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CLL Support

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All posts for October 2013

Do I tell my (teenage) children about my diagnosis?

This reassuring report about a Norwegian study comparing 120 teenagers who had parents with invasive cancer, including leukaemia, with 429 teenagers with...

This reassuring report about a Norwegian study comparing 120 teenagers who had p...

AussieNeil

Administrator•11 years ago

1 Reply

Who is Getting the IGHV (formerly known as IgVH) Mutational Status Tests in UK?

Hello all, I recently got my FISH results back and had for some reason assumed that I would also get IGHV mutationial status tested along with that as part of...

Hello all, I recently got my FISH results back and had for some reason assumed ...

jibs60

•11 years ago

14 Replies

HealthUnlocked site improvements: Help Pages greatly updated and Report is back

Introducing the greatly enhanced Help page If you've used the Help menu (right of centre on the green menu bar), you were probably less than impressed...

Introducing the greatly enhanced Help page If you've used the Help menu (right o...

AussieNeil

Administrator•11 years ago

1 Reply

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More on research into Tenovin and treatment of CLL

It is possible to report on further work of the Cardiff CLL research group in partnership with Dundee Cancer Centre about their findings in the development...

It is possible to report on further work of the Cardiff CLL research group in p...

HAIRBEAR_UK

Founder Admin•11 years ago

2 Replies

Autoimmune haemolytic anaemia - AIHA

Hello, i am a new member and have found the discussions very helpful. I need some help please. I was diagnosed with CLL a year ago. I was put on steroid...

Hello, i am a new member and have found the discussions very helpful. I need som...

School3

•11 years ago

5 Replies

Ibrutinib Trial

Hello. I've just discovered this forum trying to find out some information about the drug Ibrutinib and it was great to read all the posts. I have been on W &...

Hello. I've just discovered this forum trying to find out some information about...

Medwaylady

•11 years ago

18 Replies

Ibrutinib Slow but steady foreward movement.

Slowly things move forwards… New Marketing Authorisation Application Submitted to EMA for Ibrutinib for the Treatment of Two Forms of Blood Cancer The...

Slowly things move forwards… New Marketing Authorisation Application Submitted ...

Kwenda

•11 years ago

20 Replies

Start at 9 finish at 10

Hi folks. Returned to work this morning after 6 months chemo. Returned to work at 9 am but was heading home at 10am having been no longer required. I WAS a...

Hi folks. Returned to work this morning after 6 months chemo. Returned to work ...

Billys60

•11 years ago

19 Replies

Late October - Clinical trial update - B + R and Idelalisib - CAL 101

Hey, Well three days in the Day Care centre last week - first for IVIG and then the fourth round of two day chemo infusions. Both went reasonably well, with...

Hey, Well three days in the Day Care centre last week - first for IVIG and the...

MartyR

•11 years ago

3 Replies

I am nearly 6 months after FCR. My WBC and ALC are just below specification.

Would a FISH test (it's on my blood form) be accurate considering the low number of leukemic cells or lymphocytes?

Would a FISH test (it's on my blood form) be accurate considering the low number...

keepfit123

•11 years ago

5 Replies

All Trials Registered-All Results Reported. European Medicines Agency wrote about the benefits from increased access to clinical trial data

This week, the heads of the European Medicines Agency wrote http://www.nejm.org/doi/full/10.1056/NEJMp1310771 Yesterday the pharmaceutical company LEO Pharma...

This week, the heads of the European Medicines Agency wrote http://www.nejm.org...

Myrddin

•11 years ago

3 Replies

Pain, Pus, and Poison - Dr Michael Mosely

Wondered if anyone saw last episode "Poison" on Tues 22nd Oct of Dr Michael Mosely's series, "Pain Pus and Poison": http://www.bbc.co.uk/programmes/p01f53b9...

Wondered if anyone saw last episode "Poison" on Tues 22nd Oct of Dr Michael Mose...

