B-cell prolymphocytic leukemia (B-PLL)

Posted by bflattenor @bflattenor, Aug 6, 2018

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

Barbara, I'm so sorry to read you were let to go down to Hgb 5.4. Truly you are brave to have to go through this, and I'm so glad you got the transfusion in the nick of time. I hope you are able to enjoy going for walks again without so much pain and that you have energy to enjoy things in life. I wish you a Happy 4th of July !

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I went to the lab for my scheduled appointment. I expected it to be low, but it was 6.3—it's not that easy to guess. Now I have to arrange either a Tues. appointment,and someone to meet the Meals on Wheels, or try to get a Monday appointment; so I can be home.Nobody said it was going to be easy.The 4th was beautiful,thanks to my neighbors who ignored the law and shot fireworks over the lake.

Liked by peggy1944

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I was given 1 bag of blood since the reading was so high(?). I read mostly the hgb,but the Dr.may be relying on the whole picture.Now I will need to go in every other Sunday for LAB work. I'm starting to feel like a burden on my friends.

Liked by peggy1944

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@bflattenor

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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Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to reply, been laid up but now back to the usual. Haven't looked through the posts yet, hope you are coping OK with your journey. What a courageous person you are! Your experience with crossing the bridge is a great parable. Just tie another knot and hang on. I was not quite as successful facing a scary water problem when I was also 8; my father wanted me to cross a lake with him in a canoe! Was so terrified I almost passed out cold. No bravado there. Well, that's water under the bridge! Let me check my posts later, and Barbara, you really give me hope for the future! Peggy

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@peggy1944

Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to reply, been laid up but now back to the usual. Haven't looked through the posts yet, hope you are coping OK with your journey. What a courageous person you are! Your experience with crossing the bridge is a great parable. Just tie another knot and hang on. I was not quite as successful facing a scary water problem when I was also 8; my father wanted me to cross a lake with him in a canoe! Was so terrified I almost passed out cold. No bravado there. Well, that's water under the bridge! Let me check my posts later, and Barbara, you really give me hope for the future! Peggy

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Did't you mean WATER UNDER THE CANOE????

Liked by peggy1944

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Don't mind my sense of humor; it is extremely warped now. Another test next Sunday.

Liked by peggy1944

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@bflattenor

I was given 1 bag of blood since the reading was so high(?). I read mostly the hgb,but the Dr.may be relying on the whole picture.Now I will need to go in every other Sunday for LAB work. I'm starting to feel like a burden on my friends.

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Oh Barbara–I am absolutely sure you are never a burden on your friends!! They help you because they WANT to. Real friends stick with you more than family, this I found out the hard way. True friendship is a gift from God. Sorry I took so long to respond, and hang in there. Regards, Peggy

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@bflattenor

Did't you mean WATER UNDER THE CANOE????

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OMG, water under the canoe, just thinking about that incident scares me to death! And I never did cross the lake, ugh.

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Dear Peggy, How are you doing? We haven't heard from you for 3 wks. Are you doing the guinia pig thing for them again? I had my usual 2 bags yesterday, and found out what was meant by not being able to handle it when I was given only one bag. I was retaining fluids and too much would be dangerous.After my driver friend left at 8:30 i must have just thrown myself on my bed;only to awake 14 hrs later. I found doors open and lights on all over the house.After setting things right,I slept another 12 hrs. Years ago I did the same thing when I was exhausted moving into this house only to wake up to find the neighbors cat sitting by my bed watching me sleep.

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@bflattenor

Dear Peggy, How are you doing? We haven't heard from you for 3 wks. Are you doing the guinia pig thing for them again? I had my usual 2 bags yesterday, and found out what was meant by not being able to handle it when I was given only one bag. I was retaining fluids and too much would be dangerous.After my driver friend left at 8:30 i must have just thrown myself on my bed;only to awake 14 hrs later. I found doors open and lights on all over the house.After setting things right,I slept another 12 hrs. Years ago I did the same thing when I was exhausted moving into this house only to wake up to find the neighbors cat sitting by my bed watching me sleep.

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Hi Barbara – I think I would have been very scared to find all the doors open and lights on! I'm glad you are ok again. Those infusions seem to be very hard on your circulation.

I've reduced my venetoclax dose due to it is killing too many of my B-cells and now I'm being monitored every other week and told I have neutropenia. I'm now scared of all germs because there's less white blood cells to fight it off. I do feel much better though than when I was on imbruvica in terms of energy.

