CLL Support

21,157 members • 36,287 posts

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

•2 days ago

55 Replies

POST 3 - CAR-T cell therapy

Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of...

Since my last post things have been ticking over with regular blood tests, Clini...

casanova

•5 days ago

54 Replies

Good news!

Just reached MRD and can stop the V pills in a few weeks. Woo hoo!!!! Since a trial unfortunately a 3rd Bone Marrow Biopsy. Ugh - but soon to be pill free....

Just reached MRD and can stop the V pills in a few weeks. Woo hoo!!!! Since a ...

Gardengirl44

•4 days ago

41 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 day ago

18 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

•10 hours ago

9 Replies

Alcohol

I have a basic question for our group. Is is alright to have a drink or two each week, or should we abstain completely? Years ago I used to have a drink or...

I have a basic question for our group. Is is alright to have a drink or two eac...

wizzard166

•1 month ago

75 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 day ago

14 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 day ago

14 Replies

ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)

I started Zanubrutinib April 24th, by 5th day noticed painful finger spasms, 7th day got large dark hematoma (brusing not new but larger size & darker color)....

I started Zanubrutinib April 24th, by 5th day noticed painful finger spasms, 7th...

CoachVera55

•29 days ago

57 Replies

Colon cancer as secondary cancer

Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in...

Hi I just got diagnosed with colon cancer last week and I am lucky I will have ...

angelikab

•13 days ago

38 Replies

MRD Test

After 14 months on Acalabrutinib and Venetoclax, C91.10 Chronic lymphocytic leukemia of B-cell type not having achieved remission. Looks like I failed. 😷

After 14 months on Acalabrutinib and Venetoclax, C91.10 Chronic lymphocytic leu...

Lavinia-Blue

•9 days ago

31 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

•2 days ago

13 Replies

Update.

Just returned from a face to face consultation with my haematologist. (The first since pre covid). Bloods are absolutely normal no increase in leukemia cells...

Just returned from a face to face consultation with my haematologist. (The first...

Jacksc06

•1 month ago

48 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

•2 days ago

12 Replies

Travel insurance when in remission

Does anyone have experience of taking out travel insurance when their CLL has been declared as being in deep remission? I'm unsure as to whether or not I still...

Does anyone have experience of taking out travel insurance when their CLL has be...

Sandywhatsit

•12 days ago

27 Replies

when start venclexta

I just did first Obinutuzumab infusion. First day of 100cc hit me hard but second of 900cc was better count of WBC count went from over 12000 to a little over...

I just did first Obinutuzumab infusion. First day of 100cc hit me hard but seco...

sept149

•6 days ago

18 Replies

UK herbal remedy ingredient check by UCL School of Pharmacy: Many poor quality products, though those with the THR label fare better

Do herbal supplements contain what they say on the label?...

AussieNeil

Administrator•18 days ago

30 Replies

W&W, Sepsis, Pneumonia,Cellulitis, FEVERS ! - ???

Had my first visit to the Hematologist . He was patient, he was kind , he was very informative and most important to me , he asked me what my questions and...

Had my first visit to the Hematologist . He was patient, he was kind , he was v...

Seeker090260

•5 days ago

16 Replies

Melatonin

Just wondering if anyone knows anything about melatonin and CLL. I’m reading The Rainbow Diet by Chris Woollams and he mentions it. I did a search on Google...

Just wondering if anyone knows anything about melatonin and CLL. I’m reading Th...

Thursday45

•13 days ago

25 Replies

Hard Mass on my Spleen

My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help...

My first post here .... can hardly believe I'm doing this. Firstly, a big tha...

Gooseman

•15 days ago

26 Replies

Thoughts on Chickenpox

I was with my daughter and grandson this morning and she mentioned Chickenpox was going around. A bit worrying I thought, so best take evasive action having...

I was with my daughter and grandson this morning and she mentioned Chickenpox wa...

Oleboyredw-uk

•22 days ago

31 Replies

Gardening hazards

A couple of weekends ago something in the garden penetrated the skin of my fingertip, which then turned septic. When I could feel the infection spreading down...

A couple of weekends ago something in the garden penetrated the skin of my finge...

bennevisplace

•5 days ago

15 Replies

Ibrutinib - Excessive Itching

My husband was diagnosed with CLL in Jan 2019. He began on daily Ibrutinib about a year later. About a year ago he started having severe itching that makes...

My husband was diagnosed with CLL in Jan 2019. He began on daily Ibrutinib abou...

macarr45

•28 days ago

34 Replies

more serious side effect of Zanubrutinib

Its Day 13 & I needed to get moving with my exercise since I seen a 5lb weight gain. On Day 12 I did 45min walk on my Treadclimber but not over 1 mile/hour....

Its Day 13 & I needed to get moving with my exercise since I seen a 5lb weight g...

CoachVera55

•1 month ago

37 Replies

Severe reaction to Phiser 6th jab.

Hi All I don't know who I was posting to on this subject, so I will put it out there for all to see, it may be helpful to some. On my 4th and 5th Phiser, I...

Hi All I don't know who I was posting to on this subject, so I will put it out t...

Vindicatrix

•14 days ago

24 Replies

weirdness with exercise

rejoined my gym to try to get strength exercise into my life. It’s a gym with hard 45 min classes after three weeks of constant soreness (having difficulty...

rejoined my gym to try to get strength exercise into my life. It’s a gym with ha...

Mend123

•5 days ago

13 Replies

When is it time?

This is more about my experience with W&W and hopefully it might help others who might be on watch and wait. Everyone is different and as we know, deciding...

This is more about my experience with W&W and hopefully it might help others who...

Rico49

•5 days ago

14 Replies

Diet options

OH has CLL, diagnosed 2014, treated RFC 2017. Nearly didn't make it after dreadful Covid in 2020, but is tenacious and determined and, thank heavens, he was...

OH has CLL, diagnosed 2014, treated RFC 2017. Nearly didn't make it after dread...

shoppingtrolley

•11 days ago

20 Replies

While on Watch and Wait

When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see...

When you are newly diagnosed with CLL , is it normal to be placed on W&W and not...

Seeker090260

•1 month ago

33 Replies

a success story ❤️

https://www.walesonline.co.uk/news/real-life/cancer-spread-over-stephens-body-26955077 Not sure if I am allowed to post this link here, but it was very...

https://www.walesonline.co.uk/news/real-life/cancer-spread-over-stephens-body-26...

Lellyandme

•20 days ago

26 Replies

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CLL & Beer

POST 3 - CAR-T cell therapy

Good news!

POST 4 - CAR-T cell therapy

How is "remission" defined for CLL?

Alcohol

CLL and probiotics

Any experiences with Venetoclax?

ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)

Colon cancer as secondary cancer

MRD Test

COVID Jab Reaction

Update.

Dave Barry: A journey into my colon - and yours

Travel insurance when in remission

when start venclexta

UK herbal remedy ingredient check by UCL School of Pharmacy: Many poor quality products, though those with the THR label fare better

W&W, Sepsis, Pneumonia,Cellulitis, FEVERS ! - ???

Melatonin

Hard Mass on my Spleen

Thoughts on Chickenpox

Gardening hazards

Ibrutinib - Excessive Itching

more serious side effect of Zanubrutinib

Severe reaction to Phiser 6th jab.

weirdness with exercise

When is it time?

Diet options

While on Watch and Wait

a success story ❤️

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