Posts - CLL Support | HealthUnlocked

CLL Support

22,611 members • 38,830 posts

All posts for March 2020

CLL & CV19

I am on FLAIR drug trials using ibrutinib for five years. My blood is almost normal, but am still on the drugs, so my immune system is compromised. I still...

I am on FLAIR drug trials using ibrutinib for five years. My blood is almost nor...

hazelmark

•4 years ago

1 Reply

Former CDC Director and Vitamin D

An interesting tweet from Dr. Tom Friedem former Director of the CDC. Dr. Tom Frieden DrTomFrieden "40% or more of US adults may have a Vitamin D deficiency....

An interesting tweet from Dr. Tom Friedem former Director of the CDC. Dr. Tom Fr...

Splash24

•4 years ago

2 Replies

EGCG associated with Hair loss

Does anyone know if higher dose EGCG (2-3 grams daily) can lead to hair loss? My 20 year old brother has been taking this for about 2 years and he is...

Does anyone know if higher dose EGCG (2-3 grams daily) can lead to hair loss? My...

evatraw

•4 years ago

7 Replies

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Good day all,

This is my first post. I wanted to share a bit of my story in the hope it may help someone.Was originally diagnosed with CLL in Oct 2009 and went through the...

This is my first post. I wanted to share a bit of my story in the hope it may he...

Hidden

•4 years ago

29 Replies

United Kingdom pledges to roll out extensive antibody testing

The United Kingdom could begin large-scale testing for coronavirus antibodies within days, government officials have said. If the roll-out goes ahead as...

The United Kingdom could begin large-scale testing for coronavirus antibodies wi...

Jm954

Administrator•4 years ago

8 Replies

Treatment continues and lymph nodes responding-amazingly!

Hi guys just an update. I have have my third infusion but really only finished my second full dosage of Obinutuzumab as the first vial is split into 2 days....

Hi guys just an update. I have have my third infusion but really only finished ...

Loveroflife

•4 years ago

9 Replies

Ibrutinib supply?

Since ibrutinib is made in Wuhan China, are there any worries about supply shortages?

Since ibrutinib is made in Wuhan China, are there any worries about supply short...

fescue

•4 years ago

13 Replies

Supermarket deliveries uk

I’d almost given up hope of getting a slot for home delivery but I looked at 5.30 am today (walking the dog at the crack of dawn!) and both Tesco and...

I’d almost given up hope of getting a slot for home delivery but I looked at 5.3...

AR0613

•4 years ago

3 Replies

Cll and ibrutinib complications

My dad is cll patient and had 2 round of chemos.He is on ibrutinib now.After taking for 8 days,had to discontinue due to internal bleeding in leg.Again started...

My dad is cll patient and had 2 round of chemos.He is on ibrutinib now.After tak...

sweetromeet

•4 years ago

5 Replies

UK CLL Forum Advice for CLL Patients and a survey for the UK patients - Please complete the survey if you can.

UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered...

UK CLL Forum is the special interest group for medical doctors in UK with an int...

Jm954

Administrator•4 years ago

8 Replies

IGa levels

Had a blood test including testing for immunoglobulin. First time I've seen IG results so don't understand them as much as WBC etc. My IGa result is in red and...

Had a blood test including testing for immunoglobulin. First time I've seen IG r...

aloneifly

•4 years ago

16 Replies

Happy!

I have a weird feeling about coronavirus. The government of The province of Quebec has stated the sanitary emergency while I was abroad in Mérida, Mexico....

I have a weird feeling about coronavirus. The government of The province of Que...

SenateurDupont

•4 years ago

2 Replies

Clarification needed for those of us who have CLL and are on watch and wait whether we now have to go into self isolation for 12 weeks

I was wondering please whether like myself those on watch and wait can have clarification from NHS whether we are considered at risk group and therefore need...

I was wondering please whether like myself those on watch and wait can have cla...

Fiona1122

•4 years ago

3 Replies

CAR-NK Cells Make Their Debut in Hematologic Cancers with Promising results

In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen...

In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL)...

Jm954

Administrator•4 years ago

3 Replies

Have others heard from the government about being classed as vulnerable because they have CLL?

My husband has CLL (diagnosed 13 years ago, on watch and wait for the first 9 years) and has been on the Flair trial, taking ibrutanib since June 2016. At the...

My husband has CLL (diagnosed 13 years ago, on watch and wait for the first 9 ye...

Poohey

•4 years ago

10 Replies

Now we have an infectious disease specialist joining the Friday 11AM PT COVID-19 session for CLL patients

Infectious disease specialist Dr. Rani Sebti has just been added to the faculty for the CLL Society COVID-19 Community Meeting! This Virtual Community Meeting...

Infectious disease specialist Dr. Rani Sebti has just been added to the faculty ...

bkoffman

CLL CURE Hero•4 years ago

Be the first to reply

imbruvica treatment

husband to start imbruvica very soon. wanted to get some others experiences

naturallady

•4 years ago

23 Replies

CLL virtual town hall THIS Saturday

https://patientpower.info/events/event/chronic-lymphocytic-leukemia-town-hall-meeting/2020-03-28/0930. Don't miss it! And send your questions to...

https://patientpower.info/events/event/chronic-lymphocytic-leukemia-town-hall-me...

andrewschorr

•4 years ago

Be the first to reply

Covid 19

Hi everyone I know you are all fed up of seeing posts like this but I desperately need some clarification. My husband was diagnosed with CLL in November. On...

