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karen on 31 December 2013

Category: Uncategorised

Replies: 3

Last updated: 2 January 2014

Happy New Year
by sandy craine (Jan 2)

In the world of CML, that we as patients must (reluctantly) inhabit, it should be said that we have been fortunate over the last decade or so.
I have no doubt that we shall continue to see the

by Steven Davies (Dec 31)

Carol and I would like to wish you all a healthy and happy 2014.

Best wishes

Carol and Steven

by David Fitz (Dec 31)

Although 2013 was not particularly happy for me, and many of us here I hope 2014 will be kinder to you all!
Happy New Year.
David.

by karen (Dec 31)

I hope everyone has a very Happy and Healthy New Year and a wonderful 2014.

Karen
Category: Uncategorised

Replies: 3

Last updated: 2 January 2014
Basil from RSA on 7 May 2014

Category: Uncategorised

Replies: 6

Last updated: 13 May 2014

5 YEARS AND COUNTING
by Basil from RSA (May 13)

Holding thumbs for you Gerry.

by Gerry (May 12)

I'm just waiting on this lot of results - if it is another negative, I'll join the FB page as it will be officially six months. :-)

by Basil from RSA (May 8)

Hi Gerry,

Well done on your achievement.

Why not also join our Facebook group of CML patients in TFR ( Treatment Free Remission)?

by Basil from RSA (May 8)

Thanks for the kind words Sandy. I still feel very loyal to this group as it was my first contact after being DX'ed in 2003. Wow I can't believe that time has passed me by so quickly.

Keep up
Category: Uncategorised

Replies: 6

Last updated: 13 May 2014
sandy craine on 30 December 2013

Category: Uncategorised

Replies: 11

Last updated: 7 February 2014

Professor John Goldman: A Book of Condolences
by krishnak (Feb 7)

It is with profound sadness that I note the passing of John Goldman. He was an outstanding teacher and clinician. I remember him as an intellectual power house, well respected and who taught with a

by CheryAnnes (Jan 6)

The CML Society of Canada was very saddened to hear about the recent passing of Professor John Goldman. We had the pleasure of meeting with him on many occasions. It was especially important for

by sandy craine (Jan 6)

John was my doctor when I was diagnosed with CML in 1998 and helped me enormously during what was for me and my family a terrible time. Because I was able to discuss my diagnosis so freely with

by David Ryner (Jan 6)

John Goldman made CML his life's work. For that gift we must be eternally grateful. 'We' are not just CML patients, past and present, who have benefited from his observant, elegant and ever curious
Category: Uncategorised

Replies: 11

Last updated: 7 February 2014
Parklife on 27 December 2013

Category: Uncategorised

Replies: 6

Last updated: 20 March 2014

advice please
by darley (Mar 20)

Of course everyone is going to be different and I'm sorry to hear of the difficulties you're having.
I have never ever been on a support group before or even if it comes to that talked to many

by fehr (Mar 10)

This may be a bit late, but Prof. David Barrett at Southampton is an expert on this. He performed surgery on both my sister-in law's knees for patellofemoral arthritis and resurfaced my wife's

by CanMakeLightofit (Feb 27)

Dear John
I'm sorry to hear of your problems with your joints. That must be very tough.
How are you doing now?
If you think it might be an adverse reaction to Imatinib, you can report this for

by Parklife (Dec 30)

Hi Sarah/Chris
Thanks for getting back.
Sarah, its very strange, but at least I'm not the only one. Did you get an MRI? I was blown away when I had the results to mine, so much so I have asked for a
Category: Uncategorised

Replies: 6

Last updated: 20 March 2014
nigel on 24 December 2013

Category: Uncategorised

Replies: 3

Last updated: 30 December 2013

Professor John M Goldman Past away this afternoon
by sandy craine (Dec 30)

I am really shocked to read this news. Please see my post at the top of the page. Prof. Apperley is compiling a book of condolences and has invited you to send your messages so they can be included

by sunilparekh (Dec 26)

Respected Sir,

We were shocked to hear about the sudden loss of our eminent Mentor, Guardian,& Loving Caregiver to thousands of patients throughout the world. Sir John, in addition to all

by Steven Davies (Dec 24)

