Posts - CLL Support | HealthUnlocked

CLL Support

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All posts for April 2025

first week after back to back gazyva infusions

first week after back to back gazyva infusions not feeling great enlarged spleen still causing abdominal pressure

first week after back to back gazyva infusions not feeling great enlarged splee...

Vski

•12 hours ago

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Hair turned white during O&V treatment?

I've been on O&V treatment since last March. (2024) I finished up the O infusions in August last year and have been on oral V since March 2024. I've had to...

I've been on O&V treatment since last March. (2024) I finished up the O infusio...

TennCLL

•14 hours ago

3 Replies

No new emails since Sunday

anyone else having this issue?

GB10

•19 hours ago

2 Replies

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Back to the drawing board

Hello dear people Just returned from a visit with CLL specialist. Finished O+V in February 2023 and latest WBC (33,000) and lymphocyte counts (75%) so...

Hello dear people Just returned from a visit with CLL specialist. Finished O+V...

Thundercat2

•19 hours ago

8 Replies

RSV Vaccine, Should this be offered to someone diagnosed with CLL?

My husband is currently undergoing the watch-and-wait programme after receiving a diagnosis November 2024. As CLL is all new to me, I am diligently seeking...

My husband is currently undergoing the watch-and-wait programme after receiving ...

sunshine-happy

•1 day ago

11 Replies

RSV and CLL?

So my oncologist was less concerned about RSV but my primary care physician was pretty insistent I should get an RSV vaccine. US Center for Disease Control...

So my oncologist was less concerned about RSV but my primary care physician was ...

scryer99

•2 days ago

22 Replies

Vitamin B12

Hi AllAny advice on this looks quite high Serum vitamin B12 level 1233 ng/L should be [197.0 - 771.0] Best wishes Jules still flying

Hi AllAny advice on this looks quite high Serum vitamin B12 level 1233 ng/L sho...

TheFlyer

•2 days ago

18 Replies

Melatonin--beware?

Just passing on that Consumer Labs just published an article about melatonin negatives, one of which is that it increases lymphocytes! That's what it said....

Just passing on that Consumer Labs just published an article about melatonin neg...

Vlaminck

•4 days ago

33 Replies

Type 2 Diabetes in 13 year old

Hi, my nephew was 13 year old when he got diagnosed with Type 2 diabetes. We are trying to manage it through diet and exercise (physical activity - playing...

Hi, my nephew was 13 year old when he got diagnosed with Type 2 diabetes. We are...

PreetyI

•4 days ago

2 Replies

Not getting emails ?

Hi everyone, I’m having problems receiving emails. I’ve looked in my junk box and they are all there ? 144 of them can any one help thank you Ros

Hi everyone, I’m having problems receiving emails. I’ve looked in my junk box an...

Pekingese

•4 days ago

3 Replies

Brukinsa side effects.

Why is one side effect of Brukinsa an INCREASED risk of infections? (specifically upper respiratory). Has anyone had this happen?

Why is one side effect of Brukinsa an INCREASED risk of infections? (specificall...

davidgrush

•4 days ago

12 Replies

Will more of my lymphocytes be normal ones within my first three weeks on Brukinsa?

I have had an international trip planned for 3 weeks from now. Should I not go due to potential for side effects or infections?

I have had an international trip planned for 3 weeks from now. Should I not go d...

davidgrush

•4 days ago

10 Replies

Simon

Hi there, This month is my three year anniversary. After a number of blood tests l was told that l have Low Grade non Hodgkin's Lymphoma. (LGNH) well you know...

Hi there, This month is my three year anniversary. After a number of blood test...

Proty

•4 days ago

4 Replies

Imbruvica, remission and dose frequency

hi everyone Unless I’m mistaken, people on ibrutinib become resistant at different times. Some can tolerate for decades and some for 5 or 6 years let’s say....

hi everyone Unless I’m mistaken, people on ibrutinib become resistant at diffe...

GettinThruIt

•4 days ago

12 Replies

Just diagnosed with MBL

Hi, I'm a 56yr old female from London. I've recently been diganosed with MBL (high count) but the hematologist really didn't explain it all in a way that I...

Hi, I'm a 56yr old female from London. I've recently been diganosed with MBL (h...

Juju0864

•5 days ago

13 Replies

BTK Inhibitors and Cardiac Health Webinar

Hi everyone, I've shared a few webinars in the past, and it seems that people enjoy them. So, I wanted to let you know about an upcoming webinar with Dr....

Hi everyone, I've shared a few webinars in the past, and it seems that people ...

HungryB

•5 days ago

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opinions on best treatment options and what tests to expect prior to starting treatment (UK)

Hello all, my husband (35) was diagnosed with CLL in January (3 months ago) and to be honest, everything has progressed quickly since then and we are still...

Hello all, my husband (35) was diagnosed with CLL in January (3 months ago) and ...

