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Surviving Hepatits C-Related HCC and Cirrhosis
At week 68 of treatment, we got the call that my husband's AFP had risen to 128: the nurse was very concerned.
Well, he had his CT-Scan Tuesday, and the doc says, at least for now, he's in the clear :) ... no clearly defined liver tumor. It was a tremendous relief, but the lead doc in the clinic came in and said that he was very concerned about future recurrence of hcc in my husband.
The difficulty is that there are 'arterially enhancing lesions' that show 'mild interval change' -- stable for the most part, but a couple of them are showing larger measurements; however, the radiologist is attributing the differences to possible variations in 'timing and contrast.' (Gee, they're done at the same place every 3 months, can't they be consistent?) They might decide to draw AFP in the next month or two, but the doc wasn't too keen on doing any other tumor markers... an AASLD protocol kind of guy, I guess.
But, no bad news is good news, so all in all, it's still quite a miracle. As of next week, my husband will be 3-years post-hepatectomy, 3-years cancer-free. We asked the doc about any possible benefits for extending beyond 72 weeks, and again, an AASLD guideline answer: no clear evidence as to any benefit extending beyond 72 weeks. He did add, however, it was possible that extending might have benefits for my husband, but with no clear proof, he does not feel he could recommend it. Bottom line, he left it up to my husband to decide, and stated that he would work with us whatever the decision. (Well, that means it's research time for the next week and a half! Btw, anyone with recent data related to tx-suppression of hcc, please share, I'd be most appreciative.)
The other remarkable thing is that in the last 3 years, despite not having a left lobe (they hoped it might regenerate some after surgery, but it did not), my husband's cirrhosis appears to remain stable: no additional ascites, no organ enlargement (spleen, pancreas, etc.), no edema or other signs of decompensation. It's hard to decide whether treatment played any role in keeping both decompensation and hcc at bay, so it makes us just a little nervous about stopping at the end of week 72... still on the fence (and running out of fence soon).
Just had to update anyone interested, release a little pressure, and thank you for reading/caring.
PS:
Part of me wanted to title this post "Interferon and Ribavirin Treatment after Anatomical Resection in a Cirrhotic Patient: A Single Case Study" ;) -- but I decided the current title might be more help to anyone just diagnosed with any of the three (hcv, cirrhosis, or hcc) understand that NONE of those is a death sentence.
Well, he had his CT-Scan Tuesday, and the doc says, at least for now, he's in the clear :) ... no clearly defined liver tumor. It was a tremendous relief, but the lead doc in the clinic came in and said that he was very concerned about future recurrence of hcc in my husband.
The difficulty is that there are 'arterially enhancing lesions' that show 'mild interval change' -- stable for the most part, but a couple of them are showing larger measurements; however, the radiologist is attributing the differences to possible variations in 'timing and contrast.' (Gee, they're done at the same place every 3 months, can't they be consistent?) They might decide to draw AFP in the next month or two, but the doc wasn't too keen on doing any other tumor markers... an AASLD protocol kind of guy, I guess.
But, no bad news is good news, so all in all, it's still quite a miracle. As of next week, my husband will be 3-years post-hepatectomy, 3-years cancer-free. We asked the doc about any possible benefits for extending beyond 72 weeks, and again, an AASLD guideline answer: no clear evidence as to any benefit extending beyond 72 weeks. He did add, however, it was possible that extending might have benefits for my husband, but with no clear proof, he does not feel he could recommend it. Bottom line, he left it up to my husband to decide, and stated that he would work with us whatever the decision. (Well, that means it's research time for the next week and a half! Btw, anyone with recent data related to tx-suppression of hcc, please share, I'd be most appreciative.)
The other remarkable thing is that in the last 3 years, despite not having a left lobe (they hoped it might regenerate some after surgery, but it did not), my husband's cirrhosis appears to remain stable: no additional ascites, no organ enlargement (spleen, pancreas, etc.), no edema or other signs of decompensation. It's hard to decide whether treatment played any role in keeping both decompensation and hcc at bay, so it makes us just a little nervous about stopping at the end of week 72... still on the fence (and running out of fence soon).
Just had to update anyone interested, release a little pressure, and thank you for reading/caring.
PS:
Part of me wanted to title this post "Interferon and Ribavirin Treatment after Anatomical Resection in a Cirrhotic Patient: A Single Case Study" ;) -- but I decided the current title might be more help to anyone just diagnosed with any of the three (hcv, cirrhosis, or hcc) understand that NONE of those is a death sentence.
yes - please post what you found - had no idea ifn was effective as an anti-hcc agent. I'd guess ignorance rather than lack of interest applies, at least in my case.
Be well.
