9 Days left on Incivek but struggling

[Cyn621]

I have 9 days left on Incivek but honestly, I feel like I am dying a slow death.  I no longer go to work and I can barely breath.  My doctor is trying to get me to the end of the 9 days without having to give me Neupogen.  My WBC is 2.0 and my Platelet Count is 109.  


I am seriously considering just ending this now and taking my chances that the Incivek did it's job.  At 4 weeks I was undetectable.  This is my first time treating. I am genotype 1.  Had a liver bioposy at the start stage 1, grade 1.  Viral load was 6.2mil.  All liver tests AST/ALT in normal range  I keep thinking, what difference can 9 lousy days make and I am so sick at this point, I feel like I need to save myself.  HELP!

[nygirl7]

Agree with Candoman SOC portion of treatment is no walk in the park either once your numbers are whacked but hopefully you've not put yourself at too much risk of relapse with the decision to stop early. It is your decision just don't expect the numbers to get all that much better as he said the intereferon and riba alone cause the problems.

[flcyclist]

I doubt you will hear any flack at all from this group.  We don't walk in your shoes, so there's no way to know how you truely feel each day.  We just want to see you get to SVR.

I hope you tolerate the Inf/Riba well and push through the remaining 13 weeks.   It's unfortunate that some of the docs treating with the PI's don't appear sympathetic to the needs of the patients.  It sounds like some are just too busy, too many patients to handle, or just have a poor bedside manner.  I hope your doc works out for you while providing you the proper guidance.   Best luck to you for the remainder of trt.

[can-do-man]

No flack from me, its your choice and your life, just so you know don't expect a walk in the park with just doing the interferon and ribavirin with the sxs you have mentioned. Interferon is the main cause for low WBC and Ribavirin is the main cause for anemia so i doubt you will see much improvement. I would expect you will still need procrit and maybe even Neupogen.

Wishing you the best.

[Cyn621]

I talked to my doctor today and he told me to tough it out (as usual) and that he never said this was going to be 'a walk in the park'. He also said, 'you have the prescription for the blood work'.  Once you're done, get the test and make an appointment to see me.  I really did research this guy and I thought he seemed pretty good but as I got into this, I really started to dislike him.  I did talk to him about going to a hepatologist earlier on and he said you could if you want but you don't need to.  Although I may have mixed up something, I clearly asked him about Procruit in my last visit when he was concerned about the results and he said you don't need Procruit you need Neupogen.  

I know I'm going to take a lot of flack for this but I've decided that Friday will be my last day on Incevik (one week early).  I guess then I have to wait out the week to get the 12 week blood work or do I get that at 11 weeks? II feel like this is the best choice for me.  I have to do something. I don't even feel like a person anymore (I can't function, I don't look like me, I can't even see clearly anymore, blah, blah).  In any case, I'll let you know how it goes.  It may help others.  Thank you to all.  You are so knowledgable and kind. I still have 13 more weeks (or more) on the Interferon and Ribavirin so I'll keep posting.    Cyndi  

[desrt]

Thank you for the link.

can-do-man:

"6% pts might not seem like alot but if you don't know the total make up how much does it mean?........ Plus i wonder what one of those 6% think about it"

"toxicity-driven discontinuation occurred in 7% and 8% of patients receiving 12-week and 8-week telaprevir, respectively, and in 4% of patients receiving placebo"

I guess there are some other participants whose thoughts it would be interesting to know.

[frijole]

cyn
I am glad we got this discussion on track to pin down the problem, and I think we all agree HGB or hemoglobin (which carries the oxygen to the blood) (and thank you, nygirl, for your definitions) is the problem

Either you misunderstood your doctor (and it does not sound like you did, because you are pretty clear in telling us what he said), he is wrong.  Are you treating with a GI (gastroenterologist) rather than a hepatologist?  If possible could you get a referral to a hemotologist (blood specialist)?  You will feel much better if you can get some procrit.  Please call the doctor again and request he order it or refer you to a hemotologist  (ASAP)

frijole