Blood Transfusions 2xs a week

[Kimmie12]

My name is Kimmie. I’m 58 yo. I was first DX with AML Leukemia March 15 2015. I had high dose chemo and was in remission by September 2015

I relapsed in October 2016 and had to have a bone marrow transplant only after another round of high dose chemo. BMT was March 21, 2017. I relapsed one more time and was put on low dose chemo and had a DLI November 2017.

Chemo caused a lot of infections. Hospitalized 20xs over the course of 3 years

Today I can say I am cancer free. But I’m needing no less than 2 blood transfusions a week and Platlets no less than once a week. Now I’ve built up 5 antibodies and now the infusion center is having trouble finding me blood. I will say my WBC is holding fairly steady

Anybody have any questions I can take to my ONC this Thursday? Any ideas what’s happening? I was told by ONC nurse at some point I could lose my life.

[Neil Cuadra]

Kimmie,

You must have lost count of how many days you've been hospitalized. Being cancer-free is great, but I'm sorry to hear that they can't keep your blood counts up.

As you probably know, when you build up antibodies that prevent transfusions from being effective it's called being refractory to transfusions due to alloimmunization. There are lots of articles about this, especially for platelet refractoriness.

When this occurs, from what I've read, a blood bank may use HLA antigen tests, or consult a database of previous test results, to try to identify a specific donor whose blood or platelets will be compatible with you. The blood bank may also ask for matched blood or platelets from another blood bank, like the Red Cross or another hospital.

If a specific matched donor is found, that donor may be informed that there's a specific patient who needs their blood or platelets, and asked to come in on a schedule that's for your benefit. My sister is one such donor. She receives calls to donate platelets for a specific (anonymous) patient.

I suggest that you ask if this kind of effort is being made on your behalf.