Be well.
willing:
Thanks for your response... means a lot coming from you. Some nice slide presentations there... appreciate the link! The question of extending in our minds is less related to SVR success rates and more related to the suppessive possibilities of IFN on hcc. There appears to be some kind of link between the cytokine receptors in hepatocytes and their activity during immune response that prevents over-expression of mutation genes, which is common in the development of hcc. I don't presume many people to have much interest in hcc necessarily, but if you'd like me to post what I've found recently, let me know I'd be more than happy to do so.
Trish:
Thanks for making me smile. It's good to know there are people out there that appreciate our special brand of oddity ;).
The true fear in our minds is that even reaching SVR doesn't clear him from hcc recurrence -- it definitely improves his odds, but he'll still not be clear of the cloud of hcc by a long shot. The difficulty in sorting out all the halt-c and ideal trials is the short follow up period we're in -- we don't have the advantage of long perspective as yet. Most of the data relates to non/null responders, but there's still some discussion about the SVR population (which I hope my husband is!), and why it isn't completely 100% successful in preventing decompensation in some cases and what role maintenance therapy might play in closing that gap. Finding myself continuing to dig into the 'annals of hcv' ... ;).
Fondest and best regards to you both. ~eureka
Thanks for your response... means a lot coming from you. Some nice slide presentations there... appreciate the link! The question of extending in our minds is less related to SVR success rates and more related to the suppessive possibilities of IFN on hcc. There appears to be some kind of link between the cytokine receptors in hepatocytes and their activity during immune response that prevents over-expression of mutation genes, which is common in the development of hcc. I don't presume many people to have much interest in hcc necessarily, but if you'd like me to post what I've found recently, let me know I'd be more than happy to do so.
Trish:
Thanks for making me smile. It's good to know there are people out there that appreciate our special brand of oddity ;).
The true fear in our minds is that even reaching SVR doesn't clear him from hcc recurrence -- it definitely improves his odds, but he'll still not be clear of the cloud of hcc by a long shot. The difficulty in sorting out all the halt-c and ideal trials is the short follow up period we're in -- we don't have the advantage of long perspective as yet. Most of the data relates to non/null responders, but there's still some discussion about the SVR population (which I hope my husband is!), and why it isn't completely 100% successful in preventing decompensation in some cases and what role maintenance therapy might play in closing that gap. Finding myself continuing to dig into the 'annals of hcv' ... ;).
Fondest and best regards to you both. ~eureka
"Definitely a good way to combat anxiety: with positive thinking. It’s reassuring to know that my husband and I may not be as odd as we thought we were. :: ) Thanks. "
Eureka, I think you and your husband are every bit as odd as you think you are and I say that with a great deal of affection, admiration and respect. I always marvel that the two of you have found each other.
I'm sure you've seen this article with all the research you do. I'm including it anyway. To be taken in context, of course. I'm no expert, it's simply an article I came across and thought it might add and hopefully not detract.
http://www.natap.org/2009/HIV/062109_01.htm
"The Hepatitis C Antiviral Long-Term Treatment against Cirrhosis (HALT-C) study is a prospective, randomized, investigator-initiated study to determine whether maintenance therapy with low-dose pegylated interferon alpha in patients with chronic hepatitis C who had failed to clear virus following a standard course of treatment would slow the progression of disease.1 Progression of disease was determined on biopsy and by the development of the end-stage complications of progressive hepatitis C, namely development of hepatocellular carcinoma (HCC), liver failure, and the need for liver transplant. Previous reports from the HALT-C study have indicated that this treatment regimen did not halt progression of liver disease.1 In a report in this issue of Gastroenterology, Lok et al2 provide evidence that the incidence of hepatocellular carcinoma is also not different in those who were on maintenance therapy versus untreated controls. These results are in contradistinction to an earlier report on 2-year maintenance therapy in nonresponders.3 However, the sample size in this study was small and may have led to type 1 error.3"
Sometimes I wonder if getting off treatment is similar to starting treatment. I remember just before I started treatment, I felt as if I was about to step into an elevator, the doors would close behind me and I would not be able to get off once I got on and it was going to be a very long ride. Perhaps getting OFF treatment is like that for some people who have so much more at stake than I did when treatment stopped. You can only hedge your bets so much. At some point, you have to step OUT of the elevator and get back into the stream of things again. At some point, you WILL have to cut the treatment tie and ride the wave. I have no idea when that is for you and your husband. I just wish you great wisdom in figuring that out .. and then serenity as you proceed with your choice. I'm really believing and hoping for that big SVR "Huzzah!!!" to come along for both of you afterward.
Fond regards,
Trish
Eureka, I think you and your husband are every bit as odd as you think you are and I say that with a great deal of affection, admiration and respect. I always marvel that the two of you have found each other.
