Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for August 2020

Gazyva and Low Platelet Count?

Hi all. I completed the first 1000mg of Gazyva last week and am scheduled for round two in a couple days. I don’t have the actual numbers, but white blood...

Hi all. I completed the first 1000mg of Gazyva last week and am scheduled for ...

msccsm11

•4 years ago

10 Replies

How do I handle a family stay at my home

Hi, I am new to CLL and do know there are issues with immune systems. I haven't seen my daughter in Glasgow since Christmas, I live on the south coast. A...

Hi, I am new to CLL and do know there are issues with immune systems. I haven't ...

Mal42

•4 years ago

10 Replies

Inspirational 20-year CLL Survivor Terry Evans (CLL Society's Director of Support Groups) in CURE's August 27th Webinar Don't Miss It!

Upcoming CURE Webinar: Terry Evans, 20-year CLL Survivor (CLL Society's own Director of Support Groups joins panelists Dr. Erlene Seymour and Dr. Hun Ju Lee in...

Upcoming CURE Webinar: Terry Evans, 20-year CLL Survivor (CLL Society's own Dire...

bkoffman

CLL CURE Hero•4 years ago

13 Replies

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swollen tonsils

anyone have complications of swollen tonsils and their cll

podris

•4 years ago

22 Replies

CLL and minding grandchildren again. One in part time nursery and one starting school full time.

As my granddaughter is starting school next month and we will be picking her up once a week from school. Plus, we are minding her young brother once a week,...

As my granddaughter is starting school next month and we will be picking her up ...

GSBS1954

•4 years ago

11 Replies

Results of my first Scanner. Richter’s Transformation

Hello family. I put the results of my first scan that I did yesterday. Tomorrow I have a consultation with my hematologist. What is your opinion?. A hug....

Hello family. I put the results of my first scan that I did yesterday. Tomorrow ...

Priss69

•4 years ago

13 Replies

Flair trial

Does anyone know when this trial finishes and what the outcome is likely to be? Presumably they are trying different drug treatments - does that mean the nhs...

Does anyone know when this trial finishes and what the outcome is likely to be? ...

Research123

•4 years ago

23 Replies

Petechia on legs from Calquence?

I've developed hundreds of little broken blood vessels on my lower legs while taking Calquence. Anyone else getting this?

I've developed hundreds of little broken blood vessels on my lower legs while ta...

Keptindark

•4 years ago

7 Replies

Registration is Open – Save the date! October 10, 2020! Join the CLL Society for our Global Virtual Patient & Caregiver Educational Forum

Registration is Open – Save the date! October 10, 2020! Join the CLL Society for our Global Virtual Patient & Caregiver Educational Forum with faculty from...

Registration is Open – Save the date! October 10, 2020! Join the CLL Society for...

bkoffman

CLL CURE Hero•4 years ago

1 Reply

Shingles

I have had an attack of shingles on my thorax, treated with acyclovir. It started 2 weeks ago. The spots have all cleared, although the skin is quite tender...

I have had an attack of shingles on my thorax, treated with acyclovir. It starte...

Thinkimjob

•4 years ago

24 Replies

Ibrutinib side effects

I am on Ibrutinib for 1.5 month now. I lost 17kg so far; is this considered a side effect of the treatment?

I am on Ibrutinib for 1.5 month now. I lost 17kg so far; is this considered a si...

AshGS

•4 years ago

8 Replies

LOXO-305 UPDATE 7 CYCLES COMPLETE

A while back I posted some results from my LOXO-305 clinical trial. I am now into my 8th 28 day cycle with no side effects and some good lab results. Almost...

A while back I posted some results from my LOXO-305 clinical trial. I am now int...

steve5441

•4 years ago

29 Replies

Kids need school, but...

... don't get too close if you are vulnerable to Covid19. https://medicalxpress.com/news/2020-08-children-silent-spreaders-sars-cov-.html Not what I wanted to...

... don't get too close if you are vulnerable to Covid19. https://medicalxpress....

bennevisplace

•4 years ago

17 Replies

Rituxan

Hi! Today I saw my doctor (I live in asmall town, and he is the only cancer doctor we have.) He said I needed a rituxan infusion, because my immune system is...

Hi! Today I saw my doctor (I live in asmall town, and he is the only cancer doc...

Vintagemama

•4 years ago

6 Replies

lymph nodes and ear ache

Hello everyone. I haven't posted in a while But I need the wisdom of your experience. Here's my question: have you had ear aches caused by swollen lymph nodes...

Hello everyone. I haven't posted in a while But I need the wisdom of your experi...

DMary

•4 years ago

31 Replies

NIGHT SWEATS

I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my...

I would appreciate input from members on Night Sweats. Although I am a little o...

wizzard166

•4 years ago

26 Replies

Duvelisib + FCR (DFCR) frontline therapy for younger CLL patients - study results (Aug. 2020)

"In summary, our phase 1b/2 study identified a recommended phase 2 dose of duvelisib 25 mg bid when given in combination with FCR in younger CLL patients...

"In summary, our phase 1b/2 study identified a recommended phase 2 dose of duvel...

avzuclav

•4 years ago

1 Reply

MBL

Hi, I was told by my regular GP to go back to the hematologist since haven’t been there in four years. My CBC shows 5.6 level lymph’s. I was already told I...

Hi, I was told by my regular GP to go back to the hematologist since haven’t bee...

