Posts - CLL Support | HealthUnlocked

CLL Support

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Cough

Hello! I am from Argentina. I have been taking CLL since 2007 and have been taking ibrutinib since 2017. At first I took 3 pills, and for the last year I have...

Hello! I am from Argentina. I have been taking CLL since 2007 and have been taki...

Bixilon

•3 hours ago

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surgery with CLL

Hi to the CLL community , I am now 6 months into remission after a year of V and O and have seen a surgeon who recommends that I consider a bowel resection...

Hi to the CLL community , I am now 6 months into remission after a year of V an...

puppy43

•4 hours ago

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Diagnosed with Richters follow up - great news

Late April prior to treatment September after 4 cycles This is an update to my...

Late April prior to treatment ...

Louie_CC

•4 hours ago

4 Replies

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Starting on Calquence

I have been following this group for over 2 years w/wait. I have learned alot from members. Thank you. I started treatment about 10 days ago - Calqence....

I have been following this group for over 2 years w/wait. I have learned alot f...

Snickers23

•10 hours ago

1 Reply

I got this further information from the doctor. Can anybody interpret it for me?

I learned that I am IGHV mutated / TP53 unmutated, then received the following additional results without much commentary. Is anybody able to help interpret...

I learned that I am IGHV mutated / TP53 unmutated, then received the following a...

Fred_Green

•23 hours ago

5 Replies

IVIg?

Hi fellow travelers, I have questions about IVIg. I never had IgG levels checked at diagnosis, in 2014. I’ve had frequent infections over the years, and then...

Hi fellow travelers, I have questions about IVIg. I never had IgG levels checked...

Islandjewel23

•23 hours ago

5 Replies

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

•1 day ago

3 Replies

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

•1 day ago

21 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

•1 day ago

9 Replies

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

•2 days ago

2 Replies

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

•2 days ago

5 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

•2 days ago

4 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

•3 days ago

25 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

•3 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

•3 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

•4 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

•4 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

•4 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

•4 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

•4 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

•4 days ago

5 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

•5 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

•5 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

•5 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

•5 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

•6 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

•6 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

•6 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

•6 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

•7 days ago

9 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

Cough

surgery with CLL

Diagnosed with Richters follow up - great news

Starting on Calquence

I got this further information from the doctor. Can anybody interpret it for me?

IVIg?

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

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