Ernest2

•11 years ago

3 Replies

iwCLL 2013: My Advice to Patients about their Therapy and How to Talk with Your Doctors: Shared Decision Making

Hi friends I just posted a very short interview with yours truly by my friend Andrew Schorr on how to approach your care in this time of much promise, but...

Hi friends I just posted a very short interview with yours truly by my friend A...

bkoffman

CLL CURE Hero•11 years ago

6 Replies

Just joined the group so here we go with my question

My GP was monitoring my bloods over the last 12 months, he said I had Chronic Lymphoproliferative disorder, last month I was Ref to the haematologist at the...

My GP was monitoring my bloods over the last 12 months, he said I had Chronic Ly...

Hidden

•11 years ago

24 Replies

Update on Novel B-Cell Receptor Signaling Inhibitors from NCCN 8th Annual Congress on Hematologic Malignancies

The article below from OncLive, provides a high level overview of trials experience of the new drugs Ibrutinib, Idelalisib and IPI-145 by Jeffrey Jones, MD,...

The article below from OncLive, provides a high level overview of trials experie...

AussieNeil

Administrator•11 years ago

1 Reply

Hello all! After my first bout of treatment ( Bendamustine + Retuximab ) one of the pills I have to take is Allopurinol 300mg.

It is an enzyme inhibitor which is for controlling uric acid build up. I have been taking one a day for 8 days. 2 days ago my left bicep began to ache and has...

It is an enzyme inhibitor which is for controlling uric acid build up. I have be...

maureenmckeown

•11 years ago

12 Replies

I suffer with chronic fatigue but it tends to be worse in the morning and does not tend to subside for several hours. Is this common with ha

Hidden

•11 years ago

4 Replies

Vaccines - conjugate vs non conjugate

My husband went for his pneumonia vaccines yesterday and he was given the 23 strain vaccine which I believe is non conjugate. I know the advice is to have the...

My husband went for his pneumonia vaccines yesterday and he was given the 23 str...

shellsb

•11 years ago

6 Replies

I was diagnosed last week with CLL. I intend to go to India for Christmas and New Year. How will this affect my travel insurance?

Hidden

•11 years ago

10 Replies

Making Peace with FCR in the Squeezed Middle: Response to another very hopeful video from Steven Rosen

I've just been watching this, as posted across several CLL sites today, and by Kwenda on this site earlier today...

I've just been watching this, as posted across several CLL sites today, and by K...

jibs60

•11 years ago

25 Replies

Another very hopeful video from Patient Power

Another very hopeful video from Patient Power Dr. Steven T. Rosen, director of the Robert H. Lurie Comprehensive Cancer Center, shares his excitement about...

Another very hopeful video from Patient Power Dr. Steven T. Rosen, director of ...

Kwenda

•11 years ago

1 Reply

Not really a question BUT.... For Neil and others....

The TV news in the UK has lots of information regarding the massive fires in Australia. Apparently the wild fire season is both exceptionally bad and...

The TV news in the UK has lots of information regarding the massive fires in Aus...

Kwenda

•11 years ago

6 Replies

I am being considered for a trial using FC and Ofatumumab at the Freeman Newcastle. I live in Cumbria. There is no help with travel/parking.

My wife and I are in our seventies, parking spaces are limited. Does anyone know if we could use a disabled space during the time I am having my treatment. The...

My wife and I are in our seventies, parking spaces are limited. Does anyone know...

jimh

•11 years ago

4 Replies

CLLSA London regional meeting, St Bartholomew's Hospital, Dec 3rd

This is an image of the famous Great Hall at Bart's where the meeting is to be held. See http://en.wikipedia.org/wiki/St_Bartholomew's_Hospital for more about...

This is an image of the famous Great Hall at Bart's where the meeting is to be h...

HAIRBEAR_UK

Founder Admin•11 years ago

2 Replies

Informative reading for the newly diagnosed.

A few days ago, I was cleaning up and organising my Bookmarks, and among the sites I always keep was the primer page I've linked below. The site Webmaster,...

A few days ago, I was cleaning up and organising my Bookmarks, and among the sit...

