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
I was given the usual 2 bags Tue. morning ,but I seldom see any difference the first day. When we arrived home it was straight to bed,and I seemed so bad George wanted to stay with me. I convinced him to go home, –and I would call him in the morning. Robin stayed until 10:00 and tippy toed out. In the morning I still wanted to sleep; so I called George and had him tell Robin I was OK. I guess that's the problem when your caregivers don't live with you. I'm going to bed soon so I can make it in the morning. I want you to know several Drs. have said my heart was good, but can't take more than 2 bags or at too fast a rate. Anemia is what I already have(but not iron poor).I don't want you worrying about me;I have all I need doing that. You are doing the right thing with your research;just be careful!!!!! I'm starting to think of you as another one of my granddaughters—-take care.
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.
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Hi Barbara! You are the most incredible person I have ever read about, so brave and persistent! Your cancer journey has given me lots of hope for the future! And when I read your age, it just bowled me over. You are truly inspirational and I thank you for sharing. Best wishes, Peggy
Barbara you must have a very strong heart for that amount of blood. You also have strength to go through these many infusions . It takes a good part of the day to sit for infusions. And long sitting can be tiresome too. I see people in infusion rooms reading and when I go for blood or rituxan I sit and think about anything until the bag gets low and then I want nurses to estimate how much longer it will be .
Sleep is supposed to be very important for healing – uninterrupted sleep. So i hope you got the rest you craved and have great energy now to enjoy the day
Dear Peggy, Are you in the same boat as Ann and me? or a near by type?If so;we should get to know each other better.My last infusion doesn't seem to be working as well.I will test again next Sunday and judge by the numbers.
Barbara – so sorry the infusion doesn't seem to be working.
Would you be willing to try venetoclax? I'm on that now and have so much more energy than when I was on imbruvica. I don't know how long it will last but it seems to be better than the last medicine in that there are less side effects. The side effect I and others notice is a hint of nausea about an hour after eating but its not enough to cause vomiting or interfere with food or activities and doesn't last very long. The down side is that venetoclax has to be started with observation in the hospital.
I hope your blood numbers will be okay. Sometimes if we fight an infection or a cold, it shows up as fatigue, and not as sickness would when we didn't have B-PLL. The fatigue is the sign your body would give that it is still fighting something. Or infection could just show up as fevers that never get better (that happened to me and was a learning moment)
No more trying different medications for me—it's infusions or nothing. I'll post after my lab results Sunday;I'll very likely sleep all day Saturday.zzzzzzzz
Test came out 7.6 which is too high for me to get an infusion.I could beg or go to the ER,but I have chosen to do nothing.
I still feel so sad that they think that low number is "too high". Barbara you are so strong to put up with that
Hgb 5.4 on Sunday;never a doubt in my mind that the # would be low.Robin was on standby to take me to the clinic,but confusion about the appointment (trying to wait until Tuesday) just wouldn't make it.The RN who called put me on hold and lost me.She tried to get back,but I fell asleep,and awoke to the sound of a handsome young cop pounding on the door with his nightstick.Once he saw I was OK and Robin arrived we made it to the clinic at 1:00;I was given 2 small bags and rushed through to leave by 4:30.The longer they know me,the faster the infusion. I hope I will be up to par by Wed. .or even tomorrow. I'm already cracking jokes—–but when did that ever stop?????
Hi bflattenor! My sincerest apologies for not answering your post sooner, me e–mail has been disabled for 2 months. You are so very brave facing and fighting B-PLL with such good spirits. I should originally have said I am living with chronic congestive heart failure, respiratory distress and total deafness. Your posts and all the others on Mayo Connect have given me the courage just to take these miserable obstacles one day or one minute at a time. I also have severe chronic pain but thanks to MC, am managing OK. We are all in some kind of boat but nothing can sink us! Best Wishes, Peggy
Liked by Justin McClanahan
@peggy1944, thank you for responding to @bflattenor. Did you also know that you can check your discussions, posts and notifications on the website as well? If your email is now working, click on VIEW & REPLY at the bottom of this notification and you will be brought to the discussion on the website. This way, if your email is deactivated again, you can still check your messages and discussions. It is also a bit easier to see the conversation and everyone's posts a bit easier on a webpage as well.
Liked by Teresa, Volunteer Mentor
Dearest Peggy, I'm sorry to hear you are having so much pain.Most of my pain is only when I am trying to walk,and since the B-PLL is making me want to sleep most of the day that's not so much.Your reference to a boat "hit me where I live" ; since I am almost a life long sailboater…..anything from 8ft.to 36ft.I've owned and sailed them all. Living on a lake makes up for that loss.
Liked by Teresa, Volunteer Mentor, Justin McClanahan, peggy1944
Hi Justin, and thank you for responding! Yes, I have already been a member on other sites on my computer. But not recently. I've been sick for almost 2 weeks with upper respiratory infection, ear infection. Always wanted to start a conversation about how older cleft palate/cleft lip craniofacial deformities survivors have coped many years after their initial surgeries. Like surgery in the dark ages. I did not fare well. Thanks again Justin, and have a great holiday! Peggy
Dear Barbara, thank you for all your kindness in responding to my post! I understand just what it is to need sleep, it is my middle name. OMG, I am scared to death of anything pertaining to boats and water!! Terrified, not brave like you. I can't even drive over a bridge with water under it! Get panic attacks at the thought of being forced off the road into the drink. Oh well, Barbara, I am so happy you lived your life with what you truly love! Gotta go, and Happy 4th!
I was not always brave when it came to water. When I was 8 yrs old I lived in Petaluma for a short time. My 10 yr old sister had a friend who lived on the other side of the river.One day we were going to her house which meant crossing the draw bridge. They walked across and turned around to find me still on the other side.My sister was not very happy with me; so I tried to get a little braver. I looked each way up and down the river and saw no boats,and the cars were still driving across;so I ran like a thief ! I have no recollection of how I got home. I've had to call on that bravado a lot in the last 6 yrs.
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