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End of Week 72

Mar 24, 2010 - 9 comments





72 weeks

Day after tomorrow marks the end of SOC treatment + Alinia for my husband.  It's oddly anti-climactic and counter-intuitive, but I'm not as excited as I thought I'd be.  It's been 17 months of pills and ills, and I would have thought I'd be jumping for joy.  I should be thrilled about approaching the end, but I'm not; instead, I'm terrified.  I guess it's due in part to feeling better doing "something" than doing "nothing."

My husband is already asking questions about what happens if he stops and relapses -- his primary focus at the moment is to get to SVR by any means possible. Without a doubt, it is the prime objective, but at the moment I'm less worried about relapse and more worried about tumor recurrence.  Some months ago we had pondered on whether or not treatment may have played a role in his staying cancer-free as well as getting to undetected, but we'll never really know.  The instances of hcc recurrence post-SVR keep intruding on my positive thinking, but that's me, not him.  I've always been one to miss the view of the forest for the trees.

His doctor has stated that there is no protocol to recommend treating beyond 72 weeks, but considering it was "possible" that tx "may" help in my husband's case, he would continue to work with us if my husband chose to continue. There is some evidence to suggest that Interferon may have both anti-viral and anti-tumor properties, but it's still a big question mark.  So, the ball is in my husband's court at the moment but still bouncing around.  A different kind of March madness.

Wondering if Peg will be stood up by her usual Friday night date. ~eureka

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9648 tn?1290094807
by GreatBird, Mar 25, 2010
Congratulations to both of you! 72 weeks is a very long haul. Being off tx is a lot like being on tx when it comes to the doubt monsters. You just have to deal with them as they come along and try not to let them interfere with the business at hand.

As for doing "something," coming off tx is a time for recovery. That's something you can control--at least to the same extent you could control tx. Healthy food. Exercise. Building back health is like training for an athletic event. Doing more all the time without overdoing it. It's very important to smell the flowers.

Anyway, congrats again. You have much to celebrate!!

419309 tn?1326506891
by eureka254, Mar 25, 2010
Thanks, GB.  :)
Right now it still feels a little bit unreal that we've actually reached the maximum limit. The treatment's become such a routine that I have to think hard about what life was like before this, before his diagnosis.  He's scheduled to meet with the nurse tomorrow for the big "EOT" appointment to render his final decision,  but I think at this point he's ready to get back to "smelling the flowers" -- quite literally, as he's a landscaper :).   Now, if I could just get him to eat all those great veges that he likes to grow...!  Hoping to join you on the SVR cruise this year... :)   ~eureka

Avatar universal
by portann, Mar 25, 2010
Eureka, you two have worked at this so hard and together. It's the kind of situation that tests patience and commitment and here you two lovebirds are.

So now about Peg and the decision tomorrow... will she be stood up or not?

I wonder if spring is calling to him so hard that just the sight and the smell of the soil will influence his decision about wrapping up or not. I bet he'll want to get out there soon.

Although my garden is a landscaping mess, putting out beer for my slugs and soapy water out for my beetles kept my worries away when I was waiting for my own results.  I waited six months (by choice) and the only really anxious time concerning SVR (or not) was at the very beginning of post-tx and the time between taking the test and hearing the results. In the meantime, I tried to eat my own garden veggies (only had hot peppers, though) and avoid negative thinking.  It wasn't easy to do either one of these but hubby and a good friend set about to endlessly encourage me until I recovered my love of lettuce and life. It took longer to enjoy the hot peppers again.

Wishing you the best and will be thinking of you tomorrow,


Avatar universal
by mikesimon, Mar 26, 2010
Stopping treatment and I think especially stopping extended treatment is always fraught with anxiety. And that is true for people who don't have a tumor in their history so I can not imagine the stress you two are dealing with.
I always quote my Mother in times like these - She'd say "Son, don't borrow trouble". It is so true. I hear people say that they prepare for the worst. I say we can never prepare for the worst so why waste time trying and, in doing so, ruin the present. I say believe in the best and if things don't go quite right you'll deal with it then.

