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CLL Support

22,532 members • 38,709 posts

All posts for December 2015

FLAIR update Round 2

FLAIR trial Ibrutinib Rituximab arm. So....after first round I felt OK if tired, massive bruising, but am usually easily bruised so can cope with that, so long...

FLAIR trial Ibrutinib Rituximab arm. So....after first round I felt OK if tired,...

romarin

•8 years ago

16 Replies

BR ...Side effects

My husband is about to have his 3rd of 6 BR treatments..I am worried about him as , although he has tolerated the treatment well, he has become very...

My husband is about to have his 3rd of 6 BR treatments..I am worried about him a...

alice111

•8 years ago

6 Replies

Ohio State

Got the call today that my appointment at Ohio State/The James Cancer Center has been set up for February 9th. I'm so nervous but also eager to see what the...

Got the call today that my appointment at Ohio State/The James Cancer Center has...

KellyM

•8 years ago

22 Replies

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OIL PULLING

Anyone heard of this ??? , I have become a great advocate of oil pulling using coconut oil. I started two months ago and never have I felt my mouth to be...

Anyone heard of this ??? , I have become a great advocate of oil pulling using ...

Decodes

•8 years ago

11 Replies

Will You Tell Your Story to Help Advance Care?

Dear fellow people living with CLL: We all dream of a cure and, until that can be achieved, we want access to new medicines to help us live better and longer....

Dear fellow people living with CLL: We all dream of a cure and, until that can ...

andrewschorr

•8 years ago

1 Reply

Is Ibroproven pain killer OK for CLL?

I was told that people with CLL should not take Ibroproven (UK) pain killer. Is this correct?

I was told that people with CLL should not take Ibroproven (UK) pain killer. Is ...

splashsplash3

•8 years ago

5 Replies

Fasting - to lower white blood cell count

Curious if anyone has tried fasting. This study seems to point to fasting as a way to lower white blood cell count. " Human clinical trials were conducted...

Curious if anyone has tried fasting. This study seems to point to fasting as a ...

sweetsue49

•8 years ago

16 Replies

What’s in your herbal medicines?

"Many people take herbal medicines, including traditional Chinese medicine (TCM) thinking they are doing something positive for their health. Ironically, in...

"Many people take herbal medicines, including traditional Chinese medicine (TCM)...

AussieNeil

Administrator•8 years ago

2 Replies

Post-hospital questions

My husband was released from the hospital Friday after 2 weeks of IV treatment for fungal pneumonia, contracted (we think) during the 6 weeks of Campath...

My husband was released from the hospital Friday after 2 weeks of IV treatment ...

LAinNYC

•8 years ago

10 Replies

Sharing the good news

This is my first post on this very interesting and helpful website of a marvellous community. I am attending a trial with the new medicin Venetoclax and I’d...

This is my first post on this very interesting and helpful website of a marvello...

Korstiaan

•8 years ago

16 Replies

Airplane germs spread reduction.

Raymond Wang has posted an amazing device on TED youth about reducing the spread of passenger to passenger infection. Worth 6 minutes of viewing if you have...

Raymond Wang has posted an amazing device on TED youth about reducing the spread...

David73

•8 years ago

1 Reply

Shoulder and hip pain

Hi all, I don't think this is any way related to my CLL but would just like some thoughts or experiences from you all if possible. I had a normal night on...

Hi all, I don't think this is any way related to my CLL but would just like some...

andygm

•8 years ago

12 Replies

Useful App to download

Hi All I've just stumbled upon this app (pictured below) which I think is of interest to those located in Aust & NZ. Many of you may already know about it but...

Hi All I've just stumbled upon this app (pictured below) which I think is of in...

Bexsue

•8 years ago

3 Replies

Official diagnosis

I posted the other day that it was suspected that I have CLL/SLL. Today I saw my oncologist and he confirmed that diagnosis. I am on watch and wait. He did...

I posted the other day that it was suspected that I have CLL/SLL. Today I saw m...

KellyM

•8 years ago

21 Replies

ASH News and Discussion Videos

Dear friends, we recorded many interviews with experts from the just completed ASH conference in Florida and almost every day we post more for your viewing....

Dear friends, we recorded many interviews with experts from the just completed A...

andrewschorr

•8 years ago

4 Replies

Use them and lose them: finding alternatives to antibiotics to preserve their usefulness

Since we are deficient in our ability to fight off infections due to CLL's impact on our immune system, we are more likely to need antibiotics to help us...

Since we are deficient in our ability to fight off infections due to CLL's impa...

AussieNeil

Administrator•8 years ago

6 Replies

Antibiotic resistance

Antibiotics seem to be recommended quite often if we have CLL, sometimes just as a precaution eg. visits to dental hygienists. How does this relate to the more...

Antibiotics seem to be recommended quite often if we have CLL, sometimes just as...

G1llHa1n

•8 years ago

3 Replies

Groin pain.

I am experiencing pain in my right groin area. I can't feel an enlarged lymph node in that area and I don't have any other symptoms. I am on watch and wait...

I am experiencing pain in my right groin area. I can't feel an enlarged lymph n...