Hi everyone I know you are all fed up of seeing posts like this but I desperatel...

Lillyloo12

•4 years ago

47 Replies

How long coronavirus linger on surfaces

New study performed by the National Institutes of Health (NIH), CDC, UCLA and Princeton University Stay safe everyone 🙏🏽🙏🏽🙏🏽

New study performed by the National Institutes of Health (NIH), CDC, UCLA and Pr...

WinJ3

•4 years ago

8 Replies

Sign on the door

I don't know who originally suggested posters for the front door on this site but i want to say what a great idea and thank you! As suggested I googled...

I don't know who originally suggested posters for the front door on this site bu...

hannah11

•4 years ago

1 Reply

Just a quick question

Hello all. I’m asking this on behalf of my mum. She has Alzheimer’s and around 10 years ago she was diagnosed with CLL, up till now she hasn’t had to have any...

Hello all. I’m asking this on behalf of my mum. She has Alzheimer’s and around 1...

rustydog

•4 years ago

2 Replies

How to care for cancer patient when I have a cold

Hello, I'm new here. I am caring for my husband who has just started his cancer (Barrett's Esophagus) treatment this Monday (3 radiotherapy sessions and 1...

Hello, I'm new here. I am caring for my husband who has just started his cancer ...

Notknowmuch

•4 years ago

5 Replies

Shielding /garden

On 24th March government updated advice for shielding there is two . One written . The 2nd by pictures and the last picture shows that you can use the garden...

On 24th March government updated advice for shielding there is two . One writte...

Jsk1950

•4 years ago

1 Reply

How do we get isolation certificate?

Hi I am trying to get an isolation certificate to send to employer. When I go on to nhs website it is for people who have got virus or people living with...

Hi I am trying to get an isolation certificate to send to employer. When I go on...

robertsw

•4 years ago

3 Replies

Dr. Brander joining the faculty of our COVID-19 virtual community meeting this Friday at 2 PM ET focused exclusively on CLL patients

Dr. Brander has been added to our faculty for this Friday's 11 AM PT COVID-19 virtual community meeting and Q+A that is specific to CLL. May this weekly for a...

Dr. Brander has been added to our faculty for this Friday's 11 AM PT COVID-19 vi...

bkoffman

CLL CURE Hero•4 years ago

9 Replies

Update 3.3 Years Captivate trial, 4.3 years with CLL and so far so good! Now I have to worry about CV-19 ...

Hello, I am very pleased to report I am still MRD Undetectable ( UMRD) in the blood after 2 years on a Placebo!! I know it is a Placebo because the...

Hello, I am very pleased to report I am still MRD Undetectable ( UMRD) in the ...

Hoffy

•4 years ago

16 Replies

More faculty for our March 27th (11 AM PT) virtual community meeting on COVID-19 specific to CLL patients

Dr. Danielle Brander has been added to our faculty (Dr. Mato, Dr. Leclair and pharmacist and CLL patient Tom Henry) for this Friday's 11 AM PT COVID-19 virtual...

Dr. Danielle Brander has been added to our faculty (Dr. Mato, Dr. Leclair and ph...

bkoffman

CLL CURE Hero•4 years ago

5 Replies

10 pass high fose ozone therapy

I haven’t used ozone but my brother is a doctor who specialises in 10 pass ozone IV therapy. It boosts the immune system. Thinks it could work but he hasn’t...

I haven’t used ozone but my brother is a doctor who specialises in 10 pass ozone...

Satchitanada

•4 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2020

CLL & CV19

Former CDC Director and Vitamin D

EGCG associated with Hair loss

Good day all,

United Kingdom pledges to roll out extensive antibody testing

Treatment continues and lymph nodes responding-amazingly!

Ibrutinib supply?

Supermarket deliveries uk

Cll and ibrutinib complications

UK CLL Forum Advice for CLL Patients and a survey for the UK patients - Please complete the survey if you can.

IGa levels

Happy!

Clarification needed for those of us who have CLL and are on watch and wait whether we now have to go into self isolation for 12 weeks

CAR-NK Cells Make Their Debut in Hematologic Cancers with Promising results

Have others heard from the government about being classed as vulnerable because they have CLL?

Now we have an infectious disease specialist joining the Friday 11AM PT COVID-19 session for CLL patients

imbruvica treatment

CLL virtual town hall THIS Saturday

Covid 19

Other solutions to toilet paper plug sewer lines.

How long coronavirus linger on surfaces

Sign on the door

Just a quick question

How to care for cancer patient when I have a cold

Shielding /garden

How do we get isolation certificate?

Dr. Brander joining the faculty of our COVID-19 virtual community meeting this Friday at 2 PM ET focused exclusively on CLL patients

Update 3.3 Years Captivate trial, 4.3 years with CLL and so far so good! Now I have to worry about CV-19 ...

More faculty for our March 27th (11 AM PT) virtual community meeting on COVID-19 specific to CLL patients

10 pass high fose ozone therapy

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