You are here

Forum

sandy craine on 31 December 2012

Category: Uncategorised

Replies: 3

Last updated: 1 January 2013

Happy New Year from CMLS group- 2013
by gizmos mum (Jan 1)

Thank you Sandy for all the useful info you put on here. It was a real help to me in the first few months of being diagnosed. Happy new year to you, and to everyone on the site i hope we all have a

by karen (Jan 1)

Best wishes for a healthy and happy New Year to everyone who uses this forum and many thanks to Sandy x

by Calalily (Jan 1)

Thank you Sandy. Happy new year to all my new friends on this forum and thanks for all your help over the last few months. I hope 2013 is kind to us all.

Best wishes

Calalily

by sandy craine (Dec 31)

Happy New Year to all CML patients and their families, hoping all your wishes come true in 2013 Sandy
Category: Uncategorised

Replies: 3

Last updated: 1 January 2013
cousineg on 27 December 2012

Category: Uncategorised

Replies: 5

Last updated: 3 January 2013

Can we expect a cure for CML in 2013?
by cousineg (Jan 3)

Thank you, Sandy for all you do on this forum and for the CML community overall!

I wish you a healthy, happy, and prosperous 2013!

by sharavana (Dec 29)

dear friends, i am enclosing an email from dr prabhu from the The Pennsylvania

State University who has proven in the lab that fish oil extracts can cure CML.He needs

assistance and

by sandy craine (Dec 28)

Happy New Year to you Gilles and thanks for continuing to post links here. 'Cure' is a very seductive word- not sure I would use it any more even though I have had a transplant.

Somehow having

by teddyb (Dec 27)

Lets hope :)
Thanks for a great site cousinreg, i check it almost every day.
Category: Uncategorised

Replies: 5

Last updated: 3 January 2013
auditek82 on 26 December 2012

Category: Uncategorised

Replies: 10

Last updated: 2 January 2013

GLEEVAC SIDE EFFECTS
by Hethers (Jan 2)

I was told by my cancer nurse that if i were to take Quinine i would meed my bloods checked every other day as it will effect my counts. he got the info from Novartis i think.

by sandy craine (Dec 28)

imatinib/Glivec side effects do vary with individuals but... it does seem that muscle cramps and bone pain is pretty common to all of us. As others have already said- this side effect does get

by Steven Davies (Dec 28)

I suffered from muscle cramps and was put on quinine which i reacted badly to. Yu would need to drink thousands of

litres of tonic water to get any benefit.
I was prescribed Calcium tablets

by chrissie (Dec 28)

Yes, and on one occasion for me sheer agony as it happened in the major neck muscle and lasted 2 years. It appears that taking statins increases these cramps, so, if you are taking them, get onto at
Category: Uncategorised

Replies: 10

Last updated: 2 January 2013
teddyb on 26 December 2012

Category: Uncategorised

Replies: 3

Last updated: 29 December 2012

REPROGRAMMING ENZYME PROMOTES CHRONIC MYELOID LEUKEMIA
by sharavana (Dec 29)

dear and respected doctor, i am enclosing an email from dr prabhu from the The Pennsylvania

State University who has proven in the lab that fish oil extracts can cure CML.He needs

by teddyb (Dec 29)

Yes, i wondered about the phase statement as well, as i knew most people (around 90%?) were diagnosed in CP.
Anyway, lets hope the drug works, might be a game changer, who knows :)

by sandy craine (Dec 28)

Yes very interesting article and thanks for the link. There are a few misleading statements though, so just to reassure those who might be worried....
The article says:

'The estimated

by teddyb (Dec 26)

http://www.omglobe.com/2012/12/25/reprogramming-enzyme-promotes-chronic-...
Very interesting article.
Category: Uncategorised

Replies: 3

Last updated: 29 December 2012
Steven Davies on 23 December 2012

Category: Uncategorised

Replies: 3

Last updated: 24 December 2012

Merry Christmas and a happy and healthy new year
by sandy craine (Dec 24)

Wishing you all a wonderful,relaxing and peaceful Xmas holiday, and very best wishes for the New Year.
I would also like to thank Steven, Chris, Nigel, Olivia, Chrissie, Naomii, Rachael, Richard,

by cdw5000 (Dec 24)

Happy Christmas to all and a massive thanks to Sandy for all she does on this forum and CML overall. Here's looking forward to 2013 and some more CML treatment breakthroughs.
Chris

by nigel (Dec 23)

Thanks, Heres to a healthy new year for us all. Enjoy. Nigel

by Steven Davies (Dec 23)

Carol and I would like to wish seasons greetings to all and a healthy and happy new year.

