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CLL Support

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fatigue

hi friends. I am doing well and into week 7 of the O plus V treatment. I have never felt fatigue like this before. I am a very active person and this has...

hi friends. I am doing well and into week 7 of the O plus V treatment. I have ne...

DogmomLM

•4 hours ago

3 Replies

low blood sodium with CLL

any one know of a link between low blood sodium in older CLL patients Never happened before and Gp has no idea why Any advice greatly received

any one know of a link between low blood sodium in older CLL patients Never ha...

Prawn77

•2 days ago

10 Replies

Lymphatic Drainage

Has anyone heard of or tried lymphatic drainage and whether it could be useful in CLL to eliminate or accelerate the elimination of toxins? Thx. Danny.

Has anyone heard of or tried lymphatic drainage and whether it could be useful i...

Denisguay

•2 days ago

9 Replies

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Surgery on the spine with CLL

Wondering if anyone has had spinal surgery (for stenosis and 3 bulging discs). I was diagnosed with CLL in February 2023 and am currently on watch and wait. I...

Wondering if anyone has had spinal surgery (for stenosis and 3 bulging discs). I...

Pocketdog

•3 days ago

23 Replies

shingles

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony with it. I didn’t get to see the doctor for three days before starting with the...

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony wit...

Headers

•4 days ago

35 Replies

Acala and Obin

After 5 months on Acala twice a day and having just finished my Obin infusions, my lymphocyte count is now 3.6, down from 280 before my treatment began. Obin...

After 5 months on Acala twice a day and having just finished my Obin infusions, ...

Mining_Guy

•4 days ago

6 Replies

WBC continues to decrease with Brukinsa

Good news! Yesterday my WBC was 92.1 -- the first time under 100 in more than six months! I am taking 160 mg of Brukinsa each morning. There has been a gradual...

Good news! Yesterday my WBC was 92.1 -- the first time under 100 in more than si...

Tajie

•5 days ago

7 Replies

Ventaclax Reaction

Hi. Has anyone on ventaclax ever had a blister like reaction. They appear almost like mosquito bites and then become slightly infected with some puss. They...

Hi. Has anyone on ventaclax ever had a blister like reaction. They appear almost...

GhostOfHarrow

•6 days ago

6 Replies

Good evening, everyone,

What is the recommendation for holding off the medication, in my case, Pirtobrutinib (platelets 120), for a colonoscopy?Thanks

What is the recommendation for holding off the medication, in my case, Pirtobrut...

Doremefasol

•6 days ago

7 Replies

Feeling in limbo

Had all my treatment dates through starting next Tuesday, but had a phone call from the Consultant yesterday to say that my genetic mutation test hadn't come...

Had all my treatment dates through starting next Tuesday, but had a phone call f...

Janeerp

•6 days ago

6 Replies

CLL & Bloodclots

I was just advised by my vascular surgery team that CLL greatly increases your risk of blood clots hence the need for a surgical intervention. I am just in...

I was just advised by my vascular surgery team that CLL greatly increases your r...

Safel

•6 days ago

5 Replies

Hb levels

Hi everyone My HB levels which were bimbling along around 90 have recently begun to fall to 50-60 within a week, despite blood transfusions. This has...

Hi everyone My HB levels which were bimbling along around 90 have recently beg...

skytortoise

•7 days ago

4 Replies

very high WBC

Hi All, I’m an Aussie, 48 years old with del13q14. and I’m wait and watch since 10 years.. My wbc was around 100, 000 few months back and now 201000 from Oct...

Hi All, I’m an Aussie, 48 years old with del13q14. and I’m wait and watch since...

Vivekannd

•7 days ago

25 Replies

Starting IVIG Therapy

Hi Friends, I've been in remission for almost 4 years, after Ibrutinib and V and O. My Immunoglobulin levels have been on the decline for 6 months. Not crazy...

Hi Friends, I've been in remission for almost 4 years, after Ibrutinib and V and...

NMgal

•7 days ago

15 Replies

Swollen glands with a cold

Hi....newly diagnosed with no symptoms, and on watch and wait. Normally I shake off colds really quickly without major symptoms but this time I have swollen...

Hi....newly diagnosed with no symptoms, and on watch and wait. Normally I shake ...

EvilEdna71

•8 days ago

11 Replies

Starting V+R

After 7.5 years on ibrutinb got told last week that this Thursday I will be starting V and R . Had terrible skin issues for last two years as some of you may...

After 7.5 years on ibrutinb got told last week that this Thursday I will be star...

cartwheels

•9 days ago

19 Replies

whole food plant based advice

I'm totally new here. Have 1st radiology on Tuesday (12 Nov) As a vegan I am very intersted in the effects of our diet and would like to gain experince...

