Posts - CLL Support | HealthUnlocked

CLL Support

22,702 members • 38,968 posts

All posts for April 2024

Sezary Syndrome.

After many months of fighting a complete body rash, I was visually diagnose with Sezary Syndome and had to discontinue my CLL treatment with Venetoclax, only...

After many months of fighting a complete body rash, I was visually diagnose wit...

Champlain

•2 months ago

3 Replies

Tick bite!!

Hope someone can advise. I'm in Northern France on holiday and had an evening walk long trousers on but felt my knee go really hot. Rolled my trousers up and...

Hope someone can advise. I'm in Northern France on holiday and had an evening wa...

Jetliz

•2 months ago

13 Replies

CLL - Leukemia Cutis

Hello everyone. CLL Dx 2002, unmutated, Trisomy12, Notch 1. O+I 2 years, Off meds 2 years (heart surgery), WBC has been slowly rising ove4r the past 4 or 5...

Hello everyone. CLL Dx 2002, unmutated, Trisomy12, Notch 1. O+I 2 years, Off me...

misterbee

•2 months ago

7 Replies

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Trial Drug

Hi , Have been on a trial drug evaluating NX-5948-301 since early Feb, this trial consists of several cycles at The Churchill hospital,Oxford UKThe trial is...

Hi , Have been on a trial drug evaluating NX-5948-301 since early Feb, this tria...

bigange2024

•2 months ago

4 Replies

Platelets dropped after obinituzumab and won't rise even after transfusion 🚨

Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in...

Dear all, First of all, thank you very much for all the help and care I have a...

BMFCDRW

•2 months ago

12 Replies

My dad has CLL with TP53 mutation

As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions...

As i am writing this im very frightened And i need someone with similar co...

Ornate2001

•2 months ago

12 Replies

Reply to issues with Spleen

Hi, I agree with most of these comments on here that the enlargement of your spleen is an indication perhaps that you are ready for some form of treatment,...

Hi, I agree with most of these comments on here that the enlargement of your s...

Roseneath69

•2 months ago

1 Reply

Ivermectin may help with cancer treatments

Studies of various chronic myeloid leukemia cell lines show that ivermectin kills these lines by inducing mitochondrial dysfunction and the production of free...

Studies of various chronic myeloid leukemia cell lines show that ivermectin kill...

craterlake

•2 months ago

15 Replies

Taking steroids

Hi to the CLL community wishing everyone well, I am towards the end of my V and O treatment which has gone well thankfully except for some side effects one...

Hi to the CLL community wishing everyone well, I am towards the end of my V and...

puppy43

•2 months ago

12 Replies

Enlarged spleen CLL stage 0

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges now. My spleen has become very enlarged over the last 6 months so my...

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges ...

Redkatt

•2 months ago

44 Replies

Next Game Changer??

There are a lot of very knowledgable people on this site who follow trials closely. Will the next CLL drug that will be a “game changer” be a BTK inhibitor...

There are a lot of very knowledgable people on this site who follow trials close...

Hidden

•2 months ago

7 Replies

denosumab

Any one had experience of denosumab after 1st line CLL treatment? My gp is suggesting these jabs but he's new and as I've read that it can cause...

Any one had experience of denosumab after 1st line CLL treatment? My gp is sugg...

RosettaClapp

•2 months ago

7 Replies

New symptom bitter taste in mouth on watch and wait

I was diagnosed with Cll 2014. Now have high ALC count 55 but still on watch and wait. Recently I have developed a persistent bitter taste in my mouth…..very...

I was diagnosed with Cll 2014. Now have high ALC count 55 but still on watch an...

Terryjb

•2 months ago

5 Replies

Cll and IBS

I had an abdominal CT on Monday, ordered by my Gastroenterologist. CLL related results were as expected, spleen 20cm up from 17cm in 2018, lymph nodes...

I had an abdominal CT on Monday, ordered by my Gastroenterologist. CLL related ...

Cleggett

•2 months ago

3 Replies

V&R treatment ending and skin blemishes mostly on face.

Hello friends. On Monday I will be taking in the last RITUBIMAB infusion of the 7 months targeted therapy for CLL. I will be treatment-Free. I am both elated...

Hello friends. On Monday I will be taking in the last RITUBIMAB infusion of the ...

unairdefamille

•2 months ago

4 Replies

MRD doubling time

Has anyone seen data or have a feel for what is cosidered slow vrs fast time for MRD to double after fixed duration therapies? john

Has anyone seen data or have a feel for what is cosidered slow vrs fast time for...

johnliston

•2 months ago

7 Replies

Another update

My husband and i have finally got answers we needed as last Thursday and Friday we were badly let down by the medical professionals. Monday afternoon this week...

