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CLL Support

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All posts for February 2023

6 Weeks on Acalabrutinib

I have been on acalabrutinib for 6 weeks and I have had min side effects. My white blood cells went from 80 to 380 after 4 weeks. My platelets went from 80 to...

I have been on acalabrutinib for 6 weeks and I have had min side effects. My whi...

Rrriver

•1 year ago

6 Replies

Information appreciated

My wife aged (68) recently had a blood test with the results (Friday 10) she has polymyalgia and is has a compromised immune system written on the results...

My wife aged (68) recently had a blood test with the results (Friday 10) she ha...

Roto

•1 year ago

11 Replies

Insomnia

Hello friendsn under ibrutinube tgerapy for about 2 yrs. for 11 q delitiin. Underwent TURP in Oct 22. Eversince restful sleep has become a problem. Tried...

Hello friendsn under ibrutinube tgerapy for about 2 yrs. for 11 q delitiin. Unde...

GargR

•1 year ago

7 Replies

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Covid finally got me.

After three years of not getting Covid, it finally happened. My symptoms have been mild so far (low grade fever and feeling warm) and I just picked up some...

After three years of not getting Covid, it finally happened. My symptoms have b...

Dexterdoggg

•1 year ago

14 Replies

RMD Spain

Hi!!Does anyone know if those results mean Minimal Residual Disease? or what? Thank you.

Hi!!Does anyone know if those results mean Minimal Residual Disease? or what? Th...

Denisguay

•1 year ago

5 Replies

IVIG after heart surgery and stopping IBRUTIMIB

12 months ago I was on an Ibrutinib clinical trial for my CLL. Ibrutinib worked great for me for years. I found out I needed a triple bypass due to 95% LAD...

12 months ago I was on an Ibrutinib clinical trial for my CLL. Ibrutinib worked ...

misterbee

•1 year ago

6 Replies

Post Covid Problems

I am 82 and been in remission since July 2020. This past Dec. I contacted Covid and the same day started anti viral meddication. The accual bout of Covid was...

I am 82 and been in remission since July 2020. This past Dec. I contacted Covid ...

laldoroty

•1 year ago

6 Replies

New to this

Hi All, I'm so new to this that I'm still in the diagnosis phase. Went in for regular blood work today and came back with lymphocytes at 7.7K, low monos,...

Hi All, I'm so new to this that I'm still in the diagnosis phase. Went in for ...

Horsechestnut

•1 year ago

14 Replies

What shall i do??

Hello, I,m René from holland. I get the diagnose cll in november 2019. I have a 11 ATM deletion, en unmutated. My blood results and a ct scan gives the...

Hello, I,m René from holland. I get the diagnose cll in november 2019. I have a...

Renefaassen

•1 year ago

39 Replies

CLL and CGD

I recently had a CT scan and the results say I have an inherited disease called Chronic granulomatous Disease (CGD) where white blood cell (phagocyte) that...

I recently had a CT scan and the results say I have an inherited disease called ...

MyCLLJourney

•1 year ago

2 Replies

Anti Covid treatments for the Immuno-compromised

I wrote the following to my MP on 22nd November last David , we have corresponded about this many times, and I know you are sympathetic to the problem....

I wrote the following to my MP on 22nd November last David , we have correspo...

RogerPinner

•1 year ago

24 Replies

Burning sensation in feet - Acalabrutinib

Been taking Acalabrutinib for three weeks (along with Allopurinol and anti viral and anti bacterial). Second line treatment after cll relapse. Almost no side...

Been taking Acalabrutinib for three weeks (along with Allopurinol and anti viral...

Savagebikenut

•1 year ago

4 Replies

follow up !!!

just back home from mD Anderson Both bone marrow and PET scan showed no detected cancer Hopefully this will last a long time Thanks everyone 😎

just back home from mD Anderson Both bone marrow and PET scan showed no detect...

Cactusroadster

•1 year ago

13 Replies

cost of Imbruvica

Well, Medicare paid $12,000 a month on my first five months on Imbruvica, and a health foundation covered the remaining $3,000 a month. Now I ‘be been told...

Well, Medicare paid $12,000 a month on my first five months on Imbruvica, and a ...

DogmomLM

•1 year ago

39 Replies

Time-limited Pirtobrutinib triple for treatment naive CLL or Richters at M.D. Anderson

https://clinicaltrials.gov/ct2/show/NCT05536349 After several false starts, we're driving to Houston next week for the pre-trial screening blood tests, CT,...

https://clinicaltrials.gov/ct2/show/NCT05536349 After several false starts, we'...

SeymourB

•1 year ago

25 Replies

Newly diagnosed with CLL

Hi everyone, As I have been recently diagnosed (Dec 23rd 2022)I just wanted to drop a quick post on here to introduce myself and Thank you for the lovely...

