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CLL Support

23,089 members • 39,657 posts

ABBV-101 update

Hi, I wanted to let you know that I'm faring well with the blood test results on the trial thus far, and have my energy back which is great. I hate the...

Hi, I wanted to let you know that I'm faring well with the blood test results o...

Schubert1870

•2 days ago

25 Replies

RSV vaccine

Hi all I asked my GP about the RSV vaccine for the immunosuppressed today. I was informed there is no plan to provide the vaccine for this group unless they...

Hi all I asked my GP about the RSV vaccine for the immunosuppressed today. I was...

annmcgowan

•10 days ago

46 Replies

need answer ASAP. Re infusions 😳😳😳

Is methotrexate similar to azacidine? Now the leukemia specialist is telling me that if they use the methotrexate INSTEAD of the azacitdine which I did so...

Is methotrexate similar to azacidine? Now the leukemia specialist is telling me...

JerrysGirl3

•10 days ago

43 Replies

Acalabrutinib side effects

I posted recently that I had been diagnosed with gout in big toe and so came off Acalabrutinib for a week whilst I took the medication. Before the gout...

I posted recently that I had been diagnosed with gout in big toe and so came off...

Eucalyptus22

•7 hours ago

7 Replies

Shingles Vaccine

I have now nearly reached 65 years of age! My GP surgery is offering me the shingles Vaccine. Has anyone had any side effects from it. I am worried...

I have now nearly reached 65 years of age! My GP surgery is offering me the...

Marisa

•12 days ago

34 Replies

End of fixed duration treatment

Completed 2 yr treatment on Rituximab and Venetoclax approximately 4 weeks ago. Consultant says I'm in remission and not to worry there are other treatments I...

Completed 2 yr treatment on Rituximab and Venetoclax approximately 4 weeks ago. ...

Fastbike14

•8 days ago

26 Replies

Study on diet and CLL

Has anybody seen this study before? It suggests that a "whole food, plant‐based (WFPB) diet intervention" can stabilise or reduce lymphocyte count...

Has anybody seen this study before? It suggests that a "whole food, plant‐base...

Fred_Green

•1 month ago

52 Replies

CLL treatment

Hi all I was diagnosed with CLL in 2021 & was on watch& wait until jan this year.I had a blood test & went to see a haemotologist .Bythis time my wbc was 600...

Hi all I was diagnosed with CLL in 2021 & was on watch& wait until jan this yea...

Grandadsboys

•4 days ago

18 Replies

newly diagnosed

I’m newly diagnosed CLL. Very new! It’s been 3 days! 😀. My emotions are crazy, I go from depression, to being ok. I just need a support group. Also at the...

I’m newly diagnosed CLL. Very new! It’s been 3 days! 😀. My emotions are crazy, ...

Hidden

•1 month ago

47 Replies

Not allowed to have the RSV Vaccine

Yesterday I emailed my GP (Archers Practice in Eastleigh, Hampshire, UK) to request the RSV vaccine. I am 69 and have CLL and COPD and I'm a type 1 Diabetic,...

Yesterday I emailed my GP (Archers Practice in Eastleigh, Hampshire, UK) to requ...

Maranman

•2 days ago

12 Replies

I’m still here :)

it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received...

it’s been a while and my last post was not very positive . This is a quick updat...

Hilo13

•10 days ago

24 Replies

On a break from Ibrutinib

I stopped taking Ibrutinib in February 2024. After five and a half years the side effects got the better of me. I've been followed up by my haematologist every...

I stopped taking Ibrutinib in February 2024. After five and a half years the sid...

Beattiem-UK

•11 hours ago

5 Replies

Measurable residual disease (MRD) status predicts Progression Free Survival (PFS) for patients with Chronic Lymphocytic Leukemia (CLL)

Measurable residual disease (MRD) refers to the presence of disease at low levels not detected by conventional pathologic analysis. The association of MRD...

Measurable residual disease (MRD) refers to the presence of disease at low level...

AussieNeil

Administrator•12 days ago

24 Replies

Our story !

Six months ago I lost my mother A strong fighter for lymphoma that was diagnosed in 2016 with CLL The situation get worse .. for more what we called...

Six months ago I lost my mother A strong fighter for lymphoma that was d...

htam

•8 days ago

20 Replies

Venetoclax

Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In...

