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Waldenstroms and amyloidosis

Blood Cancers & Disorders | Last Active: Apr 28 8:35pm | Replies (72)

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@loribmt

I’m really curious why your husband is so reluctant to continue with treatment for his blood cancer. I know you’re both upset that he is now immunocompromised from the Rituximab. But the fact of the matter is, his blood cancer puts him into that category already. So if it’s suggested, wouldn’t it be better to continue with a treatment such as Rituximab, which inhibits the overly active B cells in his body and prevents any further progression of his disease. It wouldn’t add to his compromised immunity but potentially increases his prognosis as opposed to doing nothing.

Living with a compromised immune system doesn’t have to be disruptive. It’s a shock initially, of course, because there’s a change in our normalcy. But it’s mostly a matter of just being mindful when we’re out in the world. It shouldn’t impact the ability to enjoy and live life to its fullest. I’m one of those people and it hasn’t slowed me down one little bit.

What concerns does your husband have over continuing with treatment?

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Replies to "I’m really curious why your husband is so reluctant to continue with treatment for his blood..."

After receiving a chemo treatment last February, he had an infusion reaction that required a 3 day hospitalization
He then relevantly accepted Rituxan x 6 He did fairly well with a slight reaction following the first , but experienced fatigue
He is not convinced that he required any treatment, and never told about the B cell depletion resulting from Rituxan , especially during the pandemic
Consulted with another oncologist/ hematologist and was told he could just be monitored
He has wild type cardiac amyloidosis with a small component of AL and is in persistent AFib
Sometimes less is best