Mayo Clinic Connect
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.
Liked by peggy1944
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.
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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.
Liked by Justin McClanahan, Kanaaz Pereira, Connect Moderator
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
Liked by Kanaaz Pereira, Connect Moderator
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.
Barbara – Correct. I asked my P.A. the last visit if I could go on Venetoclax (due to promising trials of taking both Venetoclax and Imbruvica or only Venetoclax) but was told they want to keep that or other next step drugs in reserve for when/if the imbruvica fails. I was thinking that if it could get myself to minimal residual disease that it would be good to blast the cancer now with all they got, but the dr and the specialist both were talking about plan A, plan B etc.and to keep treatment next steps in reserve. So for me, Venetoclax would be what I would ask for next since I have the 17p deletion. I don't want to have the stem cell transplant. For me I'll do anything before that – it's too scary to have bone marrow killed and then someone else's put in, Seems that the average is 60% success rate, so I'd have to save that as the last option The leukemia and lymphoma society page for B-PLL still says "While ibrutinib and idelalisib have not currently been FDA approved to treat B-PLL, they have been approved to treat other B-cell malignancies." But I'm already on Imbruvica now for a year and 4 months. They need to update pages and we need to push for drugs since we're not numerous enough to have our own clinical trials for B-PLL. In some clinical trials it seems we are allowed in with other conditions like CLL/SLL (I go to clincialtrials dot gov ). I already know that I'd not consider a clinical trial using fludarabine plus other drugs (it didn't work at all for me when dr's tried it on me)
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.
Barbara – I never heard that stem cell treatments aren't right for B-Pll. That's interesting. If you remember the author I'd like to look that up and why they said that so I can bring it up if transplant is suggested to me again. I went to a specialist at UCSD that wanted to sign me up for transplant just about 5-6 months of being on imbruvica, and not wanting to give that drug a chance. Reason: He said that if I go into remission it wouldn't last long. He specialized in transplants so I kinda knew he'd recommend that for treatment, but it really scared me. I think his strategy was to increase chances of success of the transplant while I was relatively strong instead of waiting for the imbruvica to fail. I go for blood tests every 8 weeks now (I used to go every week for the longest time, then slowly got the visits farther apart to 2 weeks, to 3 weeks etc.) I next go in again in a couple weeks and will ask if I can stretch out the visit yet again – if they let me. I know I needed close monitoring in the beginning, and if safe I'd like to put more weeks in between visits. Imbruvica is a relatively new drug – maybe I can be on it for years like the CLL people?
I think I found that article about stem cell transplants – from American Society of Hematology 's page called "Hematology, the education program",and the article was called Management of prolymphocytic leukemia by author Claire Dearden .
"In B-PLL, there are a number of case reports of successful transplants, although inevitably case reports are misleading because they fail to highlight the number of unsuccessful cases. Kalaycio et al report on 11 cases of B-PLL with a median follow-up of 13 months. At 1 year, Progression Free Survival was 33% and Transplant Related Mortality was 28%,…" (they don't say what happened with the other 39% of transplants so i assume they continued struggling with B-Pll and other treatments).
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!!!
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