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CLL Support

23,347 members•40,066 posts

All posts for January 2024

very mild discomfort in spleen area

Hi folks I have been diagnosed with CLL for two years now.I have been taking Ibrutinib for those two years . Just recently I have noticed...

Hi folks I have been diagnosed with CLL for two years now....

Dyba

•10 months ago

5 Replies

start new medicine Venetoclaz

I was on Calquence for 6 months, my CBC was elevated. My doctor switched me to Venetoclaz. Hope this one will work.

I was on Calquence for 6 months, my CBC was elevated. My doctor switched me to V...

farber

•10 months ago

3 Replies

good news

I had my results today from O and V treatment. it’s been a bit of a slog with nausea and sepsis a couple of times . All worth it , MRD was the outcome . I...

I had my results today from O and V treatment. it’s been a bit of a slog with n...

jillybird13

•10 months ago

21 Replies

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A simple life with Acalabrutinib?

Hi! As an 80 year old guy living (happily) in a rural backwater, I’m 100 miles of slow unpredictable travel away from my haematologist and the associated...

Hi! As an 80 year old guy living (happily) in a rural backwater, I’m 100 miles o...

Fogey

•10 months ago

33 Replies

Proggresion from 1st treatment

My bloods are all going the wrong way and my consultant is talking about possible next treatment after 6.75 years on Ibrutinib. Now I have not been well last...

My bloods are all going the wrong way and my consultant is talking about possibl...

cartwheels

•10 months ago

6 Replies

Coming Off Calquence (

I was put on Calquence (acalabrutinibam) 2 years ago due to Hemolytic Anemia. We tried prednisone for 3 years but every time they took me off my hemoglobin...

I was put on Calquence (acalabrutinibam) 2 years ago due to Hemolytic Anemia. We...

susq9948

•10 months ago

11 Replies

Obinutuzimab - anyone get nauseous?

So I’m hoping to begin my obin infusions this week - just curious why they prescribed two different nausea pills Zophan and Compazine along with the...

So I’m hoping to begin my obin infusions this week - just curious why they presc...

SunnyCA

•10 months ago

25 Replies

Low Immunoglobulins A and G

At what low levels of A and G should I consider infusions? Went thru B&R 13 months ago and levels are not quite in the normal range(L), although "M" is...

At what low levels of A and G should I consider infusions? Went thru B&R 13 mont...

Soflajoe

•10 months ago

26 Replies

Covid and Uk free tests

Hi I have Covid again after being negative from the first bout 3 weeks again! Haven’t been anywhere so don’t know how its reared its head again, waiting on...

Hi I have Covid again after being negative from the first bout 3 weeks again! Ha...

uide3095

•10 months ago

15 Replies

Lagevrio

Having escaped Covid over the last few years, I did a test yesterday as I felt fluey and coldy. It was positive. I have had seven vaccinations! Couldn't...

Having escaped Covid over the last few years, I did a test yesterday as I felt f...

Adlucy

•10 months ago

8 Replies

Flair Trial Completed

It’s official I have completed 6 years of taking part in the I. & R Arm of the Flair Trial today . I started on 28th January 2018 and I took my last dose of...

It’s official I have completed 6 years of taking part in the I. & R Arm of the...

Sanphil

•10 months ago

8 Replies

Chemotherapy

I was diagnosed with cll in 2012. Went on 6 months of iv chemo in 2017. Was in remission for awhile and on one of my returned visited things had changed. My...

I was diagnosed with cll in 2012. Went on 6 months of iv chemo in 2017. Was in r...

cocopurp

•10 months ago

6 Replies

Cll back after 4yrs

Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.

Hospital found lymph nodes in neck and think my leukaemia is back. I have been c...

Daisy1993

•10 months ago

19 Replies

Retina detachment...is there a link with CLL?

I'm recovering from an op to reattach my retina. In a bored moment I started googling any connection with CLL and it is looking like there is!!! Anyone had...

I'm recovering from an op to reattach my retina. In a bored moment I started goo...

Lizlashley1

•10 months ago

18 Replies

CLL and Shingles Infection

Hi there. My husband has CLL and is currently suffering from an ongoing bout of hideous shingles infection - almost a month so far with no respite in sight....

Hi there. My husband has CLL and is currently suffering from an ongoing bout of...

Hartridge

•10 months ago

9 Replies

Does anyone have CLL and MDS?

I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica...

I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went ...

DaveCll

•10 months ago

18 Replies

Acalabrutinib

I sent in my prescription 5 days ago and today I have been told by the pharmacist when I tried to pick it up that the drug is no longer available. I have tried...

