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CLL Support

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All posts for December 2018

Mike Peters lead singer in The Alarm and CLL patient awarded MBE for charity work

https://www.bbc.com/news/uk-wales-north-east-wales-46702437

Irishcll

•5 years ago

2 Replies

What is the New name for cll in remission

I was told that as long as I was in remission they do not call it CLL. What is the name?

I was told that as long as I was in remission they do not call it CLL. What is t...

plaingal58

•5 years ago

8 Replies

Mouth Sores and Neuropathy

After four years on Ibrutinib I have developed mouth sores and neuropathy. I tried many lip creams, finally went to a dermatologist and got a steroid cream....

After four years on Ibrutinib I have developed mouth sores and neuropathy. I tr...

Bjhayes14

•5 years ago

16 Replies

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The danger of grapefruit?

I have been on Ibrutinib for over three years now. It has with God’s help been a wonder drug for me. I was given a month to live three years ago and here I am...

I have been on Ibrutinib for over three years now. It has with God’s help been a...

Arnhild

•5 years ago

20 Replies

BBC news

I thought this may be of interest...

Trev1

•5 years ago

4 Replies

Reflections on a sad and great year

Happy New year, This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that I...

Happy New year, This year we lost 3 members of our local Orange County CLL Socie...

bkoffman

CLL CURE Hero•5 years ago

4 Replies

WBC

I think you’re the gold medalist. I once asked my oncologist and he said the highest WBC he had ever seen was 350,000. So good luck with everything! Happy New...

I think you’re the gold medalist. I once asked my oncologist and he said the hig...

Suzer1553er

•5 years ago

8 Replies

Trigeminal Neuralgia

Anyone from NJ? Anyone dealing with Trigeminal Nerve pain and pain in arms ? Can't take it anymore

Anyone from NJ? Anyone dealing with Trigeminal Nerve pain and pain in arms ? Can...

Sharon69n

•5 years ago

9 Replies

Shingles

At 63 years old am I susceptible to getting Shingles with CLL? I was told today by a nurse that I needed to be 70 before being given the injection.

At 63 years old am I susceptible to getting Shingles with CLL? I was told today...

Trev1

•5 years ago

40 Replies

FCR or BR proposed for second round of treatment in London

Diagnosed end of 2013. FLAIR trail Nov 2015 – June 2016 stopped due to severe muscle pain. (See previous posts) Now need more treatment. Moved up partly...

Diagnosed end of 2013. FLAIR trail Nov 2015 – June 2016 stopped due to severe m...

romarin

•5 years ago

6 Replies

Swelling of ankles and legs

Anyone taking ibrutinib having swelling of ankles and legs?

tlcladygiraffe

•5 years ago

9 Replies

blue cross, blue shield putting Imbruvica out of network.

On Imbruvica for over 4 years, fully paid for through commercial insurance. Got letter in October indicating that Biologics, specialty pharmacy from which i...

On Imbruvica for over 4 years, fully paid for through commercial insurance. Got ...

Lenny123

•5 years ago

56 Replies

Concern!

Hi im menodeen lives in western cape .am 24 yrs old..im almost 7months pregnant .. I just want to hear from you guys i have this weird sleepy feeling right...

Hi im menodeen lives in western cape .am 24 yrs old..im almost 7months pregnant ...

mematjie

•5 years ago

1 Reply

Possibility of gaining 17p

Fairly new here and curious... If I am 13q and mutated, is it still possible to also acquire 17p down the line? Or does the mutated help?

Fairly new here and curious... If I am 13q and mutated, is it still possible to...

Momtomany0511

•5 years ago

10 Replies

Highest white blood count

I have had Stage 4 CLL at least 8.5 years. My white blood count was 658,000 has anyone else had this high of a white blood count?

I have had Stage 4 CLL at least 8.5 years. My white blood count was 658,000 has ...

HOSS10

•5 years ago

34 Replies

Is there a natural cure for my CLL?

Is there a natural cure for my CLL?, or do I just do nothing until it progresses to the point it has to be treated with drugs or radiation. My doctor will not...

Is there a natural cure for my CLL?, or do I just do nothing until it progresses...

Test_Tech

•5 years ago

52 Replies

Updating travel insurance

Hello just after a bit of advice. I was diagnosed with CLL at the beginning of November (2018) and have been told that I do not need any treatment other than...

