Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for November 2019

Second opinion from CLL experiences

Neurologist suggests Botox for eye twitch. On ibrutinib for CLL 2.6 yrs after 8yrs. WW. Normal bloodwork except for platelet yo-yo between 121, 149. Any...

Neurologist suggests Botox for eye twitch. On ibrutinib for CLL 2.6 yrs after 8y...

Rogerinhorn2015

•5 years ago

A new look for CLLSA! A personal letter from CLLSA Chair, Marc Auckland

I am very pleased to announce some exciting changes for CLLSA. This is a big step in our development, and I want to explain why we have decided, on behalf of...

I am very pleased to announce some exciting changes for CLLSA. This is a big ste...

Partner•5 years ago

URGENT alert Re Houmous products

If you live in the UK and have bought houmous in the last week or so then check this list and your fridge right now to check you are not at risk of salmonella....

If you live in the UK and have bought houmous in the last week or so then check ...

•5 years ago

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iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update

I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it...

I quite often refer to the above guidelines when questions arise about treatment...

Administrator•5 years ago

A conundrum for use v. non-use of specific amino acids in muscle atrophy and immune support for CLL patients

CLL and cancer patients, particularly those over 70, are often concerned about muscle wasting or muscle atrophy. Sarcopenia is characterized as the progressive...

CLL and cancer patients, particularly those over 70, are often concerned about m...

•5 years ago

Coq10 and CLL

Is it safe to take coq10 if you have CLL? What supplements are recommended? Let me add that my husband is not any medication for his CLL and stage 0. Thank you

Is it safe to take coq10 if you have CLL? What supplements are recommended? Let ...

•5 years ago

Green tea extract and curcumin, tumeric treatment for cll

Have been doing some reading and heard the combination of green tea and tumeric benefit cll. Has anyone gone that route? Happen to have it in house, excellent...

Have been doing some reading and heard the combination of green tea and tumeric ...

•5 years ago

Why did I get CLL? Clearing up confusion between correlation and causation

Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think...

Following our CLL diagnosis, one of our first questions is why me? What did I do...

Administrator•5 years ago

Introducing wendy

Hi I’m Wendy I’m 69. I’ve recently retired to enjoy more time with my granddaughter and to spend time at the beach and in my garden. I was an advisory teacher,...

Hi I’m Wendy I’m 69. I’ve recently retired to enjoy more time with my granddaugh...

•5 years ago

Any information on CoQ10 (Ubiquinol) while on Imbruvica for CLL ?

I have CLL and take Imbruvica. The pharmacist at my oncology group has no objection. Any ideas about pro or con, and whether it is useful ?

I have CLL and take Imbruvica. The pharmacist at my oncology group has no object...

•5 years ago

Doctor- patient relationship, MBL (Not major league baseball) and looking for a JCAR14 or 17 CAR-T patient

Hi, Arguably nothing in CLL or any major illness is more important than the doctor/patient relation, so please enjoy this research from ERIC 2018 by Dr. Aliki...

Hi, Arguably nothing in CLL or any major illness is more important than the doct...

CLL CURE Hero•5 years ago

A quick question before I forget it about ,,Acalabrutinib

Good morning I've been trying to learn about Acalabrutinib but having some problems finding much information ,,,,,,, and then deciphering it. Anyway, my quick...

Good morning I've been trying to learn about Acalabrutinib but having some probl...

•5 years ago

So the final moment came...we need treatment

AS long as we postponed it, the time had come so quickly. My mom WBC at 190 and hemoglobin below 10. The doctor said its our choice whether Rituximab + some...

AS long as we postponed it, the time had come so quickly. My mom WBC at 190 and ...

•5 years ago

My exposure to Ethylene Oxide.

I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period...

I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical...

•5 years ago

Pentoxifyline

After reading evidence here about the potential benefits of pentoxifyline I took the information to my doctor. I started it yesterday in hopes I also benefit...

After reading evidence here about the potential benefits of pentoxifyline I took...

•5 years ago

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Venetoclax too?

Does this also apply to a reduction in dosing or temporary halting of Venetoclax due to low WBC?

Does this also apply to a reduction in dosing or temporary halting of Venetoclax...

•5 years ago

Dr Mary Ann Anderson on CLL, Venetoclax and future trends in CLL management

Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. Dr Mary Ann Anderson is one of only a few...

Venetoclax is the culmination of a research discovery made in Australia's Walter...

Administrator•5 years ago

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