Relapse after lenalidomide with folate deficiency and heart failure

[Nancy Byham]

Husband relapsed after 18 month remission in January . He’s 5q deletion . He was hospitalized with testicular infection, kidney failure 3 months ago. He’s currently folate deficient( he’s never had a problem-very clean diet)he just completed 2nd round of chemotherapy with negative results. he’s also gained 42 pounds in a 6 week period- edema from hips down and now hands. I know it’s heart failure. He’s sleeping 18-20 hours a day. I know treatment is symptom oriented. It’s tough juggling urologist, oncologist and cardiologist. I never know how I’ll find him. I lost my mom 9 months ago and now this is extremely overwhelming. Anyone with similar experience??

[Janet]

Nancy:I hope you are managing to get some rest through this tough time. I would like to suggest you pose the same question on Mayo Clinic’s Blood Cancer support group. There are a lot of caregivers there, and someone will surely respond quickly.
https://connect.mayoclinic.org/group/blood-cancers-disorders/?utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=digest&utm_content=summary_interest

[Nancy Byham]

Update: now cardiologist put him on lasix as he gained 8 pounds in 3 days. Found an arrhythmia- plus his jugular was jumping out of his neck so now blood thinners? Like he can hit his arm and it’s black from bruising. His red cells are affected. I don’t understand the reasoning. Plus cardiologist wants a nephrologist brought on board as very aggressive kidney cancer on paternal side. He has an echo Monday , oncologist tomorrow-to check heart damage. And check folic levels.

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