Carol and I cannot believe this very sad news. one of the worlds greatest doctors. He was down to earth, humble and truly a remarkable man. We first met him 9 years ago at our first conference in

by nigel (Dec 24)

Sad news Prof. John Goldman passed away this afternoon in London, at the age of 75. He was a great teacher and mentor for many in the CML community.
This is tragic sad news, he was a real leader in
Category: Uncategorised

Replies: 3

Last updated: 30 December 2013
Steven Davies on 22 December 2013

Category: Uncategorised

Replies: 3

Last updated: 24 December 2013

Seasons Greetings to one and all.
by sandy craine (Dec 24)

Merry Xmas and a peaceful New Year to all of you.
This article is a reminder of how far we have all come over the last decade or so.

We send our special thanks and all our good wishes to Dr

by Dennis (Dec 23)

To everyone.

by chrissie (Dec 23)

and the same to you both and to everyone whose lives have been touched by CML,
Chrissie

by Steven Davies (Dec 22)

Carol and I would like to send seasons greetings to everyone and wishing you all a happy and healthy 2014.
Category: Uncategorised

Replies: 3

Last updated: 24 December 2013
cousineg on 19 December 2013

Category: Uncategorised

Replies: 1

Last updated: 20 December 2013

Dr. Janet Rowley, whose genetic research led to cancer treatment breakthroughs, dies at 88
by sandy craine (Dec 20)

"It is with immense sadness that we learn that Janet Rowley passed away yesterday due to complications from Ovarian Cancer. Janet Rowley discovered that the Philadelphia Chromosome, the harbinger of

by cousineg (Dec 19)

See http://www.suntimes.com/news/obituaries/24460782-418/dr-janet-rowley-who...
See also http://www.cmleukemia.com/dr-janet-d-rowley.html
Category: Uncategorised

Replies: 1

Last updated: 20 December 2013
sandy craine on 20 December 2013

Category: Uncategorised

Replies: 1

Last updated: 27 January 2014

Initial request for Survey participants: Effects of expressing views, opinions and emotions in internet forums on wellbeing.
by sandy craine (Jan 27)

The researchers involved in this study have asked for more volunteers to take part in their survey - there have been 240 reads of this post but only 14 responders. The survey does not take much

by sandy craine (Dec 20)

You are invited to take part in a study exploring how expressing views, opinions and emotions in online forums can affect wellbeing? This study is being conducted by researchers at Sheffield Hallam
Category: Uncategorised

Replies: 1

Last updated: 27 January 2014
sandy craine on 16 December 2013

Category: Uncategorised

Replies: 2

Last updated: 1 February 2015

DESTINY trial is now OPEN!
by darley (Feb 1)

I'm on the trial.
Got to say though that whoever decided to call it "Destiny" needs a slap round the back of the head!
It makes me wonder at the thinking and mentality and mindset.
Dumb!

by chrissie (Nov 15)

DESTINY is now open in Exeter. I started on the lower IM dose last Monday- what joy as the tablets are so much smaller and therefore easier to swallow.
Best to all

Chrissie

by sandy craine (Dec 16)

At long last, the DESTINY study is now officially open, as of Friday. Liverpool Royal University Hospital (Prof. Richard Clark is the lead investigator of this UK study) seeing their first patients
Category: Uncategorised

Replies: 2

Last updated: 1 February 2015
Richard on 16 December 2013

Category: Uncategorised

Replies: 12

Last updated: 19 March 2014

Healthcare at Home
by darley (Mar 19)

They totally messed up my last prescription. They left it hanging around their office for days despite the fact they'd been told I was about out of supply.
Then when chased for it they discovered

by Richard (Dec 20)

My "missing" imatinib, delivered to wrong address, turned up today. I phoned HAH, and they have asked me to keep them until they collect them.
The main problem appears to be that, although the

by Pennie (Dec 19)

Evolution homecare company was adamant they had delivered my drugs to me at a time when there was nobody in the house all day!
Next day I was expecting the delivery and of course nothing arrived.

by Steven Davies (Dec 18)

I have just had a similar problem with EVOLUTION from the Hammersmith.

They took nearly 2 weeks to deliver and then when they did arrive I had 2 more deliveries on the next 2 days.