RK66

•8 years ago

24 Replies

Raised WBC count

Hi everyone, I think I mentioned that I had my blood tests done a couple of weeks ago to see how things are progressing. I am lucky that I feel fine (other...

Hi everyone, I think I mentioned that I had my blood tests done a couple of week...

Firefly14

•8 years ago

3 Replies

Possible CLL/SLL

Hi everyone! I'm a healthy 38 year old Mom to a three year old and I've been told I could possibly have CLL/SLL. I had a fine needle aspiration a few weeks...

Hi everyone! I'm a healthy 38 year old Mom to a three year old and I've been to...

KellyM

•8 years ago

24 Replies

Manchester CLL support group meeting January 12th - 2.00pm - 3.30pm.

Are you looking for a local CLL support group in Manchester? Come along to the Manchester CLL Support Group for a coffee and a chat WHERE The Christie...

Are you looking for a local CLL support group in Manchester? Come along to the...

HAIRBEAR_UK

Founder Admin•8 years ago

7 Replies

Ibrutinb or Idelalisib not working? Patients swapping had mostly favourable outcomes according to a study of 178 CLL patients.

From Medical News today: "Chronic lymphocytic leukemia (CLL) patients who stopped taking the kinase inhibitors (KIs), ibrutinib or idelalisib, had mostly...

From Medical News today: "Chronic lymphocytic leukemia (CLL) patients who stoppe...

AussieNeil

Administrator•8 years ago

4 Replies

Elevated LDH

Hello to all. I've been reading posts on the site for months and have found it so helpful. I was diagnosed with CLL two years ago and went through 6 cycles of...

Hello to all. I've been reading posts on the site for months and have found it s...

margella

•8 years ago

8 Replies

Acupuncture for Fatigue

Hi Fellow CLL-ers, I've been waiting to write this until enough time had gone by to provide a sufficient test. Now it has, and I can. Acupuncture had...

Hi Fellow CLL-ers, I've been waiting to write this until enough time had gone b...

Ducksoup

•8 years ago

7 Replies

Im an vietnam veteran diagnosed with CLL 2013

One may see me as new to CLL forum but i keep a close watch on posts. I feel for the ones that have taken the step from w&w into the actions of treatment, and...

One may see me as new to CLL forum but i keep a close watch on posts. I feel for...

brad8

•8 years ago

5 Replies

Feeling Exhausted: How to overcome Fatigue

Hi All, Diagnosed in March 2015. ALC not doubled in 06 months and still doctors are putting me in W&W. Issue now I am facing is fatigue, tiredness and pain in...

Hi All, Diagnosed in March 2015. ALC not doubled in 06 months and still doctors ...

AAli

•8 years ago

8 Replies

Remind me again, what is thalidomide and how did it cause so much harm? How did it change the clinical trial process?

Thalidomide has a dual legacy when it comes to CLL treatments. 1) The thalidomide tragedy caused major changes in the way new drugs were trialled and approved...

Thalidomide has a dual legacy when it comes to CLL treatments. 1) The thalidomi...

AussieNeil

Administrator•8 years ago

5 Replies

Watch and wait but feeling rubbish :(

I was diagnosed with cll stage 3 in August15. After getting over the shock I feel that I have been leading a relatively normal life...work etc . I have lower...

I was diagnosed with cll stage 3 in August15. After getting over the shock I fee...

Bethan49

•8 years ago

19 Replies

Live Ask the Expert today, Roundtable discussion available tomorrow

Just recorded roundtable discussion with CLL experts Gribben, Wierda and Tam at ASH in Orlando, Florida, will publish tomorrow, but don't miss Live CLL Ask the...

Just recorded roundtable discussion with CLL experts Gribben, Wierda and Tam at ...

andrewschorr

•8 years ago

Be the first to reply

The World.

Please don't interpret this as a political statement. This is no place for politics or personal agendas but I can't help but say how wonderful everyone here...

Please don't interpret this as a political statement. This is no place for poli...

RK66

•8 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2015

FLAIR update Round 2

BR ...Side effects

Ohio State

OIL PULLING

Will You Tell Your Story to Help Advance Care?

Is Ibroproven pain killer OK for CLL?

Fasting - to lower white blood cell count

What’s in your herbal medicines?

Post-hospital questions

Sharing the good news

Airplane germs spread reduction.

Shoulder and hip pain

Useful App to download

Official diagnosis

ASH News and Discussion Videos

Use them and lose them: finding alternatives to antibiotics to preserve their usefulness

Antibiotic resistance

Groin pain.

Raised WBC count

Possible CLL/SLL

Manchester CLL support group meeting January 12th - 2.00pm - 3.30pm.

Ibrutinb or Idelalisib not working? Patients swapping had mostly favourable outcomes according to a study of 178 CLL patients.

Elevated LDH

Acupuncture for Fatigue

Im an vietnam veteran diagnosed with CLL 2013

Feeling Exhausted: How to overcome Fatigue

Remind me again, what is thalidomide and how did it cause so much harm? How did it change the clinical trial process?

Watch and wait but feeling rubbish :(

Live Ask the Expert today, Roundtable discussion available tomorrow

The World.

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