I'm sure you've seen this article with all the research you do. I'm including it anyway. To be taken in context, of course. I'm no expert, it's simply an article I came across and thought it might add and hopefully not detract.
http://www.natap.org/2009/HIV/062109_01.htm
"The Hepatitis C Antiviral Long-Term Treatment against Cirrhosis (HALT-C) study is a prospective, randomized, investigator-initiated study to determine whether maintenance therapy with low-dose pegylated interferon alpha in patients with chronic hepatitis C who had failed to clear virus following a standard course of treatment would slow the progression of disease.1 Progression of disease was determined on biopsy and by the development of the end-stage complications of progressive hepatitis C, namely development of hepatocellular carcinoma (HCC), liver failure, and the need for liver transplant. Previous reports from the HALT-C study have indicated that this treatment regimen did not halt progression of liver disease.1 In a report in this issue of Gastroenterology, Lok et al2 provide evidence that the incidence of hepatocellular carcinoma is also not different in those who were on maintenance therapy versus untreated controls. These results are in contradistinction to an earlier report on 2-year maintenance therapy in nonresponders.3 However, the sample size in this study was small and may have led to type 1 error.3"
Sometimes I wonder if getting off treatment is similar to starting treatment. I remember just before I started treatment, I felt as if I was about to step into an elevator, the doors would close behind me and I would not be able to get off once I got on and it was going to be a very long ride. Perhaps getting OFF treatment is like that for some people who have so much more at stake than I did when treatment stopped. You can only hedge your bets so much. At some point, you have to step OUT of the elevator and get back into the stream of things again. At some point, you WILL have to cut the treatment tie and ride the wave. I have no idea when that is for you and your husband. I just wish you great wisdom in figuring that out .. and then serenity as you proceed with your choice. I'm really believing and hoping for that big SVR "Huzzah!!!" to come along for both of you afterward.
Fond regards,
Trish
tashka:
I did work up the nerve to ask the doc about more serum screening, AFP L3 and DCP – both of which are readily available at the lab my husband goes to – but the lead doc didn’t hesitate to point out that he doesn’t see value in either because the results would have no “clinical application,” and he’s absolutely right. He’s a real by-the-book guy.
Willy50:
Interesting consideration… half dose. Hmmm…
I guess if there were an FDA-approval of PIs slotted for this fall he’d feel better about stopping at 72 weeks, but all views seem to point to viral activity as a main contributor in hcc. I guess in essence treatment is a (very itchy and irritating) ‘Linus” blanket, as a good friend once said. Being that my husband has surpassed both his ‘expected recurrence time’ and ‘expected length of survival’, it begs the question of treatment’s contribution to the mix. His history of hcc and the existence of lesions currently below hcc guidelines make us anxious about giving up any room for viral activity. We’d be forever second-guessing if we stopped and things took a turn for the worse.
copyman & tashka:
No question that MRIs would be better than the repeated CT Scans, but my husband does not have the option to do MRIs, having retained schrapnel pieces from injuries during combat in Vietnam (back then, the military just ‘patched them up’ and sent them back into the field). He was actually thinking about going to 6-month intervals in between, but doc and nurse said not advised because of existing lesions and continual climb in AFP. A 6-month interval could conceivably allow a tumor to develop enough to place him out of transplant eligibility, hence the close surveillance.
HectorSF:
Great seeing you back here – hope you’re doing ok and glad you’re still holding your own. It’s definitely been a lot of anxious watching the last few years but considering all, we’re glad for every small reprieve. Because ultrasound would not be able to distinguish the characteristics of ‘tumor’ from lesion, docs don’t consider it useful in my husband’s case. It’s a bottom-line numbers waiting and numbers game: the chances of getting cancer from CT-Scan are considerably lower than the 80% risk of recurrence within 3 years the docs expected.
merryBe:
We’re actually sucking it up and pretty happy with the news, considering everying; it could have been much worse. Hubby’s doc doesn’t like the idea of adding too much to the mix during treatment (even had to twist his arm for Alinia), but I have to respect that the guy is head of two viral treatment clinics for good reason.
portann:
Really nice of you to check in and thanks for the kind words.
nygirl7:
Made me chuckle to think that biochemically my husband and your mom have something in common – appreciate your friendship and encouragement – you’re proof that New Yorkers are all heart. :)
justme53:
See, it ISN”T just you! : ) You nailed it... and neither my husband nor I relish the idea of walking the current highwire without a safety net : |
RCM829:
Definitely a good way to combat anxiety: with positive thinking. It’s reassuring to know that my husband and I may not be as odd as we thought we were. :: ) Thanks.
I did work up the nerve to ask the doc about more serum screening, AFP L3 and DCP – both of which are readily available at the lab my husband goes to – but the lead doc didn’t hesitate to point out that he doesn’t see value in either because the results would have no “clinical application,” and he’s absolutely right. He’s a real by-the-book guy.
