Relapsed

[Tekelcat]

After 24 weeks of INF, Ribavirin, GS5885 and another Gilead, UND by week 6, then straight into another 24 weeks of INF and Ribavirin, my PCR shows HVC RNA at week 12 EOT. HCV-1a. CC. Very tough year of tx with lots of sides. What now? Hepa says no more INF. Sofobuvir (GS7977) not doing so well with 1a and 1b and not yet tested on relapses. I'm 62, moderate fibrosis prior to tx. I'm tired. What to do?

[Idyllic]

I was more than content if I could keep my Hemoglobin at 10. 10 is usually the value where intervention is considered (dose reduction) though some people can continue to treat at this level without dose reducing. It just depends on the person & their medical particulars.

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I see you are having another Fibroscan. How old is that Fibroscan of 8 you mentioned. Is that -= to a Metavir stage 2?

The thing is didn't your Hepa tell you No more Interferon? If that is the case then I am not sure what to say. I'm not sure if you have other conditions so forgive me if I am out of line here but it is sounding like you might be able to adhere to triple treatment duration with perhaps maybe more effective side management.

Bone pain and Neutropenia are known potential side effects of Peginterferon. As mentioned, dose reduction is one course of action. However based on the posts I have seen here, and what i have read elsewhere in addition to people I know personally who have treated there are ★Many★ approaches to effective management of averse events ~ especially pain.

I agree with others that so much of what you have said indicates you responded well to the meds in the past. If (IF) you decide to treat again I would find a way to plan in advance with a doctor (or doctors) differently versed in side effect management with triple therapy. You deserve a fighting chance to tolerate the treatment and maintain some type of quality of life in the process.  

Treatment Duration
Thought there are some caveats, the gist is:
As a relapser if you treat with Incivek and are UND on weeks 4 & 12 you would be eligible to treat 24 weeks; if not, treatment duration would be 48 weeks.

It's a little trickier with Boceprevir so here's a chart:
http://www.medhelp.org/user_photos/show/284656?personal_page_id=1282072


Best of luck
★¸¸.☆Take your very well deserved break first and heal.★¸¸.☆
★¸¸.☆Think about all this stuff later★¸¸.☆

[Tekelcat]

In September 2011 before tx, my Fibroscan score was 8, sort of low end of bad fibrosis. The good thing about Fibroscan is that it's not invasive and it looks at a lot of liver tissue. The bad thing is that while it is very accurate at assessing low and very high fibrosis, it's not so reliable in the 7-8 range. Biopsy is more accurate across all ranges, but it only takes a tiny, tiny sample which may not be representative. One would hope that after 11 months of UND, my liver is no worse than before tx, but with this virus, who knows? Thanks for your kind words. Love your blog.

[Tekelcat]

Dear pooh,

Thanks for your good advice. My main problem with the INF was severe bone pain. My hemoglobin went down to just below 100 (100 equals 10 in your system, I believe?) But then it crept up a tiny bit to just over 100, so there was no talk of dealing with it. Fact is, I don't know what they do here if the hemoglobin goes lower than 98. I did have a ribavirin reduction in the last 3 months of tx, from 1200 to 600. This was because I had two episodes of neutropenia and extreme vomiting for days on end which put great stress on my heart and esophagus. I also lost weight over the course of treatment and went down to the weight at which 600 ribavirin is recommended. But I agree with you, if I am going to put myself through this again, I need to know I can stay on the drugs and the therapeutic dosages no matter what. I also need to keep on working, which I pretty much managed to do during last tx. In the meantime, stage the liver again, rest, think, go to NZ for my birthday in a couple of weeks, go to Japan, Cape Cod, NH, Seattle and Thailand for work and family and island rest in May-June, then maybe try again.

[Tekelcat]

Don't all relapsers have to do 24 triple and then 24 INF and Ribavirin?

[Tekelcat]

"Usually when one  fails tx. with one of these new medications,the reason is from their lack of sensitivity to the Interferon."

Yeah. No, I responded to the INF, the ribavirin, but it was probably the GS5885 that brought the VL down so low so quickly. In monotherapy trials with GS5885, it always decreased the VL really fast and really low but only for a short time. Response was not the issue. Relapse was. I should have been UND at week 4, but didn't reach UND until some time between W4 and W6. I'm betting that if I'd had the PI I would have had VEVR. My hepa said clearly that I had >85% chance of SVR if I reached UND at W4 or before. When I did not, he said my chance of SVR had reduced to ~60%. The telaprevir and boceprevir studies for old SOC relapsers without cirrhosis put the SVR rate at >85.

Of course, all this partly depends on sx. I did very badly on INF and had 2 major adverse events in the last 3 months of tx which necessitated reduction of ribavirin, though not INF. I hear awful things about sx on triple tx, so I need to think about what I can stand and how urgent it is to treat (restaging liver now)

Thanks all for your advice and support.

[pooh55811]

I agree with Karen (crossroads) and Can-do, go for it. You had a good response to the Inf and Riba. It if was me, I would treat as soon as I could or, at least, as soon as I recuperated from the previous Tx.  

One thing to keep in mind is that the PIs do usually cause a drop in Hemoglobin. You take Incivek for 12 weeks whereas you have to take Victrellis for 24 weeks. Might be something to discuss with your doctor which drug would be best for you in your situation since you had an anemia problem with the last Tx. Also, I know you are in Australia. Do they use rescue drugs like Procrit and Neupogen? I know your Riba was reduced last time, I believe you said down to 400 mg from 1200 mg. That is quite a drop in Riba dose. And was your Interferon reduced too? These are all things to discuss with your doc to see if they can try to keep you on the drugs so that you will have the best chance possible for SVR.

Being that you are in your 60s, liver fibrosis progression will probably speed up. It is better to treat before one advances to the higher fibrosis stages. One has more complications and also the SVR rate is lower with more advanced fibrosis.

Best of luck.