ROUND 8

[rockymoe]

Starting my 8th treatment 8/15 Victrelis. Was in telaprevir study got placebo then did rollover got the worst rash I looked like one big welt. Cleared but virus mutated and virus broke thru week 4.. Have others had this many treatments?

[dointime]

Thanks again for your very informative post.  I am really sorry you have had such a rough ride with this d@mn virus.

I am glad to hear that you are doing the 4 week lead in.  Worst case, you only get 4 weeks of toxic drugs if it's not working.  But fingers crossed you have a good chance, having in the past had a good enough ifn response to stay UND till EOT.

I hope you stay on here and let us know how it goes.
My very best wishes that this will be your last time,

dointime

[rockymoe]

The first 2 treatments were just the IFN and RBV for 48 wks. and I cleared both times but broke thru 3 mos. after treatment. then I did PegIFN and RBV and didn't clear. Then I did the Infergen and RBV which was a daily shot and RBV which was the most debilatating of them all and cleared at 48 weeks but virus was back 3 mos later. I felt like a zombie after that one. Yes I am doing the 4 week lead with PegIntron and  RBV and pray it drops enough to continue witn the Bocep. Where it has been 3 years I am more stressed about feeling crappy again. I am considered relasper and non responder, This is the longest I have gone between treatments so I was so use to all the side effects. I have felt pretty good for three years. With mold exposure which just killed my immuune system and I have a lot of allergies and developed asthma so I am a walking pharmacy as it is.

[dointime]

Many thanks for all the info you have shared.  I was on a tela trial too and got the very scary rash, and failed with a breakthrough.  That was 4 years ago.

So if I am understanding you, you also had a breakthrough on your first treatment with SOC in 2000.  How about all the other tx's - did they end with a breakthrough as well?  

Are you doing the 4 week lead in on SOC alone, or do you start the Victrelis on day1 ?

Hope you don't mind the questions but we haven't had many people here who have done a retreatment, hence the interest.

Best,
dointime    

  

[spectda]

A lot of us are interested in your retreatment. Treating with a such a similar PI is a big unknown right now. Please keep us informed of your progress and general tx experience.

How often will you have pcrs and cbcs? Hopefully you will have a PCR at week 4 and even week 2 if possible? Are you going to use a the sensitive tests like the ngi quantisure or heptimax?
Did you use ribavirin in the study? If so what was your hgb start and where was it when tx was stopped. Where you stopped at exactly week 6?

Best of luck to you. Hope this works for you.
-Dave

[rockymoe]

No the Dr has never brought up cross resistence. He also sent me to a top liver guy in Boston and he never mevtioned it. He recommended that i wait for the Bocep to come on the market and that he didn't recommend any of the study trials out there at the time. It has been almot 3 years since the Telap study. I broke thru at 6 weeks and that's why I was dropped but would have been anyway because of the rash. At that point i was glad because the rash was so bad and as much as I hate prednisone I was glad I could take it. I was on predinosone for about 2 yrs due to exposure to Toxic Mold in an office bldg I worked in. This caused many health problems I still have. It was in 2000 and I was on my first treatment which I cleared on but again at 6 weeks the virus returned. There is a person in my town that is waiting for a liver transplant they are doing fund raisers for. He has a live donor. Why can't they hold liver donor testings like they do bone marrow. I have stage 3 liver damage and am far from that. This guy has a tumor on his but does have Hep C

[susan400]

Yup, I've done 10 treatments, if you include the maintenance treatment in this mix, it's 11 with this current one I'm doing.  Two of those treatments were only for 5 wks though. They were clinical trials that I got kicked out of on week 5, based on my week 4 blood draw.  In the Telaprevir trial, I actually got the Telap, got HUGE rash on 2nd week.  I had no Riba, so I knew it wasn't a Riba rash.  I did not clear, either.  So, with this Telap exposure, I was having a really hard time finding any trials that would take me.  Finally, 3 yrs later, I found one.  I had originally planned to retreat with Bocep and use all 3 drugs.  That was my plan.  I didn't care about the cross resistance, I was going to do it anyway.  But, when I had the chance to do this trial, I went this route instead.  I get full SOC in this trial and if I'm on the placebo (which I don't know), then, at the end of 12 wks, I automatically roll over onto the real study drug.  What swayed me towards a trial was that financially speaking, my money situation is dire.  If the Gov't takes away the only income I have (SSDI), then, I'll be TOTALLY screwed.  Anyway, I don't want to get into that subject here, it would create too much of an argument.  My point is that the Bocep was not going to be covered on my Medicare Advantage plan because it's a non-generic and they only cover generic drugs of which I would have to pay 50-75% of the cost of the generic.  Whether or not the drug company was going to give me all 3 drugs for free, was debatable.  Right now, I'm hoping and PRAYING hard that I don't lose my car, it's that bad.  But, I know that many, many people in this country are struggling as well, not just me.  Back to the topic, I didn't get bumped off of Telap because of the rash (even though it was horrendous), it was because of the viral load not being low enough at week 4.  Susan400

[lynda607]

Curious at what week you became UND with Telaprevir and were you still taking it at week 4 or did they stop you prior to the week 4 PCR because of the rash?  

[willbb]

I have also treated in a trial and did not clear(. Not tela...but BMS 790052  (NS5A) and would also be very interested in what your doctor had to say about cross resistance

Good luck with Victrelis...

Will

[frijole]

Yes, I am interested in the cross resistance too.  Good luck with the victrelis.

Susan400 is on about her 9th treatment  (maybe 10th) with a new trial - a non PI.  She was in the Telaprevir trial and had no riba.  Perhaps she will see this post and respond.

frijole

[dointime]

Hi Rocky,

Sorry that you have had to go through so many tx's.  There are a few others that have done this many so maybe they will join in.

I'd be interested to know how long ago you had the breakthrough on telaprevir?  Also, has anybody discussed with you about cross-resistance to Victrelis?  I would really like to know what your doc said about this?

Thanks and best wishes,
dointime