CLL Support | HealthUnlocked

CLL Support

23,695 members•40,459 posts

CLL and weakness? Fatigue just a state of mind?

CLL sources say weakness can be a CLL symptom. Is this a direct effect of CLL on muscle tissue? Or indirect: fatigue-decreased activity= weakness?Is fatigue...

CLL sources say weakness can be a CLL symptom. Is this a direct effect of CLL o...

whitravis

•2 days ago

30 Replies

advice on interacting and vaccines with CLL

Hello all, we think that my husband may have just joined your community yesterday (a senior nurse told him he has CLL and put in an urgent referral to...

Hello all, we think that my husband may have just joined your community yesterda...

Nico6

•12 days ago

47 Replies

Major breakthrough in cancer research.

This just made my day. We are on the cusp of serious changes in how cancer is treated and managed. Lots of trials will be coming once funding is made...

This just made my day. We are on the cusp of serious changes in how cancer is t...

LeoPa

•28 days ago

64 Replies

Radiotherapy for breast cancer

Hello members, I was diagnosed with cll 7 years ago, bloods are stable and no treatment needed so far. I was diagnosed with breast cancer in October 2024 and...

Hello members, I was diagnosed with cll 7 years ago, bloods are stable and no tr...

Raquel22

•6 days ago

30 Replies

staying hydrated

hi all staying hydrated is important for overall health, has anyone got any advice on taking supplements for hydration? Electrolyte drinks or tables? This...

hi all staying hydrated is important for overall health, has anyone got any advi...

CLLpa

•10 days ago

37 Replies

Diet and my CLL

Hello all, I'd like your guidance in my diet concerns. I'm almost months after losing my husband to AML. My concern is that I just have zero motivation to...

Hello all, I'd like your guidance in my diet concerns. I'm almost months after ...

Hilomom

•18 days ago

46 Replies

Bilateral hip pain post v&o

I completed V&O 3/24 and am feeling much better except for severe hip pain. The discomfort is almost continuous with aching just resting/ sitting but...

I completed V&O 3/24 and am feeling much better except for severe hip pain. The ...

Shangonmom

•3 days ago

17 Replies

update

hi it’s been a while since I posted. I left the site cause my CLL transformed into non Hodgkin’s lymphoma presenting as anaplastic stage four . It was a...

hi it’s been a while since I posted. I left the site cause my CLL transformed in...

Hilo13

•6 days ago

22 Replies

Immunoglobulin light chain mutational status refines IGHV prognostic value in identifying CLL patients with early treatment requirement

Most of us would be aware of the prognostic value of the immunoglobulin heavy-chain variable region gene (IGHV) mutation status of our CLL (See...

Most of us would be aware of the prognostic value of the immunoglobulin heavy-ch...

AussieNeil

Administrator•2 days ago

11 Replies

Airplane travel with enlarged spleen?

I am scheduled for a 3 hour flight soon and my spleen is enlarged. My Doctor said he has no issue against me flying. Was just curious if anyone has had any...

I am scheduled for a 3 hour flight soon and my spleen is enlarged. My Doctor sai...

K9shepherd

•4 days ago

18 Replies

Gratitude

as those of you who know me on this format, I've had my share of challenges that have been devastating in someways. Today I want to express gratitude to...

as those of you who know me on this format, I've had my share of challenges tha...

skipro

•27 days ago

40 Replies

New here but have questions.

Hi there everyone. I'm a 75 year old female from the Seattle, WA. area looking for info, advice and whatever else you can share me. So although I have not...

Hi there everyone. I'm a 75 year old female from the Seattle, WA. area looking ...

NancyJ4

•2 days ago

11 Replies

cycle 1 day1 V & O

sadly did not according to plan and hope, 2 hours in suddenly freezing cold, dizzy, ended it for day, had an adrenaline shot to help, back tomorrow for...

sadly did not according to plan and hope, 2 hours in suddenly freezing cold, diz...

Jim-Boy

•21 days ago

35 Replies

Path towards diagnosis

Hi all, I'm a 37 year old male in the USA. I'm married with a nearly 1.5 year old son. And.... I think I will likely officially be part of this club soon... I...

Hi all, I'm a 37 year old male in the USA. I'm married with a nearly 1.5 year ol...

travisgf87

•19 days ago

33 Replies

Life changes with CLL treatment?

I am 69 years old and will begin my first treatment for CLL in a couple of weeks. I have not yet discussed with my doctor which treatment I will receive, but...

