Posts - CLL Support | HealthUnlocked

CLL Support

22,663 members • 38,898 posts

All posts for August 2022

Travel insurance for UK residents with CLL

I’m interested in anyone else’s experience with travel insurance either not being able to get it or extremely high quotes. I’m 75 & on Ibrutinib. I’m told...

I’m interested in anyone else’s experience with travel insurance either not bei...

Benny12

•2 years ago

16 Replies

Stopping Venetoclax for COVID-19 vaccine

Could you please tell me what is the recommended time for stopping Venetoclax treatment before and after administration of the Covid -19 vaccine?

Could you please tell me what is the recommended time for stopping Venetoclax tr...

Doremefasol

•2 years ago

14 Replies

Thank you for sharing your life experiences.

I really want to thank everyone for sharing their experiences with me. It really made me realize how serious my condition has become and how fast it can...

I really want to thank everyone for sharing their experiences with me. It reall...

Bluegillking

•2 years ago

9 Replies

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VenClexta side affects… Has anyone figured out how to stop the nausea and vomiting ?

Hi I’m a 24 year CLL patient. I have had my share of chemo treatments and battles with mucor mycosis lung infections, sinus infections the entire gamut. I...

Hi I’m a 24 year CLL patient. I have had my share of chemo treatments and battle...

999990Bruno

•2 years ago

16 Replies

Enlarged under arm lymph nodes during treatment

Just wondering if anyone on V & O has experienced continued bulky under arm Lymph nodes during treatment? I am just starting cycle 4 and my under arm nodes...

Just wondering if anyone on V & O has experienced continued bulky under arm Lymp...

fezzerUK

•2 years ago

12 Replies

Had Echocardigram

Well have been this morning for an Echocardigram in my ongoing pursuit to see if I can get to the bottom of whether I do/do not have an irregular heart...

Well have been this morning for an Echocardigram in my ongoing pursuit to see i...

kitchengardener2

•2 years ago

17 Replies

rituxan treatment

My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a...

My CLL has caused a condition called warm autoimmune hemolytic anemia and they ...

Bluegillking

•2 years ago

19 Replies

Change in 13q deletion?

I recently had a BMB performed, the first since I started Ibrutinib four years ago. I noticed that my 13q del has dropped from 21.2% in 2018 down to 0.4%...

I recently had a BMB performed, the first since I started Ibrutinib four years a...

hhk50

•2 years ago

13 Replies

Optical genome mapping: a promising new tool to assess genomic complexity in CLL

In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new...

In CLL, cytogenetic testing relies on a few well-established techniques https://...

bennevisplace

•2 years ago

2 Replies

vh3-21

does anyone here have the vh3-21 in their ivhg report??? How has this affected your disease progress????? Am borderline mutated-unmutated…. 1.96…and fish...

does anyone here have the vh3-21 in their ivhg report??? How has this affected y...

Faith-5

•2 years ago

2 Replies

COVID Update

After sending in the PCR test on Monday, I finally got approval for Paxlovid and have just received the pills. Is it OK to start taking them in the evening...

After sending in the PCR test on Monday, I finally got approval for Paxlovid and...

RZ8983DV

•2 years ago

11 Replies

If money is not an issue, why not CAR-T as a first line of treatment?

Life is more precious than money. So, if shortage of funds was not a criteria, would CAR-T be the first line of treatment for CLL? Since CAR-T is supposed...

Life is more precious than money. So, if shortage of funds was not a criteria, w...

nuji

•2 years ago

12 Replies

Vitamin D interaction with Acalabrutinib/Ibrutinib??

Hi everyone, I've been on Ibrutinib for close to 3 years and doing well on it except for fatigue. My hematologist is switching me to Acalabrutinib to see if...

Hi everyone, I've been on Ibrutinib for close to 3 years and doing well on it ...

Elle_V

•2 years ago

17 Replies

zanbrutnib

options after zanbrutnib?