Moe1125

•4 years ago

1 Reply

Help still needed - anyone willing to share their experience of Venetoclax + Obintuzumab treatment?

Have you have received Venetoclax + Obintuzumab as your first treatment and are you living in Scotland or the UK? It may have been as part of a clinical trial,...

Have you have received Venetoclax + Obintuzumab as your first treatment and are ...

Jm954

Administrator•4 years ago

2 Replies

Webinar - Living with the psychological impact of leukaemia and lymphoma in the COVID-19 era

From time to time CLL Support partner with other charities that share our aims and objectives and we are pleased to promote this webinar from Leukaemia Care...

From time to time CLL Support partner with other charities that share our aims a...

Jm954

Administrator•4 years ago

6 Replies

Aggressive CLL Treatment Options: Are They Right for Me? Thursday, August 27th at 1:00 PM Pacific/ 4:00 PM Eastern

Aggressive CLL Treatment Options: Are They Right for Me? Thursday, August 27th at 1:00 PM Pacific/ 4:00 PM Eastern by Patient Power How do people living with...

Aggressive CLL Treatment Options: Are They Right for Me? Thursday, August 27th...

lankisterguy

Volunteer•4 years ago

Be the first to reply

Insect bites - swelling

I have recently started Ibrutinib last month and an insect bite close to my ankle has caused swelling. Does anyone else have in issue with swelling due to...

I have recently started Ibrutinib last month and an insect bite close to my ankl...

Murman

•4 years ago

8 Replies

Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community

Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- - Are you ready...

Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymph...

AussieNeil

Founder Admin•4 years ago

10 Replies

O + V: Update 4!

Hi everyone, It’s been a few months since my last update; I’m sure you’ve all been waiting w/ bated breath (lol). Anyhow I finished my Obinutuzumab infusions...

Hi everyone, It’s been a few months since my last update; I’m sure you’ve all b...

DRM18

•4 years ago

25 Replies

Are you a CLL patient worried about returning to work? CLL Society's COVID-19 Official Statement. Share with HR, co-workers, friends, family

Are you a CLL patient worried about going back to work? The CLL Society, the largest patient-focused CLL nonprofit organization in the USA, in consultation...

Are you a CLL patient worried about going back to work? The CLL Society, the lar...

bkoffman

CLL CURE Hero•4 years ago

3 Replies

Towards personalised management of CLL? Ibrutinib study reveals new way to gauge patients’ response to treatment

Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine...

Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-singl...

bennevisplace

•4 years ago

6 Replies

Lemon

Is it fine to eat/drink lemon while I’m on IBRUTINIB as I know grapefruit is not allowed during the treatment

Is it fine to eat/drink lemon while I’m on IBRUTINIB as I know grapefruit is not...

ANA4

•4 years ago

28 Replies

Calquence

Has anyone been on Calquence. How is it compares to Imbruvica?

PThomas

•4 years ago

5 Replies

CLL Support - the next webinar is on Tuesday 1st September at 1.00 pm

This promises to be a fascinating webinar, with interesting key speakers: Dr Satarupa Choudhuri is Consultant Haematologist at the Royal Oldham...

This promises to be a fascinating webinar, with interesting key speakers: Dr Sa...

Jm954

Administrator•4 years ago

3 Replies

“MRD: What Should It Mean to Me?” Ever dreamed of coming to a point where your CLL treatment could be safely stopped? View CLL Webinar.

Instant replay! In case you missed it, here it is! CLL Society’s latest Webinar — “MRD: What Should It Mean to Me?” If you have ever dreamed of coming to a...

Instant replay! In case you missed it, here it is! CLL Society’s latest Webinar ...

bkoffman

CLL CURE Hero•4 years ago

28 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2020

Gazyva and Low Platelet Count?

How do I handle a family stay at my home

Inspirational 20-year CLL Survivor Terry Evans (CLL Society's Director of Support Groups) in CURE's August 27th Webinar Don't Miss It!

swollen tonsils

CLL and minding grandchildren again. One in part time nursery and one starting school full time.

Results of my first Scanner. Richter’s Transformation

Flair trial

Petechia on legs from Calquence?

Registration is Open – Save the date! October 10, 2020! Join the CLL Society for our Global Virtual Patient & Caregiver Educational Forum

Shingles

Ibrutinib side effects

LOXO-305 UPDATE 7 CYCLES COMPLETE

Kids need school, but...

Rituxan

lymph nodes and ear ache

NIGHT SWEATS

Duvelisib + FCR (DFCR) frontline therapy for younger CLL patients - study results (Aug. 2020)

MBL

Help still needed - anyone willing to share their experience of Venetoclax + Obintuzumab treatment?

Webinar - Living with the psychological impact of leukaemia and lymphoma in the COVID-19 era

Aggressive CLL Treatment Options: Are They Right for Me? Thursday, August 27th at 1:00 PM Pacific/ 4:00 PM Eastern

Insect bites - swelling

Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community

O + V: Update 4!

Are you a CLL patient worried about returning to work? CLL Society's COVID-19 Official Statement. Share with HR, co-workers, friends, family

Towards personalised management of CLL? Ibrutinib study reveals new way to gauge patients’ response to treatment

Lemon

Calquence

CLL Support - the next webinar is on Tuesday 1st September at 1.00 pm

“MRD: What Should It Mean to Me?” Ever dreamed of coming to a point where your CLL treatment could be safely stopped? View CLL Webinar.

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