Hi Phyllis, I'm sorry I found your post here so late (and sorry that you have been diagnosed B-PLL). Welcome to this forum. I'm one of the B-PLL diagnosed. In answer to your questions
1. re affording Imbruvica, I have insurance so I ask my specialty pharmacy for what coupons they have, and I am aware that if you are on medicare it might work different re availability of coupons and how much out of pocket you have to be before the rest is paid by medicare. Imbruvica was really good for me, I was in the 400K WBC range then it went down slowly but surely.
2. re on meds for life - yes, that's what I was told, and no one really knows what to do with B-PLL except to treat it like it is a high risk CLL (Chronic lymphocytic leukemia) and suggest stem cell transplant (which I chose not to do because the meds are working so well) . You can research what treatments the CLL folks get and likely you'll be recommended something similar by your doctor. I was told I'd be on imbruvica the rest of my life, then got hospitalized with sepsis and was switched to venetoclax 'for the rest of my life'. I also finished rituximab. I'm basically medicating until venetoclax fails, and taking a pill every day is not so bad, but there is constant fatigue. I'd love to be able to stop medicating but since doctors view B-PLL as an aggressive high risk cancer, they are afraid to stop medications and at least my doctor believes it will mount a war and mutate against me if we let up on meds.
3. re blood tests, mine are every other month because my numbers are more stable and near normal range.
4. you didn't ask, but I'll let you know that many blood cancer patients still need to be careful and distance and wear masks if they can't distance even if vaccinated for covid as we still need protection from bacteria, fungi, and the various viruses.

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