Posts - CLL Support | HealthUnlocked

CLL Support

22,676 members • 38,921 posts

All posts for June 2023

Stem cell transplant starts on Monday

A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib...

A bit of background - In October 2021 I had a rapid and florid relapse following...

Jm954

Administrator•1 year ago

269 Replies

another great success story

https://www.msn.com/en-us/health/medical/gene-editing-pencil-saves-two-teenagers-dying-from-cancer-putting-their-leukemia-in-remission/ar-AA1czifu?li=BBnb7Kz

https://www.msn.com/en-us/health/medical/gene-editing-pencil-saves-two-teenagers...

craterlake

•1 year ago

5 Replies

Does CLL leave you more vulnerable to allergies?

Hi everyone Does anyone know if our condition means we’re more susceptible to allergies? I’m really struggling at the moment with what appears to be hay...

Hi everyone Does anyone know if our condition means we’re more susceptible to ...

Miu48

•1 year ago

27 Replies

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cold sweats

I was just wondering why my husband is getting cold sweats. He is shivering and it’s so hot today! What is causing the lack of temperature regulation? He is...

I was just wondering why my husband is getting cold sweats. He is shivering and ...

Porty14

•1 year ago

10 Replies

CAR-T for CLL Hits Goal of Mid-Stage Trial - All patients had progressed on BTK inhibitors & most had failed venetoclax - MedPageToday, 6/12

Looks like good news for those who have failed SOC. More options are always good. SEs sound daunting, however, as "manageable" does not instill confidence...

Looks like good news for those who have failed SOC. More options are always good...

cujoe

•1 year ago

6 Replies

What, who and how much should you tell?

I have long advocated telling people as little as they really need to know and keeping quiet about CLL for the rest. I am in the process of renewing...

I have long advocated telling people as little as they really need to know and k...

SERVrider

•1 year ago

14 Replies

mood and cll

Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience...

Isn't it interesting how when you are in your disease treatment period, you just...

Gardengirl44

•1 year ago

37 Replies

Probiotics

Has there been any medical papers on the efficacy, (Or not) of Probiotics and CLL. I have been taking half a bottle of Keffir a day for two months, which...

Has there been any medical papers on the efficacy, (Or not) of Probiotics and CL...

Vindicatrix

•1 year ago

12 Replies

Tetanus booster shot, UK

In a response to a recent post, https://healthunlocked.com/cllsupport/posts/149590895/gardening-hazards?responses=149591131 I was alerted to the importance of...

In a response to a recent post, https://healthunlocked.com/cllsupport/posts/149...

bennevisplace

•1 year ago

17 Replies

Rash spreading all over my body.

Hello Friends, It’s been a long time since I have posted (I think). I have a rash spreading all over my body. It started on one side of the face (stroke...

Hello Friends, It’s been a long time since I have posted (I think). I have a...

Jonquiljo

•1 year ago

17 Replies

Calquence / acalabrutinib and Brukinsa / zanubrutinib Adverse Event Comparison for Chronic Lymphocytic Leukaemia / CLL from clinical trials

Now that we have a growing choice of BTK inhibitor treatment options, naturally the question is which one is better? Based on this meta-analysis study of the...

Now that we have a growing choice of BTK inhibitor treatment options, naturally ...

AussieNeil

Administrator•1 year ago

4 Replies

VENOTOCLAX +

Because of afib due to Ibrutinib and Acalabrutinib and visits in ER, my oncologist is thinking of a combo of Venotoclax paired with another med. Is anyone here...

Because of afib due to Ibrutinib and Acalabrutinib and visits in ER, my oncologi...

unairdefamille

•1 year ago

11 Replies

Deleted Post

Why was Mrs dawn posting taken down? I was not afforded the opportunity to read it.

Why was Mrs dawn posting taken down? I was not afforded the opportunity to read ...

Floydpup

•1 year ago

9 Replies

Probiotics with extended duration IV antibiotics

My husband was diagnosed with staph in his lungs and, after a scary hospital visit, it seems to have enjoyed an extended stay in his body. He came home with a...

My husband was diagnosed with staph in his lungs and, after a scary hospital vis...

OaktownA

•1 year ago

3 Replies

Cosentyx

I have been on WW CLL for about ten years. With wbc ranging from 13 to 28. I recently started injecting Cosentyx for a bad case of psoriasis. I previously was...

I have been on WW CLL for about ten years. With wbc ranging from 13 to 28. I rec...

Hidden

•1 year ago

6 Replies

Total Knee Replacement and CLL Connected?

Hi Everyone. I was diagnosed w/CLL in July 2021. I'm on Calquence. I had knee replacement in March 2023 and am still reeling from pain, scar tissue buildup and...

Hi Everyone. I was diagnosed w/CLL in July 2021. I'm on Calquence. I had knee re...

Naisy

•1 year ago

13 Replies

First Haematology with cosultant questions?

Hi, Have got the above this week,does anyone in Glasgow know if my consultant is a CLL specialist....Dr Christopher Mcdermott? Also what to expect on my first...

Hi, Have got the above this week,does anyone in Glasgow know if my consultant i...

Bankiedonnie67

•1 year ago

2 Replies

Calequence sores

On calaquence a reduced dose since January. Starting to develop sores over my body. Anyone else have this? What can I do to make them go away. I have had a...

