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CLL Support

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All posts for May 2018

Survey of Monoclonal B-cell lymphocytosis Patients by Queen's University in Belfast.

NOTE: This survey is not for confirmed CLL patients in watch and wait but for patients with the pre-CLL condition called monoclonal B cell lymphocytosis....

NOTE: This survey is not for confirmed CLL patients in watch and wait but for p...

Jm954

Administrator•6 years ago

4 Replies

CLL and alcoholism

Hello everyone. I’m new here and was hoping to find an answer to my question but it seems like I’m the only one struggling with this problem. My father has...

Hello everyone. I’m new here and was hoping to find an answer to my question but...

Nia_S

•6 years ago

30 Replies

Vaxil

Has anyone heard of this new vaccine Vaxil that says it kill 90 % of all cancers ? It’s from Israel I was just watching a video on it. Sounds very promising....

Has anyone heard of this new vaccine Vaxil that says it kill 90 % of all cancers...

Ironj

•6 years ago

4 Replies

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My cancer is in remission – what does this mean?

"In the 1970s, only one cancer patient in three made it through the first five years after diagnosis. Today, this figure is around 70%, and exceeds 85% for...

"In the 1970s, only one cancer patient in three made it through the first five y...

AussieNeil

Founder Admin•6 years ago

3 Replies

Abs lymph

What is a dangerous or very high # for total lymph #. Is it common to have a normal count of your white blood cell under 10,000 and a elevated Abs count above...

What is a dangerous or very high # for total lymph #. Is it common to have a nor...

Ironj

•6 years ago

11 Replies

Therapeutic Massage

Had Rituxan/Bendamustine #5 over two weeks ago and suffering with hip and leg stiffness and numbness Also involving the hands. Has anyone tried therapeutic...

Had Rituxan/Bendamustine #5 over two weeks ago and suffering with hip and leg st...

Njsailorgirl

•6 years ago

8 Replies

Venetoclax ramp up

My mother has advanced CLL and has just begun taking Venetoclax. The doctors have decided to accelerate the drug ramp up to take only ten days to get to the...

My mother has advanced CLL and has just begun taking Venetoclax. The doctors hav...

Kat1969

•6 years ago

8 Replies

Ibrutinib

I know many are following the issue regarding NHS England's behind closed doors decision not fund treatment for CLL patients who have relapse after more than 3...

I know many are following the issue regarding NHS England's behind closed doors ...

Mick491

•6 years ago

16 Replies

LAS VEGAS - CLL/Oncologist recommendation needed.

Can anyone recommend a good CLL doctor in the Las Vegas area?

misterbee

•6 years ago

9 Replies

Letter to my MP regarding funding of Ibrutinib

Dear Mrs Hobhouse, I am a cancer patient and under treatment from the RUH since 2006 when I was first diagnosed with CLL. The disease is a slowly progressing...

Dear Mrs Hobhouse, I am a cancer patient and under treatment from the RUH since ...

Ruhi9

•6 years ago

13 Replies

Muscle Spasms - Not dehydrated

Post round five FCR with Neulasta (this week). I am experiencing moderate spasms / muscular seizures. Has anyone had similar experiences? Suggestions for...

Post round five FCR with Neulasta (this week). I am experiencing moderate spasms...

Paul_Mangold

•6 years ago

5 Replies

Joint pain

I am suffering with terrible throbbing pains in both my knees and muscle pains in my thighs, I am wondering if any other cll sufferers have experienced such...

I am suffering with terrible throbbing pains in both my knees and muscle pains i...

dandelup

•6 years ago

24 Replies

Does anyone get leg pain ?? Mostly upper thighs it feels like bone pain at times, not sure it’s CLL related

CLl and Leg pain

Mazendudar

•6 years ago

5 Replies

DreamLab App using your mobile phone to help cancer research update

Perhaps someone has already posted this but have just acquired an App DreamLab available in NZ. It’s Free! Available in Australia too. Last night my phone...

Perhaps someone has already posted this but have just acquired an App DreamLab a...

YelvertonDevon

•6 years ago

4 Replies

CLL, Trisomy12, unmutated, NOTCH1 - NOT SURE WHERE TO GO - WHAT TO DO

I was diagnosed with CLL 12 years ago. WBC' s have been rising year after year, I am finally to the point where doubling time is 6 mo - time to treat. I...

I was diagnosed with CLL 12 years ago. WBC' s have been rising year after year, ...

misterbee

•6 years ago

39 Replies

high altitude

I am in W & W for over 4 years, blood report are normal. This year I want to travel to high altitude mount area (about 4000 meter), is anyone have experience...

I am in W & W for over 4 years, blood report are normal. This year I want to tra...

Sheng

•6 years ago

9 Replies

Hospital response to lack of monitoring after first FCR

Just had a call back from a (lady) doctor after my call to the (male) consultant and (male) trial nurse to complain about lack of monitoring by the hospital....

