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CLL Support

22,525 members • 38,686 posts

All posts for May 2020

How long does take Venetoclax to become the lymph nodes to normal size?

My brother started Venetoclax 2 weeks ago. He started with a swelling supraclavicular lymph node, and an pelvis node. The first week, almost with 20 mg dose,...

My brother started Venetoclax 2 weeks ago. He started with a swelling supraclavi...

Cgr2018

•4 years ago

9 Replies

Any thoughts on how we have contacted this disease..

Hello everyone... New to this group, only diagnosed Jan 2020 , still on watch and wait .. Does anyone have any thoughts on how we have contacted this disease......

Hello everyone... New to this group, only diagnosed Jan 2020 , still on watch an...

mfc86

•4 years ago

21 Replies

Shielding for ccl

Hi everyone I'm quite new on this group was only diagnosed 27 th feb 2020 with Cll. My question is a mate of mine hs been sent another letter from the NHS...

Hi everyone I'm quite new on this group was only diagnosed 27 th feb 2020 with C...

Hidden

•4 years ago

28 Replies

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CAR-NK and using Interlukin-27 to boost the cytotoxic effect of NK cells on CLL in the bone marrow

"A chimeric antigen receptor (CAR) construct using transduced natural killer cells instead of T cells was associated with a high complete remission rate...

"A chimeric antigen receptor (CAR) construct using transduced natural killer cel...

AussieNeil

Administrator•4 years ago

4 Replies

Covid infected CLL patients recovered!

Hi everyone, I found something optimistis -data from Spain showing recovery of 4 covid positive CLL patients🙂that sounds very good!...

Hi everyone, I found something optimistis -data from Spain showing recovery of 4...

matulova20397

•4 years ago

15 Replies

Covid19 vaccine and CLL

Was having a discussion with a retired oncology nurse friend this week. I said that I don't intend to go on holiday or travel much until there is a vaccine...

Was having a discussion with a retired oncology nurse friend this week. I said ...

kitchengardener2

•4 years ago

21 Replies

On Ibrutinib for almost 2 years but noticed something

Hi everyone, I have been on Impruvica for almost 2 years, and for a month I have noticed that my feet are swollen. The right foot more so than the left and...

Hi everyone, I have been on Impruvica for almost 2 years, and for a month I have...

Doremefasol

•4 years ago

17 Replies

First time posting (Question)

First time with a question. If you have been told that your CLL is not famili... is there a way to determine where or how one has developed CLL? I have been...

First time with a question. If you have been told that your CLL is not famili.....

Mojave

•4 years ago

19 Replies

Bloods delay re Covid 19

I have recently had a telephone consultation with my Haemotologist, following a cancellation letter for my usual 4 monthly one. In 5 minutes she assessed that...

I have recently had a telephone consultation with my Haemotologist, following a ...

Vindicatrix

•4 years ago

1 Reply

In afib again

In afib again. Had cardioverson. Didn’t work. Not sure if I should go for the ablation. Had it before. I know each time you get it it comes back again. On...

In afib again. Had cardioverson. Didn’t work. Not sure if I should go for the ...

Mav74

•4 years ago

15 Replies

CLL - Extremely Vulnerable clarified

Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for...

Previous posts have discussed the contentious issue of which CLL patients in the...

bennevisplace

•4 years ago

5 Replies

CV-19 Any stats!

Curious if there’s any information about numbers of CLL’rs infected with Covid 19 ?

Curious if there’s any information about numbers of CLL’rs infected with Covid 1...

Estate1

•4 years ago

19 Replies

Weight loss

I forgot to discuss weight loss with my Consultant in my recent telephone call. I am now 53.5k and was probably about 63k before CLL. I am feeling ok otherwise...

I forgot to discuss weight loss with my Consultant in my recent telephone call. ...

camper2

•4 years ago

3 Replies

Join CLL Society & CancerCare for Connect Workshop call focusing on Caregivers tomorrow!

Caregivers! Tomorrow! Join CLL Society’s Patty Koffman, Lindsey Roeker MD, Stewart Fleishman MD, Sharon Flynn RN, and Carolyn Messner, DSW and CancerCare...

Caregivers! Tomorrow! Join CLL Society’s Patty Koffman, Lindsey Roeker MD, Stewa...

bkoffman

CLL CURE Hero•4 years ago

2 Replies

Query

Hi all, some advice please. Can we ask to see a CLL specialist as opposed to a general Haematologist. I am also led to believe sometimes we are seen by a...

Hi all, some advice please. Can we ask to see a CLL specialist as opposed to a g...

Vindicatrix

•4 years ago

41 Replies

Alternative to Pentamidine

I am currently on Ibrutinib for my SLL. I am allergic to Septrin so I am having Pentamidine by nebuliser every 4 weeks. I am just wondering if there may be...

I am currently on Ibrutinib for my SLL. I am allergic to Septrin so I am having...

Grannajan

•4 years ago

2 Replies

Venetoclax Question

I have been on a trial with Venetoclax and was taken off 3 times due to low Neut.#. Each time the numbers recovered quickly. This time I have been off about...

I have been on a trial with Venetoclax and was taken off 3 times due to low Neut...

Elam

•4 years ago

11 Replies

CLL and COVID Sheilding

My husband has CLL, daignosed 5 years ago. On watchful waiting and not under treatment. He has been shielding through Covid but when checking with his GP, he...