I
Category: Uncategorised

Replies: 12

Last updated: 19 March 2014
lloyd152 on 16 December 2013

Category: Uncategorised

Replies: 4

Last updated: 30 December 2013

A question for the ladies
by lloyd152 (Dec 30)

Thanks for your reply. It's really interesting that these problems occur as a result of treatment and nice to know I'm not alone! The coil is seeming like the best option for me too and hopefully my

by lloyd152 (Dec 30)

Hi Sandy,
Thank you so much for your comments.
It is good to know that others have experienced and thought about this issue and that I am not an isolated case. I have requested a referral to

by ece2108 (Dec 28)

Hello, I found last august out that I had CML and started with nilotinib. I'm a 38 old women and as you, I had a very heavy menstruation and also very irregular. I also took some iron supplements

by sandy craine (Dec 18)

Hi Clare,
Your story is not unusual I fear. I do know that as least one expert CML clinician (Prof. Jane Applerley of Imperial College Hammersmith Hospital) is very aware that the adverse menstrual
Category: Uncategorised

Replies: 4

Last updated: 30 December 2013
Olivia on 12 December 2013

Category: Uncategorised

Replies: 1

Last updated: 15 December 2013

CML in novels
by karen (Dec 15)

I remember reading that and smiling. I think with most novels they tend to just put leukaemia rather than pick anything specific as that way they don't have to research too much!
K

by Olivia (Dec 12)

Has anyone come across a reference to CML in a novel? I am reading "Port Mortuary" by Patricia Cornwell, and on p 307 the heroine, Kay Scarpetta, remembers her father's death from CML, which
Category: Uncategorised

Replies: 1

Last updated: 15 December 2013
ece2108 on 12 December 2013

Category: Uncategorised

Replies: 2

Last updated: 15 December 2013

After 3 month on TASIGNA
by karen (Dec 15)

Just wanted to say that is an excellent result and you should be really pleased. Hopefully it will continue that way and you may (in the future) get to stop taking it all together
K

by sandy craine (Dec 12)

Thanks so much for updating us all about your experience. Your story will certainly help any newly diagnosed patient have confidence in this kind of therapy.
Your response to nilotinib is certainly

by ece2108 (Dec 12)

Hello, I wrote 4 months ago about my new life with CML on this forum (thank you for your support). I was diagnosed in mid-august this year to have CML, a sickness I never heard of. 38 years old
Category: Uncategorised

Replies: 2

Last updated: 15 December 2013
HAYLEY88 on 9 December 2013

Category: Uncategorised

Replies: 2

Last updated: 10 December 2013

Co dydramol painkiller
by HAYLEY88 (Dec 10)

Sandy, Thank-you so much for the advise.

Regards

Hayley

by sandy craine (Dec 10)

Hi Hayley,

so sorry to hear your dad had such a potentially serious accident! Regarding you worries about the painkillers and potential contra-indication with his therapy. Ibuprofen is contra-

by HAYLEY88 (Dec 9)

Hi,
Can anybody advise me please?

My Dad was diagnosed in Nov 2010 and switched from imatinib to nilotinib which seems to be doing its job.

However he is still not at the target of 0.001
Category: Uncategorised

Replies: 2

Last updated: 10 December 2013
David Fitz on 5 December 2013

Category: Uncategorised

Replies: 2

Last updated: 7 December 2013

Slides from the patient day in Oxford
by David Fitz (Dec 7)

Thanks Sandy - much appreciated.

by sandy craine (Dec 5)

Hi David,

Prof. Clark said he would upload the slides as soon as possible. I think he is waiting until he has all the information regarding the DESTINY trial (i.e that it is open for

by David Fitz (Dec 5)

At the patient day in Oxford, I think I recall a mention that the slides would be made available to participants - but I haven't received an email or anything yet with details.
Had anyone received
Category: Uncategorised

Replies: 2

Last updated: 7 December 2013
sandy craine on 4 December 2013

Category: Uncategorised

Replies: 6

Last updated: 16 January 2014

Surviving CML
by marsy (Jan 16)

Hi Sandy,

I've not logged in for a while and just catching up on the posts. Many congratulations on hitting the 15 year mark. It's a real milestone and I'm sure you raised the odd glass over

by Dennis (Dec 16)

Really happy for you.
Don't often post these days, but I still read quite regularly. Thank you for all the hard work that you've put in over the years. This site helps people understand what the

by cdw5000 (Dec 15)

