Does anyone have B-cell prolymphocytic leukemia (B-PLL)?

Posted by bflattenor @bflattenor, Aug 6, 2018

Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.

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The infusions seem to give me only 2 weeks in between.None of the medications have worked at all as far as I can tell;so I stopped them all.I'm very grateful to the donors who have given me the 2 weeks,but it's hardly worth using it on me.I know I seem sorry for myself and sometime I am,but I'm just very,very tired.Thank you for your concern.

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@bflattenor

The infusions seem to give me only 2 weeks in between.None of the medications have worked at all as far as I can tell;so I stopped them all.I'm very grateful to the donors who have given me the 2 weeks,but it's hardly worth using it on me.I know I seem sorry for myself and sometime I am,but I'm just very,very tired.Thank you for your concern.

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I had my last appointment today. The Oncologist will just call me on the phone. I still receive an infusion every other week.It will get closer until it can no longer be done. Here's a question for you. If I am so full of other people's blood,why has it not changed my DNA?...or has it? Just keeping up what's left of my sense of humor.

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@bflattenor

Please,there must be someone else in a place as big as the Mayo Clinic who has at least heard of B-PLL although there does not seem to be anyone else in the hospital where I was getting treatments.If you don't want or can't write about it,just say YES.

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Is this the leukemia that can happen with someone with Systemic Mastocytosis? I am new to all this but was just diagnosed with SM and was curious. If so I have a new friend on FB that has that leukemia.

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@mrshonesty355

Is this the leukemia that can happen with someone with Systemic Mastocytosis? I am new to all this but was just diagnosed with SM and was curious. If so I have a new friend on FB that has that leukemia.

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I'm sorry to disappoint,but maybe we can still be friends.I'm not familiar with SM. I hope it is curable or at least can go into remission. B-PLL is a B cell type where large white cells eat up the red. When treated too many good white cells are destroyed ,and there goes your immune system.B-PLL is extremely rare especially for females. Like you I would love to find someone else with it,or at the most a caregiver who can give me some information.Have you tried the cancer group? Good luck to you!

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This may be my last for a while .I have gotten behind on my infusions due to the holidays.Fortunately some of my grandchildren brought 3 of my greatgrandkids to see me on Christmas Eve. I had a fall Christmas morning,but I did get up by my self;so I assumed I was OK.Never assume anything!I have arrangements for a best friend to take me to ER in the morning.Laptop is not invited.

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@bflattenor

This may be my last for a while .I have gotten behind on my infusions due to the holidays.Fortunately some of my grandchildren brought 3 of my greatgrandkids to see me on Christmas Eve. I had a fall Christmas morning,but I did get up by my self;so I assumed I was OK.Never assume anything!I have arrangements for a best friend to take me to ER in the morning.Laptop is not invited.

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Oh dear, @bflattenor. I’m only reading this message now. I’m so sorry to hear that you had a fall and that you’ve had to go to ER. I’m not sure if you’ll get this message before you leave in the morning. We look forward to hearing from you when you get back. Please post an update when you’re able.

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Back from rehab,but not walking yet.Hip was just fractured,not broken-thank goodness.Now I am finding what it is like to be dependent on others.I have set goals in the past just to keep on living;now my next goal is to be able to walk again.I an also going to enter the hospice program.

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@bflattenor

Back from rehab,but not walking yet.Hip was just fractured,not broken-thank goodness.Now I am finding what it is like to be dependent on others.I have set goals in the past just to keep on living;now my next goal is to be able to walk again.I an also going to enter the hospice program.

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Setting goals is a good thing. I'm sure it must be frustrating and challenging to have to learn to walk again. Are you entering a home hospice program (care at home) or a residential hospice?

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I am trying,but some of the places I called wanted to talk about money before telling what services they offered.I thought the doctor set up hospice.not the patient.They did for my mother and sister.

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I found out Customer Service will help me with that.So far Kaiser has been very good sending a therapist and others to help me.I will have another x-ray on the 30th to tell me if I can walk on my left foot again. That will solve a lot of problems.Did I ever tell you I have a daughter named Colleen?Not nearby.

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