn't to me, advocating for yourself and having a good attitude are two different things, You gave sky some great info!
I didn't mean to suggest that you go in there demanding anything though it might have seemed like I did. I meant to suggest that if his doctor or team is not receptive to the 4 week test then you should push harder for answers why it is not appropriate and if there are not good answers then you push for the test, I think you do have to be diplomatic and courteous while still being a strong advocate. It can be a fine line but I trust that you know what I mean.
Mike
Mike
I do not know where you live but if you live in the US I would not request as much as I would demand a very sensitive 4 week VL. I had to push my doctor to give me the right ribavirin dose. I don't think there was enough experience in the transplant community at that time to confidently does adequately and I believe that had I not insisted I might not be SVR today. 800 mg was not going to do it for me as I weighted 140 or a few lbs more at the start of my last treatment. That was I believe crucial and I wanted to trust my doctor but my reading had convinced me that I needed more ribavirin so I pushed hard for it.
We know now that the 4 week test is very important and your Husband has the right to be tested at that point. If they are resistant to test his VL at 4 weeks I would not be as comfortable as I would if they agreed that there is value to the test. If by chance you are told that a 4 week VL is not as valuable in the transplant recipient population as it is in the general population (and I am merely trying to anticipate any possible negative response - I have no reason to assume that will be their response) I would demand to see evidence of that premise. I do not believe there is any basis for any distinction in the transplant population. It is a valuable test and he should definitely get one. Again, I wish you good luck. Stay strong and be a strong advocate. That can really be important.
Mike
We know now that the 4 week test is very important and your Husband has the right to be tested at that point. If they are resistant to test his VL at 4 weeks I would not be as comfortable as I would if they agreed that there is value to the test. If by chance you are told that a 4 week VL is not as valuable in the transplant recipient population as it is in the general population (and I am merely trying to anticipate any possible negative response - I have no reason to assume that will be their response) I would demand to see evidence of that premise. I do not believe there is any basis for any distinction in the transplant population. It is a valuable test and he should definitely get one. Again, I wish you good luck. Stay strong and be a strong advocate. That can really be important.
Mike
I appreciate all of the replies. Thank you, Mike Simon, for all of the great information. The similarity between your case and my husband's gives me hope. We are going on Friday for our first appointment since he began treatment. The labs this time will not include the viral load. I will ask as many questions as I can and request early viral load tests and try to find out why they are planning an extra year of monotherapy. I know I'll have many more questions for all of you.
Sounds like they want to put him on a maintenance dose of Peg following a year of SOC. Maintenance would be a lower dose than the SOC dose. You might want to check with your medical team and find out exactly what they have in mind.
Like Mike, I also am not familiar with Peg only therapy following SOC in transplant patients, especially if one responds reasonably well -- UND by week 4 or 12. You might ask your medical team for studies/rationale and seek a second opinion if you still have doubts. And as suggested, get a very sensitive week 4 viral load test to give you a better idea on response which can then better help predict SVR.
-- Jim
Like Mike, I also am not familiar with Peg only therapy following SOC in transplant patients, especially if one responds reasonably well -- UND by week 4 or 12. You might ask your medical team for studies/rationale and seek a second opinion if you still have doubts. And as suggested, get a very sensitive week 4 viral load test to give you a better idea on response which can then better help predict SVR.
-- Jim
i just got this post and walruses mixed and answered both on that one,
I do hope you take Mike up on his offer, he has a huge amount of knowledge, especially concerning transplant, Also if you do not understand all the terminology he will patiently answer!
Good luck
I do hope you take Mike up on his offer, he has a huge amount of knowledge, especially concerning transplant, Also if you do not understand all the terminology he will patiently answer!
Good luck
Your Husband's situation sounds a lot like mine. A lesion was seen during a routine scan and my team suspected cancer. I wasn't sick enough to have gotten a liver if I didn't have that lesion. And my explanted lesion was also not cancerous. I was also type 1b.
My personal opinion is that, absent any contraindications, it's better to initiate HCV treatment early post transplant. His doses are much better than mine were when I first started treatment. I started about 6 or 8 weeks after my transplant with low ribavirin dose and a standard interferon dose (there wasn't Peg back then). That treatment did normalize my liver enzymes and after 1 year I stopped but I did not clear. About 6 months later I started Peg-Intron and 800 mg ribavirin. I cleared late - maybe 6 months - and stopped at 52 weeks and relapsed immediately. About 6 weeks later I started Pegasys 180 mcg and 1000 mg ribavirin. I was undetectable by week 12 (probably a week or two sooner but I didn't test until week 12) and treated for 73 weeks and achieved SVR. My starting VL for this last treatment was 3.65 million IU/ml but 6 weeks previously it was 6.8 million IU/ml so VL can fluctuate significantly in a short period of time. I was also diabetic and had received at least 2 bolus intravenous injections of Solu-Medrol for organ rejection episodes. These rejections did not occur during treatment however.The diabetes and bolus treatments are considered negative predictors for SVR and yet I made it. I say this because I suspect that his viral load is worrying you. While it is not a positive predictor I do not think it in insurmountable.
