CLL Support | HealthUnlocked

CLL Support

23,334 members•40,033 posts

shingles

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony with it. I didn’t get to see the doctor for three days before starting with the...

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony wit...

Headers

•6 days ago

40 Replies

whole food plant based advice

I'm totally new here. Have 1st radiology on Tuesday (12 Nov) As a vegan I am very intersted in the effects of our diet and would like to gain experince...

I'm totally new here. Have 1st radiology on Tuesday (12 Nov) As a vegan I ...

VEGANFTA

•11 days ago

47 Replies

Husband just diagnosed <50 years old

Hello. My husband has just been diagnosed with CLL. He's only 47. We are waiting for his hospital appointment - so far we've just seen the GP. All a bit of a...

Hello. My husband has just been diagnosed with CLL. He's only 47. We are waiting...

blacktortoise

•13 days ago

50 Replies

First experience with Brukinsa

I will be starting treatment with Brukinsa in a few days. Would like to know if anyone has experienced fatigue while on it and how they deal with it. I was...

I will be starting treatment with Brukinsa in a few days. Would like to know ...

Vacationmountaintop

•19 days ago

60 Replies

Surgery on the spine with CLL

Wondering if anyone has had spinal surgery (for stenosis and 3 bulging discs). I was diagnosed with CLL in February 2023 and am currently on watch and wait. I...

Wondering if anyone has had spinal surgery (for stenosis and 3 bulging discs). I...

Pocketdog

•6 days ago

25 Replies

Care in the sun

Hi guys. I thought I'd share a timely warning I received yesterday. During my regular check-up with the hematologist ( treatment in December or January now,...

Hi guys. I thought I'd share a timely warning I received yesterday. During my r...

Guffy

•1 month ago

60 Replies

seeking alternative views

Hi from Australia! i have joined this forum after searching for alternative treatments to chemo for my dad (83) CLL 8 years on. I am very open minded with a...

Hi from Australia! i have joined this forum after searching for alternative tre...

Wella01

•28 days ago

50 Replies

Adaptive Therapy Dosing Help

Hi CLL Community, I posted about the possible use of adaptive therapy to treat CLL awhile back, and I have a question. First, let me just mention what...

Hi CLL Community, I posted about the possible use of adaptive therapy to treat ...

PulsedTherapy

•1 month ago

54 Replies

very high WBC

Hi All, I’m an Aussie, 48 years old with del13q14. and I’m wait and watch since 10 years.. My wbc was around 100, 000 few months back and now 201000 from Oct...

Hi All, I’m an Aussie, 48 years old with del13q14. and I’m wait and watch since...

Vivekannd

•9 days ago

25 Replies

nitanut

My husband was diagnosed with CLL in 2021, told to get all the vaccinations offered to him. He always re acts badly to the Covid one. So every 6 months we go...

My husband was diagnosed with CLL in 2021, told to get all the vaccinations offe...

nitanut

•29 days ago

44 Replies

Clonal Lymphocytosis

Had my initial appointment with a Haematologist today who said I have Clonal Lymphocytosis. Can I ask how many of you started with Clonal Lymphocytosis and it...

Had my initial appointment with a Haematologist today who said I have Clonal Lym...

Ambrose04

•23 days ago

36 Replies

fatigue

hi friends. I am doing well and into week 7 of the O plus V treatment. I have never felt fatigue like this before. I am a very active person and this has...

hi friends. I am doing well and into week 7 of the O plus V treatment. I have ne...

DogmomLM

•2 days ago

12 Replies

Dental issues with cll,,

Dear Cll`ers I finished O and V in August 2023,, I am 73!. My query is how much are we affected by CLL and Treatment, regarding our teeth. I seemed to get...

Dear Cll`ers I finished O and V in August 2023,, I am 73!. My query is how much...

pati23

•15 days ago

24 Replies

Blood test Result

My Platelet count on my three monthly blood test has gone from 201 to 160 do they increase again or keep going down.? WBC is now 57.8 and Lymphocytes 53.5...

My Platelet count on my three monthly blood test has gone from 201 to 160 do th...

Kiwi77

•2 days ago

9 Replies

Bloods are OK although lymph nodes swollen

Can anyone explain to me or direct me to where I can find this information. My husband was in remission with CLL for 4 years, after having treatment. Although...

Can anyone explain to me or direct me to where I can find this information. My h...

