Posts - CLL Support | HealthUnlocked

CLL Support

24,045 members•40,899 posts

All posts for February 2025

Healing CLL my way..

After 12 years of waiting and watching, 2024 presented some very high white cell counts....between 200 and 300K. My oncologist and I decided to try CalQuence...

After 12 years of waiting and watching, 2024 presented some very high white cell...

Cdub32

•2 months ago

27 Replies

Repeat Venetoclax?

Just wondering……. I just completed two years of treatment in the V plus R arm of the LOXO trial in July 2024. Had a great response: MRD negative in blood and...

Just wondering……. I just completed two years of treatment in the V plus R arm o...

Agiledog

•2 months ago

13 Replies

congrats!

congratulations! Praise God!

Matador007

•2 months ago

3 Replies

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BLOOD WORK DIAGNOSIS

Just wondered....my bloodwork done on 12/27/24 was the usual with abnormal highs or lows in: rbc 3.9,hemo 11.0, platelets 129,MCHC 30.9,ImA Qn Serum 59,...

Just wondered....my bloodwork done on 12/27/24 was the usual with abnormal highs...

loveRicky

•2 months ago

20 Replies

CAR-T treatment

Hello everyone. I was diagnosed 11 years ago with CLL with 17P deletion. I went through all standard treatments: Venetoclax, Acalabrurinib and now I’m on...

Hello everyone. I was diagnosed 11 years ago with CLL with 17P deletion. I went ...

X1702

•2 months ago

6 Replies

Shingles

I had my first shingles in 2022, and was cured within 1 week . I took the shingles vaccine shingles shoot after a month. Unfortunately, it repeatedly coming...

I had my first shingles in 2022, and was cured within 1 week . I took the shingl...

Shingle25

•2 months ago

13 Replies

How to access emergency help

I live in the Uk under the nhs. I’m five cycles into my second ibrutinib/venetoclax treatment. All going well but immune system propped up to keep me out...

I live in the Uk under the nhs. I’m five cycles into my second ibrutinib/vene...

Ukuleleboy1

•2 months ago

9 Replies

Weird CBC reports

Hello I have been in watch and wait for 11 years. In September my WBC was 30.9 and my lymphocytes at 25. My iga .41 and igg 4.21. Total protein 58. Everything...

Hello I have been in watch and wait for 11 years. In September my WBC was 30.9 a...

Rosiehiker

•2 months ago

3 Replies

Started 2nd line Acalabrutinib , Top tips 😆

Hi all, I have just started my second line treatment last week for my CLL. Diagnosed in 2017 , chemo previously FCR in 2020. Bloods needed zapping so my...

Hi all, I have just started my second line treatment last week for my CLL. Diag...

Roseneath69

•2 months ago

11 Replies

Zanabrutinib side effects

I have been on Zanabrutinib since July 2023. Very good test results. But I am having horrid pain in my back and thighs. My Doctor just cut my dose in half....

I have been on Zanabrutinib since July 2023. Very good test results. But I am ha...

motorcycle1

•2 months ago

3 Replies

Understanding CLL-derived Fatigue

This topic just keeps coming up, such as in this recent post CLL and weakness? Fatigue just a state of mind? ...

This topic just keeps coming up, such as in this recent post CLL and weakness? F...

AussieNeil

Administrator•2 months ago

17 Replies

Hair Loss?

I was diagnosed with CLL in April 2024. I began experiencing symptoms in October 2024. I am not getting immunotherapy treatments along with taking...

I was diagnosed with CLL in April 2024. I began experiencing symptoms in Octobe...

whitewsu

•2 months ago

8 Replies

Dr. Eric Topol: post: The First Diagnostic Immunone

https://erictopol.substack.com/p/the-first-diagnostic-immunome The First Diagnostic Immunome A Big Step Forward By Sequencing B and T Cell Receptors Plus...

https://erictopol.substack.com/p/the-first-diagnostic-immunome The First Diag...

msnik

•2 months ago

2 Replies

CLL and Mohs procedure

i have CLL and doing great. On Ibrutinib since Feb 2019. Was recently diagnosed with basal cell skin cancer on the bridge of my nose. Also have another...

i have CLL and doing great. On Ibrutinib since Feb 2019. Was recently diagnosed ...

210savannah

•2 months ago

43 Replies

Diffuse Large B Cell Lymphoma

After 3 prior therapies (Acalabrutinib, Venetoclax and Pirtobrutinib/Obinutuzumab), my CLL/ Marginal Zone Lymphoma has transformed to DLBCL. Has anyone on...

After 3 prior therapies (Acalabrutinib, Venetoclax and Pirtobrutinib/Obinutuzuma...

Bajabarb

•2 months ago

12 Replies

Wandering and Waiting in Unknown Territory

For those of you who were here when I dropped off the forum about the time I was found to be MRD, I was Cllady01 and found it difficult to re-enter with the...

For those of you who were here when I dropped off the forum about the time I was...

Cllady25

•2 months ago

13 Replies

Lab Work

I had the following bloodwork drawn: CBC with Differential Platelet, Comp. Metablolic Panel (14), Protein Electro S,m Immunofixation Serum, Free K&L LI...