Mackiec1108

•2 years ago

1 Reply

Vaccinations in CLL-Instructions for "Beginners"

Why am I posting this post-because at my last appointment with the hematologist, he was so tired and I was so scared (he is the big boss hematologist at this...

Why am I posting this post-because at my last appointment with the hematologist,...

Yalokin

•2 years ago

18 Replies

Update on water bill post by kitchen gardener and some useful U.K. information.

For those of you especially in London I just checked my online account with Thames Water and have just signed up on the Register for priority services, but I...

For those of you especially in London I just checked my online account with Tham...

mrsjsmith

•2 years ago

4 Replies

Response rate to vaccines against Covid-19 depending on the type of hematological disease and depending on the treatment .

COVID-19 Vaccine is Safe but 25% Of Blood Cancer Patients Do Not Produce Detectable Antibodies. More from LLS colleagues here:...

COVID-19 Vaccine is Safe but 25% Of Blood Cancer Patients Do Not Produce Detecta...

Yalokin

•2 years ago

33 Replies

Next stage of the journey Ib to Vclax

After eight wonderful years on Ibrutinib with all most no side affects, it at last seems the efficacy is waining as my lymphocytes numbers jumped from 4 to 27,...

After eight wonderful years on Ibrutinib with all most no side affects, it at la...

Lawand1

•2 years ago

13 Replies

10 Years in CLL: Top Advances From 2012-2022

For some of you, this is the story you witnessed. For some of us, this is the near or more distant future. Some American colleagues here must have had...

For some of you, this is the story you witnessed. For some of us, this is the n...

Yalokin

•2 years ago

14 Replies

Calquence while recovering from Covid

Hi Guys - 62 yo male - I have been on Calquence for about 5 months - great results unntil I got Covid 4 weeks ago - I am struggling to recover - nasal...

Hi Guys - 62 yo male - I have been on Calquence for about 5 months - great res...

Brucex100

•2 years ago

6 Replies

Hosepipe Ban

Just wondering if anyone has had a letter from their water suppliers (ours is Yorkshire Water). This outlines that because of health and well-being we will...

Just wondering if anyone has had a letter from their water suppliers (ours is Y...

kitchengardener2

•2 years ago

18 Replies

Any ideas on sleep issues

Hi all, hope everyone is doing as well as they can be. Been a while since I posted. My WBC is now up to 25.67, Lymph% 77.3 and Lymph # 19.84. Still on W&W....

Hi all, hope everyone is doing as well as they can be. Been a while since I po...

CBME

•2 years ago

34 Replies

Editing glitch

This issue has arisen in the last week or so. When I edit a reply I find that afterwards any weblink in the text has been lost, replaced by "original text"....

This issue has arisen in the last week or so. When I edit a reply I find that ...

bennevisplace

•2 years ago

4 Replies

could someone help interpret iron panel labs please

I’m a 66yr old male and about 4 years ago I was feeling tired and lethargic so my wife suggested a thyroid function test. The labs showed that my thyroid...

I’m a 66yr old male and about 4 years ago I was feeling tired and lethargic so ...

Spondonhouse

•2 years ago

8 Replies

Rituximab and Venentoclax treatment reaction

Hi All it's been a while since I've posted here.just for background I had FCR in 2010, ibrutinib 2015 until 2018 had to stop with stomach bleed and...

Hi All it's been a while since I've posted here.just for background I had...

Mick491

•2 years ago

6 Replies

troubling ivhg

my ivhg came back vh3-21. …suggesting aggression….. my status of mutated or not couldn’t be determined… just wondering what to think of all this… and is there...

my ivhg came back vh3-21. …suggesting aggression….. my status of mutated or not ...

Faith-5

•2 years ago

2 Replies

CURE FOR CANCER?

I was diagnosed with CLL, as a result of a blood test, with a white cell count of 4. Each subsequent year I had a blood test and the white cell count went up...

