Does anyone have 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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Barbara, we have a ferral cat that I named Sneaky Kitty (because it is so afraid of people it hides) Sneaky shows up for meals and I hope one day will not run off when I'm near. I still have neutropenia on venetoclax. Reduced dose didn't correct it up to now. WBC is low, all other numbers are good. .Cold and flu season will be very dangerous on a low WBC

REPLY
@81ue

Barbara, we have a ferral cat that I named Sneaky Kitty (because it is so afraid of people it hides) Sneaky shows up for meals and I hope one day will not run off when I'm near. I still have neutropenia on venetoclax. Reduced dose didn't correct it up to now. WBC is low, all other numbers are good. .Cold and flu season will be very dangerous on a low WBC

Jump to this post

We've been talking cats enough;time to get back to business. On 8/18 my HGB was6.3 so I was given only 1 bag of infusion really due to heavy fluid retention.One bag does not do it.By 9/1 my hgb was 5.5,WBC 2.9.RBC 1.93.R platelets 73. A call from the hospital insisted that I come in.I said before I would never do that,but I gave in. Now I say again I will never do that!!!!!!

REPLY
@bflattenor

We've been talking cats enough;time to get back to business. On 8/18 my HGB was6.3 so I was given only 1 bag of infusion really due to heavy fluid retention.One bag does not do it.By 9/1 my hgb was 5.5,WBC 2.9.RBC 1.93.R platelets 73. A call from the hospital insisted that I come in.I said before I would never do that,but I gave in. Now I say again I will never do that!!!!!!

Jump to this post

Barbara, please take care of yourself. Your platelets are too low and WBC is below normal. HGB is way too low as you know. The danger is that you're getting less oxygen to your organs and more likely to get an infection. I understand not liking the hospital and I think your levels are going down so fast that is why you were asked to go to the hospital. Are you there right now?

REPLY
@81ue

Barbara, please take care of yourself. Your platelets are too low and WBC is below normal. HGB is way too low as you know. The danger is that you're getting less oxygen to your organs and more likely to get an infection. I understand not liking the hospital and I think your levels are going down so fast that is why you were asked to go to the hospital. Are you there right now?

Jump to this post

I believe it was just 7 hrs. this time; I have never yet stayed over night.More later when I can think straight. The most important function of oxygen is the brain;the last thing I want to lose.

REPLY
@bflattenor

I believe it was just 7 hrs. this time; I have never yet stayed over night.More later when I can think straight. The most important function of oxygen is the brain;the last thing I want to lose.

Jump to this post

Didn't have to go to the hospital at hgb 6.2,but was given 1 bag again,I don't know how I'll make 2 wks on 1 bag.

REPLY

Barbara - if you have to go 2 weeks at that level, then I wish you the best 2 weeks with enough energy to go about your day and I hope you find something you can do to enjoy the time to your next infusion.

In my situation I'm doing ok on the venetoclax but they gave up on my neutrophils and I'm below normal. Since I didn't get sick or have a fever they think I'm ok the way it is with below normal white blood count (nothing needs to be done about it yet).

REPLY

@bflattenor
@81ue
@peggy1944

Hi, I was reading about b-pll and found this:
Symptoms:
Feeling tired, pale color, fever, easy bleeding or bruising, bone pain...

Very similar as vitamin c deficiency,

have you ever checked your levels of ascorbic acid ?

Have you tried liposomal vitamin c to boost your immune system ?

REPLY
@srmora1

@bflattenor
@81ue
@peggy1944

Hi, I was reading about b-pll and found this:
Symptoms:
Feeling tired, pale color, fever, easy bleeding or bruising, bone pain...

Very similar as vitamin c deficiency,

have you ever checked your levels of ascorbic acid ?

Have you tried liposomal vitamin c to boost your immune system ?

Jump to this post

smora1, I had many blood tests and vitamin C didn't come up as deficient, although vitamin B-12 and folate were recommended. I do believe vitamin C is important and use high vitamin C foods frequently.

REPLY
@81ue

smora1, I had many blood tests and vitamin C didn't come up as deficient, although vitamin B-12 and folate were recommended. I do believe vitamin C is important and use high vitamin C foods frequently.

Jump to this post

I eat lots of tomatoes & orange juice because I love them,not because I believe any vitamin will cure B-PLL.Have you heard that green chilies have 3 times the vitamin C as orange juice.....maybe hearsay ;need checking. More after my test on Sunday.

REPLY
@bflattenor

I eat lots of tomatoes & orange juice because I love them,not because I believe any vitamin will cure B-PLL.Have you heard that green chilies have 3 times the vitamin C as orange juice.....maybe hearsay ;need checking. More after my test on Sunday.

Jump to this post

HGB was 6.2 again.The only 1 bag of infusion seemed to work better in 2 wks than the usual 2...could it have anything to do with the fact that it was O+ ? I doubt it,but let's see what tomorrow will bring.

REPLY
Please sign in or register to post a reply.