on Procrit so quickly?

[painterlady13]

ok I just talked to my CC at the Specialist's office, after shot 2 my RBC went from 13.9 to 11 she is not waiting for it to go down to 10 but because it was more than a 2 pt drop they called it in right away.  Although I am glad they are not waiting, I am just curious as I haven't heard of someone being put on it so quickly, or at least of a drop that quickly into treatment.  Friday was shot 3 so at this point not even 21 days into treatment.  

I had to laugh as I told her that I already knew why she was putting me on the procrit (the 3 pt drop) and told her it was because of this forum that I knew about it. she laughed and said I could almost work in their office and tell pts about TX'ing.  I would never have had as much info without you guys Thank You.

[friole]

Since we are on Procrit here, I thought I would throw in a comment or two.  Congrats, Painterlady - I think your doc has done exactly the right thing.

I used Procrit from about week 11 or 12, finished last week (at week 56) and will probably do my last Procrit on Thursday.  I chatted with the hemotologist about any known long-term side effects from Procrit (and Neupogen) and she said - nope - there aren't any.  I said what about being anemic for over a year?  She said the recovery should be fine.  She said many chemo patients are on treatment for years and years - some 6 years - and they do okay - so one year is acceptable.

She  did say sometimes the bloodcounts never do rebound as high as they were.  She was talking specifically about the white blood cell count - mine has been lingering at about 1.5 for a long time - and said it may only go up to 2.2 or something -(mine started at 5.0) but she sadi that was okay too- that that is enough.  

When I had my CBC on Monday my hgb was 11.5.  I had been off of Riba only 3 days, and that is the highest my hgb has been since June 5th. I am encouraged about rebounding.

good luck painter, I feel this will help pyou go the distance.
kathy

[painterlady13]

OMG yes I can't seem to get very far at all, and after I sit down I still feel like I can't get my breath for a min or two and lightheaded.  I really was beginning to believe I was going nutz as I couldn't even walk very far and that is just not me at all.  I was always very active and never had a problem with energy.  I am going to have to really push my request to be moved to another dept at work.  I know that there is no way at least for a while that I can stand for 2 hours.

[NYgirl]

I had a full SIX point drop (in 10 days) before they put me on it...you don't realize how LUCKY you are to be on at 11 - when that is pretty NORMAL my doctors would never, ever allow it.

Now that I've had to drop from 2x a week (at Dr. Js orders) I am curious to see if reducing the riba (after 46 weeks of course, no early reduct here) will make the difference and I can get back up to 10 or 11.

You're very lucky. I don't know why they don't let us too early (except it's one badazz drug that can cause problems of it's own I understand...but when you have a rapid big drop...it feels worth the risk).

[52TELE]

so your legs are feeling a little wobbily? .I dropped from 16 to 11.8 in three weeks.I was out-of-gas . within three weeks the procrit was kicking in nicely and I started feeling better. Like your's , my doc didn't wait until I was in crises before getting the meds approved. It will get better.

[mikesimon]

Your people are on top of things. I'd be very pleased with this fast action. Mike

[painterlady13]

I was blown away when my CC called me back and said that they are getting me the procrit asap.  being that it was a 3 pt drop is why they did it so fast but yes I am amazed that they do act so fast but the way I feel I guess I need it.  I can hardly get 30 ft from the couch to the kitchen without being out of breath and exhausted.  LOL forget work today.  

I do wonder if there is anything I can be eating to assist me also in feeling better? MedMark says that I won't get it till wed or thurs.  Anything to feel even a little better now would help... Thanks

[sfbaygirl]

Are you starting to feel like Ms. Munster? All white? I couldn't walk down the stairs without stopping in the middle to catch my breath. My house is big, so it took two stops to get to the kitchen! Mine dropped from 16 to 11 in a few weeks time and I got an imediate shot of Aranesp from my Hemo dr. He gives me the shots if I need them. It took at least 2 weeks to begin feeling better, then it's like a miracle! Now I don't need them as my Hgb is normal. Hope it stays this way.

[GrandOak]

Sounds like you may be in very good hands being that they acknowledge that it's the rate of drop not the actual count which should be used in determining if Procrit should be added.  Especially since it takes anywhere from 2-6 weeks, depending upon the individual, to fully kick and become effective.  Which makes waiting for a magic threshold becomes dangerous because if it fails too quickly into the anemia red zone, it may be to late to administer Procrit w/o reducing Riba.

[cuteus]

you have a great treating team, painter! I am happy for you.
Running a marathon should be ok in about three wks!

[Pauly Boy]

Second week I went from a 13.8? down to 10.6? ( it was more than a three point drop) on my third week. Like you, I went in and spoke about the issue including what I brought from here. Everyone agreed, since the one week drop was so drastic that it made sense to start procrit ASAP. They ordered it the next day and a day later( before my fourth shot) I was on the "Procrit Road to Heaven". My docs had the same response about all the info I picked up from my "peeps" on the MB. They said most of the info was right on and by the way: What's the Web site you go to? Usually they benchmark HMGB at 10.0 but when you go down so quick, they react to that news. A little pressure with some knowledge to back it up allowed me to speak intelligently with the about this issue. You guys are SUPER!!!
Oh, the good news is that it stopped the labs downfall and relieved some of the sx ( breathlessness). You're right on, lady, keep killin' those bugs!!!   Pauly

[Kalio1]

Mine has dropped 2 points quickly at times and then evened out again gone up a bit then back down some. I know for others it drops and keeps going down too. When mine dropped my doc wanted to "keep a close eye" but he is not one to jump in and start up Procrit and wanted me to hang in there and see how the numbers did. He says it has its "own complications" and so far, I have not had any. Ive had a real hard time with anemia too off and on mostly on, so the QOL issue is an issue in and of itself as you are acutely aware of Im sure. I am a bit hesitant to start up more drugs if I can avoid it and my doc was right it does fluctuate and go back and forth. Mine has always stayed at 10 or above too. I do not have to go to work everyday and if I did I imagine I would be taking it. I hear from most that the Procrit helps a lot. Hope you arent feeling too teriible today.