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Avatar universal

No RVR on SOC

Drum roll............HCV RNA iu/mL: 226

Nurse called with week 4 labs and I didn't clear. Kinda bummed, but I will be really bummed if I don't clear at 6 weeks as that will mean I got placebo. It is an official 4 log drop by week 4 though, so I am thankful for that.

And my platelets are a freak show. The are almost normal in the 120s and have been over 100 since I screened!! It is so confusing. My spleen is enlarged, HR had my Fibroscan at 21, I have varicies and my platelets are hanging in on tx. I know they fluctuate, but I am clearly interferon sensitive and yet it is not making my platelets tank. Go figure.

This does make for a weird situation as far as figuring out the placebo thing, though. Stormrider, did you ever get your 4 week labs? Were you clear at 4? If I am clear at 6, I will not know if it was just SOC or I got the Boceprevir.

If I am NOT clear, I feel that it means placebo, right? NYGirl hung at 400 forever on SOC. Even though it would be only two weeks of trial drug, there is only 226 of those suckers to kill. Also, if in placebo arm and you are clear at treatment week 24, I think (I have to look the week up again) you aren't offered the rollover to the real drug.

Another thing is my blood has been drawn about 44 hours after injection on 2 and 4. My week 6 will be next Wednesday, 96 hours post injection. Does that screw things up? Here are my labs to date:

TREATMENT WEEK 0 (Day 1)
HCV RNA iu/mL: 9,920,000
Bilirubin: 0.7
ALT: 44 AST: 41
Creatinine: 0.8
Hemoglobin: 15.75
WBC: 5.36
ANC: 3.7
Neutrophils: 69
Platelets: 137

TREATMENT WEEK 2
HCV RNA iu/mL: 2420
Bilirubin: 1.1
ALT: 21 AST: 30
Creatinine: 0.6
Hemoglobin: 12.2
WBC: 2.95
ANC: 1.67
Neutrophils: 56.7
Platelets: 127

TREATMENT WEEK 4
HCV RNA iu/mL:
Bilirubin: 0.7
ALT: 18 AST: 27
Creatinine: 0.6
Hemoglobin: 10.9
WBC: 1.78
ANC: 1.0
Neutrophils: 56.9
Platelets: 124

Nurse made no comment about anything and didn't ask how I was feeling (which, I realize now, doesn't matter to them after no help through the horror of the first three weeks). I have nurse appointments but do not see the doc until February. I thought a few things seemed a little low but I guess not enough to concern them. Just can't walk for more than 20 paces without having to sit down, but oh well (unless I am having chest pains or am ready to kill myself, there is no reaction). I guess the upside is my body is absorbing the hell out of the riba.

Super smiley sweet and nice nurses though! Plenty of nodding of the heads, "Oh gosh darn it, that's unfortunate, yes, those darn sides, cripes that's too bad, are you drinking enough water, oh, don't drink too much water, hmmm you should be feeling fine by now, because most people don't have many side effects at this center, you know a positive attitude really takes care of many of our patients side effects..." ARRRGGGHHH.

One thing that I don't get is the helper for whites getting pooh-poohed by two doctors I am dealing with. My main doc (big shot transplant guy, hcv expert) said they don't believe it works and don't prescribe it, and the trial doc says it isn't part of the trial. I know that shouldn't be a concern unless ANC would drop quite a bit lower, but I would like to know what the deal is. Wonder if I will have to be near heart attack to get Procrit.

I am due for my 6 month AFP and ultrasound for HCC that is through my main guy, maybe he will go ahead and prescribe whatever I need. I have the damn insurance.

Can you tell I am crabby? Anyone? Anyone? I guess that is enough venting/rambling for now. I will return before the New Year in a better mood.

Foo
58 Responses
Avatar universal
I actually think you may be getting the real drug. The reason you didn't clear is because of your extensive liver damage. I think you will be clear in the next week or 2. Best wishes and Happy New Year.
Avatar universal
Thanks, I needed that slap in the face, copy. Forest through the trees.

