Posts - CLL Support | HealthUnlocked

CLL Support

23,952 members•40,798 posts

All posts for March 2025

CT shock

I’m on watch and wait. My haematology appointment was yesterday. Tuesday I had very bad pain in my rib cage and the ambulance crew took me to A&E. Doctor sent...

I’m on watch and wait. My haematology appointment was yesterday. Tuesday I had v...

21Bedlam21

•7 hours ago

6 Replies

National Patient Data day conference - June 24 Leeds

I'm a member of an organisation called useMydata - a group of patients keen on having their medical data shared across different bits of the NHS. So that GPs,...

I'm a member of an organisation called useMydata - a group of patients keen on h...

Snellybob

•16 hours ago

2 Replies

update

hi it has been quite a few months since I posted so thought I would get in touch as you have all supported me from the beginning . in the end I decided not to...

hi it has been quite a few months since I posted so thought I would get in touch...

Hilo13

•18 hours ago

4 Replies

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Nuetropenia level 0. O

Hi all, l went to sign forms to start Treatment for the first time and they did a fbc nuetropenia 0.1 told to get antibiotics, I have been in hospital since...

Hi all, l went to sign forms to start Treatment for the first time and they did ...

Feavers

•19 hours ago

6 Replies

2025 Update about Chronic Lymphocytic Leukemia, its epidemiology, pathogenesis, diagnosis and therapy

The American Journal of Hematology has published German CLL specialist Michael Hallek's 2025 update about CLL, its epidemiology, pathogenesis, diagnosis and...

The American Journal of Hematology has published German CLL specialist Michael H...

CLLerinOz

Administrator•1 day ago

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Cruising Soon (May)

I had a Covid shot in September. I recently it’s a good idea to get a booster about 4 weeks before. I will of course check with my Dr. but just curious has any...

I had a Covid shot in September. I recently it’s a good idea to get a booster ab...

Wendy328

•1 day ago

4 Replies

Richters Transformation, RCHOP+VEN?

Hi, I’m 42yoa and have all the bad markers (17p, TP53, etc). Unfortunately, a week ago I was officially diagnosed with RT. I started showing symptoms a month...

Hi, I’m 42yoa and have all the bad markers (17p, TP53, etc). Unfortunately, a w...

Lindy0311

•1 day ago

11 Replies

Car-t adventure continues!

Thanks SO MUCH to everyone for your support, prayers and good wishes for the success of my Car-t treatment! I am currently on Day 2 after the t-cells were...

Thanks SO MUCH to everyone for your support, prayers and good wishes for the suc...

Bajabarb

•2 days ago

3 Replies

Starting V&O Help!

I have followed this group since joining as I was diagnosed with CLL in 2022. I will be starting V&O treatment April 9th and would like to ask: What you wish...

I have followed this group since joining as I was diagnosed with CLL in 2022. I...

Melij

•2 days ago

16 Replies

My mammogram

I am remission,and I take imbruvica, and my mammogram is Abnormal, please thank you 🙏, feedback, please

I am remission,and I take imbruvica, and my mammogram is Abnormal, please thank ...

Reeseru

•2 days ago

6 Replies

has anyone gone off and back on Acalabrutinib. How sussessful? How long to get strength back?

Has anyone gone off Acalabrutinib and had upper respiratory issues immediately following it? Has anyone gone off Acalabrutinib and restarted it? Did it start...

Has anyone gone off Acalabrutinib and had upper respiratory issues immediately f...

492hemi

•2 days ago

4 Replies

Venetoclax and high blood pressure

I am currently on second line treatment. I have been on venetoclax since Dec. 2023 and did six months of rituximab injections, finishing those in June, 2024....

I am currently on second line treatment. I have been on venetoclax since Dec. 2...

Jackpot

•2 days ago

13 Replies

Has anyone experienced anxiety while on Venetoclax?

I have not seen it listed on side effects.

Tangolover

•2 days ago

11 Replies

17 years in! Vclax vs platelets

Long time no post! 17 years with CLL my general health remains excellent. Now 2.5 years on Vclax (mono and on it indefinitely), after a very shaky start (wiped...

Long time no post! 17 years with CLL my general health remains excellent. Now 2....

Lawand1

•4 days ago

4 Replies

Car-T begins tomorrow!

Just wanted to update you all about where I am with my CLL/MZL which transformed into DLBCL (still not sure if it’s Richters but definitely close) in January,...

Just wanted to update you all about where I am with my CLL/MZL which transformed...

Bajabarb

•4 days ago

25 Replies

starting gazyva and venclexta

starting gazyva and venclexta therapy with first infusion on April 3 at City of Hope. What should I expect?

starting gazyva and venclexta therapy with first infusion on April 3 at City of ...

Vski

•5 days ago

3 Replies

Starting V+O immunotherapy

I'm a U.S. citizen living in Peru, where the only treatment option for my CLL through the government health system would have been chemotherapy. My hemoglobin...

I'm a U.S. citizen living in Peru, where the only treatment option for my CLL th...

jimwilmes

•5 days ago

9 Replies

Travel Insurance with CLL - any recommendations?

We are going to Australia for approx 3 months (staying with friends) leaving in just over a week. We've booked flights and I've just started trawling through...