Sandy,
Congratulations on making 15 years and everything you have achieved both personally and with the wider campaigning and awareness for CML. 15 years is a tremendous achievement and here's to

by Olivia (Dec 5)

I would just like to add my congratulations and thanks for the wonderful work you do on this site, it has helped so many of us to come to terms with our common experience. Keep up the good work,
Category: Uncategorised

Replies: 6

Last updated: 16 January 2014
Gst on 29 November 2013

Category: Uncategorised

Replies: 3

Last updated: 5 December 2013

Last option
by Gst (Dec 5)

Thanks for you detailed replies. I will keep you updated with the test results of Dasatinib.
I feel a bit better I have been able to read more experiences from bloggers on this site.
Thanks
G

by karen (Dec 3)

Hello
The good news is you are being treated at a centre of excellence and the care you are getting will be second to none but I would push to try all the available drugs prior to going for a

by sandy craine (Dec 2)

Hello G,
There are a few points I would like to make.
According to the 2013 update of ELNet recommendations for optimal response to TKI therapy, your initial response to imatinib would have shown

by Gst (Nov 29)

Hello everyone
I just want to start by saying thank-you for this site and for everyone who posts as it has helped me since being diagnosed in Jan 2013. I am 35 years old and it came as shock to me
Category: Uncategorised

Replies: 3

Last updated: 5 December 2013
sandy craine on 19 November 2013

Category: Uncategorised

Replies: 2

Last updated: 22 November 2013

Safety and efficacy of imatinib cessation for CML patients with stable undetectable MRD: results from the TWISTER Study
by sandy craine (Nov 22)

Tony you can contact me on cmlsupportgroup@gmail.com
Sandy

by tony morgan (Nov 21)

Hi sandy,

Had your email address an gone and lost it.could you please email on Mr_Fireworks@hotmail.com thanks tony.

by sandy craine (Nov 19)

See our home page for a link to this article in Blood (ASH Journal) including the related article called TWIST it but don’t spin it! by Professor Jane Apperley of Imperial College, Hammersmith
Category: Uncategorised

Replies: 2

Last updated: 22 November 2013
kp on 17 November 2013

Category: Uncategorised

Replies: 10

Last updated: 17 March 2014

arthritis
by sandy craine (Mar 17)

Polyphenolics isolated from virgin coconut oil inhibits adjuvant induced arthritis in rats through antioxidant and anti-inflammatory action.
http://www.ncbi.nlm.nih.gov/pubmed/24613207?dopt=Abstract

by CanMakeLightofit (Mar 6)

Just to clarify things - what Stuart and Steve are describing is rheumatoid arthritis (RA). This has an autoimmune element in it (though that isn't the whole story) and is treated with drugs like

by Luisa (Feb 26)

I have been on Bosutinib for 4 months now and I am experiencing pain and stiffness at the base of my thumbs (both hands) and also at the base of my big toes,sometimes with a burning sensation. The

by RodM (Feb 26)

Hi - since starting Dasatinib, I've been having problems with my thumb's basal joint - which is the main joint where it joins the wrist. It was at a point where everything I did all day long was
Category: Uncategorised

Replies: 10

Last updated: 17 March 2014
Sarah Bo on 17 November 2013

Category: Uncategorised

Replies: 3

Last updated: 22 November 2013

Hammersmith Results
by sandy craine (Nov 22)

Hi Sarah... you are inline with an optimal response so you are doing well and within the less than 3 month ELNet recommendation..... i.e less that <10% BCR-ABL or less than <35% PH+ by

by Sarah Bo (Nov 17)

Hi Sandy,

Thanks for the response, I wasn't sure if I had misunderstood.

So if that is the case, my 30% results at 3 months may have actually been 9% and I was worrying about nothing

by sandy craine (Nov 17)

Hi Sarah, you are right.
I think Prof. Apperley mentioned that a result from Hammersmith is not reported on the IS, so you need to apply a conversion rate which for HH is 0.3(?).... I hope my memory

by Sarah Bo (Nov 17)

Hi,
Not sure if anybody can help with this question? At the CML patient day in Oxford this week Professor Jane Apperley briefly mentioned 'conversion rates' for PCR results received from the
Category: Uncategorised

Replies: 3

Last updated: 22 November 2013