Nico6

•5 days ago

42 Replies

neutrophil Decline

I just went in for my quarterly checkup (on Zanibrutinib maintenance therapy) and my neutrophils declined meaningfully to put me into neutropenia. Curious if...

I just went in for my quarterly checkup (on Zanibrutinib maintenance therapy) an...

Eagles95

•5 days ago

5 Replies

Motorists Petrol Pumps- Why wear gloves?

A recent study has revealed alarming traces of E. coli, Salmonella, and even faecal matter on fuel pumps across the United Kingdom. Medical professionals...

A recent study has revealed alarming traces of E. coli, Salmonella, and even fae...

sunshine-happy

•5 days ago

28 Replies

Hard to fight even a small bug

hi, everyone, my husband takes daily Acalabrutinib and receives monthly IVIG for CLL, and has been doing wonderfully, running several miles a day and in...

hi, everyone, my husband takes daily Acalabrutinib and receives monthly IVIG f...

OaktownA

•6 days ago

6 Replies

Veneticlax and rituxmnab

Hi all 5 months into my treatment and all is going so well,back at work, feeling good, skin issues all cleared up . Got two more cycles of rituxmnab to go...

Hi all 5 months into my treatment and all is going so well,back at work, feeli...

cartwheels

•6 days ago

7 Replies

muscle and weight loss

Does CLL cause muscle and weight loss?

Tedco

•6 days ago

12 Replies

Update - CLL- RT- Breast Cancer- Myelodysplasia- Future Transplant

Hello I want to update my story. In 2017, I was diagnosed with CLL and treated with Ibrutinib after six months. Eight months later, in 2018, I was diagnosed...

Hello I want to update my story. In 2017, I was diagnosed with CLL and treated...

Priss69

•7 days ago

14 Replies

CLL Trisomy 12

Hello! My mom was recently diagnosed with CLL and just learned on her FISH test she has Trisomy 12 which is 45% of her cells. I was wondering if anyone had...

Hello! My mom was recently diagnosed with CLL and just learned on her FISH t...

JennaP61

•7 days ago

7 Replies

Ibrutinib 420mg

I have now started my treatment journey with ibrutinib Also been given Septrin, Antiviral and folic acid tablets. I have only been on them for 2 days but...

I have now started my treatment journey with ibrutinib Also been given Septrin, ...

davjb15121

•7 days ago

4 Replies

zanubrutinib

I’m getting ready to start this drug and would love to hear from you if you’ve been treated with it. I’ve previously had FCR and then a trial with venetoclax,...

I’m getting ready to start this drug and would love to hear from you if you’ve b...

beanlake14

•8 days ago

24 Replies

Calquence

I started Calquence 4 weeks ago and just cut back dosage due to severe pain in my left wrist. I mainly started treatment because of an enlarged spleen, which...

I started Calquence 4 weeks ago and just cut back dosage due to severe pain in m...

Tedco

•8 days ago

15 Replies

Medicare Part D

I am in the U.S. and in the process of signing up for Medicare Part D. At the moment, my CLL & AIHA are stable (thank you, Jesus). My specialist has said my...

I am in the U.S. and in the process of signing up for Medicare Part D. At the mo...

Goopteal

•8 days ago

22 Replies

Diarrhoea

I was on Watch and Wait for several years. Joined this group when diagnosed. In September I commenced treatment. I commenced Ibrutinib 420mgs. Than 2 months...

I was on Watch and Wait for several years. Joined this group when diagnosed. In...

B4488

•8 days ago

5 Replies

painful tongue

My partner is on Ibrutinib and Venetoclax and has developed painful red sores and cuts on his tongue. It makes eating difficult and he has lost some appetite....

My partner is on Ibrutinib and Venetoclax and has developed painful red sores an...

Orangesand

•9 days ago

16 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2025

first week after back to back gazyva infusions

Hair turned white during O&V treatment?

No new emails since Sunday

Back to the drawing board

RSV Vaccine, Should this be offered to someone diagnosed with CLL?

RSV and CLL?

Vitamin B12

Melatonin--beware?

Type 2 Diabetes in 13 year old

Not getting emails ?

Brukinsa side effects.

Will more of my lymphocytes be normal ones within my first three weeks on Brukinsa?

Simon

Imbruvica, remission and dose frequency

Just diagnosed with MBL

BTK Inhibitors and Cardiac Health Webinar

opinions on best treatment options and what tests to expect prior to starting treatment (UK)

neutrophil Decline

Motorists Petrol Pumps- Why wear gloves?

Hard to fight even a small bug

Veneticlax and rituxmnab

muscle and weight loss

Update - CLL- RT- Breast Cancer- Myelodysplasia- Future Transplant

CLL Trisomy 12

Ibrutinib 420mg

zanubrutinib

Calquence

Medicare Part D

Diarrhoea

painful tongue

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