Double platelet transfusions

[magpie75]

Hello everyone. I have been transfusion dependent for 20 months. Recently my local hematologist has been ordering up two units of platelets whenever my platelets drop below 10,000 which is every 7-10 days. He started doing this about 3 months ago. As far as I can tell, the transfused platelets don't last any longer if I get one unit or two. Therefore, I think getting two units is unneccessary and may lead to more chances of having a reaction, etc. Do you agree with this? If so, how should I tell my doctor that I'd rather get just one unit per transfusion date. I am seeing him on Tuesday and want to discuss this with him then.

Please let me know if you have any ideas. Thank you,
Maggie

[Marlene]

Hi Maggie,

Looks like your are on John's recovery schedule! I think you're correct about this. Unless you are having ongoing, active bleeding and he's trying to get your platelet above 50K then I'm not sure why he's giving you two units. Does he have a post platelet transfusion goal that he's trying to get you to? When John was in the hospital at Hopkins, he had a 50K platelet goal because is bladder was bleeding alot. To achieve this, they transfused him matched platelets almost daily.

I would ask him what he is trying to accomplish with giving you two units and if it's not working, tell him you want to try going back down to one unit. Because I think you are correct in that the platelets are short lived no matter how many you get....one bag lasts as long two over that 10 period.

Something else to considered.....John was on the every 7-10 day schedule when his platelet goal was 10k. We finally decided that we needed to see how low he could drop without bleeding and found he bottomed out at 8K without problems and so he stopped all platelet transfuions. Generally, they have found that AA patients can go as low 5K without bleeding issues. So as long as he didn't go below 6K and did not have nose bleeds, etc, he did not transfuse platelets. A bit risky but it was nice to stop the platelet transfusions.


Marlene

[magpie75]

Marlene,
thanks for your reply. I am going to discuss this with my doctor tomorrow.
Currently my platelets drop to anywhere from 10,000 to 1,000 before I get transfused. So at this time I'm not stabilizing. Usually the count is around 6 or 7 when I get the transfusion. I don't like to let it get so low as 1, because then I do have bleeding gums, much petechia and some headaches.

How many months was John into post-hi-cy when he stopped needing platelet transfusions? Did this occur before or after he became rbc transfusion free? As you can tell, I'm getting tired of waiting. But I have been seeing some small improvements in length of time between transfusions.

[Marlene]

Maggie,

John required platelets for 20 mos post treatment. He stopped when he was stable at around 8K. He was red cell transfusion dependent for 22 months post treatment.

Are you still taking neupogen?

It is tiresome.........

Marlene

[magpie75]

I am still taking neupogen. I tried to get off completely last year and my anc dropped very low, so I restarted. Now I am taking it 1X per week but sometimes my anc still drops pretty low, to about .300. If it gets that low, I usually take a second shot per week to build it back up. My local doctor usually goes along with whatever I want to do. But I have to talk to Dr. Brodsky to get a recommedation of what to do. Between the two of them, I feel like I'm just floundering along with no clear plan. Perhaps I should go off the neupogen and this time just wait and see if my white count will drop all the way down and then start working on it's own. I get nervous when it goes down below .500. That's my problem with that plan. I'm seeing Dr. Brodsky in Februay. I'll talk to him then and see what he has to say.

[Marlene]

....and I do understand how you feel. Your recovery is pretty much on you because they really have little to offer other than "support" with growth factors, blood product, etc....The body has an amazing ability to heal. The challenge is to figure out what it is you need to restore your health. We have found that they have little to offer in that aspect of your recovery.

So one thing comes to mind......Have you tried stopping the Exjade for a while to see if it may be suppressing your white count? It's worth testing this out if you haven't already.

BTW...John started a progam last month of acupuncture and TCM herbs. We know he had some ongoing inflammation as well as some hormone issues. He's had improvements in his energy level and the inflammation is down. At some point we'll recheck the testosterone levels and see if he needs to do hormone replacement therapy.

Take care and let us know how your appointment went.

Marlene