Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for December 2023

Possibly trial

Had my bloods today and my consultant spoke how I have been on in a long time 6-5 years and this year my numbers are heading north , 2 then 4 then 6 now 11 in...

Had my bloods today and my consultant spoke how I have been on in a long time 6-...

•5 months ago

symptoms of CLL

I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have...

I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood w...

•5 months ago

Feavers

Hi all, l have been on w * w for 5 years would like to know if mouth alcers take longer to heal for us with cll, any info would be much appreciated

Hi all, l have been on w * w for 5 years would like to know if mouth alcers take...

•5 months ago

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Doing well on 140mg ibrutinib capsule for past 9 mos

Good news...I wanted to post some feedback on my progress since starting ibrutinib 140 mg 1x daily capsule for last 9 months. My wbc has remained in mid normal...

Good news...I wanted to post some feedback on my progress since starting ibrutin...

•5 months ago

new to Group

hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a...

hello, I’m New to this group. I’m hoping for some basic information regarding ...

•5 months ago

Acalabrutinib- stopping before surgery and possible side effects.

I have more skin cancer. I’ve been on Acalabrutinib for a year. I believe I will have to stop taking it for a few days before and after surgery. Are there any...

I have more skin cancer. I’ve been on Acalabrutinib for a year. I believe I will...

Katie-LMHC-Artist

•5 months ago

Continue medication upon remission

Hi Fellow members, I am on Acalabrutinib since April 2022 and Venetoclax since last July. I did the BM test last month and my hematologist declared I am...

Hi Fellow members, I am on Acalabrutinib since April 2022 and Venetoclax since...

•5 months ago

Joint pain and muscular uplifting news .

I finished my O & V treatment on 15th Nov , By 2nd week I have already noticed my joint and muscular pains are less!! . Knees and hips haven't yet...

I finished my O & V treatment on 15th Nov , By 2nd week I have already no...

•5 months ago

CLL Support Christmas Donation Appeal

CLL Support is the UK charity behind this forum. All our trustees, admins and volunteers are unpaid, and we rely on our members to raise funds to allow us...

CLL Support is the UK charity behind this forum. All our trustees, admins and vo...

Partner•5 months ago

Petechiae

I have an indolent (is that possible? doc calls it that) CLL. stable; normal labs; on ibrutinib (280) since 12/2019. I have increased petechiae on my legs;...

I have an indolent (is that possible? doc calls it that) CLL. stable; normal l...

•5 months ago

CLL and Lymphocytic colitis

Hi, was diagnosed with CLL last November. Recently been diagnosed with Microscopic Colitis otherwise known as Lymphocytic colitis and suffer greatly, so my...

Hi, was diagnosed with CLL last November. Recently been diagnosed with Microsc...

•5 months ago

Going to the gym

Not sure but, I think this is pertinent to this forum. Had two years of BTKi treatment. Beeen off of treatment for 18 months, doing ok. Immunoglobulins are...

Not sure but, I think this is pertinent to this forum. Had two years of BTKi tr...

•5 months ago

Cheaper CAR-T: Perhaps some good news on a cold rainy November day?

A new device accelerates the production of tailor-made chimeric antigen receptor (CAR) T-cell therapies. This innovation is a stride towards cost-effective...

A new device accelerates the production of tailor-made chimeric antigen receptor...

•5 months ago

Richter's Transformation: standardized therapy or clinical trial

My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he...

My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did...

•5 months ago

update: Zanabrutinib vs Obenven (O&V)

We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands...

We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrut...

•5 months ago

Why it's so hard to cure cancer, and why Keith Richards may have provided the key

This video https://vimeo.com/175547507 made seven years ago, addresses the question "Why is it so hard to cure cancer?" It's a broad brush approach,...

This video https://vimeo.com/175547507 made seven years ago, addresses the quest...

•5 months ago

Novavax

I have a question. I have been hearing from other groups that the Novavax vaccine has fewer side effects in people with CLL. I would like to hear your...

I have a question. I have been hearing from other groups that the Novavax vacci...

•5 months ago

CLL leukemia

What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L

What does it mean when your white blood count increases from 27 to 30.6 10^9/L...

•5 months ago

2nd day Venetoclax

I'm on day 3 of Venetoclax and noticed last night I had small red slightly raised spots on hands. Faded a bit this morning. It's my only side effect so far....

I'm on day 3 of Venetoclax and noticed last night I had small red slightly rais...

•5 months ago

New government, new hope??

We have a new coalition government in Aotearoa NZ ( whoops I shouldn’t say that!) which generally seems to be very right wing and seems to be looking after the...

We have a new coalition government in Aotearoa NZ ( whoops I shouldn’t say that!...

•5 months ago

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