Procrit experiences

I've been very frustrated with Procrit.  You aren't given it until your HGB drops below 10.  Then you take a weekly shot for 4-5 weeks and low and behold you suddenly feel like a human being again  Lasts about 10 days, but since you are above 10, they tell you not to use the procrit and the effect is lost.  Back to feeling crummy.  I finally asked the nurse why it was used such a goofy way?  Takes 4-5 weeks to work, works briefly, then you wait to dive down to 10 again and start the shots again.  In a nutshell, it takes 5 weeks of shots, feeling bad, then 2 good weeks, then another 4-5 weeks of feeling down to start another 4-5 weeks of shots to feel good for 10 days.  So 2 months feeling lousy, 2 weeks good, 2 months lousy, 2 weeks good.

Nurse said that FDA does not give Procrit labeling to treat anemia due to drug side effects, only to treat specific blood diseases, thus the up & down.  Maybe other docs are looser with their prescribing of Procrit, but I'm in a study and they stick with the rules.  How do you go about changing bad FDA guidelines?

[merryBe]

it's all BS  what your nurse said. The real truth is two fold, A. trials try to see how the meds alone will solve without other drugs to get accurate reads on side effevts and
B. the blood builder are very expensive so no way do they want to make them protocol for anything they aren't already protocol for. My procrit runs 6K a month alone.

The way procrit is normally prescribed is constant, every week because the chemo is killing cells every week,  However everyone responds differently, I suppose if you really went back up a lot, they might cut your dose, but 2 on and 2 off I've never heard of before.

With standard chemo therapy the drops in red and white counts are enormous and using rescue drugs has become the gold standard. Yet HCV people can have similar drops and are often left out in the cold because it hasn't become SOC.

The best solution might be letters to doctors and FDA insisting this change.
My insurance picked up the cost, but many people are denied and it's not a fair system at all. If you are on chemo, and become immobil because of the anemia, as I have, this can cause other worse problems.

I fluctuate each week between 10 and 11.5 and they have NEVER said to me now that you are above 10 stop taking it.
The best solution would be to let every doctor go with a 10 HGB for a month...then we'd see some real changes!!! They are the people that can lobby for changes in the SOC regimes.

Right now however, even if not in a trial, HCV chemo patients are being discriminated against. Any other disease or cancer, with similar blood work, and approval would be standard, but for HCV they hold back. Partially they fear that approval of one will lead to having to supply everyone, and since there are SEVEN times more HCV patients than HIV, that means tx costs would skyrocket. People could end up on epo, neupo ans SOC and that mean 15-20K a month per person...with only 50% reaching SVR in the states (type1's) that is mighty spendy and INS. and Drug companies aren't looking to absob those costs.

Don't get me wrong, they know the practice of denying these drugs is discriminatory but, It's like asking the tobacco company to do the right thing...they've gotten away with not doing it, and made millions...why would they change.

I remember one nurse telling me why she quit the practice (a diebetic (diabetic) clinic)...the reason was because it was easier to get an approval for an amputation than to get someone approved for insulin. It was all money driven, insulin was an expensive and lifetime need product...they would stall patients for months....but if it resulted in an amputation being needed, then no problem.

I know in trials they are hoping for drugs that won't destroy the blood so much...but the problem is, the current SOC and trial drugs all do so far...and they should not leave their patients gasping for air like fish out of water....thats cruelty when it is preventable.. no
matter how you slice it.

mb

Unless the HCV community gets busy advocating at the state and federal levels I don't see this changing any time soon.

[CMcH]

I always thought it was silly to wait too long to give the shot. I felt the same way as you that it takes weeks to take effect and my counts always went down.

[newleaf09]

Procrit is supplied by the study.  My insurance covers my neulasta.  I worry about the others in the study who don't have insurance.  I think you are probably right about about costs affecting when procrit is given, just don't want to let my paranoia flare up.

'The best solution would be to let every doctor go with a 10 HGB for a month...then we'd see some real changes!!! They are the people that can lobby for changes in the SOC regimes.'

I feel exactly the same way about liver biopsies and doctors.  Try sticking a corkscrew in your own liver before you try to make it seem like nothing to me.

[jmjm530]

I've been very frustrated with Procrit.  You aren't given it until your HGB drops below 10.  Then you take a weekly shot for 4-5 weeks and low and behold you suddenly feel like a human being again  Lasts about 10 days, but since you are above 10, they tell you not to use the procrit and the effect is lost.  Back to feeling crummy.  I finally asked the nurse why it was used such a goofy way?  
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In short because your medical team is using a goofy intervention protocol.

A more competent treatment team will not rely solely on the absolute hgb number but will factor in drop from pre-tx baseline, rate of drop, and very important what are you symptons. Same with stopping, it should not be by the numbers alone unless your hgb for some reason bounces up to what they would consider a dangerous range but certainly hgb 10.1 hardly qualifies for that.

Not sure how pleased you are with the rest of your treatment program, but the option always exists to interview another doctor, and specifically a liver specialist (hepatologist) as opposed to a gastro. While nothing surprises me any more, I would be surprised if you're currently treating under a hepatologist.

-- Jim

[jdwithhcv]

I had the same experience at first.  Took 4-5 weekly shots, got hgb above 10 and stopped the procrit.  When the hgb tanked again 2 weeks later my doctor said to go back on procrit for the duration.  I had no trouble getting the insurance to cover the procrit and she did not hesitate to prescribe it.  

[GreatBird]

I'm being given Procrit on a clinical trial. My understanding is that the upper limit is 12.0, and the lower is 10.0, and they want to keep you somewhere in the middle. So, eventually they want to find how much will do that without the big swings. So far, we haven't figured that out with me yet, but we're working on it.

[GreatBird]

I really shouldn't post when I'm tired. The clinical trial is for one of the PIs (not the procrit) which I am taking along with SOC.

[IMstacie]

The best solution would be to let every doctor go with a 10 HGB for a month...then we'd see some real changes!!!    Isn't that the truth.    My GI told my husband all you get is a little tired.  I was so sick the first 12 weeks I thought I was going to die.  I would like to hold him down and feed him some Riba!

BTW, I'm still waiting for my procrit authorization since my hb dropped to 9.1 a couple a weeks ago. I used to be a fast walker. I walk sooooooo slow now!