change of plans...

I was supposed to start the Rituxan tomorrow. I went in this morning for a CBC and my platelet count is only 1. Going for another platelet transfusion in the moring. They cancelled the Rituxan and I am going to start NPlate instead. Not sure when that will be though because they have to register me with the company that makes it.
I'm more than glad to not have to do the Rituxan, wasn't looking forward to the length of the transfusion and the length of time to see what it would do! I've just about researched myself out about it!
Time to start the same with NPlate!

A platelet transfusion? Just what is that supposed to do while you wait for NPlate? What about IVIG or Win-Rho or Dex - something that will last more than a few hours?

I'm hearing the wackiest things lately. Sorry.

well Sandi, I just don't know! Thank you for bringing it up though! It's still so new to me. I didn't even know that was an option. Ugh. I will ask tomorrow.

It just seems strange to do a platelet transfusion since it won't last. They send you home with a count of 1, okay fine, then tell you to come back and get a transfusion that will probably lead to a count of 1 again tomorrow night...then what? It's such a short term solution that it's not even worth the effort. If you had bleeding, head, GI, etc. I could see that on an emergency basis, but something doesn't seem right with this, especially since you don't know when you'll start NPlate.

We were told a platelet transfusion would be used only in a bleeding emergency, as an ITP patient would chop up donor platelets as quickly as she chops up her own. Additionally, we were told there may be a risk of overloading the spleen with a platelet transfusion, as a result of all those chopped up donor platelets. And, as has been pointed out on this forum a few times, transfusion reaction risk is said to increase with each transfusion. I don't understand why IVIG or steroids aren't being used for a quick increase if that's the goal. I'd ask some questions. It's your health.
Norma

thank you for the input. I will be asking questions this morning. The prednisone isn't working at all for me, I'm tapering off it and can't wait!

I hate transfusions! My mouth tastes and feels nasty. The Benedryl kicks my butt and I'm grumpy! This too shall pass...right? I asked about the constant transfusions. The nurse assured me that it would take many...many for any complications to occur. We'll see. I'm not sure when I'll start the NPlate. Maybe this Friday, if not then next. I'm going to extent my LOA. I'm not comfortable going to work with such a low count, and I get tired just doing stuff around the house! I can't imagine anywhere from 4 to 8 hours on my feet at a time!

Server:

I'm not liking the information and treatments you are receiving. There is no truth to the statement that it "would take many transfusions for a problem to occur". That's not even the point here. Transfusions are pointless as a treatment. May I suggest a second opinion?

Well, I'm not far from wondering that myself. I'm not sure they are using the transfusions as treatment. Just a carry over until the rituxan (now NPlate) starts. He wanted to give the prednisone a full month to see if it would work. I'm not sure about the doc and his commitment to my treatment though. I'm getting the feeling that he is just treating me at all because I'm a source of income for him. I've only seen him 2X. Is that "normal" in this kind of situation? I dunno. He does have his main office in a different city and only comes to this hospital once a month. One of the nurses told me this morning that she had to argue with him about giving my the rituxan. She told him that she thought that was wrong and he should do NPlate instead. My count was down to 1 and he changed his mind and is doing NPlate now instead. I dunno. Maybe I should get more opinions from the nurses about what kind of doctor they think he is.
Thank you for you input Sandi. You do help.

btw...you can call me gretchen!

Hi Gretchen

I think that the point is that a platelet transfuction ISN'T going to see you through to this Friday never mind next Friday. Your body will destroy donated platelets just as quick as it destroys your own. They will probably be gone tomorrow and you will be back down to wherever. And you will have taken all the risks of a blood product for no benefit. You need a more effective temporary treatment like IvIg or winrho.

I agree with Sandi - you need a new doctor!

Ali

Gretchen:

I wouldn't worry about how often you see him - I only saw my hemo twice a year no matter what, but I still had counts done and had phone discussions about treatments. Treatment plans can be handled without an appointment, but I don't think the transfusions are the right way to go.