Five weeks done

[DougV]

Really nothing new.  Hemoglobin at week four down 4.1 to 12.0.  Gave blood for CBC today and expext down another point.  Getting noticable now, restless, don't sleep well, not short of breath yet but breathing deeper and more frequent, all way too familiar.

But that's about it.  Little down, just natural result of hemoglobin falling, but still feel good and still doing pretty much what I want. 

Doug

[rayc2001]

Thanks for the update Doug.  I had 16 weeks of insomnia that took a drug concoction to put me to sleep the last time I treated.  I have not had any sleep problems this time, but the Dr. put me on 2 drugs prior to treatment.  I have not had pain this time around, and after the last treatment, I will stick to heat pads and such.  The Drs. put me on the anti-depressent, and a #5 in the morning and at night of valium. I hope I remain trouble free.  oh, by no pain, I mean I just get low grade headaches so far, but no body aches or anything I would want or need to take anything for.  Best wishes

Ray

[willy]

I think if you can hang on as long as you can w/ the Telaprevir..... as soon as you drop it I think that your anemia may improve somewhat.  I still feel like a 2 week PCR is a good idea with TVR.  At some point they will know how many weeks.....some optimal amount of time following clearing that SOC should follow.  In which case a person who clears at week 4 would treat longer than a person who cleared at day 3 (Yes, i know a person who cleared her 3rd day)

There were a very small group of people who treated 12 weeks only and stopped.  By week 12 the teleprevir is doing a lot less than it was in the first month.

I have a feeling that those who treated in the 8 weeks of Telaprevir trial (8 triple w/ 16 SOC) had comparable or better SVR rates if they were in the most rapid viral decline group.  Thewre are people who stopped, discontinued TX due to sides and were in a sense, treatment failures....that is....they couldn't endure the treatment.......

...... but they still SVR'ed.

In your case it would have been interesting to know if you cleared week 1/ 2/ 3 or 4.......  I'm not saying that there is enough data to suggest a change to off label treatment, but for the sake of argument, if you cleared week 1.....might you be able to knock off a week of triple therapy.....
.....and in doing so.....might the mild boost allow you to finish the 12 weeks of SOC, or even know if one could do a shorter form of TX?

The idea is analogous to the new protocols in some countries (EU in general I think, in some cases) that if you are a G1 w/ a complete RVR (4 and 12 weeks) you may be able to TX for 24 weeks total.

I thought I heard some where that Vertex is looking to isolate groups who may be able to TX for just 12 weeks.  The protocols for this might be low staging, CC alelle, uber early response.... etc.  If this is true there must be a group that might go 16 weeks total based on certain response rates and other factors.  You get the idea.....

Willy

[DougV]

Willy,

Doubt stopping Incivek will do much.  This is exactly the same rate of decline I have had both times before.  For me, my issue appears to be Riba.  Lowering to 600mg and up to 80,000iu Procrit weekly didn't put a dent in that 1.0 weekly drop I get every single time.  Honestly doesn't matter to me.  At current rate max time I will have to deal with this is 16 weeks, max then is infuse two units eight times.  Been there done that already.

I am not reducing anything.  Two docs agree with me, no Procrit, no reduction, for 24 weeks and deal with anemia with packed RBC.  Oddly the infusions are kind of nice.  Go in feeling half dead, leave few hours later feeling decent.  They have agreed to infuse earlier, at 8.0 and keep me out of that six range.  They do that, this will be a breeze.

Remember this is my third and last time.  I am not taking any chances and will do nothing that even might impact things.  I will also stop Tuesday if four week VL anything other than undetectable.  That simply because I can't see myself living off infusion that long.  I will get two week VL at same time as four week so I will know results, but honestly don't care.  There is no statistics showing any change in treatment duration or success rate and I don't deal in hunches or guesses.  Sure I would like to know I was undetectable then, but it just isn't a big deal. 

Interestingly I do not have starting VL anyway.  Last one I had done was four months before I started and my VL in past has ranged from single digit millions to I think 53 million my personal best.  As log drop no longer used and as there was no question I have hep we didn't bother.  I did get baseline CBC but that is it.

Ray, I don't have insomnia, I go to sleep in minutes.  The problem I have is secondary to anemia.  As hemoglobin falls I start getting restless and wake up all the time.  I am not taking any meds other than treatment drugs and vitamins and even the vitamins I take couple hours seperate from treatment drugs.  I do get a bit down when I get anemic, but it is inevitable when your body doesn't have really adequate perfusion and only hemoglobin helps.  Newer sleeping meds are better at getting you asleep then keeping you asleep and old drugs leave me drug hangover, no thanks.  Don't have pain issues and heck if I did my wife has bad RA/OA and has pain pills up to 60mg morphine so if something comes up I'm covered.  Funny thing is my wife also sees my GI  so he is well aware I have access.

Son and I taking my two year old grandtwins to Adventure Island tomorrow.  Long as I can still do things like this I feel I am doing good.

Just did sixth shot (Did shot night before starting pills so I would have interferon in system with day one pills.) and have yet to have so much as a headache.  Still a bit of rear end discomfort but not that bad.  If this and few gallons of blood is all I gotta hang with this is gonna be a breeze.  Headed Lauderdale next weekend for two day trauma certification.  That's my test, should have hemoglobin headed below ten and figure if I can hang with an intensive two day class I should be good throughout treatment.

Doug