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CLL Support

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All posts for January 2024

LOW NEUTROPHILS DUE TO VENETOCLAX

MY NEUTROPHILS ARE GETTING LOWER AND LOWER. I STARTED VR treatment 3 months ago My Oncologist asked me to stop taking VENETOCLAX 400mg for 10 days, before...

MY NEUTROPHILS ARE GETTING LOWER AND LOWER. I STARTED VR treatment 3 months ago ...

unairdefamille

•9 months ago

38 Replies

Awe the Sweet things in life

Nature wins the day! So as a medical doc that has studied CLL, the immune system, COVID etc. extensively, I try to answer people with things I understand....

Nature wins the day! So as a medical doc that has studied CLL, the immune syst...

skipro

•9 months ago

38 Replies

Shingles Vaccination UK

Hi I am glad to report that I needed no hospital admissions in 2023 (having had 4 in 2022) Decided after open ended discussion with my GP not to take Covid...

Hi I am glad to report that I needed no hospital admissions in 2023 (having had...

Hihohiho

•9 months ago

27 Replies

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Covid

Hi all I have a dilemma facing me . As you know , I have had covid in the last few weeks and still getting over it . My sons girlfriend is having a party with...

Hi all I have a dilemma facing me . As you know , I have had covid in the last ...

Stavrou1

•9 months ago

40 Replies

Hair Loss on Acalabrutinib

Has anyone suffered significant hair loss while taking this drug? Does the hair loss stop at some point in time. Does the hair regrow? This is the one thing...

Has anyone suffered significant hair loss while taking this drug? Does the hair ...

Vinweesel2023

•9 months ago

14 Replies

COVIDShot

I got a COVID shot yesterday afternoon and woke with chills at 4a.m. Eight hours later and I still feel terrible, chills, back ache, shoulder pain, overall...

I got a COVID shot yesterday afternoon and woke with chills at 4a.m. Eight hours...

Fant1924

•9 months ago

16 Replies

Update

Hi everyone. Many thanks for your help and support on my last post. My husband David is receiving chemotherapy (Vidaza) to improve his blood counts. His MDS...

Hi everyone. Many thanks for your help and support on my last post. My husband...

dwolden

•9 months ago

17 Replies

Venatoclax mono therapy

I'm Interested in the Vanatoclac monetherapy which I am getting right now since summer. I cannot get a straight answer from my oncolog/hematologist at St....

I'm Interested in the Vanatoclac monetherapy which I am getting right now since ...

onu1tadi2

•9 months ago

55 Replies

Should I go to a CLL specialist?

I posted a couple months ago about my family history with CLL but I have found out since then that it is more extensive than I knew. If I am diagnosed with...

I posted a couple months ago about my family history with CLL but I have found o...

sivasvati

•9 months ago

16 Replies

Is it ok to smoke marijuana or to take edibles with cll?

It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two...

It gives me relief from general anxiety and unsettling feeling of going to a me...

Jessielab

•9 months ago

21 Replies

Side effects Acalabrutinib v. Venetoclax

Does anyone have good data on the relative incidence of the following side-effects between Ven and Acal 1. Fatigue 2. Back pain 3. Musculoskeletal muscle...

Does anyone have good data on the relative incidence of the following side-effec...

skipro

•9 months ago

2 Replies

’pimple’ in centre of armpit and cll

hi I have at last got a referral to haematology but have now found a ‘pimple’ like area in centre of armpit. Doc didn’t find anything last week but I thought...

hi I have at last got a referral to haematology but have now found a ‘pimple’ l...

RuthyBabe

•9 months ago

5 Replies

Recurring Lung infection

I have cll and have had chemo 3 years ago with great success. No other problems until last May when I got severe lung infection and since then have had at...

I have cll and have had chemo 3 years ago with great success. No other problems...

Fionamhenry

•9 months ago

7 Replies

splashsplash

UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax

UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2...

splashsplash

•9 months ago

3 Replies

Zanubrutinib. Anyone have side effects?

I’m about to embark on the above Im maybe a months time. Does anyone have experience of taking this drug? thank you Sheila in Oz

I’m about to embark on the above Im maybe a months time. Does anyone have expe...

Elliot43

•9 months ago

7 Replies

stopping Ibrutnib before surgery?

stopping Ibrutinib before surgery?

Tapps

•9 months ago

4 Replies

Shoulder surgery and Ibrutinib, start and stop

I am having shoulder replacement surgery, when should I stop Ibutinib, and when should I restart?

I am having shoulder replacement surgery, when should I stop Ibutinib, and when ...