Liked by peggy1944

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@81ue

Hi Barbara – I think I would have been very scared to find all the doors open and lights on! I'm glad you are ok again. Those infusions seem to be very hard on your circulation.

I've reduced my venetoclax dose due to it is killing too many of my B-cells and now I'm being monitored every other week and told I have neutropenia. I'm now scared of all germs because there's less white blood cells to fight it off. I do feel much better though than when I was on imbruvica in terms of energy.

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LOVE YA!!!<Barbara

Liked by peggy1944

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@bflattenor

Dear Peggy, How are you doing? We haven't heard from you for 3 wks. Are you doing the guinia pig thing for them again? I had my usual 2 bags yesterday, and found out what was meant by not being able to handle it when I was given only one bag. I was retaining fluids and too much would be dangerous.After my driver friend left at 8:30 i must have just thrown myself on my bed;only to awake 14 hrs later. I found doors open and lights on all over the house.After setting things right,I slept another 12 hrs. Years ago I did the same thing when I was exhausted moving into this house only to wake up to find the neighbors cat sitting by my bed watching me sleep.

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Oh Barbara, I am so sorry not to have answered sooner–had a terrible time with my computer. I had the same kind of experience when I came home from the hospital, I didn't even remember getting home, taking off my winter gear and apparently going to bed. I've had total exhaustion periods many times over the years, being so dreadfully sick, getting all those toxic drugs, stress, etc. It all takes a toll. Hope you are hanging in there, trying not to freak out and putting faith in God. Having faith in God is why I am still alive. Hope you have a decent weekend without unforeseen problems. Do you have a pet, by the way? The love of an animal is quite healing!

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@peggy1944

Oh Barbara, I am so sorry not to have answered sooner–had a terrible time with my computer. I had the same kind of experience when I came home from the hospital, I didn't even remember getting home, taking off my winter gear and apparently going to bed. I've had total exhaustion periods many times over the years, being so dreadfully sick, getting all those toxic drugs, stress, etc. It all takes a toll. Hope you are hanging in there, trying not to freak out and putting faith in God. Having faith in God is why I am still alive. Hope you have a decent weekend without unforeseen problems. Do you have a pet, by the way? The love of an animal is quite healing!

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My hgb was 5.7,but no-one pushed for me to go to ER.I went at noon Monday,and received 2 bags.My BP was too high;so they were reluctant to release me. Protocol was to send me to the BP Clinic,but they were already closed. I promised I would come in on Tues and renew my prescription,and take better of myself. Once I made the promise; I would definitely keep it.I have had 4 cats in the last few years only to lose them in unhappy ways. The Burmese was only 5 years old and our boat cat ,but he had an enlarged heart.Sydney was the vet's own declawed greeter cat ,but when they moved;they didn't have room for him.He was already 14 and when he had a need for vet service they would ask what I wanted done.I would answer It's your cat;he just lives with me.I can't tell about Inkspot and his sister-just too painful.I loved them all so much.

Liked by peggy1944

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@bflattenor

My hgb was 5.7,but no-one pushed for me to go to ER.I went at noon Monday,and received 2 bags.My BP was too high;so they were reluctant to release me. Protocol was to send me to the BP Clinic,but they were already closed. I promised I would come in on Tues and renew my prescription,and take better of myself. Once I made the promise; I would definitely keep it.I have had 4 cats in the last few years only to lose them in unhappy ways. The Burmese was only 5 years old and our boat cat ,but he had an enlarged heart.Sydney was the vet's own declawed greeter cat ,but when they moved;they didn't have room for him.He was already 14 and when he had a need for vet service they would ask what I wanted done.I would answer It's your cat;he just lives with me.I can't tell about Inkspot and his sister-just too painful.I loved them all so much.

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Oh Barbara, I am so sorry you have lost your beloved Kitties! I know exactly how you feel, it is like losing children! I have lost so many beloved pets over the many years of my life, and understand how difficult it is to talk about them. Perhaps someday a little creature will attract your attention, in a most unlikely spot. What kind of vet has no room for a cat he had 14 years? Did this vet replace Sydney for a younger pet? To me he's cold and unfeeling. Please don't give up on a furry little friend just yet, Barbara. But your health DOES come first. Hope you had a better week this far, and hang on there. Peggy

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Sydney the greeter cat lived at the vet office and had his own room at night.When they hired a groomer she insisted on her own room which took precidence over Sydney even though he had the honor of being named after the vet himself.We felt very special to have Sydney come and live in our home.He became a groomer cat and took care of my husband's crew cut.

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