I am 69 years old and will begin my first treatment for CLL in a couple of weeks...

CLLed

•11 days ago

24 Replies

Doctors

I just wondered if anyone had input or experience in having their CLL treated by an internist is osteopathy and general medicine, with some experience in...

I just wondered if anyone had input or experience in having their CLL treated by...

loveRicky

•4 days ago

13 Replies

canker sores

Hi fellow travelers, wondering if anyone has has a major outbreak of canker sores? I’m traveling in sunny climes and got too much sun (I know: bad on...

Hi fellow travelers, wondering if anyone has has a major outbreak of canker sore...

Islandjewel23

•9 days ago

19 Replies

Appetite and covid with CLL

If I am posting what has already been posted I do apologise I tried to search the forum but couldn't come up with anything I hope the new year is good to all...

If I am posting what has already been posted I do apologise I tried to search th...

Supersurfer1

•1 month ago

35 Replies

Looking for CLL specialist

I was just diagnosed with Stage 0 CLL. I'm in the "Watch & Worry" stage - my dad died of complications from CLL in 1999; if I didnt know what he went through,...

I was just diagnosed with Stage 0 CLL. I'm in the "Watch & Worry" stage - my dad...

VanGoghLvr0401

•1 month ago

36 Replies

How taxing is the role of caregiver during chemo?

I'm 71 years old and retired, just completing 4 years of watch and wait, asymptomatic except for slowly declining Hgb and unstable platelet count. My FISH...

I'm 71 years old and retired, just completing 4 years of watch and wait, asympto...

jimwilmes

•5 days ago

13 Replies

AI and Cancer

Could AI, artificial intelligence, create curative treatments for cancer? What do you think?

Could AI, artificial intelligence, create curative treatments for cancer? What d...

Priss69

•20 days ago

25 Replies

CLL AND BLOOD TRANSFUSIONS

Hi all, I’m currently having Obinutusamab and Venetoclax treatment for CLL and having major problems raising my haemaglobin levels. I’ve had 16 pints of...

Hi all, I’m currently having Obinutusamab and Venetoclax treatment for CLL and ...

Theplodder

•2 days ago

8 Replies

rising LDH

my LDH has been consistently rising since my CLL diagnosis in 2020. Past two blood draws (six months apart) it has been outside of (above) normal. But all my...

my LDH has been consistently rising since my CLL diagnosis in 2020. Past two blo...

Mend123

•3 days ago

10 Replies

Unmutated IGHV

Morning all, just completed D15 on cycle 1 on V & O few Bumps in the road, but getting through well pretty well, I have been looking back on recent comms...

Morning all, just completed D15 on cycle 1 on V & O few Bumps in the road, but...

Jim-Boy

•6 days ago

14 Replies

plasmacytoma sacrum

I am looking for information about plasmacytoma sacrum; does anyone know a good source?

I am looking for information about plasmacytoma sacrum; does anyone know a good ...

Hiker13

•2 days ago

7 Replies

Acalabrutinib

Hi there.Has anyone been on Acalabrutinib iam starting treatment today,1 tablet per day 100mg,then go for blood test end of month and see doctor to see if they...

Hi there.Has anyone been on Acalabrutinib iam starting treatment today,1 tablet ...

Jsceltic67

•26 days ago

28 Replies

CLL and driving ?

I got my driving license before I was diagnosed with CLL. I'm currently in watch & wait period and usually do not have any significant symptoms other than some...

I got my driving license before I was diagnosed with CLL. I'm currently in watch...

TrenchcoatPenguin

•24 days ago

26 Replies

Multivitamins ... or not?

I'm 72 and was diagnosed with CLL 2 years ago. I'm unmutated with possible underlying MDS. I started a course of Acalabrutinib September 2023 which failed...

I'm 72 and was diagnosed with CLL 2 years ago. I'm unmutated with possible und...

Penicillen

•4 days ago

10 Replies

IVIG Question

had first dose of IVIG yesterday, think it was 3 grams. Pre med with Zyrtec and Tylenol. Half way through infusion had allergic reaction, shaking chills...

had first dose of IVIG yesterday, think it was 3 grams. Pre med with Zyrtec and ...

Davidcara

•20 days ago

22 Replies

Is bone biopsy normal during "watch and wait"?

I've been in "watch and wait" for 4 years, and still remain asymptomatic, although my hemoglobin and platelets have gotten quite low. My hematologist is...

I've been in "watch and wait" for 4 years, and still remain asymptomatic, althou...

jimwilmes

•17 days ago

20 Replies

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