Posts - CLL Support | HealthUnlocked

CLL Support

22,619 members • 38,849 posts

All posts for July 2021

Ventoclax

Has any one getting free ventoclax not on Research and how long for?

581959

•3 years ago

8 Replies

Nubie

Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Currently receiving immunoglobulin infusions monthly

Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Cu...

Mother1943

•3 years ago

26 Replies

Covid 19 infectivity

Hello, My husband is the one with CLL, but just over nine days ago I tested positive for Covid 19 (in spite of having had both vaccines and barely going out)....

Hello, My husband is the one with CLL, but just over nine days ago I tested pos...

strongmouse

•3 years ago

10 Replies

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Does lemon contraindicate Imbruvica

-I am in remission cut down to 2/3 of medication (CLL)--I know that the wonderful colored grapefruit is bad-but have heard different takes on lemons--I have...

-I am in remission cut down to 2/3 of medication (CLL)--I know that the wonderfu...

wilhoitaz

•3 years ago

1 Reply

This is for our benefit - please share as widely as possible!

It's a simple and timely MESSAGE FOR EVERYONE out there, on our behalf, from the CEO of Blood Cancer UK https://www.youtube.com/watch?v=dRbO4dTbEHo Open in...

It's a simple and timely MESSAGE FOR EVERYONE out there, on our behalf, from the...

bennevisplace

•3 years ago

11 Replies

Frontline Ibrutinib/Venetoclax Elicits Durable Responses in CLL With Undetectable MRD

Fixed-duration ibrutinib plus venetoclax produced superior progression-free survival when compared with chlorambucil plus obinutuzumab in the frontline...

Fixed-duration ibrutinib plus venetoclax produced superior progression-free su...

lankisterguy

Volunteer•3 years ago

3 Replies

Long-Term Data Showcase the Clinical Utility of Fixed-Duration Venetoclax/Obinutuzumab in Treatment-Naïve CLL

Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions compared with chemoimmunotherapy in elderly patients with previously...

Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions ...

lankisterguy

Volunteer•3 years ago

1 Reply

Does fatigue increase the longer you are on Calquence for CLL

Extreme fatigue on Calquence

Mackiec1108

•3 years ago

3 Replies

Defend your space with a loud T-shirt - "#stillatrisk PLEASE KEEP YOUR DISTANCE"

An extension of the idea of the warning badge, per Blood Cancer UK. T-shirt to get you noticed and keep you that bit safer. Message front +/-back +/-sides....

An extension of the idea of the warning badge, per Blood Cancer UK. T-shirt to g...

bennevisplace

•3 years ago

31 Replies

Imbrutinib and High Blood Pressure

My husband has CLL/SLL with 11q deletion. He’s been on Imbrutinib for about three years. He’s suddenly developed high blood pressure that is hard to control....

My husband has CLL/SLL with 11q deletion. He’s been on Imbrutinib for about thre...

Zappymom12

•3 years ago

27 Replies

Antibody testing

Does anyone know if we can ask for testing anywhere? I had FCR in 2018 and of course have had both jabs. I’d love to know if I have any antibodies. Thanks

Does anyone know if we can ask for testing anywhere? I had FCR in 2018 and of c...

Mandy56

•3 years ago

21 Replies

Open letter from cancer charities to the public regarding vulnerable members of our communities in UK

This is the open letter which has been signed by forty UK charities including six blood cancer charities of which CLL Support is one. Not sure quite how...

This is the open letter which has been signed by forty UK charities including si...

Jm954

Administrator•3 years ago

21 Replies

Extreme fatigue… why?

How to cope with extreme fatigue - my mum is in Acalabrutenib and is suffering and I want to know if this means disease progression.

How to cope with extreme fatigue - my mum is in Acalabrutenib and is suffering a...

Womble69

•3 years ago

2 Replies

Can you take penicillin while on Imbruvica

I have been on imbruvia for 2 weeks, I had a crown on my back tooth replaced a few days ago, the dentist gave me a shot in my mouth to deaden my gums while...

I have been on imbruvia for 2 weeks, I had a crown on my back tooth replaced a f...

Ebenezer68

•3 years ago

3 Replies

Did anyone else receive their LLS Antibody results?

I received my LLS Antibody results. After two Pfizer jabs, I apparently don't have any antibodies. Can I assume no booster will alter these results?

I received my LLS Antibody results. After two Pfizer jabs, I apparently don't ha...

StobiMan

•3 years ago

18 Replies

Immune Compromised Patients May Get 3rd Vaccination

I mentioned this story in a reply I just made to a different Post, and decided it was too important a story to leave only in that reply. So I'm now posting...

I mentioned this story in a reply I just made to a different Post, and decided i...

wizzard166

•3 years ago

41 Replies

Worried Lymphocyte Count Up Platelets down

Hi Please can anyone advise on my latest FBC. My Lymphocyte count has gone from 27.72 to 42.86 and Platelets down from 138to 116 in 2 months. I did have...

Hi Please can anyone advise on my latest FBC. My Lymphocyte count has gone from ...

Strech51

•3 years ago

14 Replies

Severe shin pain

I have been on imbruvica for about 2 months. After about 2 weeks I had a horrible rash everywhere. Stopped taking it for a couple of weeks while I was on...

