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CLL Support

22,618 members • 38,849 posts

All posts for July 2021

Mass infection is not an option

link to a discussion video relating to a letter published in the Lancet and signed by 122 Drs/ Professors. https://youtu.be/VYTyi2pFXxk

link to a discussion video relating to a letter published in the Lancet and sign...

Belfastbees

•3 years ago

11 Replies

Email your MP regarding Covid vaccines giving a poor response for people with Blood Cancer

Use CLL Support template from here: https://www.cllsupport.org.uk/our-letter-to-members-of-parliament/ Your can find out who your MP is here:...

Use CLL Support template from here: https://www.cllsupport.org.uk/our-letter-to-...

zaax

•3 years ago

25 Replies

Covid vaccine for CLL patients

Is there a thread for research on Covid vaccine for CLL patients?

JIDD

•3 years ago

24 Replies

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In case any of our friends outside the UK want to understand the libertarian experiment and drive to herd immunity we are undergoing ...

The BBC lives in fear of the current UK government's threat to cut its funding so this about as critical and balanced as it dares be right now:...

The BBC lives in fear of the current UK government's threat to cut its funding s...

Me2AsWell

•3 years ago

2 Replies

CLL Society A patient Story: From color, such comfort!

CLL Society Patient Story: During decades of working in hospice and palliative care, CLL patient and artist True Ryndes experienced uncommon exposure to grief...

CLL Society Patient Story: During decades of working in hospice and palliative c...

bkoffman

CLL CURE Hero•3 years ago

1 Reply

Guidance: COVID-19 Response: Summer 2021. Immunosuppressed.

This is an extract from the latest Guidance: COVID-19 Response: Summer 2021. Updated 9 July 2021. Section 1: Reinforce the country’s vaccine wall of defence...

This is an extract from the latest Guidance: COVID-19 Response: Summer 2021. Upd...

RobertCLL

•3 years ago

2 Replies

Upcoming webinar : Predicting T-Cell Receptor Specificity

Not sure who this will appeal to. It will be challenging stuff I suspect. "T cell receptors (TCRs) allow the adaptive immune system to recognize and respond...

Not sure who this will appeal to. It will be challenging stuff I suspect. "T ce...

bennevisplace

•3 years ago

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Reduced vaccine efficacy

Greetings from israel, where we were first to vaccinate the majority (all Pfizer) and also appear to be first to lose protection over time. We are seeing...

Greetings from israel, where we were first to vaccinate the majority (all Pfizer...

Youngen

•3 years ago

29 Replies

UK government to issue new guidance to immunocompromised ahead of Covid rule changes

It made this morning's 8 o'clock news on BBC Radio 4! Only a two minute slot, but there it was. A group of sixteen charities, including Blood Cancer UK, have...

It made this morning's 8 o'clock news on BBC Radio 4! Only a two minute slot, bu...

bennevisplace

•3 years ago

27 Replies

Chromosome changes?

Had a FISH done last May which presented 13q deletion. Then after 6 rounds of Chemo and a year later another FISH presents as 13q and 17p deleted. I was under...

Had a FISH done last May which presented 13q deletion. Then after 6 rounds of Ch...

Pokerguy

•3 years ago

11 Replies

IgG serum tests

How much might an IGG serum test vary every six weeks? Mine are At 525 and 528. Looking for what might expect. I know it’s just under the normal range. Where...

How much might an IGG serum test vary every six weeks? Mine are At 525 and 528. ...

glkmel

•3 years ago

7 Replies

Third vaccine shot

https://abc11.com/third-covid-dose-vaccine-for-shot/10869983/ Maybe a third shot is in order for CLLers? I guess we'll see as more trials come out. If anyone...

https://abc11.com/third-covid-dose-vaccine-for-shot/10869983/ Maybe a third shot...

Research123

•3 years ago

18 Replies

Nutrition and Cll

I was diagnosed with Cll 3 months ago but my GP doctor suspected it a year ago. I am on W&W. I am wondering if I need to be on any kind of special diet and...

I was diagnosed with Cll 3 months ago but my GP doctor suspected it a year ago. ...

sugar03

•3 years ago

39 Replies

Clinical trial for waldenstrom

I started a clinical trial of two oral meds this week: ibrutinib and venetoclax. Dana farber is running the 50 person trial. They’re powerful, targeted meds to...

I started a clinical trial of two oral meds this week: ibrutinib and venetoclax....

waer88

•3 years ago

8 Replies

MK 1026

Elslee

•3 years ago

1 Reply

MBL is now CLL

Hi all, My MBL has progressed to CLL stage 1 after 8 years which I am struggling to come to terms with. I am now 51. Small glands in neck and groin and...

Hi all, My MBL has progressed to CLL stage 1 after 8 years which I am struggling...

Billy_Oz

•3 years ago

9 Replies

Venclexta: could it be why my platelets just crashed?

I've been on Venclexta 4.5 years and while my platelets are low (98-120) suddenly they are 34. I'm waiting for a lab re-do, but wondering if anyone else has...

I've been on Venclexta 4.5 years and while my platelets are low (98-120) suddenl...

