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About

First Name
Barbara

State/Province
CA

Health Interests
Blood disorders, Cancer, Eye disorders

Posts (35)

4 days ago · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

What does it mean "successful" transplants? not showing in the blood test any more? or living over 6 years, the maximum anyone has survived B-PLL so far? I was given 2 bags today.Why? According to the nurse I should bring my lunch on days I am getting 2 bags. Is that all? I'm sorry,I'm really,really tired today.I do believe the way we are being treated has a lot to do with our age difference and how long I have had it. HANG IN THERE!!!

Sat, Mar 9 1:59am · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

I went in on the 5th and again only one bag of blood. There is the possibility the reason has to do with the fact that I was on antibiotics up to that period.We'll see in 2 weeks, if all goes right .It's good that your Doctors are being cautious ,but still trying whatever is possible and correct. I have read that stem cell is not right for B-PLL; so don't even worry. Always check the internet before you start to think either pro or con.My fractured hip is healing very quickly. I can now put my full weight on my left foot,but due to ten years of arthritis ,my right knee is a problem that can't be treated due to the B-PLL.

Mon, Mar 4 1:10pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Venetoclax is used for CLL according to 2 web cites I have checked.

Sat, Feb 23 6:58pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

I'M BACK ! It's amazing what 2 bags of that red stuff will do. My best friend aka caregiver took me in and my boyfriend showed up later. Just before they unplugged me ;I started giggling. My 2 friends did likewise,but to this day we could never figure out why.I guess it has something to do with 2 more weeks of living.

Mon, Feb 18 2:08pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Infusion center closed;I didn't think it was big enough a holiday for that.Tomorrow I will Call them at 9:00 when the appointment center opens,and tell them I refuse to go to ER.I will just sleep all day to stay out of mischief.Maybe due to your youth and short term diagnoses your hospital tried harder. I expect my hospital did all possible too;it was the bone marrow test that tipped the scale.Back in a couple of days, Love to all, Barbara

Sun, Feb 17 12:53am · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

My guess is you are a lot younger than I am,or you have not been diagnosed for as long a period of time (approaching 6 yrs). I was told that an infusion of more than 2 bags at a time would be hard on the heart. My heart,lungs, kidneys are all fine ,but I have reached the point of needing an infusion every 2 weeks.I am going to the Lab tomorrow. It has been close to 3 weeks so I expect my hgb to be 5.??. Someone will call me to come to the ER,but I am never going through that again! I was told I can't have an infusion while on antibiotics which I am. They end Tues. at 9am,but I am not sure I can wait that long. No,the ER would make any difference. I will post again as soon as I know something positive.

Tue, Feb 12 4:39pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Dearest Ann, Are these readings before or shortly after infusions? I wish mine were so good. My last 2/10/19 Platelets112;white cells 3.7 &hgb 7.1 which is considered good for me. I need to be 7.0 or symptomatic before I can get an infusion.I'm still waiting to hear.

Wed, Feb 6 1:44pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Dearest Ann, You seem to be going through a lot more than I have so far. Yes, the expensive drug was imbruvica-stopped after a bone marrow test which confirmed the B-PLL.The hardest part seems to be not being diagnosed until changing Primary doctors. Eccept for needing infusions closer each time,there was no sign of the cancer until the interveinous chemo made it worse. At one time I had given up,but I am only 87and intend to enjoy what time I have left.