I do think you have to insist on a 4 week VL test because being undetectable at 4 weeks is highly predictive of SVR and may also influence his doctors' advice regarding duration of treatment. I have not heard of patients - transplant or non-transplants- treating with Peg and Riba for a year and doing another year of monotherapy with Peg. Perhaps it is a new approach but I would want to know more about it. I think that extending treatment is often a big advantage depending on when the patient becomes undetectable and that it why I would want the 4 week VL. I also think that depending on the 4 week result more testing may be appropriate before the standard week 12 VL test. It is helpful to know, as close as possible, the week at which he becomes undetectable.
I required Epogen to boost my RBCs and hemoglobin during my treatments. My platelet count became quite low (low 20,000s) but I was allowed to continue treatment. You may also see (if you get copies of his labs and I suggest that you do) some irregularities noted regarding his platelets and I don't think this is reason for concern. I saw on my labs "One giant platelet observed" but my team wasn't concerned and now my platelet counts are normal ad no abnormal morphology is seen.
If there is anything else I might be able to help you with don't hesitate to ask me. You can PM me if that would be better for you. I can't say I will be able to help but I will try.
Good luck,
Mike
My personal opinion is that, absent any contraindications, it's better to initiate HCV treatment early post transplant. His doses are much better than mine were when I first started treatment. I started about 6 or 8 weeks after my transplant with low ribavirin dose and a standard interferon dose (there wasn't Peg back then). That treatment did normalize my liver enzymes and after 1 year I stopped but I did not clear. About 6 months later I started Peg-Intron and 800 mg ribavirin. I cleared late - maybe 6 months - and stopped at 52 weeks and relapsed immediately. About 6 weeks later I started Pegasys 180 mcg and 1000 mg ribavirin. I was undetectable by week 12 (probably a week or two sooner but I didn't test until week 12) and treated for 73 weeks and achieved SVR. My starting VL for this last treatment was 3.65 million IU/ml but 6 weeks previously it was 6.8 million IU/ml so VL can fluctuate significantly in a short period of time. I was also diabetic and had received at least 2 bolus intravenous injections of Solu-Medrol for organ rejection episodes. These rejections did not occur during treatment however.The diabetes and bolus treatments are considered negative predictors for SVR and yet I made it. I say this because I suspect that his viral load is worrying you. While it is not a positive predictor I do not think it in insurmountable.
I do think you have to insist on a 4 week VL test because being undetectable at 4 weeks is highly predictive of SVR and may also influence his doctors' advice regarding duration of treatment. I have not heard of patients - transplant or non-transplants- treating with Peg and Riba for a year and doing another year of monotherapy with Peg. Perhaps it is a new approach but I would want to know more about it. I think that extending treatment is often a big advantage depending on when the patient becomes undetectable and that it why I would want the 4 week VL. I also think that depending on the 4 week result more testing may be appropriate before the standard week 12 VL test. It is helpful to know, as close as possible, the week at which he becomes undetectable.
I required Epogen to boost my RBCs and hemoglobin during my treatments. My platelet count became quite low (low 20,000s) but I was allowed to continue treatment. You may also see (if you get copies of his labs and I suggest that you do) some irregularities noted regarding his platelets and I don't think this is reason for concern. I saw on my labs "One giant platelet observed" but my team wasn't concerned and now my platelet counts are normal ad no abnormal morphology is seen.
If there is anything else I might be able to help you with don't hesitate to ask me. You can PM me if that would be better for you. I can't say I will be able to help but I will try.
Good luck,
Mike
Thank you for your encouragement. I have read all of Mike Simon's very informative posts. I am hoping that he will respond to this one. Actually the transplant itself went very well. My husband was not sick beforehand. The transplant was for what was described as HCC in the environment of early cirrhosis. We think he got HCV in about 1970 when he was a Public Health worker for CDC tracking down venereal disease. In 1975 he donated blood and received a letter that he had non-A, non-B hepatitis. A doctor told him he'd probably die in 5 years, that there was no treatment. That was so hard to believe since we were young and healthy. We ignored this, thinking that there would be symptoms if there was a problem, and I even forgot about it. Last December blood tests showed that he had HCV and an ultrasound, followed by a CT scan and a biopsy and an MRI found a lesion that was determined to be mostly necrotic with a few atypical cells. He was on the transplant list for 6 days when we got the call that there was a matching donor, a 22-year old man. We were told that a younger liver meant that HCV was less likely to damage the liver quickly, but that doesn't seem to be true. His viral load is now a high 9,000,370 so that's why I'm asking about viral loads. (BTW, the explanted liver showed that the lesion was totally necrotic, there was no vascular invasion, no lymph node involvement, so I'm not sure why they called it cancer. They could not even assign it a stage. However, I think a transplant would have been necessary at some point anyway since he had early stage cirrhosis.) Thanks for reading this long story.
i have as well a great person to talk about with is MikeSimon, He had a transplant and treated. he is ok now, hang in there, you got through the transpllant, Brent also transplanted, and he is now on on treatment.
Best wishes and let us know!
Deb
Best wishes and let us know!
Deb
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