transfusions

Just got home from hosp.  As you may know from previous posts, this is not my first trans during this tx.  My third.  had one on the 18 of Aug, 30 of Oct., and yesterday.   I was feeling really bad and decided to stop by my gp's office for my labs.  I was at 7.0 hgb.  had been at 9.1 the week before, and 11.5 the week before.  Mind you, I just transfused on the 30th of Oct.  I feel I am playing catch up with the procrit.  My hepa took me off of it back in July, hence the Aug trans.  Then he put me back on (40,0000( once a wk.  Then we had the procrit recal>>>>>but I could get the epogen 20,000 vials.  So he said to do 20,000 once a wk  ??????? made no sense to me.  So I empoloyed my hematologist to take over managing my anemia.  Everyone seemed to be in agreement.  My hema said "lets go with his recommendation a couple of weeks, if that doesn't work, we will up you back to 40,000.  Well, had to transfuse on Oct. 30.  So after that, he said "lets up it to 40,000"   We did.  but I only took 2 shots and had tanked to 7 and had to transfuse, yet again.  And it was emergency this time.  I could not breathe.    I was admitted into hospital overnite and got 3 units.  I am now at 10.  Not great, but better than 7.   I feel I am playing catch up with the procrit.  My hema says, lets forget the procrit and do regular transfusions your remaining 10 wks.  of tx.  What do you guys think?

Jean

[Trinity4]

What are we going to do with Jean?  Good grief woman, you've been through it.

The truth is procrit can't work if there is nothing to work with so you absolutely had to have the transfusion. I'm not smart enough to know if discontinuing procrit and transfusing is the way to go for the rest of your treatment but I do know Alagirl had many transfusions and after tx had have iron chelation therapy do to iron overload.  You sure don't want that so it may something to discuss with your hemo.

The other thing is I hope your hepa has reduced the ribavirin.  I don't know what dosage you are on but it's been said that anything below 600 mg daily isn't considered really effective.

You'll get through this and I'll bet money the big payoff for all this will be SVR.

Hang tough Jean,

Trin

[eureka254]

Wow, jt, sorry to hear you're having such a hard time of it.  You deserve all the credit in the world for doing what's necessary to get through this treatment.  I'm no professional opinion, but I'm inclined to disagree about forgetting about the procrit altogether and going fully with transfusion, only because somewhere there between August and October, your hgb was at 11+ which would demonstrate to me that procrit WAS working to some degree. Though some people seem 'immune' to procrit, your Aug/Sep results lead me to think that you simply need more than 20-40,000 units a week at your current riba dose. (Has there been any reduction of riba since your anemia?)

My husband also had a couple of transfusions while on 40,000 units of procrit/week (one when he hit 7.1 at wk 24 & another at wk 42), and would probably have had to do more if he hadn't increased procrit to 80,000 a week.  I think there are those who are unresponsive to procrit and have no option, but it seems to me that you're a slow responder to epo like my husband is.  It was a close call this last month with the procrit recall, but he skated through ok, and as soon as it was available again he started back 80,000 a week, and he's managed to avoid another transfusion.  My gut instinct would be to up the procrit for at least a month to see how that does and use transfusion as back up as necessary.

Whatever the course turns out for you jt, I hope it gets easier from this point forward. Wishing you the best. ~eureka

[spectda]

Hi jean-
A lot of people on the forum have taken 60,000 units per week. I also wonder why they don't increase it for you. 40,000 unit every 4-5 days is about 60,000 units a week and many people have been successful with that since it would be my guess that it might sustain you at higher level instead of waiting every 7 days for an injection. Procrit has it's dangers as you know, but the same is true for transfusions.

At the same time I believe your hemo is protecting you from having another crisis so perhaps occasionally the doctor's know more then us! :)

I would still ask the hemo why not increase the procrit. Perhaps it has something to do with weight and size, although I don't see weight based dosing mentioned in the prescribing information for procrit.

You have really been through a tough battle, hopefully you will be done with this disease and tx for good very soon.

Take Care,
Dave

[Diane12855]

I took a course in Immunohematology... blood typing and matching for transfusions.

The thing that makes me nervous about you getting so many blood transfusions is that every time you get transfused, you get the antibodies and antigens of the person's blood that you are recieving. There are antibodies to all kinds of stuff besides just hep c. Each time you get a new transfusion, they have to find blood that matches all of the antibodies and antigens you have in your blood that day, and that transfusion may have others that aren't there at the time. This makes it harder and harder to match you in future transfusions. Your hematologist learned all this stuff early in his training, but since he doesn't have to do the matching, the significance of the problem may have left him over the years. I'd hate to have you get to the point where you really need the blood badly, but they can't find any to match you.

I would beg him to continue the procrit... and increase it like the above posts say... cry if you have to to make him see how important it is to you, but if I were you, I'd fight them giving me all those transfusions with everything in me.

That's my 2 cents worth,
Diane

[jt57]

Thanks all.  Eureka, I was at 11 because I had just had a transfusion.   Yes, my weight is low.  102-106 right now.  I am pushing for the procrit.  I hate the transfusions.  My hema is an oncology hematologist and I really think alot of him, but I HATE getting transfused.  Did not have this problem last tx.  Did have the anemia problem, but never had to transfuse because we never cut the procrit dosage, and when i pitched a fit for the procrit, I got it.  I hope that being back on the 40000 will kick in withing the next week or so. Trinity, my riba was reduced months ago, for this reason.  I am on 800 a day.  I feel my hepa may suggest 600, but I think he is a little mad at me because I kinda kicked him to the curb with my anemia issues and let my hema take control.  But I had to.  Being und at 4 wks, I can't risk not having svr this time. Good point about the antibodies in blood.  I never thought of that.  But my hema graduated from Yale, I would think he would know that?  I don't know.  None of this is an exact science.  I just know Im tired and want to make it through the next 10 wks........

You guys are great