My husband has CLL, daignosed 5 years ago. On watchful waiting and not under tr...

Moonboots

•4 years ago

6 Replies

How effective is venetoclax for 17p tp53?

Hi!! My brother started his treatments with venetoclax last week. His treatments with imbruvica stops working and he relapsed. He is 17p to53zHe is now on the...

Hi!! My brother started his treatments with venetoclax last week. His treatment...

Cgr2018

•4 years ago

14 Replies

Checkup

Diagnosed in September 2017. My first 6 monthly review tomorrow. Before that they were 3 monthly. Had blood taken 2 weeks ago and the review will be with a...

Diagnosed in September 2017. My first 6 monthly review tomorrow. Before that the...

shornoff

•4 years ago

2 Replies

SMALL THINGS, BIG DIFFERENCE

Small Things, Big Difference is a booklet bringing together a collection of carefully selected insights, practical tips and wisdom from members of the (CLL)...

Small Things, Big Difference is a booklet bringing together a collection of care...

pkguk2

Partner•4 years ago

9 Replies

Curcumin and Ibrutinib

On the advice of my naturopath I was taking Curcumin as a supplement while also taking Ibrutinib . After reading on this board about the possible interactions...

On the advice of my naturopath I was taking Curcumin as a supplement while also ...

steve_canada

•4 years ago

7 Replies

Richter syndrome - Resonance result of the breast

Hello friends. I want to update my status. Yesterday they gave me the results of my breast tumors. They told me they were totally clean of cancer. I was...

Hello friends. I want to update my status. Yesterday they gave me the results of...

Priss69

•4 years ago

17 Replies

Please remember that all CLL patients are immune-compromised

Even though Shelter in Place restrictions are being relaxed in many locations, please remember that all CLL patients are immune-compromised and at higher risk...

Even though Shelter in Place restrictions are being relaxed in many locations, p...

bkoffman

CLL CURE Hero•4 years ago

30 Replies

ASH 2019: Dr. Jennifer Brown on Using Ibrutinib After Progressing on Venetoclax for Ibrutinib-Naïve Patients with CLL

https://cllsociety.org/2020/05/ash-2019-dr-jennifer-brown-on-using-ibrutinib-after-progressing-on-venetoclax-for-ibrutinib-naive-patients-with-chronic-lymphocyt

https://cllsociety.org/2020/05/ash-2019-dr-jennifer-brown-on-using-ibrutinib-aft...

bkoffman

CLL CURE Hero•4 years ago

Be the first to reply

The CLL Society survey published in the American Journal of Hematology: Management of CLL Patients Early in the COVID-19 Pandemic

https://cllsociety.org/2020/05/cll-patients-early-in-the-covid-19-pandemic-survey-published-in-american-journal-of-hematology/?utm_source=May+12%2C+2020&utm_cam

https://cllsociety.org/2020/05/cll-patients-early-in-the-covid-19-pandemic-surve...

bkoffman

CLL CURE Hero•4 years ago

Be the first to reply

COVID-19 tests: how they work, serological tests and immunity, how accurate are they?

With many countries reducing restrictions implemented to slow the coronavirus pandemic, effective testing for an active COVID-19 infection or determining...

With many countries reducing restrictions implemented to slow the coronavirus pa...

AussieNeil

Administrator•4 years ago

4 Replies

Does nail polish help with splitting nails?

I keep my fingernails really short, they still split.

Maiapal

•4 years ago

5 Replies

skin cancer

Yes continues and have actively fight it more than the cll. Its a pain. It can turn to b cell cancer or worse.

Yes continues and have actively fight it more than the cll. Its a pain. It can t...

tom3659

•4 years ago

2 Replies

A light hearted guide to health advice in a pandemic

And the reason why health professionals always ask your date of birth?

otonal

•4 years ago

17 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2020

How long does take Venetoclax to become the lymph nodes to normal size?

Any thoughts on how we have contacted this disease..

Shielding for ccl

CAR-NK and using Interlukin-27 to boost the cytotoxic effect of NK cells on CLL in the bone marrow

Covid infected CLL patients recovered!

Covid19 vaccine and CLL

On Ibrutinib for almost 2 years but noticed something

First time posting (Question)

Bloods delay re Covid 19

In afib again

CLL - Extremely Vulnerable clarified

CV-19 Any stats!

Weight loss

Join CLL Society & CancerCare for Connect Workshop call focusing on Caregivers tomorrow!

Query

Alternative to Pentamidine

Venetoclax Question

CLL and COVID Sheilding

How effective is venetoclax for 17p tp53?

Checkup

SMALL THINGS, BIG DIFFERENCE

Curcumin and Ibrutinib

Richter syndrome - Resonance result of the breast

Please remember that all CLL patients are immune-compromised

ASH 2019: Dr. Jennifer Brown on Using Ibrutinib After Progressing on Venetoclax for Ibrutinib-Naïve Patients with CLL

The CLL Society survey published in the American Journal of Hematology: Management of CLL Patients Early in the COVID-19 Pandemic

COVID-19 tests: how they work, serological tests and immunity, how accurate are they?

Does nail polish help with splitting nails?

skin cancer

A light hearted guide to health advice in a pandemic

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