I'm totally new here. Have 1st radiology on Tuesday (12 Nov) As a vegan I ...

VEGANFTA

•9 days ago

47 Replies

CLL and Vertigo and Ear Pain

Hi all, I’ve had CLL for 4 years and remain on watch and wait. Interestingly I’ve been due to start treatment on two occasions and both times have caught...

Hi all, I’ve had CLL for 4 years and remain on watch and wait. Interestingly I’...

Theplodder

•9 days ago

11 Replies

First consultation after one month on Acalabrutinib which I started at the same time my husband became seriously ill.

I finally took the plunge and agreed to start acalabrutinib on October 7th. Comments from many of you were most useful in helping me make this decision,...

I finally took the plunge and agreed to start acalabrutinib on October 7th. Co...

JEEA

•9 days ago

20 Replies

Acalabrutinib

Experience?

Dureha

•10 days ago

7 Replies

Husband just diagnosed <50 years old

Hello. My husband has just been diagnosed with CLL. He's only 47. We are waiting for his hospital appointment - so far we've just seen the GP. All a bit of a...

Hello. My husband has just been diagnosed with CLL. He's only 47. We are waiting...

blacktortoise

•10 days ago

50 Replies

Zanubrutinib starting treatment

After seeing my specialist yesterday it’s time to start treatment. I haven’t had any vaccinations except COVID and he didn’t mention anything so am wondering...

After seeing my specialist yesterday it’s time to start treatment. I haven’t ha...

FreoSue

•11 days ago

4 Replies

first follow up tomorrow…nervous.

Hi all! As some of you know, I’m an adult daughter to a dad who unexpectedly was diagnosed with CLL over the summer. My dad has his first blood draw...

Hi all! As some of you know, I’m an adult daughter to a dad who unexpectedly was...

anongirll1927

•11 days ago

14 Replies

Musical wind

I’ve been on Ibrutinib for four weeks together with antibiotics etc. over the last few days I’ve developed massive wind in the early afternoon. It starts...

I’ve been on Ibrutinib for four weeks together with antibiotics etc. over the ...

Ukuleleboy1

•11 days ago

3 Replies

Lymph nodes more prevalent in my neck

Hi all, I had a lymph node that was noticeable in my neck. When my consultant checked it he said it was not that big and nothing to worry about. He has since...

Hi all, I had a lymph node that was noticeable in my neck. When my consultant c...

Pav545

•12 days ago

14 Replies

Dental issues with cll,,

Dear Cll`ers I finished O and V in August 2023,, I am 73!. My query is how much are we affected by CLL and Treatment, regarding our teeth. I seemed to get...

Dear Cll`ers I finished O and V in August 2023,, I am 73!. My query is how much...

pati23

•13 days ago

24 Replies

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL This study looked at the impact of vitamin D supplements for patients in the watch and...

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL This stud...

Edalv

•13 days ago

21 Replies

This looks promising- BTK Degrader

https://youtu.be/EuUgVkFdsd0?si=n8ahCmL1YNYvoq8k

Northland

•13 days ago

Be the first to reply

RBC's low--common with CLL?

Hey, folks, at my last appt, my blood platelets had dropped to 130 (from 160 or above) and my RBCs (red blood cells) for the first time were low (4.09 on a...

Hey, folks, at my last appt, my blood platelets had dropped to 130 (from 160 or ...

Vlaminck

•14 days ago

3 Replies

Good Morning

I am at this point in my disease that I have to look into CarT treatment. I know that CLL's response to CarT was only about 40%, but the research is moving...

I am at this point in my disease that I have to look into CarT treatment. I know...

Doremefasol

•14 days ago

8 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

fatigue

low blood sodium with CLL

Lymphatic Drainage

Surgery on the spine with CLL

shingles

Acala and Obin

WBC continues to decrease with Brukinsa

Ventaclax Reaction

Good evening, everyone,

Feeling in limbo

CLL & Bloodclots

Hb levels

very high WBC

Starting IVIG Therapy

Swollen glands with a cold

Starting V+R

whole food plant based advice

CLL and Vertigo and Ear Pain

First consultation after one month on Acalabrutinib which I started at the same time my husband became seriously ill.

Acalabrutinib

Husband just diagnosed <50 years old

Zanubrutinib starting treatment

first follow up tomorrow…nervous.

Musical wind

Lymph nodes more prevalent in my neck

Dental issues with cll,,

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL

This looks promising- BTK Degrader

RBC's low--common with CLL?

Good Morning

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