Hi everyone, As I have been recently diagnosed (Dec 23rd 2022)I just wanted to ...

The_simple_life

•1 year ago

17 Replies

Research Evaluating Risk of Richter Syndrome

Apologies if this has been posted before, do feel free to delete and re-direct me if so. It is of particular interest to me because my recent experience...

Apologies if this has been posted before, do feel free to delete and re-direct m...

jonathan7176

•1 year ago

5 Replies

On ramp for night sweats?

Hello friends, In January I contracted Covid after spending nearly three years. After a day of a stuffy nose and a bite of a bagel that tasted like...

Hello friends, In January I contracted Covid after spending nearly three years....

Ptown

•1 year ago

6 Replies

Alcohol

ventoclax and alcohol

Anthonyparr

•1 year ago

4 Replies

tiredness

I was diagnosed with stage A CLL in July 2022. At present on W&W. Which I am obviously very grateful for. The only problem is the tiredness. I’m told by the...

I was diagnosed with stage A CLL in July 2022. At present on W&W. Which I am obv...

Wilcop

•1 year ago

10 Replies

Update on my skin rash

Went dermatology today at my local hospital after being referred by my GP about the terrible rash I had all over my body from November'thankfully it's going...

Went dermatology today at my local hospital after being referred by my GP about ...

cartwheels

•1 year ago

14 Replies

Náusea and Malaise

Does anyone know the cause of the nausea, malaise, and brain fog? I'm taking only 140 mg of ibrutinib for 3 months and I don't feel better... no appetite in...

Does anyone know the cause of the nausea, malaise, and brain fog? I'm taking onl...

Denisguay

•1 year ago

4 Replies

Respirator / Mask for travel & extended time in high COVID-19 risk environments

While preparing for my first international travel since 2019, my own respirator (masking) research has identified the 3 following items as better than most of...

While preparing for my first international travel since 2019, my own respirator ...

lankisterguy

Volunteer•1 year ago

20 Replies

COVID - Infectious or Not

I tested positive for COVID on the 26th Dec. Some 6 weeks later I am still showing a very faint line on a LFT. My question is, am I still infectious? My...

I tested positive for COVID on the 26th Dec. Some 6 weeks later I am still show...

RobertCLL

•1 year ago

10 Replies

skiing holiday

recently diagnosed aged 73 and am w@w. I feel fit and well apart from when I pick up a cold which I have done a couple of times recently. We have a long...

recently diagnosed aged 73 and am w@w. I feel fit and well apart from when I pic...

PishySue

•1 year ago

5 Replies

off topic- beautiful movie

After a very stressful two months of medical appointments and worry, I am starting to try to live again. I saw the movie A Man Called Otto with a friend...

After a very stressful two months of medical appointments and worry, I am start...

Raleigh59

•1 year ago

5 Replies

⁹Low Platelets and MCH in daughter's blood test

Hi all,I am on W&W 2 years and I am worried that CLL might have some links to being inherited? My specialist says it does not but I have read on here somewhere...

Hi all,I am on W&W 2 years and I am worried that CLL might have some links to be...

Titian72

•1 year ago

12 Replies

Night shift work

Hello. I work evenings on a hospital nursing unit. I am scheduled to work one night every two weeks. I will remain on evenings and do this cross shift in...

Hello. I work evenings on a hospital nursing unit. I am scheduled to work one ...

Taza1

•1 year ago

6 Replies

Fluconozale

Does anyone know anything about the use of this anti-fungal ( fluconozale) that helps with the absorption of ibrutinib or venetoclax ? It seems like it means...

Does anyone know anything about the use of this anti-fungal ( fluconozale) that ...

Kiwidi

•1 year ago

7 Replies

Wiggynugget

Does anyone know if it's safe to take Advil. When your on Venetoclax for CLL

Wiggynugget

•1 year ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2023

6 Weeks on Acalabrutinib

Information appreciated

Insomnia

Covid finally got me.

RMD Spain

IVIG after heart surgery and stopping IBRUTIMIB

Post Covid Problems

New to this

What shall i do??

CLL and CGD

Anti Covid treatments for the Immuno-compromised

Burning sensation in feet - Acalabrutinib

follow up !!!

cost of Imbruvica

Time-limited Pirtobrutinib triple for treatment naive CLL or Richters at M.D. Anderson

Newly diagnosed with CLL

Research Evaluating Risk of Richter Syndrome

On ramp for night sweats?

Alcohol

tiredness

Update on my skin rash

Náusea and Malaise

Respirator / Mask for travel & extended time in high COVID-19 risk environments

COVID - Infectious or Not

skiing holiday

off topic- beautiful movie

⁹Low Platelets and MCH in daughter's blood test

Night shift work

Fluconozale

Wiggynugget

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