Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,045 posts

All posts for August 2020

For Aussies, an update on the CLL PEEK (Personal, Experience, Expectations, Knowledge) Survey, which is still open!

Further to my previous post:...

AussieNeil

Administrator•4 years ago

2 Replies

BLOOD TEST

Hi all, Have been on Acalabrutinib for 2 weeks now due some blood tests this week, usual ones FBC, IGS, URA these are familiar to me but their is one marked as...

Hi all, Have been on Acalabrutinib for 2 weeks now due some blood tests this wee...

jaybrjod

•4 years ago

7 Replies

Anyone have experience with Venclexta capped at 200 mg?

I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and...

I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclext...

Flute117

•4 years ago

15 Replies

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Ibrutinib plus fludarabine, cyclophosphamide, and rituximab as initial treatment for younger patients with CLL

This is an abstract from the Lancet article. There's a fair bit of detail missing regarding the profile of the CLL patients in terms of IgHV mutation status...

This is an abstract from the Lancet article. There's a fair bit of detail missi...

Jm954

Administrator•4 years ago

18 Replies

Itching on Acalabutinib

I am on Acalabutinib and have started itching especially after a shower and when I go to bed. I get some relief from some antihistamines (Chlorphenamine works...

I am on Acalabutinib and have started itching especially after a shower and when...

JB656

•4 years ago

8 Replies

Can taking Bactrim make you neutropenic?

My husband has been on Ibrutinib for 2 years now, and has taking Bactrim and Acyclovir along with it. Up until four months ago, his numbers have been in the...

My husband has been on Ibrutinib for 2 years now, and has taking Bactrim and Acy...

kathymac52

•4 years ago

7 Replies

Pain Meds and Ibrutinib

Wondering if anyone knows of safe non opioid pain medication while on ibrutinib. Especially an anti-inflammatory

Wondering if anyone knows of safe non opioid pain medication while on ibrutinib....

Davidcara

•4 years ago

35 Replies

candidiasis

Howdy everyone! That's how we greet each other in the great state of Nebraska! I have a question concerning yeast infections. I get many bladder infections,...

Howdy everyone! That's how we greet each other in the great state of Nebraska! I...

Vintagemama

•4 years ago

5 Replies

2 questions: tech support and supplements

Hi everyone, My first question: is there a way to search CLL Support only? Sorry if this is obvious but if I try to search using a key word I get responses...

Hi everyone, My first question: is there a way to search CLL Support only? Sor...

CoCoLuna11

•4 years ago

4 Replies

Locking posts

Sorry, can someone tell me how to lock my posts.

Professors

•4 years ago

1 Reply

Have begun Gazyva and soon to begin venetoclax

I'm a 77 y/o Caucasian male. Diagnosed with CLL in 2005. Treatment free until this week. Began with Gazyva infusion Thursday, small issue with first 100 ml...

I'm a 77 y/o Caucasian male. Diagnosed with CLL in 2005. Treatment free until th...

ronsolo306

•4 years ago

13 Replies

Does imbruvica make you lose your hair

I have CLL

Neciaed1

•4 years ago

23 Replies

Imbruvica cost

I have cll with a 17p TP53 deletion. I was prescribed Imbruvica which has a $2340 copay. Does anyone know of a cheaper drug? Thank you

I have cll with a 17p TP53 deletion. I was prescribed Imbruvica which has a $23...

Professors

•4 years ago

28 Replies

CLL with CAD

CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL...

CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vie...

Hidden

•4 years ago

3 Replies

CLL and Cold Blood

Hoping someone can help.... my uncle has CLL but also a cold blood condition called Agglutinin... has anyone heard of it?!? He lives in central Florida. I am...

Hoping someone can help.... my uncle has CLL but also a cold blood condition cal...

nvparmelee

•4 years ago

10 Replies

My Ibrutinib/Venetoclax journey

Hi all, Hope you are all staying safe in these strange times. Anyway, yet another post on my journey. I went to the research dept for a checkup back in...

Hi all, Hope you are all staying safe in these strange times. Anyway, yet anot...

Oleboyredw-uk

•4 years ago

16 Replies

Completely bonkers!

Hi everyone. Im from Nova Scotia, Canada and I'm 60 years old. This is all so new to me. I recieved a call from my Dr last Tuesday (August 18,2020) and since...

Hi everyone. Im from Nova Scotia, Canada and I'm 60 years old. This is all so n...

Oceanbly

•4 years ago

61 Replies

betty1957

Hi everyone I was diagnosed with CLL in July, just want to know if it's normal to have extreme exhaustion and aching bones all the time, i take folic acid &...

Hi everyone I was diagnosed with CLL in July, just want to know if it's normal t...

betty1957

•4 years ago

18 Replies

Returning to work

Is it advisable to return to work as an art tutor of small groups of students following Covid Safety regulations? I live in a household where everyone is out...