I had the following bloodwork drawn: CBC with Differential Platelet, Comp. Meta...

loveRicky

•2 months ago

13 Replies

Improving Treatment Options for Patients with Double Refractory CLL - patients who progressed after treatment with both cBTKis and BCL2i

Abstract The proliferation and survival of chronic lymphocytic leukemia (CLL) cells are heavily dependent on B-cell receptor (BCR)...

Abstract The proliferation and survival of chronic lymphocytic leukemia (CLL...

AussieNeil

Administrator•2 months ago

8 Replies

BTK Is the Target That Keeps on Giving: A Review of BTK-Degrader Drug Development, Clinical Data, and Future Directions in CLL

Here's a welcome article that explains all about BTK degraders; the next class of BTK drug after the success of the FDA approved covalent BTKis...

Here's a welcome article that explains all about BTK degraders; the next class o...

AussieNeil

Administrator•2 months ago

4 Replies

When second therapy line will start?

Hello, my mother has CLL, diagnosed in November 2018, she was 62 years old. In was very fast, so she had Bendamustin monotherapy since April till October (6...

Hello, my mother has CLL, diagnosed in November 2018, she was 62 years old. In w...

Taupe7

•2 months ago

7 Replies

blood

okay first Dr Byrd is great. MD Anderson and OSU to genetic or fish testing on your blood. all the hospitals do not that's why they took so many vials they...

okay first Dr Byrd is great. MD Anderson and OSU to genetic or fish testing on ...

Swissnology

•2 months ago

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Early CLL Treatment Options: What to Know

More interesting "I thought So's" from Patient Power - One point on early treatment and fatigue. Check it out -...

More interesting "I thought So's" from Patient Power - One point on early treatm...

Smakwater

•2 months ago

11 Replies

Acalabrutinib

I have been taking Acalabrutinib now for over 2 years and am still suffering from heavy night sweats up to 2 times a night. This is despite my blood test...

I have been taking Acalabrutinib now for over 2 years and am still suffering fro...

Angela_G

•2 months ago

3 Replies

Newly Diagnosed CLL

I’m new to this group chat, and found the information helpful. I see many people started increasing Vitamin D during the “wait and see” period. Is there a...

I’m new to this group chat, and found the information helpful. I see many people...

Sookie2000

•2 months ago

7 Replies

appointment today

Goodmorning all! I have my 3 month follow up today at MD Anderson in Jacksonville. My labs are completely normal as they have been since diagnosis June...

Goodmorning all! I have my 3 month follow up today at MD Anderson in Jacksonvil...

Reetywell71

•2 months ago

9 Replies

Linda

Any advice on mouth blood blisters so sore having a bone marrow biopsy followed by chemo soon .

Any advice on mouth blood blisters so sore having a bone marrow biopsy followed ...

Oscarchapman

•2 months ago

4 Replies

please share experience on Rituximab combined with Venetoclax oral tablets and side effects

Hello everyone, I was diagnosed with CLL in 2013 and was under W&W. After two cycles of BR (discontinued the rest of the BR cycles due to severe side...

Hello everyone, I was diagnosed with CLL in 2013 and was under W&W. After two c...

attarintiki

•2 months ago

18 Replies

Additional insights from the 2023 Global Leukemia Experience Survey - CLL specific findings, unmet needs and recommendations for action

The Chronic Lymphocytic Leukemia Advocates Network (CLLAN) commissioned Picker to examine diagnostic pathways, immunity status, and treatment decision...

The Chronic Lymphocytic Leukemia Advocates Network (CLLAN) commissioned Picker t...

Jm954

Administrator•2 months ago

5 Replies

COVID shots 24-25 winter

My wife just received a notification from our pharmacy that a booster COVID shot is recommended 6 months after the last 24-25 winter COVID shot. This second...

My wife just received a notification from our pharmacy that a booster COVID shot...

Claybuster

•2 months ago

16 Replies

cin51

I am a 73 yr old female diagnosed with CLL 2 years ago in watch and wait. My question is, what vitamins or supplements are best to take to help with...

I am a 73 yr old female diagnosed with CLL 2 years ago in watch and wait. My qu...

12whitedoves

•2 months ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2025

Healing CLL my way..

Repeat Venetoclax?

congrats!

BLOOD WORK DIAGNOSIS

CAR-T treatment

Shingles

How to access emergency help

Weird CBC reports

Started 2nd line Acalabrutinib , Top tips 😆

Zanabrutinib side effects

Understanding CLL-derived Fatigue

Hair Loss?

Dr. Eric Topol: post: The First Diagnostic Immunone

CLL and Mohs procedure

Diffuse Large B Cell Lymphoma

Wandering and Waiting in Unknown Territory

Lab Work

Improving Treatment Options for Patients with Double Refractory CLL - patients who progressed after treatment with both cBTKis and BCL2i

BTK Is the Target That Keeps on Giving: A Review of BTK-Degrader Drug Development, Clinical Data, and Future Directions in CLL

When second therapy line will start?

blood

Early CLL Treatment Options: What to Know

Acalabrutinib

Newly Diagnosed CLL

appointment today

Linda

please share experience on Rituximab combined with Venetoclax oral tablets and side effects

Additional insights from the 2023 Global Leukemia Experience Survey - CLL specific findings, unmet needs and recommendations for action

COVID shots 24-25 winter

cin51

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