Best wishes. Steven and Carol
Category: Uncategorised

Replies: 3

Last updated: 24 December 2012
Ali Loram on 19 December 2012

Category: Uncategorised

Replies: 3

Last updated: 22 December 2012

Sharing fantastic news
by jacqui from Colchester (Dec 22)

Such brilliant news Ali, I have been thinking about you xx
So happy that you will be honme for christmas.
Have a great christmas with love
Jacqui

by teddyb (Dec 20)

Great news Ali!!!!!

by sandy craine (Dec 19)

Dear Ali,

well done! This is very good news. Do you know your levels of neutrophils etc.?

I hope you have a wonderful Xmas and in the New Year will see you back home full time and with a

by Ali Loram (Dec 19)

Hi all, I thought I would share my good new with you following my STC. I saw the prof today & have the results from my BCR ABL, it's reporting ZERO!!!! This is good news as the bloods were
Category: Uncategorised

Replies: 3

Last updated: 22 December 2012
sandy craine on 15 December 2012

Category: Uncategorised

Replies: 1

Last updated: 15 December 2012

Help ASH Fight For NIH Funding
by sandy craine (Dec 15)

Planeloads of Doctors Determined to Cure Blood-Related Cancers

I had a weird experience yesterday. I flew from my home in Barcelona, Spain, changed to a bigger plane in Paris, and flew to

by sandy craine (Dec 15)

Help ASH Fight For NIH Funding

Research supported by the National Institutes of Health (NIH) is in serious jeopardy. NIH's inflation-adjusted budget today is almost 20 percent lower than it
Category: Uncategorised

Replies: 1

Last updated: 15 December 2012
sandy craine on 15 December 2012

Category: Uncategorised

Replies: 2

Last updated: 17 December 2012

Cancer Research UK - IMPROVED TREATMENTS FOR CHRONIC MYELOID LEUKAEMIA HAVE DRAMATICALLY INCREASED SURVIVAL
by sandy craine (Dec 17)

Hi Gerry, yes I agree it is confusing to us as CML patients in the real present world. The figures in report are taken from past years up to 2008. It is widely acknowledged that there is difficulty

by Gerry (Dec 17)

I'm a bit confused by the comment -
SURVIVAL for people diagnosed with Chronic Myeloid Leukaemia (CML) has risen by nearly half, with around 58 per cent of people surviving their disease for at

by sandy craine (Dec 15)

Cancer Research UK - IMPROVED TREATMENTS FOR CHRONIC MYELOID LEUKAEMIA HAVE DRAMATICALLY INCREASED SURVIVAL
Wed, 12 December 2012 | Campaign Organisation Press Release

Contents
SURVIVAL for
Category: Uncategorised

Replies: 2

Last updated: 17 December 2012
teddyb on 14 December 2012

Category: Uncategorised

Replies: 2

Last updated: 18 December 2012

FDA approves Ponatinib
by sandy craine (Dec 18)

“BOSULIF is the third new medicine from Pfizer Oncology’s pipeline to be approved by the FDA in just 13 months, a remarkable achievement that reflects our commitment to advancing the science in

by sandy craine (Dec 14)

'Approximately 5,000 new cases of CML are diagnosed each year in the U.S. CML patients treated with TKIs can develop resistance or intolerance over time to these therapies. Iclusig is a targeted

by teddyb (Dec 14)

http://www.thestreet.com/story/11793242/1/fda-approves-ariad-pharma-leuk...
Good news :)
Category: Uncategorised

Replies: 2

Last updated: 18 December 2012
joe m on 14 December 2012

Category: Uncategorised

Replies: 2

Last updated: 10 January 2013

Hi, Joe from Harwich.
by jacqui from Colchester (Jan 10)