Hi everyone , I am so glad with this site. My name is Anja, 67 years old , a...

jroon08

•12 days ago

24 Replies

colonoscopy

The operation isn’t painful or difficult so don’t despair. I think with all the interventions we’ve been through with our CLL it’s another operation that...

The operation isn’t painful or difficult so don’t despair. I think with all the ...

dontruminate

•3 days ago

12 Replies

cll and diarrhea

any suggestions how to mitigate the diarrhea. I’ve been on Venteclaxta 400 mg for 2/12 months and I cannot get a handle on this . All suggestions welcome

any suggestions how to mitigate the diarrhea. I’ve been on Venteclaxta 400 mg f...

Cll12

•18 days ago

27 Replies

Starting V&O treatment

I have SLL and will be starting V&O treatment next week. Apparently I will have two months of obinutuzumab (typical cycle 1 ramp up and a second cycle) before...

I have SLL and will be starting V&O treatment next week. Apparently I will have ...

roninwarior007

•9 days ago

18 Replies

I am still waiting for my CT scan results.

I am still awaiting my CT scan results which were done 4 weeks ago now. Hoping no news is good news for me? Started seeing a Psychiatrist this week to help me...

I am still awaiting my CT scan results which were done 4 weeks ago now. Hoping n...

Curry777

•6 days ago

15 Replies

efudex ( fluorouracil 5)

My dermatologist has suggested and prescribed the above medications for my face and neck for my ongoing battle with actinic keratosis and squamous cell...

My dermatologist has suggested and prescribed the above medications for my face ...

Claybuster

•8 days ago

16 Replies

still positive for covid

was negative after 8 days for 2 days then have what I am pretty sure is a covid rebound. It is day 14 and am still very positive on a test. How long do most...

was negative after 8 days for 2 days then have what I am pretty sure is a covid ...

ap64

•7 days ago

15 Replies

Update.

Spoke with Dr Sidra my haematologist yesterday. My red cells are still being destroyed more rapidly than they are replenishing. He has reduced my Imber from...

Spoke with Dr Sidra my haematologist yesterday. My red cells are still being des...

Jacksc06

•26 days ago

28 Replies

End of term report!

So I just heard from the CNS that I have no evidence of CLL cells, sensitivity 0.01%. I am not good at interpreting the 0.01% thing but this sounds a good...

So I just heard from the CNS that I have no evidence of CLL cells, sensitivity ...

Steffi50

•1 month ago

32 Replies

thoughts on brukinsa treatment

Hi ALL from Florida. 1st follow up after June diagnosis. Blood work remains 99% perfect and still feeling physically normal but mentally I have struggled....

Hi ALL from Florida. 1st follow up after June diagnosis. Blood work remains 99% ...

Reetywell71

•8 days ago

15 Replies

Started O plus V a few weeks ago. i have a question

I feel great after a few infusions and am starting pills next week. My bloodwork was normal for the first time in 10 years. I seem to be nervous about...

I feel great after a few infusions and am starting pills next week. My bloodwor...

elm1

•29 days ago

27 Replies

Richter's and Novel Treatments/Combinations

We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a...

We've had a few members post about Richter's recently so I thought it might be t...

Jm954

Administrator•1 month ago

26 Replies

Gout?

I have developed an incredibly painful big toe which is slightly swollen. It is isn't red or hot, so I don't think there is an infected joint. I am suspecting...

I have developed an incredibly painful big toe which is slightly swollen. It is ...

Eucalyptus22

•24 days ago

23 Replies

Appetite, weight, energy....

So, I am 13q deletion, mutated, watch and wait for about 7 years. Latest white count 53.6 and it is going up quite slowly. I've been told sudden inexplicable...

So, I am 13q deletion, mutated, watch and wait for about 7 years. Latest white c...

battanim

•4 days ago

9 Replies

How do they decide which treatment?

Hello. Back on August 21 at my bi-annual hematology checkup, my hematologist said she wanted to see me again in six weeks because my WBC had gone from 25.1...

Hello. Back on August 21 at my bi-annual hematology checkup, my hematologist sai...

Myfavoritecat

•4 days ago

9 Replies

Rash that won’t go away

I thought I’d share a picture of a rash that’s now over 2 months old that my CLL and GP doctors have no answer. They say it’s probably a reaction to the drugs....

I thought I’d share a picture of a rash that’s now over 2 months old that my CLL...

Louie_CC

•22 days ago

20 Replies

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