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CLL Support

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All posts for January 2025

Why does ibrutinib cause nail brittleness (onychorrhexis and onychoschizia) or curly hair in some CLL patients? What can you do about it?

A fairly common observation of those taking the BTK inhibitor ibrutinib is that their hair can become curly or straight, or much more annoyingly, their nails...

A fairly common observation of those taking the BTK inhibitor ibrutinib is that ...

AussieNeil

Administrator•2 months ago

8 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

•2 months ago

14 Replies

Oil of Oregano & or Omega 3 oils while in treatment for CLL

I'm 4 months in to ibrutinib treatment and feeling much worse than I did before starting treatment. I've been experiencing multiple fissures on my fingers....

I'm 4 months in to ibrutinib treatment and feeling much worse than I did before ...

ncosto

•2 months ago

6 Replies

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Sonrotoclax-Zanubrutinib - Less Infection Risk

Dr. Brian Koffman interviews Dr. Jacob Soumerai at ASH 2024 - Among the benefits stated in the presentation is that of lower infection risks. Video -...

Dr. Brian Koffman interviews Dr. Jacob Soumerai at ASH 2024 - Among the benefits...

Smakwater

•3 months ago

2 Replies

Bloodwork question -Bilirubin Total is 33 umol/L should b 20, Glomerular Filtration 59

Just had bloodwork done and all was well except Bilirubin was on the high side. On Acalabrutinib for two years and doing well. My question is this: does...

Just had bloodwork done and all was well except Bilirubin was on the high side....

Curling123

•3 months ago

4 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

•3 months ago

22 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

•3 months ago

30 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

•3 months ago

14 Replies

brukinsa/zanubrutinib

Has anyone suffered from ongoing over production of head and chest mucous,I seem to have a constant issue coughing up gunge,my cll seems to be under good...

Has anyone suffered from ongoing over production of head and chest mucous,I seem...

neddyseagoon

•3 months ago

12 Replies

RDW results

My RDW keeps creeping up monthly. Nothing bonkers, just like 19 now, when it should be 11-15. My oncologist says no worries, and all my other numbers are...

My RDW keeps creeping up monthly. Nothing bonkers, just like 19 now, when it sh...

beanlake14

•3 months ago

3 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

•3 months ago

19 Replies

brittle nails and hair

I have been on acalabrutinib for almost two years and I am beginning to think I could be the poster child for side effects. My hair is very brittle and...

I have been on acalabrutinib for almost two years and I am beginning to think I ...

Vinweesel2023

•3 months ago

10 Replies

Blood tests....any help much appreciated

Hi...I'm new on here. Doctor has referred me for an ultrasound for my hard neck lymph node. My question is do these last few bloods look ok?

Hi...I'm new on here. Doctor has referred me for an ultrasound for my hard neck ...

diagnosed2013

•3 months ago

8 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

•3 months ago

38 Replies

Aciclovir

Hi All I start Cycle 8 on Tuesday on V&O and its going well. I have to take 3 x 200mg of Aciclovir a day, I get this sick type feeling about 2 hours later...

Hi All I start Cycle 8 on Tuesday on V&O and its going well. I have to take 3...

TheFlyer

•3 months ago

13 Replies

confused about survival

I just watched this video...

Sunshineatleast

•3 months ago

3 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

•3 months ago

24 Replies

IVIG infusions

I was dx with CLL in 2015 and have been on w& w since. Most of the time I feel fine and I don't remember I have it. My WBC climbed by 1000's with every checkup...

I was dx with CLL in 2015 and have been on w& w since. Most of the time I feel f...

Norcaldoglvr

•3 months ago

11 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

•3 months ago

47 Replies

no new HU CLL letter for last two days. I am updating old issues to get current issues for now. I am hoping to get back on the HUCll mailing

mailing list. My wife and I have not been receiving new post for last two days. We hope we are still on the “email list” and will start receiving new posts...

mailing list. My wife and I have not been receiving new post for last two days. ...

CaptRon1976

•3 months ago

4 Replies

Second smear, waiting for flow cytometry results

Hello, My hematologist ordered another smear for me with reflex to flow cytometry. Results just came back and state: Peripheral blood: Persistent absolute...