Is it advisable to return to work as an art tutor of small groups of students fo...

Paintsh

•4 years ago

1 Reply

Hurricane weather

Cajun Jeff, hope you are safe and well in view of the inclement weather that you are having in your neck of the woods.

Cajun Jeff, hope you are safe and well in view of the inclement weather that yo...

skytortoise

•4 years ago

3 Replies

Ibrutinib and Probiotics

Wondering if anyone knows if it is safe to take probiotics while on ibrutinib. Specifically wondering about a kefir that’s has added probiotics after...

Wondering if anyone knows if it is safe to take probiotics while on ibrutinib. ...

Davidcara

•4 years ago

14 Replies

How is everyone doing during this pandemic?

My self i havent worked in six months...going a little cra cra..but blessed to be alive and well. Praying for Peace and Healing for everyone!

My self i havent worked in six months...going a little cra cra..but blessed to b...

kollock93

•4 years ago

5 Replies

Worried About Going Back to Work?

Worried about going back to work? The CLL Society continues to urge all CLL patients to strictly avoid being exposed to COVID-19. Stay home. Limit contact with...

Worried about going back to work? The CLL Society continues to urge all CLL pati...

bkoffman

CLL CURE Hero•4 years ago

13 Replies

Gazyva/Venclexta

My husband was diagnosed with CLL 2 years ago. It has been a watch and wait treatment. He recently started on the Obinutuzumab/ Venclexta treatment. His very...

My husband was diagnosed with CLL 2 years ago. It has been a watch and wait tre...

gardenman68

•4 years ago

4 Replies

ibrutinib. the white cells rise again.

Hello! Sorry for my English. I have been taking ibrutinib for 6 months. no side effects. leukocytes returned to normal. But now they are rising a little...

Hello! Sorry for my English. I have been taking ibrutinib for 6 months. no si...

Ricotta

•4 years ago

2 Replies

Video Journal of Hematologic Oncology the chronic lymphocytic leukemia (CLL) channel- intended for healthcare professionals

For any members comfortable in advanced MedSpeak- there is an excellent series of videos - CLL doctors from around the world speaking to their colleagues....

For any members comfortable in advanced MedSpeak- there is an excellent series o...

lankisterguy

Volunteer•4 years ago

2 Replies

Lymph node biopsy update

10 days ago I had an excision biopsy on my right axilla. A lymph node was skillfully removed under local anaesthetic. My consultant at RMH called to tell me...

10 days ago I had an excision biopsy on my right axilla. A lymph node was skillf...

aloneifly

•4 years ago

7 Replies

Alacabrutinib for relapsed CLL

Hi everyone, I was just wondering if anyone in this group is from Australia and has had alacabrutinib for relapsed CLL. It would be great to know more Thank...

Hi everyone, I was just wondering if anyone in this group is from Australia and ...

lymphomaoz

•4 years ago

2 Replies

Acalabrutnib and omeprazole

Hi, I’m starting acalabrutinib on Friday.... I am also taking omeprazole daily. Is it ok to take both drugs at the same time. Or is there an order or time...

Hi, I’m starting acalabrutinib on Friday.... I am also taking omeprazole daily. ...

Cheeseandchips

•4 years ago

14 Replies

Risk of SARS-CoV-2 transmission from asymptomatic people in different settings

The diagram above is from a review paper, published yesterday in the British Medical Journal https://www.bmj.com/content/370/bmj.m3223 The diagram brings...

The diagram above is from a review paper, published yesterday in the British Med...

bennevisplace

•4 years ago

7 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2020

For Aussies, an update on the CLL PEEK (Personal, Experience, Expectations, Knowledge) Survey, which is still open!

BLOOD TEST

Anyone have experience with Venclexta capped at 200 mg?

Ibrutinib plus fludarabine, cyclophosphamide, and rituximab as initial treatment for younger patients with CLL

Itching on Acalabutinib

Can taking Bactrim make you neutropenic?

Pain Meds and Ibrutinib

candidiasis

2 questions: tech support and supplements

Locking posts

Have begun Gazyva and soon to begin venetoclax

Does imbruvica make you lose your hair

Imbruvica cost

CLL with CAD

CLL and Cold Blood

My Ibrutinib/Venetoclax journey

Completely bonkers!

betty1957

Returning to work

Hurricane weather

Ibrutinib and Probiotics

How is everyone doing during this pandemic?

Worried About Going Back to Work?

Gazyva/Venclexta

ibrutinib. the white cells rise again.

Video Journal of Hematologic Oncology the chronic lymphocytic leukemia (CLL) channel- intended for healthcare professionals

Lymph node biopsy update

Alacabrutinib for relapsed CLL

Acalabrutnib and omeprazole

Risk of SARS-CoV-2 transmission from asymptomatic people in different settings

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