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
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.
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.
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?
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.
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.
Liked by Colleen Young, Connect Director, Jamie Olson
My doctor still insists that I contact Hospice,but when I get this hip healed I figured I wouldn't need them.It seems the infusions I've been getting are considered palliative care,and my days are numbered even thought I am very chipper when I am around others.THIS IS MY LAST BLOG. Love to all.
Liked by Jamie Olson
@bflattenor, it is unfortunate that you may not have known that your infusions were considered palliative care. While this may have been frustrating to learn, it is great that you are chipper around others and I would not want to give that up either. I have had close personal relatives go on hospice care and the experiences were positive. In some cases, hospice care simply meant more one-on-one attention but not being any more isolated than their normal routine. It is my understanding that hospice care can mean different things for each person. You mentioned previously that you were going in for an x-ray on the 30th, did you still have that? I do hope you will continue to update the community as you have been helpful to other members as well.
Liked by Colleen Young, Connect Director
Yes,I did have the x-ray on the 30th,and it showed progress. I can now put some weight on my left foot.I am getting extra attention from my therapists who are encouraging me to snub my nose at hospice and see where it gets me.
Liked by Justin McClanahan
Hi. I was diagnosed B-PLL at the end of 2017. I didn't find any discussion groups for it so I've been hanging out reading HealthUnlocked CLL forum and feeling like I didn't belong in any cancer forums out there. I have 17 deleted and P53 issue also. I'm on imbruvica they say for the rest of my life (or until the imbruvica fails). I was just surfing internet for the mouse study re fasting leptin leukemia then looking at B-lymphocytes info and there you were in my search results somehow ! So hello from another person in this lonely B-PLL club
Liked by Colleen Young, Connect Director, Justin McClanahan
Hello @stature, and welcome to Connect. While we wait for some other members to jump in and meet you as well, do you have any questions for the group?
Hi Justin, no questions. So far I'm doing okay on imbruvica 560mg and taking b12 and folate supplements. Still have fatigue but its a part of this condition
Thanks to Justin I continued with this.I had given up finding anyone else with such a rare form of leukemia.I do hope the imbruvica works for you.After 6 years ,fatigue is putting it mildly.I sleep 12 hours a day and get blood infusions every other week.Please keep posting your progress here.My name is Barbara.
Hi Barbara, I'm Ann. I'm not used to this cancer stuff and still trying to learn. I found out about cancer when after my tests my regular dr told me I had to go to ER immediately. I went in for one and a half weeks and had fludarabine that didn't work. They were afraid to give me the rituximab part of the chemo. They gave me six bags of blood and in the next 2 months I had 4 more infusions. I wanted to get out of the hospital so badly because they were putting shots in my stomach (forgot what that was) only to be discharged and told to give myself the shot for several weeks and also take famciclovir. Glad that's over. The oncologist didn't give up on me and got me approved for that new drug imbruvica even though he didn't know what exactly I had (first thought it was CLL, then marginal zone lymphoma, then sent me to a specialist to try to figure it out and it took their lab a month and a half to get back to us). I think I have a good oncologist because when dr. gloom and doom specialist immediately suggested to get a stem cell transplant and that if I went into remission it wouldn't last, my onc said 'what's the rush?" I was slowly improving on the imbruvica. The plan is to keep alternative treatments in reserve for when the imbruvica fails. My numbers look ok for now, no infusions or transfusions needed, platelets are high enough. I'm sorry to read about your transfusions. I remember having to check in for a day at the hospital for my extra bloods after I was released from the hospital stay. It's not fun to sit there in those recliners. I couldn't see from your posts if you tried imbruvica but you did mention you had an expensive drug that had too many side effects and thought maybe it was like the one I'm on. I can live with the drug I'm on pretty well, just still have the fatigue which is either the drug or the condition. I cried a lot over this condition, still do sometimes.It's scary and like you, couldn't find online groups or much info.
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.
Hi Barbara – I am on healthunlocked under name 81ue and posted a little bit when first searching for info on B-PLL
This is my profile info:
B Cell Prolymphocytic Leukemia (took 5-6 months to get a name for the cancer from the lab because they first said leukemia, then they said marginal zone lymphoma. The fancy lab took 1 1/2 months to give me this name)
starting at 425K lymphocytes; WBC 500K;. Currently on Imbruvica & began 11/2017.
What? Specialist says 17p deletion and p53 mutation. CD5, CD10 negative, ATM mutation, How can this be, I just feel a little tired, I thought that was bloating, not my spleen! I had 6 blood transfusions and went on Fludarabine and was told it didn't work, so started Imbruvica, 4 more transfusions over the next 2 months then…
December 2017- WBC 172.9K , hemoglobin 9.5, platelets 54K , IgA 38,
April 2018 – WBC 110K , Beta 4.22, LDH 317, hemoglobin 12.7, platelets 70, IgA 46 "out of critical zone now"
June 2018 – WBC 126K , Beta 3.86, LDH 271, hemoglobin 13.2, platelets 97, "remission" ????
July 2018 – WBC 112.5K, Beta 3.65, LDH 244, hemoglobin 13.4, platelets 121, Abs Lymph 84.5,
IgA 53, IgM 77, IgG 952
October 2018 – WBC 74.6K, Beta 3.59, LDH 235, hemoglobin 13.2, platelets 131, Abs Lymph 55.7
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