Hello, My hematologist ordered another smear for me with reflex to flow cytometr...

travisgf87

•3 months ago

6 Replies

New Research Results On CLL Medication

I get the Dana Farber Newsletter regularly, and felt that a report on latest research in the medications we all use was worthy of reading. My Oncologist and...

I get the Dana Farber Newsletter regularly, and felt that a report on latest res...

wizzard166

•3 months ago

9 Replies

Ending 2 years of Acalabrutinib & Venetoclax

At the end of March I will finish taking 2 years of Acalabrutinib & Venetoclax under the Majic trail. During this time my adverse effects have been minimal and...

At the end of March I will finish taking 2 years of Acalabrutinib & Venetoclax u...

JDG45

•3 months ago

5 Replies

Candida guilliermondii

I have had a chest infection since July of last year with 4 different antibiotics to treat. My latest CT scan reported it was clear now. However I still have...

I have had a chest infection since July of last year with 4 different antibiotic...

RobertCLL

•3 months ago

Be the first to reply

Cardiac Preconditioning and BCL-2

Cardiac Preconditioning: How to Use Mini Heart Attacks to protect against Heart Attacks https://youtu.be/de4s4AjlsqU?feature=shared At around 3:40 into the...

Cardiac Preconditioning: How to Use Mini Heart Attacks to protect against Heart ...

Lavinia-Blue

•3 months ago

1 Reply

Dry eye issues

I was diagnosed with CLL probably 10-15 years ago and will begin treatment in the next month or two. I have been troubled with pink eye/dry eyes for over a...

I was diagnosed with CLL probably 10-15 years ago and will begin treatment in th...

CLLed

•3 months ago

12 Replies

CLL excel workbook

I am currently on the watch and wait protocol. Yesterday was changed to stage 1 with swollen cervical lymph nodes. I would like to download the mentioned...

I am currently on the watch and wait protocol. Yesterday was changed to stage 1 ...

BaldyDune1961

•3 months ago

4 Replies

Lymphoma listservs/communities

I have found this CLL community to be such a resource. I wanted to recommend similar resources (listservs, communities like this) for my best friend who was...

I have found this CLL community to be such a resource. I wanted to recommend si...

ElMaga

•3 months ago

1 Reply

Criteria for getting IgG Infusions

My IgG level has been in the 350mg/DL range for several years. I was getting IgG infusions about a year ago. These infusions were about every 3 weeks over a...

My IgG level has been in the 350mg/DL range for several years. I was getting Ig...

markjeep51

•3 months ago

6 Replies

How soon to start V+R treatment

After completing two cycles of BR in 2019, I remained in remission until 2023. However, starting in 2024, my Leucocyte and Lymphocyte counts began to show a...

After completing two cycles of BR in 2019, I remained in remission until 2023. H...

attarintiki

•3 months ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2025

Why does ibrutinib cause nail brittleness (onychorrhexis and onychoschizia) or curly hair in some CLL patients? What can you do about it?

How taxing is the role of caregiver during chemo?

Oil of Oregano & or Omega 3 oils while in treatment for CLL

Sonrotoclax-Zanubrutinib - Less Infection Risk

Bloodwork question -Bilirubin Total is 33 umol/L should b 20, Glomerular Filtration 59

update

Radiotherapy for breast cancer

Unmutated IGHV

brukinsa/zanubrutinib

RDW results

canker sores

brittle nails and hair

Blood tests....any help much appreciated

staying hydrated

Aciclovir

confused about survival

Life changes with CLL treatment?

IVIG infusions

advice on interacting and vaccines with CLL

no new HU CLL letter for last two days. I am updating old issues to get current issues for now. I am hoping to get back on the HUCll mailing

Second smear, waiting for flow cytometry results

New Research Results On CLL Medication

Ending 2 years of Acalabrutinib & Venetoclax

Candida guilliermondii

Cardiac Preconditioning and BCL-2

Dry eye issues

CLL excel workbook

Lymphoma listservs/communities

Criteria for getting IgG Infusions

How soon to start V+R treatment

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