I sent in my prescription 5 days ago and today I have been told by the pharmacis...

Vinweesel2023

•10 months ago

33 Replies

Brukinsa and Skin

I'm posting just for input from our group on a simple issue. I started Brukinsa on January 1, and I'm also on IVIG infusions once every four weeks since...

I'm posting just for input from our group on a simple issue. I started Brukinsa...

wizzard166

•10 months ago

13 Replies

Starting v and o

Was wondering what to expect infusion, ports, venetaclax and o. I start Tuesday!

Was wondering what to expect infusion, ports, venetaclax and o. I start Tuesday...

Swissnology

•10 months ago

7 Replies

consultant found lump near anus

consultant found lump near anus not piles Going for colonoscopy and CT Feels like stying on golf ball

consultant found lump near anus not piles Going for colonoscopy and CT Feels...

Perrie46

•10 months ago

7 Replies

Now going to start treatment

Last month my Haematologist informed me that I now needed treatment but had to consult with my lung and heart specialist to decide which treatment will suit me...

Last month my Haematologist informed me that I now needed treatment but had to c...

Suzie42

•10 months ago

15 Replies

Secondary Cancers after CAR-T Cell Therapy

From New England Journal of Medicine dated 24th Jan 2024 (article is for subscribers only) This brief report states: The demonstrated efficacy of the...

From New England Journal of Medicine dated 24th Jan 2024 (article is for subscr...

Jm954

Administrator•10 months ago

7 Replies

Pirtobrutinib (formerly LOXO-305)

I gave patients this drug at 25 mg who had had five prior therapies and I was seeing response, and I have worked with other agents that were similar and not...

I gave patients this drug at 25 mg who had had five prior therapies and I was se...

MovingForward4423

•10 months ago

5 Replies

Lactate/lactic acid in CLL

Has anybody heard of lactate/lactic acid in CLL? Thinking about Wimco’s "Pain in the body" makes me wonder if there is anything to the possibility of lactic...

Has anybody heard of lactate/lactic acid in CLL? Thinking about Wimco’s "Pain ...

Lavinia-Blue

•10 months ago

15 Replies

Vitamin D and Dementia

Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts...

Vitamin D is a topic that gets a regular airing on this forum. In the context of...

bennevisplace

•10 months ago

24 Replies

Is Molnupiravir (Lagevrio) Bad For Us?

That's my question! Also, if someone were on a BTKi, on average, would it be better to pause the BTKi to take Paxlovid, or to keep taking the BTKi and also...

That's my question! Also, if someone were on a BTKi, on average, would it be be...

DRM18

•10 months ago

5 Replies

Covid and Party

👋 Party is this coming Sat . I feel OK with going now after people's advice , so thank you all. Got my N95 mask. Will have sanitiser on me all the time ....

👋 Party is this coming Sat . I feel OK with going now after people's advice ,...

Stavrou1

•10 months ago

9 Replies

travel or not?

My son is getting married in Capetown, South Africa next year which is great news but having not flown since pre pandemic, it is scary. I'm on I&V arm of...

My son is getting married in Capetown, South Africa next year which is great new...

Jds7

•10 months ago

19 Replies

I'm back

Hi All, I'm back after a several year hiatus. My CLL had been very slowly progressing when I first joined, so I didn't keep up with this group. I just...

Hi All, I'm back after a several year hiatus. My CLL had been very slowly progr...

WestCoast_1

•10 months ago

10 Replies

Follow up to static dilemma

Hi in follow up to my last post regarding my dilemma over whether I should move from the flair trial to the static trial. I saw my haematologist today and I...

Hi in follow up to my last post regarding my dilemma over whether I should move ...

annmcgowan

•10 months ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2024

very mild discomfort in spleen area

start new medicine Venetoclaz

good news

A simple life with Acalabrutinib?

Proggresion from 1st treatment

Coming Off Calquence (

Obinutuzimab - anyone get nauseous?

Low Immunoglobulins A and G

Covid and Uk free tests

Lagevrio

Flair Trial Completed

Chemotherapy

Cll back after 4yrs

Retina detachment...is there a link with CLL?

CLL and Shingles Infection

Does anyone have CLL and MDS?

Acalabrutinib

Brukinsa and Skin

Starting v and o

consultant found lump near anus

Now going to start treatment

Secondary Cancers after CAR-T Cell Therapy

Pirtobrutinib (formerly LOXO-305)

Lactate/lactic acid in CLL

Vitamin D and Dementia

Is Molnupiravir (Lagevrio) Bad For Us?

Covid and Party

travel or not?

I'm back

Follow up to static dilemma

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