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419309 tn?1326506891

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.  
33 Responses
Avatar universal
I am so happy to hear this good news! I think, periodic retesting of AFP would be a good idea. Did the doctor test AFP L3? It is pretty specific.

Good luck with treatment.
Avatar universal
I wonder, since his tumor marker is climbing and you appear to want to prolong TX, whether you might ask about "suppressive therapy"?

This is one area in which you may have a little wriggle room. The idea would be that he might taper to something like half dose and maintain the status that he has achieved, if only for a little longer.  That might get him closer to the approval dates of either of the PI's which may become available in the next year.

The very good news is that in general, if one is able to respond to TX one should also be an even better responder with the addition of a PI.  We don't yet know when they will be approved but if one could s-t-r-e-t-c-h his therapy out one could get closer to the approval date.

Understand, I'm not recommending this, but it may be an option to discuss with the doctor.

best,
Willy
Avatar universal
great news! sorry i can't help much with extending TX but I don't think there is much data out there on this.

personally i would be concerned with getting CT's every three months. i have read where having these can give you cancer.
Perhaps doing an MRI every other time would be better.

Best of luck
Avatar universal
Yes, I agree with copyman, CTs every 3 months is way too much. It is a huge dose of radiation. Because your husband already had cancer, such radiation exposure can cause its progression. Radiation is a very well known cancerogen.

MRI would be better, because it doesn't involve radiation at all. It costs more than CT, so often insurance doesn't want to pay for it. But if your husband needs such frequent monitoring, your doctor can justify MRI to insurance company.
446474 tn?1446351282
Glad your husband is clear of HCC and it sounds like his cirrhosis is under control. It is always better to check, just in case. Even though I know it is worrisome. It is always better to catch anything going wrong every as there are more options at that point.

I believe the standard imaging protocol now is to switch between a sonogram and CT every 6 months. At the same time get a liver panel to see if anything has changed significantly since the last blood test, That is what I have been doing for a couple of years since learning I am stage 4.

As far as AFP...it is not an accurate marker for HCC. My AFP is always over 100 and varies each time I am tested. I have heard that if it progressively rises or goes above 400-500 this would probably indicate the presence of HCC even if it couldn't be seen using imaging.

"With regard to hepatocellular carcinoma, AFP cannot be considered to be specifically diagnostic of HCC, as levels of AFP may be elevated in serum from patients with chronic liver disease; for example, research has indicated that AFP is not useful for screening in patients suffering from cirrhosis or Hepatitis C and therefore elevated AFP in these patients may not be indicative, or be only suggestive, of HCC".

Best-
HectorSF
233616 tn?1312790796


Gee, we go through so much with this chemo...it just suc.ks when insult is added to injury. So sorry to hear this news for you two.....
I'd strongly suggest he stick with MRI's as CT's x ray hundreds of times and are very damaging. Not only my doctor, but another doc/radiologist I know who has this both concur here.
Beyond that, no saturated fats, or hydrogenated, and low iron diet with regular iron panels and supplements to block iron absorption, those are the main preventatives.  If you can get him to give up nitrates that helps too (cured meats), and cigs of course. Lots of things go into why cancer markers go up but they can come back down as well. I used CoQ10 for mitochondrial repair, branched chained amino acids also have shown repairative benefits.
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