Just had a call back from a (lady) doctor after my call to the (male) consultant...

Mandy56

•6 years ago

18 Replies

Who's coming to the fatigue meeting in Oxford?

One of the things I enjoyed most about last November's CCLSA meeting in London was the chance to meet other CLLers face to face. You really are not alone!...

One of the things I enjoyed most about last November's CCLSA meeting in London w...

AdrianUK

•6 years ago

5 Replies

13q14.3

How do you look up prior questions? I have a 13q14.3 deletion and curious as to what means and I’m sure it’s been discussed before but I don’t know how to...

How do you look up prior questions? I have a 13q14.3 deletion and curious as to...

Jhoover1014

•6 years ago

7 Replies

Diagnose correctly autoimmune or over crowded bone marrow

In Australia, how to correctly diagnose late stage Cll, infiltration from over crowded bone marrow, or autoimmune disease/ problem. What test do we ask for ?...

In Australia, how to correctly diagnose late stage Cll, infiltration from over c...

buddyjo

•6 years ago

2 Replies

Thoughts on CLL treatment and watch and wait

I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand...

I’d be really interested in other people’s thought processes about this. I’m not...

AdrianUK

•6 years ago

19 Replies

Any credible update on curcumin?

Hi All Since we all wish to avoid toxic and expensive treatments, one way is to prolong w&w as much as possible. Neil or other experts may be able to update...

Hi All Since we all wish to avoid toxic and expensive treatments, one way is to ...

vinnet

•6 years ago

12 Replies

Notifications Problem

Have not been receiving notification for the past 3 days. Anybody able to help restore as I am getting very frustrated🤣😖

Have not been receiving notification for the past 3 days. Anybody able to help r...

Hidden

•6 years ago

1 Reply

Dizziness when getting up too fast or bending over.

I have been getting pretty dizzy and lightheaded almost like I’m about to pass out when I either get up too fast or bend over. I told this to my DR on the last...

I have been getting pretty dizzy and lightheaded almost like I’m about to pass o...

lukejensen27

•6 years ago

15 Replies

Blood transfusion after first round of FCR

Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart...

Am I just unlucky? The start of the FCR went so well, though I was breathless fr...

Mandy56

•6 years ago

55 Replies

Patient Power Community

For all..... check out Patient Power.....fantastically informative with conversations and videos by CLL specialists. Free to join. I’ve learned a lot from the...

For all..... check out Patient Power.....fantastically informative with conversa...

Njsailorgirl

•6 years ago

10 Replies

East coast second opinion for SLL?

Hi all New here and finding the posts supportive. Dia in 2010 on W&W here in MD at Johns Hopkins. Now a patient at GBMC in Townson MD. Tried Ibrutinib until...

Hi all New here and finding the posts supportive. Dia in 2010 on W&W here in M...

Njsailorgirl

•6 years ago

14 Replies

Videos from CLL Live 2018 Niagara Falls Conference available

The videos from the CLL Live 2018 Niagara Falls, Canada, Conference are beginning to appear on YouTube:...

The videos from the CLL Live 2018 Niagara Falls, Canada, Conference are beginnin...

lankisterguy

Volunteer•6 years ago

1 Reply

Newly diagnosed emotions

I was just diagnosed last week and I’m having all kinds of emotions. Is it kind of like grieving? When I’m around my family, I’m good. But when I am alone,...

I was just diagnosed last week and I’m having all kinds of emotions. Is it kind...

Jhoover1014

•6 years ago

14 Replies

Diabetes and CLL

How does Type 2 diabetes affect CLL and vice versa?

Jhoover1014

•6 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

Survey of Monoclonal B-cell lymphocytosis Patients by Queen's University in Belfast.

CLL and alcoholism

Vaxil

My cancer is in remission – what does this mean?

Abs lymph

Therapeutic Massage

Venetoclax ramp up

Ibrutinib

LAS VEGAS - CLL/Oncologist recommendation needed.

Letter to my MP regarding funding of Ibrutinib

Muscle Spasms - Not dehydrated

Joint pain

Does anyone get leg pain ?? Mostly upper thighs it feels like bone pain at times, not sure it’s CLL related

DreamLab App using your mobile phone to help cancer research update

CLL, Trisomy12, unmutated, NOTCH1 - NOT SURE WHERE TO GO - WHAT TO DO

high altitude

Hospital response to lack of monitoring after first FCR

Who's coming to the fatigue meeting in Oxford?

13q14.3

Diagnose correctly autoimmune or over crowded bone marrow

Thoughts on CLL treatment and watch and wait

Any credible update on curcumin?

Notifications Problem

Dizziness when getting up too fast or bending over.

Blood transfusion after first round of FCR

Patient Power Community

East coast second opinion for SLL?

Videos from CLL Live 2018 Niagara Falls Conference available

Newly diagnosed emotions

Diabetes and CLL

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