Yes, it is a miracle that I have responded as well as I have on SOC considering odds for cirrhotics. I have only been taking the study drug for a little over a week now. Week 6 will be the first labs since I started the BBP diet (big blue pill).

I hope you are right. It would be so great if all our board buddies in the Blue Man Group get the real deal.

And best wishes and a happy new year to you.

Foo
Avatar universal
Hey Foo,
I know its hard not to be disappointed, but I do believe you will clear real soon. The other thing I noticed, unless I am not seeing this clearly which is quite possible (my brain is tired at this point) .....you had your week 4 lab drawn 44 hrs after your injection and it left you with those virons,,,,,but if the injection was given a FULL WEEK to work, you just may have been UND. What I am trying to say is the shot was only given a couple days to work. Now the 6th week lab is going to be done 96 hrs after injection - which will give the meds a little bit more time to work, but still not a full week to see what the shot does. I don't know if I am making sense or understanding this correctly.

"most people don't have many side effects at this center, you know a positive attitude really takes care of many of our patients side effects..." ARRRGGGHHH. "

LOL, that nurse is an idiot. Well, the blues will come with these meds now and then. She should read the insert to the meds maybe.

Some doctors and nurses don't want to hear anything, thats why some want to pre-medicate with AD's - so you handle the treatment with "grace."  :o)  

They can keep the AD's. If my husband can deal with a mood swing now and then and then and then;o) so can they...Thank God my doc is good about all that - totally understands what the drugs do and that everyone is affected differently. I let him know sometimes I feel down for the count and other days I am on top of a mountain and that I wish "happy thoughts" could control what I feel. He said its the meds, they affect the mind. If he would have said something like your nurse said, I know I would have had a tantrum and yes I may not be the most patient person even off meds, but a tantrum I don't think I would throw if I wasn't on meds. Then again. Maybe I would throw a teenie weenie tantrum, but I don't count the teenie tantrums - my husband keeps track, I don't need to ;o)

Hang in there Foo. I think you are going to be fine. And no I don't think you were crabby at all!  Vent all you want!


476246 tn?1418874514
I also think you are doing really well!!! I must say that you had a drastic drop of hemo, that must be feeling really dizzy miss lizzy... Be careful in the bathroom!!!

Happy New Year!

223152 tn?1346981971
Your labs look good.  Of course we all want to clear at 4 weeks but odds are that we won't.  I don't think you need Neupogen yet and maybe you won't -- ANC of 1.0 is actually pretty darn good.  But your HGB has tanked from 15. to 10.9 pretty d.. fast and I imagine you really do feel rotten.  I know the BOC trials do allow Procrit.   How low does your HGB have to be to have it rxed?  

Looking at your profile - love the R&R picture and your commetary of where everyone is now.  My how we change over time, eh?
frijole
Avatar universal
IF I'm reading it correctly you went from 9,920,000 to 226 ml/IU in 4 weeks?  That's an exceptional log drop!!!!!!!!  You are VERY close to clear from virtually 10 million (that's a lot of zeros) in 4 weeks.  I would feel very happy about that.  I surely wouldn't rule out being on triple therapy.  That is great expecially for a stage 4.

The trick of course, is clearing and staying clear.  You need to avoid dose reductions.  IF you can get some form of rescue drug it might nail this down regardless of whether you are on triple therapy or not.  You might remind them that you MUST clear and stay clear or your chance with protease inhibitors are used up (without resistance issues).  It could be that some pleading might work.  A hemotologist might also prescribe some form of rescue drug for you or know an alternative for you but the main thing is that you must resist dose reductions even if it means bed rest.  This is a very critical period.  I hope that the trial director might allow some amount of "fudge" in your case.  On the other hand you may find that you become acclimated to your lower scores and be able to continue to function with some allowances.  

Ask for help (cooking, driving, shopping,housework)
Simply do less of everything; rest, rest, rest,
Maintain a good diet
Is your iron OK?
IF procrit is not allowed, how about a transfusion to tide you through?
A hemotologist might be able to "overrule", sign off on responsibility or reason with your current doctors.

Crossing fingers for you.

Best,
Willy
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