Welcome to the site . I am treated at Colchester under Dr Campbell - they are a great team. I was diagnosed in 2009 when i was 43 years old after routine blood tests. I have just changed to

by sandy craine (Dec 14)

Hi Joe and welcome. Glad you have found us so quickly. There are lots of people from many countries on here, so you are in good company. Many are being treated with imatinib but a lot with nilotinib

by joe m (Dec 14)

Hello everyone. I'm 65 and was diagnosed with C.M.L. the end of October 2012. What a shock that was, up until then I thought I was a pretty fit fella for my age. Had been to my local doctors as I
Category: Uncategorised

Replies: 2

Last updated: 10 January 2013
auditek82 on 12 December 2012

Category: Uncategorised

Replies: 1

Last updated: 13 December 2012

i have found this article
by sandy craine (Dec 13)

Hi, this seems to be still in very early investigative research i.e in mice.

As far as I can understand, this compound targets stem cells specifically. There are studies that are doing this by

by auditek82 (Dec 12)

http://english.yonhapnews.co.kr/business/2010/04/20/13/0503000000AEN2010...

I am a 30yr old man who was diagnosed with cml this month and was prescribed imatinib tablets.

I have found
Category: Uncategorised

Replies: 1

Last updated: 13 December 2012
sandy craine on 12 December 2012

Category: Uncategorised

Replies: 2

Last updated: 18 December 2012

Penn State University-Novartis Deal
by sandy craine (Dec 18)

Hi Don... it's good to know that this kind of article is of interest. Sometimes I am not sure if anyone 'out there' finds such news helpful and I do hesitate to put such links on this forum. So-

by Don Adkins (Dec 17)

Hi Sandy,
Great article. In my opinion we are going to see much more of these types of partnerships. This truly is newsworthy.
Blessings,

Don

by sandy craine (Dec 12)

Tuesday, December 11, 2012
Alliance Deal of the Year Nominee: Novartis/University of Pennsylvania
' Novartis’ alliance with the University of Pennsylvania around cancer immunotherapies based on
Category: Uncategorised

Replies: 2

Last updated: 18 December 2012
sandy craine on 12 December 2012

Category: Uncategorised

Replies: 1

Last updated: 21 December 2012

Professor Steve O'brien's 2012 ASH Report
by sandy craine (Dec 21)

Report from ASH 2012.

A number of CML advocates, including Giora, Jan, Pat, Erin, Merula, Cheryl-Anne, Anna, Mei Ching, Pru, Greg, Anita, Zhengchen, Inez, Viji and others attended ASH this

by sandy craine (Dec 12)

This is the annual report from ASH shared with us by Prof. Steve O'brien o Newcastle University. I have posted a shorter version on the ASH, ASCO conf. page (see main menu) but for those who are
Category: Uncategorised

Replies: 1

Last updated: 21 December 2012
sandy craine on 11 December 2012

Category: Uncategorised

Replies: 1

Last updated: 13 December 2012

Study Brings Positive Results For the Most Resistant Types of CML
by sandy craine (Dec 13)

With Ponatinib, CML Resistance Is Token - For Now

IMNG Medical Media. 2012 Dec 10, N Osterweil
ATLANTA (IMNG) - Ponatinib succeeds when other drugs for chronic myeloid leukemia begin to fail,

by sandy craine (Dec 11)

New video uploaded featuring interview with Dr Jorge Cortes at ASH 2012: ponatinib study data
Category: Uncategorised

Replies: 1

Last updated: 13 December 2012
Alex1981 on 8 December 2012

Category: Uncategorised

Replies: 2

Last updated: 8 December 2012

A bit of help with my PCR results after 3 months
by Alex1981 (Dec 8)

Thanks

by sandy craine (Dec 8)

Welcome Alessandro,
Your PCR result is excellent and has reduced in line with current guidelines for an optimal response= your PH+ cells would be measured at 100% at diagnosis using the IRIS

by Alex1981 (Dec 8)

Hello everyone, my Name is Alessandro I am 31 years of age and live in Nottingham and was i was diagnosed with CML on the 3rd of august this year. I am taking nilotinib and have just had my first
Category: Uncategorised