Hello just after a bit of advice. I was diagnosed with CLL at the beginning of N...

kitchengardener

•5 years ago

7 Replies

Merry Christmas

Merry Christmas and a happy healthy new year to you all Jules the flyer

TheFlyer

•5 years ago

2 Replies

Muscle mass...

Hi all, I found this article on the correlation between muscle mass and prognosis in people with cancer.......

Hi all, I found this article on the correlation between muscle mass and prognosi...

Curious12

•5 years ago

8 Replies

Clinical trial

Ibrutinib Venetoax Obinutuzumab cancerfree since January 2018 Going in for checkups every 3 months

Ibrutinib Venetoax Obinutuzumab cancerfree since January 2018 Going in for che...

mickimauser11

•5 years ago

36 Replies

Food an Health

Food and Health I watch the documentary last night it’s on Netflix it’s called What The Health Having been diagnosed with CLL in 2015 I was thinking I was...

Food and Health I watch the documentary last night it’s on Netflix it’s called ...

Breezie44

•5 years ago

2 Replies

Merry Christmas

I hope everyone has a good holiday season and that you are able to enjoy the company of your families and friends.

I hope everyone has a good holiday season and that you are able to enjoy the co...

ap64

•5 years ago

1 Reply

Hope

Being diagnosed a year and a half ago at age 55 I have like everyone on this forum wake up trying to fin my way within this new world of cll. I have followed...

Being diagnosed a year and a half ago at age 55 I have like everyone on this for...

Superdad3

•5 years ago

Be the first to reply

Merry christmas

Merry Christmas to everyone on here and all the best for next year x

Nikkij81

•5 years ago

1 Reply

To all CLL sufferers

Hope you all have a lovely Christmas and hoping 2019 is a positive year for everyone.

Hope you all have a lovely Christmas and hoping 2019 is a positive year for ever...

dandelup

•5 years ago

1 Reply

On a trail of Imbrutinib and venetoclax for CLL 11q deletion. Just ramped up to 400mg of venetoclax a few weeks ago. Fatigue has kicked in.

Is this normal because I've no real side effects up till now?

Jonboy64

•5 years ago

1 Reply

Researchers Show Parachutes Don't Work, But There's A Catch

I wonder if this was a double blind test? :) Research published in a major medical journal concludes that a parachute is no more effective than an empty...

I wonder if this was a double blind test? :) Research published in a major medi...

AussieNeil

Administrator•5 years ago

11 Replies

merry christmas and happy 2019

Warmest thoughts and best wishes for a wonderful Christmas and a Happy New Year. May peace and love follow you all always kind regards

Warmest thoughts and best wishes for a wonderful Christmas and a Happy New Year....

Marymary19

•5 years ago

4 Replies

140 mg imbruvica ,Lyme disease

Hello and merry Christmas to you all ! My wife is scheduled to start ibrutinib in January and really worried about side effects. Her health is pretty good....

Hello and merry Christmas to you all ! My wife is scheduled to start ibrutinib i...

Sergi

•5 years ago

10 Replies

Imbruvica restrictions and precautions

My husband was approved to start Imbruvica. I know the doctor will go over this. But what are the restrictions and precautions. Like I know people getting...

My husband was approved to start Imbruvica. I know the doctor will go over this...

CLLWife

•5 years ago

14 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2018

Mike Peters lead singer in The Alarm and CLL patient awarded MBE for charity work

What is the New name for cll in remission

Mouth Sores and Neuropathy

The danger of grapefruit?

BBC news

Reflections on a sad and great year

WBC

Trigeminal Neuralgia

Shingles

FCR or BR proposed for second round of treatment in London

Swelling of ankles and legs

blue cross, blue shield putting Imbruvica out of network.

Concern!

Possibility of gaining 17p

Highest white blood count

Is there a natural cure for my CLL?

Updating travel insurance

Merry Christmas

Muscle mass...

Clinical trial

Food an Health

Merry Christmas

Hope

Merry christmas

To all CLL sufferers

On a trail of Imbrutinib and venetoclax for CLL 11q deletion. Just ramped up to 400mg of venetoclax a few weeks ago. Fatigue has kicked in.

Researchers Show Parachutes Don't Work, But There's A Catch

merry christmas and happy 2019

140 mg imbruvica ,Lyme disease

Imbruvica restrictions and precautions

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