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CLL Support

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bone joint and muscle pain

I’ve been reading the posts in another series and wanted to break this out. I’...
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R I P

It is with great sadness to tell you that Mick passed away peacefully on the 14t...
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Immunoglobulin tests

Hi again. Yesterday I asked my GP if I could have my blood immunoglobulin levels...
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HI! I only joined today.

Unknown territory for me. I will start on Acalabrutinib in a couple of weeks. 😒...
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Richter’s Anxiety

Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am i...

Background

I appreciate the interest in knowing more of my "back story" and my CLL "markers...

Increased side effects after 6-9 months on Venetoclax

Hi all. I'm happy with the positive results of the Gazyva/Venetoclax treatment ...
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COVID, Pneumonia and healthcare

Dear Community, I wanted to update you on my recent experience with COVID-19,...
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colouring hair on obinutuzumab and venetoclax

I have finished obinutuzumab and am now just on venetoclax.My hair has been unaf...
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Does having CLL really make you 3 times more likely to get (another) cancer, and does CLL treatment add to the risk? - Part 1

1. The risk of developing a Secondary Primary Malignancy "The higher risk of SP...

Is this normal?

We are in the UK. My Husband was diagnosed in 2019. Is prescribed Ibrutinib a...
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calquence

I’m 76 years old and was recently diagnosed with SLL. My doctor put me on Calque...
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MRD Neg at last!

After more than 5years on the I &V arm on the FLAIR TRIAL I was informed today t...
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Newly diagnosed

Hi my name is Suzanne, and I was diagnosed with CLL in October 2023. I'm at the ...
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Survival Rates

Good afternoon. I have now had CLL for one month and had a question for more kno...
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Privigen 45g/4weeks !!!

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on W...
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Lefty

I earned a degree in Electrical Engineering from the University of California, B...

Detected with CLL

Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with ...
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Going down hill fast.

I was in remission a very long time 15 years. 3 months ago I found a lymph node...

Falling platelet counts after achieving Undetectable Minimal Residual Diseaese

Hello folks I completed a course of Venetoclax & Obinituzumab (Gazyva) last Mar...

Achng joints and muscles

Hi all hope today finds you well. Recently posted that my cll is back after 4 yr...
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Hereditary CLL

Hi Everyone, I was diagnosed in January 2022 and have been on watch & wait since...
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CLL specialists

Hello, My CLL specialist left town and I am left with only her NP. I am at a ...
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Live vaccine for dengue fever

My son lives in Bali. He is in the middle of a very severe bout of dengue fever....
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Chronic Pain (Muscle and Joint Pain)

Recent Harvard Health Letter, Volume 49, Number 6, April 2024 (Harvard Medical ...

on watch and wait for 6 years. Numbers are going up and doc this treatment is coming

So what have people been taking for first time treatments. My numbers are going...
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Emails

I have realised I am not getting emails anymore and I havent unsubscribe!!Has th...
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A Shingrix thank you

Hi, I just wanted to thank so many of you who have spoken of your side effects ...

Anyone on Zanubrutinib experience back and leg pain?

I started Zanubrutinib at the end of July in 2023. For the last few months, I ha...

Solutions needed to manage nerve pains ( Post herpetic neuralgia ) after shingles .

I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remissio...
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