Replies: 2

Last updated: 8 December 2012
angela on 26 November 2012

Category: Uncategorised

Replies: 4

Last updated: 27 November 2012

Shingles
by angela (Nov 27)

Thanks very much Gerry

by angela (Nov 27)

Thanks very much Sandy

by sandy craine (Nov 27)

Hi Angela,
people who are immuno-compromised -i.e in general those with low white cell counts- should protect against contact with anyone who has shingles or any other infection. although you have

by Gerry (Nov 27)

Hi Angela,

Though you can't get Shingles from another person, you can get Chicken Pox if you've never had it before.

http://www.is-shingles-contagious.net/
Category: Uncategorised

Replies: 4

Last updated: 27 November 2012
Calalily on 24 November 2012

Category: Uncategorised

Replies: 5

Last updated: 12 December 2012

Difficult decision!
by sandy craine (Dec 12)

I have not taken nilotinib so cannot answer your questions re side effects from personal experience. However, there are many who access this forum who would be able to advise/reassure you.
I would

by Calalily (Dec 11)

Thank you so much, Lynn Sandy and Jacqui! It's been a whirlwind few weeks trying to get my head around everything but forums like this are really helping me as you understand what I'm going through

by jacqui from Colchester (Nov 25)

I have just change to Nilotinib (Tasigna) I also feel great on this drug compared to dasatinib and imatinb
I initially started taking it at 9am and 9pm but after a few months I decided that putting

by sandy craine (Nov 25)

Calalily,

Welcome to this forum. In my opinion- whick echo's Lynn's - you have made the right choice given that you were only offered imatinib as the other choice.
There is no doubt that
Category: Uncategorised

Replies: 5

Last updated: 12 December 2012
Audrey on 24 November 2012

Category: Uncategorised

Replies: 5

Last updated: 3 December 2012

worrying failure of imatinib
by Audrey (Dec 3)

Thank you so much to everyone for their comments. Unfortunately, after 8 days on nilotinib, my husband had to contact the hospital about his racing heart and a very bad rash. His body and arms were

by ni2i (Dec 2)

Hi Audrey
Please try not to worry, easier said than done i know. When I was dx in feb 2011 I was given Imatinib I was on them for 12 months and felt rubbish and I could not get my Bcr down any lower

by jacqui from Colchester (Nov 26)

Hi on reading your post a few things reminded me of how I felt. I am 46 and I chose to go on the Spirit II trial (praying I would get dasatinib)and luckily I was given dasatinib. I was so hoping

by teddyb (Nov 26)

Hello, sorry to hear your husband didnt get the desired results, but at least the drugs seemed to have some effect on his CML, so the nilotinib should have a much more powerfull effect since its a "
Category: Uncategorised

Replies: 5

Last updated: 3 December 2012
sandy craine on 20 November 2012

Category: Uncategorised

Replies: 1

Last updated: 21 November 2012

OHSU's cancer programme-Article in Portland Monthly.
by chrissie (Nov 21)

Wow - that is amazing,not just the generosity of the Knights, but the equipment, the building, the whole project and the enthusism and determination for the research displayed by the doctors. So

by sandy craine (Nov 20)

thanks to Pat Elliot for sharing this link. There is a great photo of Brian Druker ;o)

Sandy
How OHSU will use big money, brand new labs, and all-star researchers to launch bold new cancer
Category: Uncategorised

Replies: 1

Last updated: 21 November 2012
David Fitz on 30 November 2012

Category: Uncategorised

Replies: 2

Last updated: 4 December 2012

Travel insurance - thumbs up to Lloyds TSB
by sandy craine (Dec 4)

Hi Des...I absolutely agree with everything you have said. I am also very pleased that you have finally updated us on your trip into the unknown- i.e Stopping therapy.

4 years TFS (treatment

by Des (Dec 4)

there are many insurance companies, (hsbc amongst them) who will cover every scenario except cml. Initially, when diagnosed almost 10 years ago, I was really concerned about the necessity of

by David Fitz (Nov 30)

3 weeks on from DX, I'm starting to get myself organised and tell insurance companies things they need to know, etc.
Having read lots of people's nightmares with travel insurance, I was expecting
Category: Uncategorised

Replies: 2

Last updated: 4 December 2012