About continuing treatment: I did a lot of interferon/ribavirin and I don't think it hurt me. So, from that perspective, I doubt continuing treatment will a problem.  I have seen some suggestion that interferon does inhibit tumor growth. I'm sure you've seen the abstracts but, just in case I'll copy and paste one or two.

Abstract  The aim of this study was to examine the mechanism of interferon alpha (IFN-α) on inhibition of metastasis and recurrence of hepatocellular carcinoma (HCC). Nude mice bearing human HCC xenografts with high metastatic potential (LCI-D20) underwent curative resection of tumors on postimplant day 11. IFN-α was begun the next day at different dosages given subcutaneously for 35 consecutive days; normal saline solution was injected into the control mice. The mice were killed 48 hours after the final treatment, and the parameters were evaluated. The HCC intrahepatic recurrence rate, the size of the recurrent lesions, the rate of lung metastasis, the serum vascular endothelial growth factor level, and the microvessel density (immunohistochemistry) were as follows: 100%, 2136 ± 794 mm3 (mean ± standard deviation), 100%, 265.7 ± 154.7 pg/ml, and 144 ± 37/HP, respectively, in the control mice, whereas these same values were 62.5%, 89 ± 45 mm3, 12.5%, 53.3 ± 9.9 pg/ml, and 86 ± 25/HP, respectively, in the IFN-α 1.5 × 107  U/kg treatment group (P < 0.05) and 26.7%, 46 ± 21 mm3, 0%, 65.2 ± 17.9 pg/ml, and 39 ± 14/HP in the IFN-α 3 × 107 U/kg treatment group, respectively (P < 0.05). However, a significant difference was not found in the serum levels of basic fibroblast growth factor among the control and IFN-α treatment groups. IFN-α inhibits metastasis and recurrence of human HCC after curative resection in nude mice mediated by antiangiogenesis through downregulating expression of vascular endothelial growth factor but not basic fibroblast growth factor.

Prevention of human hepatocellular carcinoma with natural lymphoblastoid alpha interferon
Department of Clinical Research, Hepatitis and Liver Cancer Research Unit, Singapore General Hospital, Singapore  
Copyright 2002 Blackwell Publishing Asia Pty Ltd

Abstract  Hepatitis B surface antigen (HBsAg) positive hepatocellular carcinoma (HCC) patients have a high risk of recurrence within 5 years of hepatic resection and suitable long-term maintenance therapy is required. An open-ended controlled trial on 30 HBsAg positive Child Pugh's grade A cirrhotic patients was started in September 1986 using Wellferon (natural lymphoblastoid alpha interferon). Ten patients had standard adriamycin and mitomycin C monthly for 6 months, then discontinued when the course was completed. Twenty other patients had this regime, plus the addition of Wellferon given at 3 MU i.m. daily for 10 days. No HCC recurrence was observed in the interferon group. Followed to 14 years, 11 of the interferon-treated patients are still well and HCC free, whereas none of the chemotherapy patients are alive. High incidence of recurrence occurred in those who discontinued interferon (IFN), reduced the dose, or took the scheduled dose, but at longer intervals of more than 3 months. Wellferon, a natural α-IFN has potent inhibitory effects and reduces the risk of HCC development. It is a suitable agent for long-term maintenance prophylactic therapy for high-risk resected HBsAg positive HCC patients.

© 2002 Blackwell Publishing Asia Pty Ltd

I guess if I were in your Husband's situation and tolerating the interferon well I might continue. It would definitely be a very difficult decision.

I wish you and your Husband the best.

276730 tn?1327966546
by charm27, Mar 26, 2010
First of all I want to wish you and hubby the best as always.I know what a fight you have been thru and please know we have ALL been pulling for you.

