You are here

Forum

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
lucky4lock on 30 November 2012

Category: Uncategorised

Replies: 2

Last updated: 13 December 2012

MMR in 3 Months!!!!!!!!!!!
by lucky4lock (Dec 13)

Thanks Sandy.It is Clear now.

by sandy craine (Dec 3)

Hi Lucky,
Well you should be very pleased indeed. Your brother has responded extremely well to dasatinib (Sprycel) and from the figures you give above calculated on the IS, his disease has reduced

by lucky4lock (Nov 30)

Hi all,
My brother of age 29 is dx with CML with WBC 216, 4 months back.Firstly on Hydrox for 2 Weeks, then onSprycel 100 mg.
We went for 3 months follow up blood test.The below are the BCR/ABL
Category: Uncategorised

Replies: 2

Last updated: 13 December 2012
clair merritt on 6 December 2012

Category: Uncategorised

Replies: 1

Last updated: 6 December 2012

Advice needed: daughter stopped taking imatinib
by sandy craine (Dec 6)

Dear Clair, I am so sorry you have to watch your daughter suffer so. She is not alone in not wanting to take her medication- and being 15 I am sure she must to so fed up with the whole thing and

by clair merritt (Dec 6)

Hi everyone, I haven't posted on here in a while but really need some advice. My daughter is 15 and was diagnosed 18 months ago she also has cystic fibrosis. She has been going through a tough time
Category: Uncategorised

Replies: 1

Last updated: 6 December 2012
tartancaddy on 5 December 2012

Category: Uncategorised

Replies: 2

Last updated: 6 December 2012

abdominal pain
by tartancaddy (Dec 6)

Hi Sandy
Thanks for your reply. Will speak to my Consultant.
Regards
Gary

by sandy craine (Dec 6)

Gary,

it sounds like you may well have a urinary infection- given you also are having pain in the Kidney area. If your wee is dark yellow in colour (rather than a pale straw colour) then you

by tartancaddy (Dec 5)

Hi Guys
I've been on 400mg of Imatinib for 2 1/2 years but have recently been experiencing abdominal pain when i wake up. This seems to pass when i get up and walk around but is really painful and
Category: Uncategorised

Replies: 2

Last updated: 6 December 2012
Barbs on 3 December 2012

Category: Uncategorised

Replies: 3

Last updated: 5 December 2012

French STIM 2 trial
by sandy craine (Dec 5)

I am copying a portion of Des' post below on the Travel Ins thread as it also contains an update on her experience with stopping therapy.....
From Des:

".....For those newbies, just diagnosed

by cousineg (Dec 4)

Thank you Barbara for your posting. I thought of you when I read these new articles about STIM (STop IMatinib)

Model-based decision rules reduce the risk of molecular relapse

by sandy craine (Dec 3)

Dear Barbara, thank you for posting this very positive news on this forum. I am sure it will give many of us hope for a future of TFS (treatment free survival) in spite of low levels of molecular

by Barbs (Dec 3)

Some of you may remember that I stopped taking my Glivec as part of the French STIM 2 trial in May 2011.

I am pleased I get to stay off Glivec for at least 2 more months; latest PCR 0.006 (
Category: Uncategorised

Replies: 3

Last updated: 5 December 2012
cousineg on 7 December 2012

Category: Uncategorised

Replies: 1

Last updated: 7 December 2012

Preliminary results of a phase II clinical trial to treat leukemia with a WT1 DNA vaccine
by cdw5000 (Dec 7)

While I am always encouraged by news of 2G/3G TKIs, it's this technology and Potential treatment that really excites me. If this works at full scale it could be a game changer for so many CML

by cousineg (Dec 7)

See this new article Inovio Pharmaceuticals Announces Positive Interim Results in Phase II Leukemia Trial

See also CML Vaccine
Category: Uncategorised

Replies: 1

Last updated: 7 December 2012
sandy craine on 8 December 2012

Category: Uncategorised

Replies: 1

Last updated: 9 December 2012

Updates from ASH
by sandy craine (Dec 9)

Live from the ASH Press conference room!

Dr. Cortes just presented saying that difficult to treat patients such as patients who have not achieved responses with two or three prior therapies

by sandy craine (Dec 8)

Quick update from Cheryl-Anne Simoneau of The CML Society of Canada who is attending ASH in Atlanta GA, alongside other CML patient Advocates.
"From ASH: Hitting the ground running! But three key
Category: Uncategorised

Replies: 1

Last updated: 9 December 2012
Anonymous (not verified) on 19 November 2012

Category: Uncategorised

Replies: 3

Last updated: 20 November 2012

re pleural effusion from Sandy & jacqui
by Anonymous (Nov 20)

Hi Jacqui:

I am having an echocardiogram tomorrow and seeing my GP in a week;

also having another blood test. If my breathing gets worse, I will contact

my consultant. My GP is

by jacqui from Colchester (Nov 20)

Just to give you more information
I Intially went to the doctors as I was finding it hard to breathe. They sent me to the hospital for an xray. I had an appointment with my consultant by

by sandy craine (Nov 20)

Dear Linda,
From what I can have gathered over the weekend and reviewing the side effect profile for dasatinib, should have interrupted your therapy until the PE was fully resolved.

Maybe you

by Anonymous (Nov 19)

Thank you both for your replys.

I did try to reply to your individual messages but don't think it worked.

I am still on Dastinib and my GP has put me back on water tablets as

I
Category: Uncategorised

Replies: 3

Last updated: 20 November 2012