Husband's anemia (PRCA) interrupted FCR last f... - CLL Support

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Husband's anemia (PRCA) interrupted FCR last fall; cyclosporin worked until it was discontinued. We're looking into next treatment steps...

LAinNYC profile image
7 Replies

any suggestions or guidance would be much appreciated!

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LAinNYC
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Why was cyclosporin discontinued? Second line treatment I would look at Imbruvica (ibrutinib) as a mono therapy... but you really need to get to a CLL expert...

In NYC... Furman, Rai, Lamanna etc.

LAinNYC profile image
LAinNYC in reply to Cllcanada

Lamanna is his doc, she's been excellent...I think she wanted to see if he could maintain hemoglobin levels w/out the meds...

bkoffman profile image
bkoffmanCLL CURE Hero

Hard to stop cyclosporin used to controlled to auto-immune cytopenias. Recurrence is always a fear. Sometimes a much lower dose can be used if you slowly taper down.

bkoffman profile image
bkoffmanCLL CURE Hero

Lots of options to treat PRCA. Also knocking back the CLL can sometimes reverse the process.

LAinNYC profile image
LAinNYC

We'll talk w/doc next week, looking closer at the small molecule meds rather than more fcr if it can be obtained.

LAinNYC profile image
LAinNYC in reply to LAinNYC

Great news yesterday! Husband's hemoglobin is stabilizing (8.4!), and no transfusion is needed this week. His cyclosporine dose is slowly being increased again, and no CLL treatment is recommended for now, while the PRCA is being treated and his other blood values don't indicate the need for CLL treatment. We're both so relieved, and hope that we'll be able to access Ibrutinib when CLL treatment is again recommended.

AussieNeil profile image
AussieNeilAdministrator in reply to LAinNYC

Thanks for sharing that very welcome news about your husband's improvement. You could do with some good news :)