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CLL Support

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Allopurinol

Hi Tedrog, I also started allopurinol when I started my Acalabrutinib one and a half years ago. It took almost a year for my lymphocytes to go down, so I...

Hi Tedrog, I also started allopurinol when I started my Acalabrutinib one and a ...

Islandjewel23

•43 minutes ago

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Acalabrutinib side effects

I posted recently that I had been diagnosed with gout in big toe and so came off Acalabrutinib for a week whilst I took the medication. Before the gout...

I posted recently that I had been diagnosed with gout in big toe and so came off...

Eucalyptus22

•6 hours ago

7 Replies

On a break from Ibrutinib

I stopped taking Ibrutinib in February 2024. After five and a half years the side effects got the better of me. I've been followed up by my haematologist every...

I stopped taking Ibrutinib in February 2024. After five and a half years the sid...

Beattiem-UK

•10 hours ago

5 Replies

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A really good basic CLL 101 test and treatment video

This may be the simplest and best explanation of the basics I've watched. Clear and concise explanations. It can't out do Cajunjeff's CLL for dummies, but if...

This may be the simplest and best explanation of the basics I've watched. Clear...

BigfootT

•1 day ago

1 Reply

IGHV mutated / TP53 unmutated

Just got further test results back and heard I have mutated IGHV and unmutated TP53. IPI stage 0. The consultant said this is a positive outcome and go onto a...

Just got further test results back and heard I have mutated IGHV and unmutated T...

Fred_Green

•1 day ago

4 Replies

Zanubrutinib and kidney stones

I have been on Zanubrutinib for four years and my blood results are normal. In the last month, I have been urinating blood and CT scans show kidney stones....

I have been on Zanubrutinib for four years and my blood results are normal. In t...

CorbetCat

•1 day ago

2 Replies

ABBV-101 update

Hi, I wanted to let you know that I'm faring well with the blood test results on the trial thus far, and have my energy back which is great. I hate the...

Hi, I wanted to let you know that I'm faring well with the blood test results o...

Schubert1870

•2 days ago

24 Replies

Not allowed to have the RSV Vaccine

Yesterday I emailed my GP (Archers Practice in Eastleigh, Hampshire, UK) to request the RSV vaccine. I am 69 and have CLL and COPD and I'm a type 1 Diabetic,...

Yesterday I emailed my GP (Archers Practice in Eastleigh, Hampshire, UK) to requ...

Maranman

•2 days ago

12 Replies

Relieved!

just had CT scan to access pain and discomfort. All good! Also, lymph nodes decreased in size about 50%. My doctor attributes the pain to Zanubrutinib side...

just had CT scan to access pain and discomfort. All good! Also, lymph nodes decr...

Nana1961

•2 days ago

6 Replies

Chemo-Free Triplet Yields 68% Response Rate in Richter Transformation

Original article citation: Tedeschi, A., Frustaci, A. M., Condoluci, A., Coscia, M., Chiarle, R., Zinzani, P. L., Motta, M., Gaidano, G., Quaresmini, G.,...

Original article citation: Tedeschi, A., Frustaci, A. M., Condoluci, A., Cosci...

Classicaljazz

•3 days ago

1 Reply

persistent expectoration + venetoclax

Dear all, has anyone been taking venetoclax and gotten a kind of persistent expectoration and sometimes a cough, especially at night? I still haven't figured...

Dear all, has anyone been taking venetoclax and gotten a kind of persistent expe...

BMFCDRW

•3 days ago

6 Replies

cataract surgery while on Zanubrutinib

I am having cataract surgery on my right eye in about a month. I will discuss at my next oncology visit how long I have to stop Zanubrutinib, but I wanted to...

I am having cataract surgery on my right eye in about a month. I will discuss a...

Bethsaida

•3 days ago

7 Replies

colonoscopy

The operation isn’t painful or difficult so don’t despair. I think with all the interventions we’ve been through with our CLL it’s another operation that...

The operation isn’t painful or difficult so don’t despair. I think with all the ...

dontruminate

•3 days ago

12 Replies

Rituximab and high blood pressure

Can Rituximab cause your blood pressure to go high? At the end of a Rituximab treatment blood pressure had gone up quite high and is still high three days...

Can Rituximab cause your blood pressure to go high? At the end of a Rituximab tr...

Redkatt

•3 days ago

3 Replies

Consistenly low platelets and neutrophils

As this website is a wonderful source of support and knowledge for those with Lymphoma I’m hoping someone will have some useful information/advice for me. I...

As this website is a wonderful source of support and knowledge for those with L...

Penicillen

•3 days ago

2 Replies

Appetite, weight, energy....

So, I am 13q deletion, mutated, watch and wait for about 7 years. Latest white count 53.6 and it is going up quite slowly. I've been told sudden inexplicable...

So, I am 13q deletion, mutated, watch and wait for about 7 years. Latest white c...

battanim

•4 days ago

9 Replies

How do they decide which treatment?

Hello. Back on August 21 at my bi-annual hematology checkup, my hematologist said she wanted to see me again in six weeks because my WBC had gone from 25.1...

Hello. Back on August 21 at my bi-annual hematology checkup, my hematologist sai...

