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

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.

Barbara, These are my readings after the hospital stay w/infusions, and after when I started on Imbruvica 11/2017. My progress has been slow but steady on imbruvica. I think the most important numbers after getting platelets back was looking at absolute lymphocytes numbers. I didn't understand when I was told I was in "remission", I guess they were telling me to be happy with some of my numbers and the other numbers like WBC are not so important. I'm still learning.

Here is my list of where the numbers should be so that I could compare with what they said my numbers were:
absolute lymphocytes normal is 600-4100 (I was at 3900 last November - good enough)
hemoglobin should be 11.3 -15 (I think they said at a 8 or below to get infusion?? I'm at 13.9 as of January so I'm good)
platelets should be 150-400 (mine is 'low' at 136 in January but close enough not to worry)
Beta-2 microglobulin (B2M) is 2.5 for normal. (indicates production or destruction of white blood cells, mine has been in the 3's lately)
LDH is 250 for normal (sign of tissue damage, mine was 265, close enough)

I'm not sure how they decide blood transfusions at hospitals. I had a discussion at the transfusion center I went to with a nurse there saying they could do it at an 8 or below but something about doctors being reluctant? I don't know. But if an 8 or below qualifies, and I'm not wrong about the number, then it is a matter of the patient pushing for it. Having a 7 and no infusions sounds too low to my non-doctor mind. Maybe I'm wrong but I really thought it was supposed to be 8 or below to trigger infusion.

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.

Barbara - I was first diagnosed October 2017. I'm 53. I had most of the transfusions during a hospital stay that lasted a week and a half and there were six bags total over the week and a half stay, In the hospital I was hooked up frequently to IV lines for mediations and hydration also and they took blood samples every day. Then after I got out of the hospital, it was 2 bags in each of the next 2 months (a one day hospital check in sitting in the infusion center armchairs). Once my red blood numbers were better I didn't have to do that again. Mostly i hated the 'hydration' IV that they also hooked up because the retention/swelling of what they pumped in lasted too long.

Your situation sounds very scary to me, and blood number very low. I hope you can get the infusion you need asap!

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

Barbara I wish you success and hope the doctors listen to you. I had a good dr that said he wasn't going to give up on me when I was first hospitalized. .

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.

Barbara - so happy to read that you got the infusion. It truly does give joy when you realize you feel better and have 'good' days to look forward to

Barbara, I'm glad you got the infusion, do you think you would eventually consider getting onto another mediation like Venetoclax? That seems to be the latest and greatest next one. It's very hard to have a normal day with fatigue so it's understandable you'd be so happy after the infusion

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