ProvenceSunshine

•25 days ago

30 Replies

Issue with toenail fungus

I have been fighting a losing battle with toenail fungus on my big toe and have now lost half of the nail and it is painful at night I am not able to use the...

I have been fighting a losing battle with toenail fungus on my big toe and have...

Bell53

•1 month ago

32 Replies

First consultation after one month on Acalabrutinib which I started at the same time my husband became seriously ill.

I finally took the plunge and agreed to start acalabrutinib on October 7th. Comments from many of you were most useful in helping me make this decision,...

I finally took the plunge and agreed to start acalabrutinib on October 7th. Co...

JEEA

•12 days ago

20 Replies

Today’s the Day!

Good morning! My husband, who has Richter’s, is finally getting his hip replacement done today. I have watched him be in pain for almost a year- and I’m so...

Good morning! My husband, who has Richter’s, is finally getting his hip replacem...

laurieq

•1 month ago

32 Replies

Starting V+R

After 7.5 years on ibrutinb got told last week that this Thursday I will be starting V and R . Had terrible skin issues for last two years as some of you may...

After 7.5 years on ibrutinb got told last week that this Thursday I will be star...

cartwheels

•11 days ago

19 Replies

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL This study looked at the impact of vitamin D supplements for patients in the watch and...

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL This stud...

Edalv

•16 days ago

21 Replies

Starting IVIG Therapy

Hi Friends, I've been in remission for almost 4 years, after Ibrutinib and V and O. My Immunoglobulin levels have been on the decline for 6 months. Not crazy...

Hi Friends, I've been in remission for almost 4 years, after Ibrutinib and V and...

NMgal

•9 days ago

15 Replies

Is CH(Clona Hemopoesis)complication common for stage IV blood cancer?

I found some interests on my former post about CH/Clona Hemopoesis, and if I'm not wrong the terminalogy for a lay person means "a faulty bone marrow" along...

I found some interests on my former post about CH/Clona Hemopoesis, and if I'm n...

sunsetssr

•28 days ago

26 Replies

low blood sodium with CLL

any one know of a link between low blood sodium in older CLL patients Never happened before and Gp has no idea why Any advice greatly received

any one know of a link between low blood sodium in older CLL patients Never ha...

Prawn77

•4 days ago

10 Replies

Lymphatic Drainage

Has anyone heard of or tried lymphatic drainage and whether it could be useful in CLL to eliminate or accelerate the elimination of toxins? Thx. Danny.

Has anyone heard of or tried lymphatic drainage and whether it could be useful i...

Denisguay

•4 days ago

10 Replies

Treatment,it's my decision

Hi as some of you may know I have been failing ibrutinb for a while now . Although my CT scan is perfect and I have no enlarged nodes or bulky desiese. But my...

Hi as some of you may know I have been failing ibrutinb for a while now . Althou...

cartwheels

•21 days ago

21 Replies

Day 5 Zanubrutinib

Am a little concerned with one of the side effects increased bleeding. I have chronic venous insufficiency in my left leg and despite wearing my compression...

Am a little concerned with one of the side effects increased bleeding. I have c...

FreoSue

•2 days ago

6 Replies

FLAIR TRIAL update- 6years on

I took my last doses of Ibrutinib and Venetoclax on 31st October 2024, exactly 6years since my very first dose of Ibrutinib which was on 31st October 2018....

I took my last doses of Ibrutinib and Venetoclax on 31st October 2024, exactly ...

Elizabetha

•17 days ago

17 Replies

Frustrated

On watch and wait. Not on any meds. Need to have a cracked tooth extracted. Dentists won't take it out until l can get more information of my consultant. Do...

On watch and wait. Not on any meds. Need to have a cracked tooth extracted. Dent...

Avamarc10

•1 month ago

24 Replies

Cordyceps

Hi all. I wanted to share this site I found of a guy who got his counts fully down by drinking cordyceps tea every day. I’m about to start it....

Hi all. I wanted to share this site I found of a guy who got his counts fully do...

RedPandaLS

•26 days ago

20 Replies

Continued Journey

It’s been awhile for an update, here is the latest. I’m at Day plus 127 from my Bone Marrow Transplant. I saw my doctor (main specialist) on day+119. This was...

It’s been awhile for an update, here is the latest. I’m at Day plus 127 from my ...

FiArt12X

•20 days ago

17 Replies

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