Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for June 2021

Being lazy

Hi .Haven't post in a while. Got some Lymphedema going on in my leg. It has really gotten me down. I'm trying to get my primary Dr to be more sympathetic....

Hi .Haven't post in a while. Got some Lymphedema going on in my leg. It has real...

Bladee

•3 years ago

5 Replies

Husband with CLL - struggling with no energy, motivation and depression. Help.

Hi all, New member seeking support here. My husband was diagnosed with CLL about 6 years ago when his WBC was at 24000. We chose naturopathic therapy (vit C...

Hi all, New member seeking support here. My husband was diagnosed with CLL about...

qtrhorsechic

•3 years ago

20 Replies

Feeling sick with CLL and imbrutinib treatment

Feeling sick with imbrutinib - Does anyone else feel sick all the time with this treatment. My friend has been using this for over a year. He still often...

Feeling sick with imbrutinib - Does anyone else feel sick all the time with this...

1955Leilani

•3 years ago

8 Replies

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Travel nsurance

I have been on watch and wait for 6 years and am having difficulty getting travel insurance for a cruise anyone recommend a reasonably priced provider Mike A

I have been on watch and wait for 6 years and am having difficulty getting trave...

Cantabmike

•3 years ago

11 Replies

Very-low-carbohydrate diet enhances human T-cell immunity through immunometabolic reprogramming

Just stumbled on this one: https://www.embopress.org/doi/full/10.15252/emmm.202114323 21 June 2021 Note: "We have investigated this topic in an in vitro...

Just stumbled on this one: https://www.embopress.org/doi/full/10.15252/emmm.2021...

mantana

•3 years ago

1 Reply

Dental health and WBC

Anyone with dental implants or dental infection removed and have WBC decrease?

Stevelms

•3 years ago

3 Replies

Letter to GPs and Haematology Teams in UK, concerning Covid vax efficacy

Sorry for not posting this sooner; I assumed everyone would know about this (from about 5 days ago), but it only became apparent that it was news in an earlier...

Sorry for not posting this sooner; I assumed everyone would know about this (fro...

ChristyAnne_UK

•3 years ago

12 Replies

Bother

I was all set to start taking Acalibrutinib at the beginning of July and was happy with the choice. I have food intolerances, the major one of which is to...

I was all set to start taking Acalibrutinib at the beginning of July and was hap...

Bramleys

•3 years ago

26 Replies

Worried about mums blood test results.

My mum has had a high platelet count for around 8/9 years now. She was referred to a hematologist who thought she had essential thrombocythemia, her platelets...

My mum has had a high platelet count for around 8/9 years now. She was referred ...

Mummytonoah15

•3 years ago

3 Replies

Trouble with reading blood test

Hi, I thought white cells went up as you progressed? I have SLL and all my nodes are getting bigger but this weeks blood test had lymphs, WCC and neuts all...

Hi, I thought white cells went up as you progressed? I have SLL and all my nodes...

Waves01

•3 years ago

13 Replies

Monoclonal antibodies for those who have no immunity after vaccine

Has anyone investigated if there would be a possibility of having a dose of monoclonal antibodies to protect us from the COVID virus if we are in the subset of...

Has anyone investigated if there would be a possibility of having a dose of mono...

KevinCLLITP

•3 years ago

19 Replies

Neutrophils have bottomed out.

I am supposed to have finished my 4th round of FCR last week but the start of it was delayed for a week because my ANC was .5 (2-7.5 is normal). Blood was...

I am supposed to have finished my 4th round of FCR last week but the start of it...

CallmeT

•3 years ago

18 Replies

proactive GP to inform of diminished vaccine response

I have two papers in front of me, the preprint of the Birminham trials https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3845994 and an earlier paper first...

I have two papers in front of me, the preprint of the Birminham trials https://...

nigeldodd

•3 years ago

26 Replies

Richter Transformation Update 21-06-2021

Hello everyone. I would like to update the information of our Ricther Transformation group. A month and a half ago, a 42-year-old patient died. He had been...

Hello everyone. I would like to update the information of our Ricther Transforma...

Priss69

•3 years ago

10 Replies

Article on Risk associated with AZ vaccine

Last week I had my second AZ vaccination happily as my Haematologist said better in the arm than in the bottle. Reading today people will choose not to have...

Last week I had my second AZ vaccination happily as my Haematologist said better...

YelvertonDevon

•3 years ago

9 Replies

Reduction of Calquence to 100 mg per day

Please any chance to let me know, if anyone has reduced the above mentioned from 200 mg per day to 100 mg per day, because of bone and muscle pain? If so, any...

Please any chance to let me know, if anyone has reduced the above mentioned from...

Traudel

•3 years ago

13 Replies

Awake worrying? Stop it. You deserve a free online 2nd Opinion from a CLL expert: CLL Society's Expert Access™ Program. Apply today:)

Awake worrying? If you are not seeing a CLL expert and worry is keeping you awake because you are less than confident in the treatment your current provider...