Tapps

•9 months ago

1 Reply

Large Lympe nodes.

Been on venetoclax for last 20 months and now find myself with large lymphe nodes under arms and painfully in groin area which is restricting artery in leg,...

Been on venetoclax for last 20 months and now find myself with large lymphe node...

Harry9kane

•9 months ago

3 Replies

Update 8 years, since I started the captivate trial, and doing well so far! UMRD. I plus V. Now just on Ibruvica for many years.

Hello, I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable...

Hello, I am pleased to post that it has been 8 years since I started the capti...

Hoffy

•9 months ago

13 Replies

A thought for the new year

We would like to use the start of a new year — a time for reflection — to express our deepest gratitude to all of you, our members, administrators, and...

We would like to use the start of a new year — a time for reflection — to expres...

pkguk2

Partner•9 months ago

21 Replies

Nordic walking

Any views on this - It's supposed to achieve more physical out put for the amount of time spent and per amount of exercise done?

Any views on this - It's supposed to achieve more physical out put for the amoun...

G1llHa1n

•9 months ago

17 Replies

Free Covid Rapid Lateral Flow Test

Does anyone know how to obtain Covid Rapid Lateral Flow Tests free-of-charge in the U.K.? The Gov U.K. site says they are not available direct but are...

Does anyone know how to obtain Covid Rapid Lateral Flow Tests free-of-charge in ...

Richardmint

•9 months ago

32 Replies

Skin Rash

Has anyone developed skin rash from cuvitru injections ? I was receiving weekly injections to boost my immune system and 5 to 6 weeks ago I developed a skin...

Has anyone developed skin rash from cuvitru injections ? I was receiving weekly...

Champlain

•9 months ago

2 Replies

Grant to cover cost of brukinsa

Does anybody (in the USA) know if grant money used to cover medication (Brukinsa) needs to be listed as income on my tax return? I have no idea who provided...

Does anybody (in the USA) know if grant money used to cover medication (Brukinsa...

MyCLLJourney

•9 months ago

11 Replies

Fatigue and Exercise

Has anyone any thoughts. on carrying on exercising, whist going through bad fatigue. I have a daily morning routine which I have been doing since I was...

Has anyone any thoughts. on carrying on exercising, whist going through bad fati...

Vindicatrix

•9 months ago

29 Replies

Ibrutinib,

i have some pills of ibrutinib which expiration date is close, can they be used after the date of expiration and for how long, happy new year.

i have some pills of ibrutinib which expiration date is close, can they be used...

JJSI

•9 months ago

4 Replies

New Year- New Challenges.

Hi all before I begin my 'Saga', I would like to wish you all a 'Better New Year'.😀 I am still waiting for the urgent needle biopsy for the large lump in my...

Hi all before I begin my 'Saga', I would like to wish you all a 'Better New Year...

Vindicatrix

•9 months ago

6 Replies

Update.

I received a call from my haematologist. My white blood cell count has improved but once again my reds are depleting faster than reproducing. On Prednisolne...

I received a call from my haematologist. My white blood cell count has improved ...

Jacksc06

•9 months ago

26 Replies

Addendum to previous post FISH Test

Sorry I did not make clear my question in my previous post because it was late and I was ready to doze off! Lol My question is being my husband had poor...

Sorry I did not make clear my question in my previous post because it was late a...

Debcap61

•9 months ago

2 Replies

Happy new year 2024!

🍀❤️💞

Name-1

•9 months ago

7 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2024

LOW NEUTROPHILS DUE TO VENETOCLAX

Awe the Sweet things in life

Shingles Vaccination UK

Covid

Hair Loss on Acalabrutinib

COVIDShot

Update

Venatoclax mono therapy

Should I go to a CLL specialist?

Is it ok to smoke marijuana or to take edibles with cll?

Side effects Acalabrutinib v. Venetoclax

’pimple’ in centre of armpit and cll

Recurring Lung infection

splashsplash

Zanubrutinib. Anyone have side effects?

stopping Ibrutnib before surgery?

Shoulder surgery and Ibrutinib, start and stop

Large Lympe nodes.

Update 8 years, since I started the captivate trial, and doing well so far! UMRD. I plus V. Now just on Ibruvica for many years.

A thought for the new year

Nordic walking

Free Covid Rapid Lateral Flow Test

Skin Rash

Grant to cover cost of brukinsa

Fatigue and Exercise

Ibrutinib,

New Year- New Challenges.

Update.

Addendum to previous post FISH Test

Happy new year 2024!

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