rescue drug info

Hi,
  I thought I read somewhere about getting free procrit, if one qualifies, but can't remember where.  
Anyone who is using rescue drugs, can you tell me when you or your MD decided that you needed it and for how long you took it. How'd you feel. My doctor mentioned being overly exhuasted but everything seems to do that to me.  My platelet and wbc levels are already low so I guess this is one more thing I need to know about.  Any info. is as always, greatly appreciated.

[LindyK]

I did talk to my doc about rescue drugs.  He told me Procrit would be prescribed if RBC dropped to between 10 - 11.  I'm not sure about how long one would take it.  He did make a comment about how expensive it was, but it is on my HMO's formulary but requires prior approval from the insurance company.

Linda

[illona]

I am 39/48. I am taking procrit since week 8 . once a week. I took my first shot when my HGb was 10.

[illona]

for a low platelet and wbc you need the Neupedgen. I got my, when my WBC was below 2. I took 3 shots in a week and my whites went up pretty fast.

[Lady E]

My platelets are starting to go back up..they are now at 62. I was down in the low 50's right after starting treatment. My WBC is abnormal at 2.2. My doctor hasn't given me any rescue drugs as of yet.
I guess the aggressive docs don't worry about platelet counts unless they go down below 30.  AT this point I don't think there is anything we are going to do regarding the low WBC, but I was told to wash my hands very often, and stay out of crowds for the time being because of germs.
-E

[settecasi1]

How did the Neupedgen effect you SX wise?
Did you get any skin problems from the low Neupedgen?

[painterlady13]

I have been on Procrit since week 4 and on neupogen since week 7, And the doc just called on friday and has ordered a second shot per week of the neupogen as my ANC has continually been at .7 and .8  I have been asking them about that for the last six weeks, finally they did something.  My understanding about the neupogen is that it has mild bone pain which I have had, But neulasta (same thing but stronger) Has pretty severe bone pain.
Also be in charge or commitment to care has a toll free # for free procrit when needed.

[NYgirl]

Hemo dropped from 15+ to 9 in just over a week.  Doctor put me on Epogen once a week and the 9 fluctuated only a little bit. Then he upped it to twice a week and it went up pretty quickly.

I've been on since about week 3 and am on week 63 this Friday.

It helped me like MAGIC. I could not have continued treatment without it.  Now I'm on once a week and have held at about 10.5 - 11 for the past year.  While 10 at one time seemed INTOLERABLE...once your body gets used to functioning at that number it's really OK.

It's not just WHAT the number is but other factors as well that determines the course of treatment.

While I sure would love to be a 12 or something...as long as I'm not fainting dead away like I was that first week of Epo...I'm ok and won't complain.

[friole]

Neupogen and Procrit sources
Amgen, Inc.
Contact: Amgen Safety Net Programs
Medical Technology Hotlines:
1-800-272-9376 (202-637-6698 in Washington, D.C.)
Drugs Available:

[GrandOak]

I was on Procrit for 9 of the 10 months at which I tried tx.  I was put on it immediately after switching docs because my Hgb was only 10.6 two weeks after having Riba dosage cut in half. My Hgb dropped from 13.5 to 9.8 in first three weeks of tx and first doc simply cut Riba dosage to 600 from 1200 mg/day instead of prescribing Procrit.

Throughout rest of tx, I increased dosages of both Procrit and Riba until I attained a Riba dosage of 1400 mg/day for 12 wks and was on 100,000 U/sq of Procrit.  After reaching 1400 we adjusted the frequency of injections trying to keep Hgb above 10 until I was doing 3 injections per week maintaining the 100,000 U of Procrit per week dosage (i.e. 2 injections of 30,000 and 1 of 40,000).

Overall, I felt fine and less fatigued so long as Hgb was up, but since I was hovering between 9 and mid 10 for most of tx, it got to the point were feeling like **** felt normal.  Within days of being yanked from tx for being a nonresponder, I had more energy than I recalled having in many moons.

In fact one week after halting meds, I was able to work for 3-4 ours at hard physical labor hefting and splitting stumps without getting winded or exhausted when at the end I often could not even climb a short set of stairs without having to stop and catch my breath and climbing them to the second floor of a building left me ready to drop because of fatigue.  Surprisingly, I did not realize this change until the next morning as I felt the ache from muscles which had not been used much for nearly 10 months and were obviously extremely sore.

Now 3 weeks later I have more energy, am looking better, and feeling nearly as good as I did prior to beginning tx nearly a year ago.  But that's what I see as the insidiousy of this disease in that you do not feel it's effects upon your body until it's too late and that the tx which is supposed to be helping you can make you feel like the end is drawing near.

[orphanedhawk]

Thanks for the contact info. I'm trying to gather as much info. as I can without overwhelming myself, prior to tx.