I was diagnosed with CLL, as a result of a blood test, with a white cell count o...

dovecot

•2 years ago

8 Replies

Evusheld petition "Fund Evusheld the preventative COVID19 antibody for immunocompromised" - sign and spread the word

@johnidavies is tweeting the daily totals on https://petition.parliament.uk/petitions/611884 The target is 100,000 signatures by deadline 28 Sep. Sign now...

@johnidavies is tweeting the daily totals on https://petition.parliament.uk/peti...

JIDD

•2 years ago

9 Replies

black heel

Has anyone come across a condition called black heel (calcaneal petechiae)? My husband (on acalabrutininb) has a small, dark patch on the sole of his foot,...

Has anyone come across a condition called black heel (calcaneal petechiae)? My ...

Leo71

•2 years ago

4 Replies

COVID positive

After avoiding COVID for the past 2 1/2 years I felt a bit unwell today and tested positive on a lateral flow test. I'm sweating with an occasional cough. I'm...

After avoiding COVID for the past 2 1/2 years I felt a bit unwell today and test...

RZ8983DV

•2 years ago

41 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2022

Travel insurance for UK residents with CLL

Stopping Venetoclax for COVID-19 vaccine

Thank you for sharing your life experiences.

VenClexta side affects… Has anyone figured out how to stop the nausea and vomiting ?

Enlarged under arm lymph nodes during treatment

Had Echocardigram

rituxan treatment

Change in 13q deletion?

Optical genome mapping: a promising new tool to assess genomic complexity in CLL

vh3-21

COVID Update

If money is not an issue, why not CAR-T as a first line of treatment?

Vitamin D interaction with Acalabrutinib/Ibrutinib??

zanbrutnib

Vaccinations in CLL-Instructions for "Beginners"

Update on water bill post by kitchen gardener and some useful U.K. information.

Response rate to vaccines against Covid-19 depending on the type of hematological disease and depending on the treatment .

Next stage of the journey Ib to Vclax

10 Years in CLL: Top Advances From 2012-2022

Calquence while recovering from Covid

Hosepipe Ban

Any ideas on sleep issues

Editing glitch

could someone help interpret iron panel labs please

Rituximab and Venentoclax treatment reaction

troubling ivhg

CURE FOR CANCER?

Evusheld petition "Fund Evusheld the preventative COVID19 antibody for immunocompromised" - sign and spread the word

black heel

COVID positive

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Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2022

Travel insurance for UK residents with CLL

Stopping Venetoclax for COVID-19 vaccine

﻿Thank you for sharing your life experiences.

VenClexta side affects… Has anyone figured out how to stop the nausea and vomiting ?

Enlarged under arm lymph nodes during treatment

﻿Had Echocardigram

﻿rituxan treatment

Change in 13q deletion?

Optical genome mapping: a promising new tool to assess genomic complexity in CLL

vh3-21

COVID Update

If money is not an issue, why not CAR-T as a first line of treatment?

Vitamin D interaction with Acalabrutinib/Ibrutinib??

zanbrutnib

Vaccinations in CLL-Instructions for "Beginners"

Update on water bill post by kitchen gardener and some useful U.K. information.

Response rate to vaccines against Covid-19 depending on the type of hematological disease and depending on the treatment .

Next stage of the journey Ib to Vclax

10 Years in CLL: Top Advances From 2012-2022

Calquence while recovering from Covid

﻿Hosepipe Ban

Any ideas on sleep issues

Editing glitch

could someone help interpret iron panel labs please

﻿Rituximab and Venentoclax treatment reaction

troubling ivhg

CURE FOR CANCER?

Evusheld petition "Fund Evusheld the preventative COVID19 antibody for immunocompromised" - sign and spread the word

black heel

COVID positive

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive

Thank you for sharing your life experiences.

Had Echocardigram

rituxan treatment

Hosepipe Ban

Rituximab and Venentoclax treatment reaction