On calaquence a reduced dose since January. Starting to develop sores over my bo...

gymbunny1

•1 year ago

3 Replies

Covid Vaccines

Hi Anyone have any comments about taking a 6 covid vaccine? After 5 vaccines is it necessary to take another one? Will it really protect CLL people?

Hi Anyone have any comments about taking a 6 covid vaccine? After 5 vaccines is...

Kmegood

•1 year ago

50 Replies

Zanubrutnib

Has anyone been on Zanubrutnib, post Ibrutnib? Or know of it? It is apparently a new front line 'trial'?

Has anyone been on Zanubrutnib, post Ibrutnib? Or know of it? It is apparently a...

Fwanni

•1 year ago

20 Replies

Anyone on W&W with CLL have sudden acute diarrhea?

I have CLL/SLL, and am on watch & wait. I have had a sudden bout of acute diarrhea lasting about 2-1/2 weeks. Things are better, but I do not feel entirely...

I have CLL/SLL, and am on watch & wait. I have had a sudden bout of acute diarrh...

Bar68

•1 year ago

9 Replies

PROPAFENONE, anti arhythmia meds to counter the side effect of Acalabrutinib on the heart.

Has anyone been treated for arhythmia while being on Calquence - Acalabrutinib to avoid going to ER?

Has anyone been treated for arhythmia while being on Calquence - Acalabrutinib t...

unairdefamille

•1 year ago

6 Replies

How is "remission" defined for CLL?

After being on Ibrutinib for 8 months, my numbers are all back in the normal range. My oncologist refuses to say I'm in remission, and simply says that if I...

After being on Ibrutinib for 8 months, my numbers are all back in the normal ran...

Living2

•1 year ago

46 Replies

CLL and probiotics

Hi all, I am currently on Amox/Clav aka Augmentin for a diverticulitis attack. Usually, I'd take a probiotic concurrently. But I see some indication that CLL...

Hi all, I am currently on Amox/Clav aka Augmentin for a diverticulitis attack. U...

Horsechestnut

•1 year ago

16 Replies

POST 4 - CAR-T cell therapy

This is a very quick update for anyone who may be following my journey and possibly expecting a progress post in the next week or so. Sadly my admission, due...

This is a very quick update for anyone who may be following my journey and possi...

casanova

•1 year ago

26 Replies

Any experiences with Venetoclax?

I'm 58 YOA female and I have high risk CLL. I have been on Imbrutinib for over 9 years and it's starting to fail. Currently stable with WBC 70-80k. Doctors...

I'm 58 YOA female and I have high risk CLL. I have been on Imbrutinib for over ...

JuJubee4life

•1 year ago

17 Replies

Dave Barry: A journey into my colon - and yours

A plagiarised version of an article by Dave Barry, published in the Miami Herald in 2008, appeared in one of my newsfeeds recently. I thought I'd share it...

A plagiarised version of an article by Dave Barry, published in the Miami Herald...

bennevisplace

•1 year ago

12 Replies

COVID Jab Reaction

Hi I have CLL, diagnosed some 3 years ago. I've just had my COVID Summer booster jab and as a result have been in bed for 2 days totally wiped out, I'm still...

Hi I have CLL, diagnosed some 3 years ago. I've just had my COVID Summer booste...

K6Sailor

•1 year ago

16 Replies

CLL & Beer

Newly Diagnosed, currently in watch & wait. Anyone have an opinion on beer & CLL? I'm a light drinker but I usually have beer on weekends (mostly light...

Newly Diagnosed, currently in watch & wait. Anyone have an opinion on beer &...

joneill77

•1 year ago

67 Replies

weight gain and elevated blood glucose level on venetoclax treatment

I am a half way through on V treatment and my blood numbers and spleen size. are already in a normal range. But my blood glucose level became elevated from...

I am a half way through on V treatment and my blood numbers and spleen size. are...

Belkin123

•1 year ago

15 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2023

Stem cell transplant starts on Monday

another great success story

Does CLL leave you more vulnerable to allergies?

cold sweats

CAR-T for CLL Hits Goal of Mid-Stage Trial - All patients had progressed on BTK inhibitors & most had failed venetoclax - MedPageToday, 6/12

What, who and how much should you tell?

mood and cll

Probiotics

Tetanus booster shot, UK

Rash spreading all over my body.

Calquence / acalabrutinib and Brukinsa / zanubrutinib Adverse Event Comparison for Chronic Lymphocytic Leukaemia / CLL from clinical trials

VENOTOCLAX +

Deleted Post

Probiotics with extended duration IV antibiotics

Cosentyx

Total Knee Replacement and CLL Connected?

First Haematology with cosultant questions?

Calequence sores

Covid Vaccines

Zanubrutnib

Anyone on W&W with CLL have sudden acute diarrhea?

PROPAFENONE, anti arhythmia meds to counter the side effect of Acalabrutinib on the heart.

How is "remission" defined for CLL?

CLL and probiotics

POST 4 - CAR-T cell therapy

Any experiences with Venetoclax?

Dave Barry: A journey into my colon - and yours

COVID Jab Reaction

CLL & Beer

weight gain and elevated blood glucose level on venetoclax treatment

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