I have been on imbruvica for about 2 months. After about 2 weeks I had a horribl...

Captaintalbert

•3 years ago

12 Replies

Petition for monoclonal treatment for covid in immune suppressed patients

https://www.change.org/p/health-secretary-ensure-immunosupressed-people-have-access-to-monoclonal-antibody-treatment-for-covid Thought this is worth sharing...

https://www.change.org/p/health-secretary-ensure-immunosupressed-people-have-acc...

Mandy56

•3 years ago

2 Replies

Rash after Venclexta

Any others on Venclexta develop a rash after starting on full dose regime?

40fo

•3 years ago

7 Replies

Is my cll progressing

I was diagnosed in 2003 Initially my platlets was above 1.5 lakhs Now suddenly it has dropped to 1 lakh WBC around 50000 Three years back had secondary cancer...

I was diagnosed in 2003 Initially my platlets was above 1.5 lakhs Now suddenly i...

Ashwas

•3 years ago

2 Replies

Doubling of absolute Lymphoctes

It has been 11 months now since I was diagnosed with CLL. Thereafter I have been tracking my WBC and Lymphocytes . The trend curve over a year is in the...

It has been 11 months now since I was diagnosed with CLL. Thereafter I have bee...

WilliamTan

•3 years ago

10 Replies

Ultra V Clinical

Ultra V clinical trial, is anyone presently on this? I’m going to be entering this soon and wonder if there is anything I should know, or ask?

Ultra V clinical trial, is anyone presently on this? I’m going to be entering th...

Sherms757

•3 years ago

13 Replies

CDC advisers to consider additional coronavirus dose for immunocompromised patients. Meeting scheduled for July 22

A federal advisory panel is expected next week to consider whether health-care workers should be allowed to give additional coronavirus shots to patients with...

A federal advisory panel is expected next week to consider whether health-care w...

WinJ3

•3 years ago

8 Replies

COVID and CLL

With COVID-19 raging in the UK and USA, the immunocompromised such as us are feeling more vulnerable. But the US/CDC may finally do something sensible for...

With COVID-19 raging in the UK and USA, the immunocompromised such as us are fee...

whmk

•3 years ago

6 Replies

T cell and antibody responses induced by a single dose of ChAdOx1 nCoV-19 (AZD1222) vaccine in a phase 1/2 clinical trial

Just found this whilst trawling the net, its it good or bad for Ibrutinib users? https://www.nature.com/articles/s41591-020-01194-5

Just found this whilst trawling the net, its it good or bad for Ibrutinib users?...

zaax

•3 years ago

12 Replies

My dentist made me smile!

"Dear --------- As you are aware the government are making changes from the 19th July regarding the COVID restrictions. These changes apply to social contact...

"Dear --------- As you are aware the government are making changes from the 19th...

bennevisplace

•3 years ago

4 Replies

3rd Covid shot while still receiving (O & V)?

I received my Moderna Covid vaccine Jan and Feb 2021 while undergoing treatment for CLL (O & V). No ill effects. I have read that taking and while taking...

I received my Moderna Covid vaccine Jan and Feb 2021 while undergoing treatment ...

ronsolo306

•3 years ago

14 Replies

NICE MORNING

Quest Blood workup was posted this morning to me .. the 3 Items that are in RED for White Blood count and Total Monocytes and Absolute lymphocytes are down...

Quest Blood workup was posted this morning to me .. the 3 Items that are in RED ...

lacroixx1

•3 years ago

2 Replies

Gastroenteritis and CLL

Hi there I’ve had a bout of gastroenteritis and it’s taking a few weeks to shift and make me feel well again. Anyone else had this and any advice on what might...

Hi there I’ve had a bout of gastroenteritis and it’s taking a few weeks to shift...

anapurna

•3 years ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2021

Ventoclax

Nubie

Covid 19 infectivity

Does lemon contraindicate Imbruvica

This is for our benefit - please share as widely as possible!

Frontline Ibrutinib/Venetoclax Elicits Durable Responses in CLL With Undetectable MRD

Long-Term Data Showcase the Clinical Utility of Fixed-Duration Venetoclax/Obinutuzumab in Treatment-Naïve CLL

Does fatigue increase the longer you are on Calquence for CLL

Defend your space with a loud T-shirt - "#stillatrisk PLEASE KEEP YOUR DISTANCE"

Imbrutinib and High Blood Pressure

Antibody testing

Open letter from cancer charities to the public regarding vulnerable members of our communities in UK

Extreme fatigue… why?

Can you take penicillin while on Imbruvica

Did anyone else receive their LLS Antibody results?

Immune Compromised Patients May Get 3rd Vaccination

Worried Lymphocyte Count Up Platelets down

Severe shin pain

Petition for monoclonal treatment for covid in immune suppressed patients

Rash after Venclexta

Is my cll progressing

Doubling of absolute Lymphoctes

Ultra V Clinical

CDC advisers to consider additional coronavirus dose for immunocompromised patients. Meeting scheduled for July 22

COVID and CLL

T cell and antibody responses induced by a single dose of ChAdOx1 nCoV-19 (AZD1222) vaccine in a phase 1/2 clinical trial

My dentist made me smile!

3rd Covid shot while still receiving (O & V)?

NICE MORNING

Gastroenteritis and CLL

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