Sending prayers always


338734 tn?1377163768
by IAmTheWalrus, Mar 29, 2010

Yeah, when you end TX you feel like it is out of your hands. At least before, you were taking shots and popping pills and enduring the misery. It is kind of a funny feeling when you know it is totally out of your control. Whatever you need to do, just do it and don't second guess would be my advice. Also whatever you do, you know we'll be behind you both 100%.

I think the jury is out on using SOC for maintenance or prophylaxis. I hope his fibrossis/cirrhosos score improved with the long tx he's been on. Mine did.

Best wishes to you both,
Brent & Liz

419309 tn?1326506891
by eureka254, Mar 30, 2010
Thank you all for the kind words and good wishes.  

In a strange turn of events, when we went to the visit Friday, the nurse apologized profusely that she hadn't heard back from the doctor about whether my husband should stop or not.  Apparently, the doctor had been out sick all week and had not gotten back to her about the literature we discussed, and she didn't feel right telling my husband he should stop without the doc's okay. *sigh* (Limbo is supposed to be fun, right?)

So he did shot #73 Friday, and I'm supposed to call the nurse on Wednesday for the doc's final verdict. Continuation by default?

Avatar universal
by mikesimon, Mar 30, 2010
I just saw this article.

J Hepatol. 2010 Mar 4. [Epub ahead of print]
Impact of peginterferon and ribavirin therapy on hepatocellular carcinoma: Incidence and survival in hepatitis C patients with advanced fibrosis.

Cardoso AC, Moucari R, Figueiredo-Mendes C, Ripault MP, Giuily N, Castelnau C, Boyer N, Asselah T, Martinot-Peignoux M, Maylin S, Carvalho-Filho RJ, Valla D, Bedossa P, Marcellin P.

Service d'Hépatologie, Hôpital Beaujon, AP-HP, INSERM U773-CRB3, Université Denis Diderot-Paris7, 100 Boulevard du Général Leclerc, 92110 Clichy, France.

BACKGROUND & AIMS: Hepatocellular carcinoma (HCC) currently represents the major cause of liver-related death in patients with hepatitis C virus (HCV)-related cirrhosis. We assessed the influence of combination therapy on the risk of HCC, liver-related complications (ascites, variceal bleeding), and liver-related death (or liver transplantation). METHODS: Three hundred seven chronic hepatitis C patients with bridging fibrosis (n=127) or cirrhosis (n=180) were evaluated by Cox regression analysis. Sustained virological response (SVR) was defined as undetectable serum HCV RNA at 24weeks after treatment. RESULTS: SVR developed in 33% of patients. The SVR rates were not different between patients with bridging fibrosis (37%) and those with cirrhosis (30%), p=0.186. During a median follow-up of 3.5years (range 1-18years) after the last treatment, the incidence rates per 100 person-years of HCC, liver-related complications, and liver-related death, were 1.24, 0.62, and 0.61 among SVR patients, respectively, and 5.85, 4.16, and 3.76 among non-SVR patients, respectively (log-rank test, p<0.001). According to multivariate analysis, non-SVR was an independent predictor of HCC (HR 3.06; 95% CI=1.12-8.39), liver-related complications (HR 4.73; 95% CI: 1.09-20.57), and liver-related death (HR 3.71; 95% CI=1.05-13.05). CONCLUSIONS: SVR is achieved in one-third of patients with HCV-related cirrhosis treated with peginterferon and ribavirin. SVR has a strong independent positive influence on the incidence of HCC and on the prognosis of these patients. Copyright © 2010. Published by Elsevier B.V.

Avatar universal
by child24angel, Apr 01, 2010

I wanted to stop by and wish you both the very best.

The above article posted by mikesimon has a strong statement

SVR is achieved in one-third of patients with HCV-related cirrhosis treated with peginterferon and ribavirin. SVR has a strong independent positive influence on the incidence of HCC and on the prognosis of these patients. Copyright © 2010. Published by Elsevier B.V.

This long road with all it's twist and turns will be well worth the SVR at the end:)

Hugs sent your way

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