When to start transfusions?

[Leah]

Hello,
My Dad was diagnosed with MDS in January 2007. He started EPO about six months ago and responded so well that they cut it back to every other week.

Now his RBC counts are down and they want to give him a transfusion.

He says he felt better and more energetic last week than he has in a long time.

What I want to know is, is it a good idea for him to refuse the transfusion? is there a cut off level when transfusions are neccessary, even if you're feeling well? And shouldn't they try increasing the frequency of the EPO injections first?

Thanks for any informaton you might have.

Leah

[Lisa V]

Leah, when my husband was getting transfusions they used Hgb at 8.0 as a cut-off point. Ken never really felt the effects of low Hgb that strongly, but his doctor warned that anything lower than 8.0 puts too much strain on the heart and can cause other problems. Some people feel really tired at higher levels and may use a higher target for that reason.

If the EPO was working before, it seems logical to me to try increasing either the dosage or the frequency before resorting to transfusion. Often EPO drugs do stop working after a while, though. I would ask his doctor if he/she thinks that is the case, and if so, why?

[Leah]

Thanks for the advice, Lisa.

I went with him to his appointment and it was much more reasonable than I expected from the message they left.

They are basing their treatment more on how he is feeling than on the numbers at this point, so not only are they not going to start transfusions, but they are goign to stop EPO and watch for a while to see how his numbers look (He says EPO makes him feel MORE tired). Hopefully he will feel okay, but if not we are looking at more EPO first and transfusions later on down the road. My Dad is happy about it, so I am happy about it.

Thanks again!