Dr. wants to extend tx!!!!! yikes!

[jt57]

2nd tx.  rvr at 4 wks this time.   Now at 41 wks.  still und.  Got a letter from my doc today that he recommends I extend tx 24 more wks past the 48!!!  Even with und at 4 wks????  he states that it is because I relapsed last time.  But last time I was und at 11 wks.  not 4.  I have had a hard time with tx, 3 blood tx.  anemia is awful.  so are the side effects from the neupogen...just to name a few.  I cannot stomach even thinking about an extra six months....what are your thoughts guys?

[James10500]

My heart goes out to you.  I wish I was a hepatologist and could offer you an educated opinion.

[jt57]

i meant 3 blood transfusions, not 3 blood tx...

jean

[paen53]

Ugh, I've been at that crossroad too.

Can I ask what your staging is? I read you had a Riba reduction a few months back...how long did that last and at what dose?

[Trish77]

That's my question as well.  Were your dosages reduced at all in your last treatment and for this treatment and if yes, at what weeks, for how long and by how much?  Thanks.

[copyman]

NO WAY! Take your chances. With a 4 week RVR I would feel confident to stop at 48.  You have Telaprevir or Boceprevir to fall back on if you relapse. I just dont think another 24 weeks of the harsh drugs damaging the body is worth it.

If I did anything beyond 48 weeks it would be tapering off the interferon.

Something like 3/4 shot 49th week, 1/2 shot 50th, 1/4 shot 51st.

The tapering off gives your immune system time to start fighting on its own. Do data on this just personal experience and opinion.

Best of luck

[jt57]

I am a 1b.  1/2 biopsy.  i had a riba reduction and it has not been increased, because of my weight loss and my anemia problems.  I started at 1000, and have been at 800 since the reduction.    I am so disillusioned right now.  My alt/ast is normal for the first time!  wasnt during last tx.  und at 4 wks.  11 wks last tx.    I am really torn up about this.

Jean

[can-do-man]

Wow what a nice christmas gift from your doctor hey? Although it does seem to be the norm that doctors extend tx for relapsers even if und at week 12. how being rvr plays into that i don't know. If you do decide to extend tx try not to look at it as 6 more months, just play it one week at a time.

For all you have went through already you must be one tough cookie and determine to beat this, myself i would try and go as long as i could, just one week at a time.

Wishing you the very best,
cando

[jt57]

i had the same riba reduction last tx.  I think it was around 20 wks.  It did not get increased.  because of my weight, and anemia.  no transfusions last time.  but it has been really rough with the anemia this time.

copyman,
I am inclined to agree with you.  I feel I will have svr. If not, I would rather do 6 mos with a pi thrown in.  plus, my body needs a break, as well as my mind.

[jt57]

cando,

I feel being rvr has got to be a good thing.  Makes me wonder if good ole doc took that into consideration before writing his letter.  BTW, I was just in his office last Thursday....???

[can-do-man]

" I would rather do 6 mos with a pi thrown in"

Would it only be 6 months if you were a 2 time relapser? Something you might want to ask.

[can-do-man]

" Makes me wonder if good ole doc took that into consideration before writing his letter"

Good point there!

[jt57]

cando

i just assumed it would be 6 mos.  but you may be right.  as a 1b relapser, it may be longer.  Just as I thought I may be getting my life back soon....but don't you think being a rvr is in my favor of stopping at 48?

[Trish77]

I would say ditto on can-do-man's comments, all of them.  I wouldn't be so quick to throw away 41 weeks of treatment and an RVR without digging deep and giving it just a little extra kick.  If I had already toughed my way through 41 weeks of treatment, I'd keep going and hope I'd never have to do this again.  Telaprevir and Boceprevir have yet to be approved and once they're approved, the insurance companies need to do their part and it's unknown what they're going to cost.  If you were waiting on treatment or still detectable at 12 weeks, that would be different.  But you've already made it to 41 weeks and toughed through this.  I sure wouldn't want to do this again if I didn't have to and Tela and Boce both require interferon and ribavirin.

I'd approach it also not as 6 months but one week at a time.  I'd get as far as I could tolerate and then stop.  That's my take on it.....not being actually IN your shoes.

It's your body .. and your experience however.  And a tough decision regardless so I wish you good luck in sorting out what's best for you.

[Trish77]

I would also agree...that as a two -time relapser, they may want you to go 48 weeks even with Telaprevir or Boceprevir.  I would give your current tx as much kick as you can muster up in you and hope it sticks.

[jt57]

cando/trish

what do you think of copymans idea of tapering off the interferon?

[can-do-man]

Sure do, being rvr has to be in your favor, not sure i recall anyone here ever being in this situation before, just the normal relapser doing 72 weeks their next tx if being a g1..... Being you have little liver damage might be a good way to look at it.......... Really sorry you have to be going through this.

[Trish77]

Can I ask what your ribavirin dosage has been throughout your treatment up until now?  That's the only dosage reduction you've had?  Thanks.

[jt57]

thx cando.  really bummed.  but this tx has a way of doing that to us, doesn't it!

[can-do-man]

Tapering to me would be just like dose reducing, myself it would be all or nothing. Just my opinon though.

[paen53]

That's a tough call. If you were a 3-4, I'd say stay the course, especially since you've got so much invested into tx already. Is your 800 mg. Riba weight based for you?  With your bx and the serious anemia issues throughout, if I were in your shoes, I'd stick it out as long as I could, at least to 48 weeks and hope for the best. I went 72 but I didn't have the anemia issues you have and was crawling my way to the finish line.Teleprevir would be perhaps your best bet since Boceprevir has serious anemia issues. Like can-do said, there's no guarantee of the 6 month course with the PI's, so I wouldn't count on that. It's a hard call being so close to the new drugs and being so near the end of your second tx. My heart goes out to you.

[jt57]

yes trish.  just riba reduction.  started at 1000. reduced to 800.  I cheated for awhile and stayed at 1000, but the anemia got so bad I had to reduce.  Doc wanted to go to 600, but I never did it.  Im a bad girl....

[can-do-man]

"but this tx has a way of doing that to us, doesn't it!"

That it does, but we fight on. As a relapser that is now SVR it was worth it... Just keep smiling.

[jt57]

I totally intend to finish out the 48.  Maybe kick in 52, if I can.  But I don't know if I can...the anemia is awful!!  Yes paen53, the riba is weight based.  I started out around 130 and am now at 104.  have been around 102-108 the last few months.  I guess so much of my dilemma is emotional.  If I had gone into this knowing I would be doing 72 would be one thing....but I didn't.  and with a 4 wk RVR, I just never even though I would be advised to extend...my bad.

[jt57]

cando,

how many times did you tx?  and for how long?