We are going to Australia for approx 3 months (staying with friends) leaving in ...

Patternista

•5 days ago

23 Replies

Potent new antibiotic Mandimycin overpowers drug-resistant fungal infections

In immunocompromised individuals the risk of a fungal infection, though statistically minor, needs to be taken seriously. If the pathogen is not recognised in...

In immunocompromised individuals the risk of a fungal infection, though statisti...

bennevisplace

•6 days ago

3 Replies

Flugel1 departs at 85years - departure of a jazz legend

Here to report that Stephen Goldberg, playwright and jazz musician ('a Burlington area jazz giant'), flugel1, passed away July 2024 at age 85.His last post:...

Here to report that Stephen Goldberg, playwright and jazz musician ('a Burlingto...

Shedman

•6 days ago

4 Replies

Cll diagnosis

I have recently been told i have cll. I am at the watch and wait stage right now. I was diagnosed 5 weeks ago. 2 weeks ago i came down with a chest infection...

I have recently been told i have cll. I am at the watch and wait stage right now...

R0llerblades

•6 days ago

4 Replies

Any thoughts on these

Hi All Just about to finish Cycle 9 of O & V, any thoughts on these Jules

Hi All Just about to finish Cycle 9 of O & V, any thoughts on these Jules...

TheFlyer

•8 days ago

3 Replies

WBCs and common colds. What to expect?

Hello, first time posting. I’m a mid 50’s female diagnosed in 2022. I’m on W&W for now and feeling physically good. I’m wondering if anyone else has...

Hello, first time posting. I’m a mid 50’s female diagnosed in 2022. I’m on W&W f...

Insanity4578

•9 days ago

14 Replies

The History of Chronic Lymphocytic Leukemia with Dr. Jeff Sharman: Webinar- HealthTree

The HealthTree Foundation will be hosting a webinar centered on the History of Chronic Lymphocytic Leukemia with Dr. Jeff Sharman on Tuesday, March 25th at 5...

The HealthTree Foundation will be hosting a webinar centered on the History of C...

HungryB

•9 days ago

2 Replies

Anemia?

Hi beautiful people! Me again, with another question about this mysterious and confoundedly unpredictable disease. Last time I posted, the hematologist had me...

Hi beautiful people! Me again, with another question about this mysterious and c...

Guffy

•9 days ago

8 Replies

Skin cells make antibodies, too

I was stunned to learn that cells other than B-cells make antibodies. But Mother Nature did not specialize. IgG and IgA with Potential Microbial-Binding...

I was stunned to learn that cells other than B-cells make antibodies. But Mother...

SeymourB

•10 days ago

7 Replies

Living a normal life expectancy with a CLL compromised immune system - the importance of Post-Exposure Prophylaxis (PEP)

With the success of targeted therapies for treating CLL, repairing our compromised immune systems is now considered one of the major remaining challenges in...

With the success of targeted therapies for treating CLL, repairing our compromis...

AussieNeil

Administrator•10 days ago

6 Replies

New Greek consensus statement for the treatment of chronic lymphocytic leukemia

There is now a new consensus statement for the treatment of CLL in Greece. The statement was published on 1 March 2025 and provides treatment recommendations...

There is now a new consensus statement for the treatment of CLL in Greece. The ...

CLLerinOz

Administrator•10 days ago

1 Reply

New diagnosis, a bit of a surprise but makes sense with how I’ve been feeling. Getting my head around the watch and wait

New diagnosis

ThaiGreen

•10 days ago

7 Replies

Venclexta or CLL

I'm 69 diagnosed 8 months ago. 400mg venclexta. Gratefully, the many swollen lymph nodes disappeared weeks after starting infusions. I did seven infusions...

I'm 69 diagnosed 8 months ago. 400mg venclexta. Gratefully, the many swollen ly...

dhamra

•10 days ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2025

CT shock

National Patient Data day conference - June 24 Leeds

update

Nuetropenia level 0. O

2025 Update about Chronic Lymphocytic Leukemia, its epidemiology, pathogenesis, diagnosis and therapy

Cruising Soon (May)

Richters Transformation, RCHOP+VEN?

Car-t adventure continues!

Starting V&O Help!

My mammogram

has anyone gone off and back on Acalabrutinib. How sussessful? How long to get strength back?

Venetoclax and high blood pressure

Has anyone experienced anxiety while on Venetoclax?

17 years in! Vclax vs platelets

Car-T begins tomorrow!

starting gazyva and venclexta

Starting V+O immunotherapy

Travel Insurance with CLL - any recommendations?

Potent new antibiotic Mandimycin overpowers drug-resistant fungal infections

Flugel1 departs at 85years - departure of a jazz legend

Cll diagnosis

Any thoughts on these

WBCs and common colds. What to expect?

The History of Chronic Lymphocytic Leukemia with Dr. Jeff Sharman: Webinar- HealthTree

Anemia?

Skin cells make antibodies, too

Living a normal life expectancy with a CLL compromised immune system - the importance of Post-Exposure Prophylaxis (PEP)

New Greek consensus statement for the treatment of chronic lymphocytic leukemia

New diagnosis, a bit of a surprise but makes sense with how I’ve been feeling. Getting my head around the watch and wait

Venclexta or CLL

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