Awake worrying? If you are not seeing a CLL expert and worry is keeping you awak...

bkoffman

CLL CURE Hero•3 years ago

2 Replies

Imbruvica CLL

I've been on Imbruvica 420mg for 14 days and switched to 280mg because of the side effects been on the medication for a month altogether and feel really...

I've been on Imbruvica 420mg for 14 days and switched to 280mg because of the s...

Tchapman

•3 years ago

11 Replies

Flare ups

Does anyone have flare ups from CLL tiredness pain from top to bottom and if so how long does it last

Does anyone have flare ups from CLL tiredness pain from top to bottom and if so ...

annabelle63

•3 years ago

1 Reply

Medication after trial ends

My son has CLL and has been on a Flare trial for five years. This has kept him reasonably well. What happens when the trial ends? Will he be kept on the same...

My son has CLL and has been on a Flare trial for five years. This has kept him r...

megbrook

•3 years ago

4 Replies

When do you start feeling better with A-brutinib?

My husband started Acalabrutinib in mid-April, and his numbers have definitely improved (and swollen nodes/spleen no longer bothering). However, he's still...

My husband started Acalabrutinib in mid-April, and his numbers have definitely i...

OaktownA

•3 years ago

10 Replies

Progression Free Survival

Sorry if this is a stupid question. We are told CLL is incurable. Just saw something saying there was good progression Free Survival 3 years after venetoclax...

Sorry if this is a stupid question. We are told CLL is incurable. Just saw somet...

Research123

•3 years ago

6 Replies

Thank you all

Thank you all... I'm feeling a lot better today ...much more emotionally stable lol ...it has been a struggle just to not burst into tears every few hours...

Thank you all... I'm feeling a lot better today ...much more emotionally stable ...

Lyniek

•3 years ago

8 Replies

A new $3.2 billion program will support the development of antiviral pills, which could start arriving by the end of this year.

A Pill to Treat Covid-19? The U.S. Is Betting on It. https://www.nytimes.com/2021/06/17/health/covid-pill-antiviral.html?smid=tw-share

A Pill to Treat Covid-19? The U.S. Is Betting on It. https://www.nytimes.com/202...

Harvist

•3 years ago

5 Replies

My GP just said something about CLL and Covid

Just been to see my GP who I have known professionally and personally for over 30 years. Minor surgery on my big toe! He was the one who diagnosed my CLL 11...

Just been to see my GP who I have known professionally and personally for over 3...

Harvist

•3 years ago

12 Replies

Venetoclax Low Blood

Is it possible to have G6PD deficiency while using Venetoclax ? My Dads haemoglobin is 5 .

Is it possible to have G6PD deficiency while using Venetoclax ? My Dads haemogl...

JessicAb94

•3 years ago

1 Reply

Coping with risk and uncertainty as lockdown eases

There was some heartfelt discussion recently on the thread Covid - Live With It?...

bennevisplace

•3 years ago

Be the first to reply

Venetoclax Side Effects

My Dad is on V ( 400mg). When he started his first 400 dose he got rash ( red to pink ) on his skin. It’s spreading. Please share what you now.

My Dad is on V ( 400mg). When he started his first 400 dose he got rash ( red t...

JessicAb94

•3 years ago

5 Replies

STORM CHASER MISSES THE TARGET

Following hard on the heels of Regeneron, who just posted lukewarm results from the RECOVERY trial...

Following hard on the heels of Regeneron, who just posted lukewarm results from ...

bennevisplace

•3 years ago

12 Replies

Need a summary of treatment options

Can someone refer me to an article or report that summarizes in plain language the various treatment options for CLL. I’ve read a lot of posts of people on...

Can someone refer me to an article or report that summarizes in plain language t...

Myfavoritecat

•3 years ago

11 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2021

Being lazy

Husband with CLL - struggling with no energy, motivation and depression. Help.

Feeling sick with CLL and imbrutinib treatment

Travel nsurance

Very-low-carbohydrate diet enhances human T-cell immunity through immunometabolic reprogramming

Dental health and WBC

Letter to GPs and Haematology Teams in UK, concerning Covid vax efficacy

Bother

Worried about mums blood test results.

Trouble with reading blood test

Monoclonal antibodies for those who have no immunity after vaccine

Neutrophils have bottomed out.

proactive GP to inform of diminished vaccine response

Richter Transformation Update 21-06-2021

Article on Risk associated with AZ vaccine

Reduction of Calquence to 100 mg per day

Awake worrying? Stop it. You deserve a free online 2nd Opinion from a CLL expert: CLL Society's Expert Access™ Program. Apply today:)

Imbruvica CLL

Flare ups

Medication after trial ends

When do you start feeling better with A-brutinib?

Progression Free Survival

Thank you all

A new $3.2 billion program will support the development of antiviral pills, which could start arriving by the end of this year.

My GP just said something about CLL and Covid

Venetoclax Low Blood

Coping with risk and uncertainty as lockdown eases

Venetoclax Side Effects

STORM CHASER MISSES THE TARGET

Need a summary of treatment options

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