Myfavoritecat

•4 days ago

9 Replies

CLL treatment

Hi all I was diagnosed with CLL in 2021 & was on watch& wait until jan this year.I had a blood test & went to see a haemotologist .Bythis time my wbc was 600...

Hi all I was diagnosed with CLL in 2021 & was on watch& wait until jan this yea...

Grandadsboys

•4 days ago

18 Replies

Is there anyone with experience in bladder cancer treatment?

I am 74 and in CLL remission after a 24-month course of Venetoclax plus Rituximab completed in September 2023. In July 2023 I was diagnosed with low grade,...

I am 74 and in CLL remission after a 24-month course of Venetoclax plus Rituxima...

RamsesII

•4 days ago

7 Replies

Continued Journey

First, thank you to all of people that send me encouraging comments. I understand in your heart and minds the empathy and wishful thoughts everyone has on this...

First, thank you to all of people that send me encouraging comments. I understan...

FiArt12X

•5 days ago

4 Replies

Venclexa side effects

I’m on gazyva and 100 mg venclexta. I’ve had no side effects at al. But the past 2 days my arms and upper legs were it hi g. Benadryl took it away. I’m...

I’m on gazyva and 100 mg venclexta. I’ve had no side effects at al. But the p...

elm1

•5 days ago

2 Replies

Two weeks, no change in WBC

This is just an update. Yesterday, Friday, I had my blood tested again and there was absolutely no change in white blood cell counts, (123 on August 30 and 123...

This is just an update. Yesterday, Friday, I had my blood tested again and there...

Tajie

•5 days ago

1 Reply

Gilly

I currently have CLL & was diagnosed in December 2022. I’m in good health & have regular blood tests then I see my haematologist. I’m on watch & wait. I...

I currently have CLL & was diagnosed in December 2022. I’m in good health & have...

Brugeslover

•5 days ago

6 Replies

Abs Lymphs going up after shingles

We saw the doctor for the first time after having shingles. Before shingles his Abs. Lymphs were 2.3 1000/mm3. Now 5 months later it is 3.5 1000/mm3. The...

We saw the doctor for the first time after having shingles. Before shingles h...

Pinhead1

•6 days ago

9 Replies

I am still waiting for my CT scan results.

I am still awaiting my CT scan results which were done 4 weeks ago now. Hoping no news is good news for me? Started seeing a Psychiatrist this week to help me...

I am still awaiting my CT scan results which were done 4 weeks ago now. Hoping n...

Curry777

•6 days ago

15 Replies

Weight loss after Covid

Hi everyone I had covid in June also with a relapse after taking Paxlovid, and lost 3 KG in weight,no matter how much I eat its staying the same and not going...

Hi everyone I had covid in June also with a relapse after taking Paxlovid, and ...

Kiwi77

•7 days ago

1 Reply

still positive for covid

was negative after 8 days for 2 days then have what I am pretty sure is a covid rebound. It is day 14 and am still very positive on a test. How long do most...

was negative after 8 days for 2 days then have what I am pretty sure is a covid ...

ap64

•7 days ago

15 Replies

Real-world treatment switching and sequencing to next line of therapy of zanubrutinib, acalabrutinib, and ibrutinib in CLL/SLL

Acalabrutinib (Calquence) and zanubrutinib (Brukinsa) have been found to be much better tolerated than than ibrutinib, with lower adverse event and side effect...

Acalabrutinib (Calquence) and zanubrutinib (Brukinsa) have been found to be much...

AussieNeil

Administrator•7 days ago

2 Replies

NIH visit and Richters discussion

As some of you have posted about previously, today I also entered the NIH natural history study for CLL. The visit was good, efficient and pretty painless....

As some of you have posted about previously, today I also entered the NIH natura...

BigfootT

•8 days ago

10 Replies

efudex ( fluorouracil 5)

My dermatologist has suggested and prescribed the above medications for my face and neck for my ongoing battle with actinic keratosis and squamous cell...

My dermatologist has suggested and prescribed the above medications for my face ...

Claybuster

•8 days ago

16 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

Allopurinol

Acalabrutinib side effects

On a break from Ibrutinib

A really good basic CLL 101 test and treatment video

IGHV mutated / TP53 unmutated

Zanubrutinib and kidney stones

ABBV-101 update

Not allowed to have the RSV Vaccine

Relieved!

Chemo-Free Triplet Yields 68% Response Rate in Richter Transformation

persistent expectoration + venetoclax

cataract surgery while on Zanubrutinib

colonoscopy

Rituximab and high blood pressure

Consistenly low platelets and neutrophils

Appetite, weight, energy....

How do they decide which treatment?

CLL treatment

Is there anyone with experience in bladder cancer treatment?

Continued Journey

Venclexa side effects

Two weeks, no change in WBC

Gilly

Abs Lymphs going up after shingles

I am still waiting for my CT scan results.

Weight loss after Covid

still positive for covid

Real-world treatment switching and sequencing to next line of therapy of zanubrutinib, acalabrutinib, and ibrutinib in CLL/SLL

NIH visit and Richters discussion

efudex ( fluorouracil 5)

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