Willy50:
Interesting consideration… half dose. Hmmm…
I guess if there were an FDA-approval of PIs slotted for this fall he’d feel better about stopping at 72 weeks, but all views seem to point to viral activity as a main contributor in hcc. I guess in essence treatment is a (very itchy and irritating) ‘Linus” blanket, as a good friend once said. Being that my husband has surpassed both his ‘expected recurrence time’ and ‘expected length of survival’, it begs the question of treatment’s contribution to the mix. His history of hcc and the existence of lesions currently below hcc guidelines make us anxious about giving up any room for viral activity. We’d be forever second-guessing if we stopped and things took a turn for the worse.
copyman & tashka:
No question that MRIs would be better than the repeated CT Scans, but my husband does not have the option to do MRIs, having retained schrapnel pieces from injuries during combat in Vietnam (back then, the military just ‘patched them up’ and sent them back into the field). He was actually thinking about going to 6-month intervals in between, but doc and nurse said not advised because of existing lesions and continual climb in AFP. A 6-month interval could conceivably allow a tumor to develop enough to place him out of transplant eligibility, hence the close surveillance.
HectorSF:
Great seeing you back here – hope you’re doing ok and glad you’re still holding your own. It’s definitely been a lot of anxious watching the last few years but considering all, we’re glad for every small reprieve. Because ultrasound would not be able to distinguish the characteristics of ‘tumor’ from lesion, docs don’t consider it useful in my husband’s case. It’s a bottom-line numbers waiting and numbers game: the chances of getting cancer from CT-Scan are considerably lower than the 80% risk of recurrence within 3 years the docs expected.
merryBe:
We’re actually sucking it up and pretty happy with the news, considering everying; it could have been much worse. Hubby’s doc doesn’t like the idea of adding too much to the mix during treatment (even had to twist his arm for Alinia), but I have to respect that the guy is head of two viral treatment clinics for good reason.
portann:
Really nice of you to check in and thanks for the kind words.
nygirl7:
Made me chuckle to think that biochemically my husband and your mom have something in common – appreciate your friendship and encouragement – you’re proof that New Yorkers are all heart. :)
justme53:
See, it ISN”T just you! : ) You nailed it... and neither my husband nor I relish the idea of walking the current highwire without a safety net : |
RCM829:
Definitely a good way to combat anxiety: with positive thinking. It’s reassuring to know that my husband and I may not be as odd as we thought we were. :: ) Thanks.
you two are an inspiring and remarkable pair! All the best.
There's a couple of good HCC presentations, one by Hashem El-Serag another by Masao Omata as part of the HCV DART 09 talks:
http://ihlpress.com/gaj_hepdart2009.html
regarding maintenance, I seem to recall there was some question about the (negative) results of halt-c/copilot. See for example
"Thus, long-term maintenance therapy may be beneficial in confirmed nonresponders with portal hypertension."
from
"Management of Chronic HCV : Maintenance Therapy for Nonresponders and Relapsers"
http://www.medscape.com/viewarticle/713174_7
It's easy to understand not wanting to risk that HUGE 72 week investment at this point. However, close monitoring of the HCC seems the more important issue. If relapse happens, its impact on cirrhosis progression will likely be slow and the options for another attack with stronger meds are promising.
There's a couple of good HCC presentations, one by Hashem El-Serag another by Masao Omata as part of the HCV DART 09 talks:
http://ihlpress.com/gaj_hepdart2009.html
regarding maintenance, I seem to recall there was some question about the (negative) results of halt-c/copilot. See for example
"Thus, long-term maintenance therapy may be beneficial in confirmed nonresponders with portal hypertension."
from
"Management of Chronic HCV : Maintenance Therapy for Nonresponders and Relapsers"
http://www.medscape.com/viewarticle/713174_7
It's easy to understand not wanting to risk that HUGE 72 week investment at this point. However, close monitoring of the HCC seems the more important issue. If relapse happens, its impact on cirrhosis progression will likely be slow and the options for another attack with stronger meds are promising.
I can certainly relate with what justme53 just said...my 72 weeks is coming to an end in July and I feel a tremendous sense of anxiety about that. Yes, I will feel better but...
As long as I'm treating - and undetectable - I somehow feel as though I'm winning this. I think the best way of looking at all this is - and here I go again - that this will be a cureable disease one day soon, and we will all be rid of it.
Until then, keep up exactly what you are doing.
And yes, we are interested and care about you both and appreciate the updates
Big smile to you!.
As long as I'm treating - and undetectable - I somehow feel as though I'm winning this. I think the best way of looking at all this is - and here I go again - that this will be a cureable disease one day soon, and we will all be rid of it.
Until then, keep up exactly what you are doing.
And yes, we are interested and care about you both and appreciate the updates
Big smile to you!.
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