week 12

Question

10.3 hgb
slightly low platelets
still und.
I was told the clinic is looking at other drugs for study that do not include peg
Gawd, I"m  glad I dont have to do 72 weeks of this stuff.

Mary4now · Answer

Junebug, 9.7 sounds intolerable.
My "problem" is I dont have insurance so I can get "stuff" on my own.  
I am however close to 16 weeks and at 16 weeks if I'm still und I will be randomized to stop treatment.
I'm a big baby, so I'm ready to stop.
thanks for the feedback its nice to know you're there.
hats off to everyone who went through this treatment

Junebug812 · Answer

Oh Mary, I'm sorry you feel so poorly. My HGB dropped to 9.7 and I had a really tough time with it, to the point where I nearly gave up tx. I got Procrit instead. Anyway, I understand what you're going through. Gasping for air and having a hard time just walking down the block is really disconcerting. Take good care of yourself and I hope your numbers go up.

June

willbb · Answer

The study I was in( not the Gilead) also did not allow rescue drugs,some do and others don"t.I believe it is partly the cost and partly they want to see how exactly their drug affects you both positively(viral load reduction) and negatively without external interference ,,,so to speak.
 
 Dose reduction in most trials is a last resort....they sometimes will give a blood transfusion if HGB. gets dangerously low before reducing ,and put you on antibiotics if white cells get too low.

 Very often blood levels don"t reach the point of needing intervention.

Good luck ..
Will

Mary4now · Answer

ooh, I lied my hgb is 11.3, I started out at 15.5,  I'm glad its not any lower I can hardly stand the exhaustion as is.

Mary4now · Answer

to be honest with you I'm not sure I thought about this. I will call the clinic. I know that if your platelets are low you can get a script from your primary and get them on your own. So maybe it is the expense,

temmi · Answer

Is the reason for not providing rescue drugs  the expense or is it part of the study not to include those drugs in the treatment? Tomorrow I have my first appointment with the clinical study team and it would be helpful to be informed as possible.

spectda · Answer

Usually a study will not provide free rescue drugs. The question is whether the doctor will prescribe them and allow you to purchase them privately or through your insurance.

I believe it is less common for early stage trials to allow rescue drugs then late phase 2 or phase 3 trials

To give yourself the best chance of svr dose reduction should always be a last resort and a study that prohibits rescue drugs should be carefully evaluated before participating in my opinion. 
-Dave

Mary4now · Answer

temmi,  No they dont give you rescue drugs in this study, they will adjust to make you comfortable.  I had a bad cold in the beginning and the study doc was gonna give me antibiotics.  So they watch out for you but do not provide the rescue drugs people normally take.  

researchmonkey,   I was OK during the first month I think, maybe nausea, the tirednes, weakness, creeps up on you.  I got acupressure wrist bracelets for the nausea, and occasionally I just throw up which helps.  The weakness is something I just work with.  I could not do a really physical job or one that requires a lot of walking right now.  I am 61 so I wouldn't want that any way.  I want to find a way out of the working world craziness.
time will tell about the 16 weeks, but I would welcome the opportunity to stop.  

I am amazed at how much people deal with going through this treatment, my sides have been minimal it seems and that is more than enough for me.

researchmonkey326 · Answer

Sounds like the same study that I am in for Gilead.  I will have my 4 wk bloodwork next Monday.  I was down to 43 VL by week 2 but I have not seen copies of the results since it was my week off from check-up so I don't know the sensitivity of the test.  I feel really weird and cranky and agitated too - taking Xanax to keep from totally losing it- it barely seems to help.  It was strange yesterday - took shot on Sunday night - yesterday cut my grass, tore up carpeting out of my den, went shopping, did laundry and a few other things.  I was tired after that but I would be tired after that without all of these drugs.  It was almost like I was manic.  Did your fatigue hit you quickly, right away, or did it take a few months?  Hang in there- maybe you will be one of the 16 wk regimens and that would mean you are 3/4 through it!

temmi · Answer

I think this is the same  clinical study I will soon begin. You mean they will not give you Procrit if you need it?

Mary4now · Answer

frijole,   the study does not do rescue drugs, they reduce your ribivarin, so as long as I can function OK we shall see how it goes.  I'm like an old lady ( oh I am an old lady ) i walk a block and I have to sit and rest, 
researchmonkey, hi I'm in Gilead protease and polymerase inhibitor w/ SOC.  I think I got the real drugs I was und at week 1 from 8Mil. VL  I dont push myself, and I feel tired, cranky, wierd, nausea is getting better, hard to eat, I work about 4 to 5 days a week.
babs:  I'm hoping I dont have anymore of a drop of course with the hgb, yeah exactly I get dizzy, breathless, weak, tired.
My next step is the randomized stop treatment at week 16 as long as I stay und.
best wishes ,,,,,, new drugs on the way

babs824 · Answer

hey there congrats. that is great. my hgb was 10.1, 10.2 and 10.3 the entire time. my doc said after the first few months it does not drop below 10 that it probably will not.i never used procrit. i did have a few dizzy spells at work and was kinda weak and breathless tho. hang in there, sounds like things are going the way they should. hugs, babs