My husband and i have finally got answers we needed as last Thursday and Friday ...

Nikkij81

•2 months ago

12 Replies

Moose Tracks ( not the ice cream flavor)

Haven’t felt well due to a sinus infection but the antibiotics I’ve received I’m finally recovering after 4 weeks. So I was unusually grateful to get out on...

Haven’t felt well due to a sinus infection but the antibiotics I’ve received I’m...

skipro

•2 months ago

8 Replies

Dana-Farber Cancer Institute

Seven studies from researchers at the prestigious Dana-Farber Cancer Institute have been retracted over the last two months after a scientist blogger alleged...

Seven studies from researchers at the prestigious Dana-Farber Cancer Institute h...

ChristineAM

•2 months ago

4 Replies

Lymph % Lymph numbers are in NORMAL RANGE on my new blood labs

I was diagnosed with CLL in 2017 & described as a good prognosis from tests given. I have not had any treatment and my LABS have been stable. Lymph numbers...

I was diagnosed with CLL in 2017 & described as a good prognosis from tests give...

Ilovemydaisy12

•2 months ago

6 Replies

Starting to take acalabrutinib

My husband has relapsed after 9 years in remission ,his doctor is talking about starting him on acalabrutinib ,but he is worried about the side effects he...

My husband has relapsed after 9 years in remission ,his doctor is talking abo...

Takingchances

•2 months ago

27 Replies

My one month blood results.

I have been just a little worried about falling out of remission. But today I feel a bit better. Seeing my platelets rising. Hoping the Best to all. 🙏

I have been just a little worried about falling out of remission. But today I fe...

Seaway789

•2 months ago

9 Replies

More Promising BCL-2's and a Trial opportunity

Fresh off the press from cllsociety.org, an insight about a new study with a BCL-2 drug called sonrotoclax in combination with zanubrutinib....

Fresh off the press from cllsociety.org, an insight about a new study with a BCL...

Smakwater

•2 months ago

22 Replies

Knee pain driving me round the bend !

I have had a swollen painful left Knee since just before Christmas.Not hot Checked - No breaks, no torn ligaments due to injury. Bloods check for rheumatoid...

I have had a swollen painful left Knee since just before Christmas.Not hot Che...

Juliette02

•2 months ago

5 Replies

Myelodydisplasia (?)Leukaemia

So can someone tell me if this is what CLL can turn into? and how much worse than CLL is it? Many thanks, Veronica

So can someone tell me if this is what CLL can turn into? and how much worse th...

Veebeegeebee

•2 months ago

16 Replies

need your help to learn about Clonal Hematopoiesis.

Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to...

Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost ...

sunsetssr

•2 months ago

5 Replies

brukinsa cll patient

cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.

cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 a...

ceciljr1958

•2 months ago

4 Replies

Update on my CLL diagnosis

Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai...

Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with e...

tenniselbowz

•2 months ago

12 Replies

atypical CLL treatment

Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up. Still W and W. But...

Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec...

Pinguin2024

•2 months ago

7 Replies

psychological effects

my brother has been taking imbruvica for many years, and I have noticed negative psychological effects. Irritability factors, temper, issues, Etc These...

my brother has been taking imbruvica for many years, and I have noticed negativ...

Tootsietoo

•2 months ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2024

Sezary Syndrome.

Tick bite!!

CLL - Leukemia Cutis

Trial Drug

Platelets dropped after obinituzumab and won't rise even after transfusion 🚨

My dad has CLL with TP53 mutation

Reply to issues with Spleen

Ivermectin may help with cancer treatments

Taking steroids

Enlarged spleen CLL stage 0

Next Game Changer??

denosumab

New symptom bitter taste in mouth on watch and wait

Cll and IBS

V&R treatment ending and skin blemishes mostly on face.

MRD doubling time

Another update

Moose Tracks ( not the ice cream flavor)

Dana-Farber Cancer Institute

Lymph % Lymph numbers are in NORMAL RANGE on my new blood labs

Starting to take acalabrutinib

My one month blood results.

More Promising BCL-2's and a Trial opportunity

Knee pain driving me round the bend !

Myelodydisplasia (?)Leukaemia

need your help to learn about Clonal Hematopoiesis.

brukinsa cll patient

Update on my CLL diagnosis

atypical CLL treatment

psychological effects

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