Hidden

•11 years ago

2 Replies

Unusual and unpleasant Acyclovir (Zovirax) side effect mainly occurs in people with renal failure

ONE moment you are alive. The next you are dead. A few hours later and you are alive again. Pharmacologists have discovered a mechanism that triggers...

ONE moment you are alive. The next you are dead. A few hours later and you are a...

AussieNeil

Administrator•11 years ago

13 Replies

Is your computer/phone/tablet secure?

The post below recommends techniques to improve your on line security, but that's not much use if your computer/smartphone/tablet is insecure. All your...

The post below recommends techniques to improve your on line security, but that'...

AussieNeil

Administrator•11 years ago

56 Replies

Volunteers required for CLL research interviews of relapsed and refractory UK members.

Are you able to take part in a study on Chronic Lymphocytic Leukaemia (CLL) and Mantle Cell Lymphoma (MCL). Thanks to your help the research company have...

Are you able to take part in a study on Chronic Lymphocytic Leukaemia (CLL) an...

HAIRBEAR_UK

Founder Admin•11 years ago

Be the first to reply

I was diagnosed in February with WBC of 29. On W&W but quite concerned to note that my WBC had risen to from 40 in June to 51 in September

and is now at 55. I have been taking Sea Kelp, Zinc and vitamin B 3 supplements to boost my immune system and just wondering if these may be affecting WBC....

and is now at 55. I have been taking Sea Kelp, Zinc and vitamin B 3 supplements ...

Elizabetha

•11 years ago

11 Replies

Watch & Wait.... or Active Surveillance

At the Oxford meeting, Anna Schuh put forward that there is a lot of evidence that CLLers don't like the W&W term (too passive - is anything going on? etc -...

At the Oxford meeting, Anna Schuh put forward that there is a lot of evidence th...

Quarry

•11 years ago

46 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2013

Do I tell my (teenage) children about my diagnosis?

Who is Getting the IGHV (formerly known as IgVH) Mutational Status Tests in UK?

HealthUnlocked site improvements: Help Pages greatly updated and Report is back

More on research into Tenovin and treatment of CLL

Autoimmune haemolytic anaemia - AIHA

Ibrutinib Trial

Ibrutinib Slow but steady foreward movement.

Start at 9 finish at 10

Late October - Clinical trial update - B + R and Idelalisib - CAL 101

I am nearly 6 months after FCR. My WBC and ALC are just below specification.

All Trials Registered-All Results Reported. European Medicines Agency wrote about the benefits from increased access to clinical trial data

Pain, Pus, and Poison - Dr Michael Mosely

iwCLL 2013: My Advice to Patients about their Therapy and How to Talk with Your Doctors: Shared Decision Making

Just joined the group so here we go with my question

Update on Novel B-Cell Receptor Signaling Inhibitors from NCCN 8th Annual Congress on Hematologic Malignancies

Hello all! After my first bout of treatment ( Bendamustine + Retuximab ) one of the pills I have to take is Allopurinol 300mg.

I suffer with chronic fatigue but it tends to be worse in the morning and does not tend to subside for several hours. Is this common with ha

Vaccines - conjugate vs non conjugate

I was diagnosed last week with CLL. I intend to go to India for Christmas and New Year. How will this affect my travel insurance?

Making Peace with FCR in the Squeezed Middle: Response to another very hopeful video from Steven Rosen

Another very hopeful video from Patient Power

Not really a question BUT.... For Neil and others....

I am being considered for a trial using FC and Ofatumumab at the Freeman Newcastle. I live in Cumbria. There is no help with travel/parking.

CLLSA London regional meeting, St Bartholomew's Hospital, Dec 3rd

Informative reading for the newly diagnosed.

Unusual and unpleasant Acyclovir (Zovirax) side effect mainly occurs in people with renal failure

Is your computer/phone/tablet secure?

Volunteers required for CLL research interviews of relapsed and refractory UK members.

I was diagnosed in February with WBC of 29. On W&W but quite concerned to note that my WBC had risen to from 40 in June to 51 in September

Watch & Wait.... or Active Surveillance

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