E-Lynn

•3 years ago

19 Replies

Lisaftoclax yet another and seemingly better drug

https://www.cancernetwork.com/view/early-efficacy-safety-noted-with-lisaftoclax-in-first-in-human-cll-trial I do find it encouraging that every few months...

https://www.cancernetwork.com/view/early-efficacy-safety-noted-with-lisaftoclax-...

Research123

•3 years ago

2 Replies

8 months

So after 8 months on Ibrutinib my spleen is close to normal size, my blood count is normal, but 1/4 to 1/3 of my lymphocytes are still CLL. Side effects are...

So after 8 months on Ibrutinib my spleen is close to normal size, my blood count...

809123

•3 years ago

2 Replies

More on Covid vaccines and the inmunocompromised.

Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06,...

Just saw this in the news and felt it was worth sharing. Lots of peopleScientist...

Iupiter

•3 years ago

3 Replies

Swollen lymph nodes following Covid-19 vaccine

About a week after my first shot of the Pfizer vaccine in my left arm, two of lymph nodes above my left collarbone rapidly swelled in size (one up to about 2...

About a week after my first shot of the Pfizer vaccine in my left arm, two of ly...

EOTI

•3 years ago

18 Replies

Relapsing on Ibrutinib

Hello everyone, as I mention here a few weeks ago, my treatment with Ibrutinib is going to end soon due to (Dr. thinks) a mutation. I am going to see the...

Hello everyone, as I mention here a few weeks ago, my treatment with Ibrutinib i...

Doremefasol

•3 years ago

9 Replies

Captivate Trial MRD status

I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test...

I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 201...

lamboman

•3 years ago

15 Replies

Iron supplement & other vitamins on CLL patients?

Can patients of CLL use iron supplements when the hemogram shows lower than normal values of hemoglobin and hematocrit?

Can patients of CLL use iron supplements when the hemogram shows lower than norm...

Gerardo1959_go

•3 years ago

9 Replies

Acaabrutinob headaches and fatigue?

My husband started A-brutinib in late April and for the last month and a half, has been having daily headaches - in the morning (coffee helps), in the late...

My husband started A-brutinib in late April and for the last month and a half, h...

OaktownA

•3 years ago

1 Reply

There must be Cll'ers in Maryland, who are vaccinated and got Covid

No one in Maryland who has been double vaccinated, has died of Covid...

zaax

•3 years ago

6 Replies

From the CLL14 Study: Venetoclax Plus Obinutuzumab Prolongs Progression Free Survival, Not Overall Survival , in CLL

These results, from the CLL14 study (ClinicalTrials.gov Identifier: NCT02242942), were presented at the European Hematology Association (EHA) 2021 Virtual...

These results, from the CLL14 study (ClinicalTrials.gov Identifier: NCT02242942)...

Jm954

Administrator•3 years ago

21 Replies

The price of freedom?

Firstly I am in NI so it's by no means certain we will follow the easements taken in England, despite the new health Secretary expressing a desire for all...

Firstly I am in NI so it's by no means certain we will follow the easements take...

Belfastbees

•3 years ago

13 Replies

Protection of blood cancer patients in the U.K. charity Blood Cancer U.K. also respond

Blood Cancer U.K. have issued the following statement: “ We’re delighted to hear Sajid Javid today give his assurance in Parliament that the NHS will inform...

Blood Cancer U.K. have issued the following statement: “ We’re delighted to he...

Jm954

Administrator•3 years ago

75 Replies

Casirivimab and imdevimab in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial

This is a non reviewed preprint REGEN-COV is a combination of 2 monoclonal antibodies (casirivimab and imdevimab) that bind to two different sites on the...

This is a non reviewed preprint REGEN-COV is a combination of 2 monoclonal antib...

Jm954

Administrator•3 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2021

Mass infection is not an option

Email your MP regarding Covid vaccines giving a poor response for people with Blood Cancer

Covid vaccine for CLL patients

In case any of our friends outside the UK want to understand the libertarian experiment and drive to herd immunity we are undergoing ...

CLL Society A patient Story: From color, such comfort!

Guidance: COVID-19 Response: Summer 2021. Immunosuppressed.

Upcoming webinar : Predicting T-Cell Receptor Specificity

Reduced vaccine efficacy

UK government to issue new guidance to immunocompromised ahead of Covid rule changes

Chromosome changes?

IgG serum tests

Third vaccine shot

Nutrition and Cll

Clinical trial for waldenstrom

MK 1026

MBL is now CLL

Venclexta: could it be why my platelets just crashed?

Lisaftoclax yet another and seemingly better drug

8 months

More on Covid vaccines and the inmunocompromised.

Swollen lymph nodes following Covid-19 vaccine

Relapsing on Ibrutinib

Captivate Trial MRD status

Iron supplement & other vitamins on CLL patients?

Acaabrutinob headaches and fatigue?

There must be Cll'ers in Maryland, who are vaccinated and got Covid

From the CLL14 Study: Venetoclax Plus Obinutuzumab Prolongs Progression Free Survival, Not Overall Survival , in CLL

The price of freedom?

Protection of blood cancer patients in the U.K. charity Blood Cancer U.K. also respond

Casirivimab and imdevimab in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial

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