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jacqui from Col... on 20 January 2014

Category: Uncategorised

Replies: 2

Last updated: 20 January 2014

Nilotinib and cardiovascular
by gizmos mum (Jan 20)

Hi Jacqui, I hope you are well. I was told the same thing last week by probably the same consultant as you. I will get mine done in 3 months when I see him again. I am not sure what he meant by the

by cdw5000 (Jan 20)

Hi Jacqui,
It has been discussed briefly before:
http://www.cmlsupport.org.uk/node/7852
Although it is a concern, i take the view that without Tasigna I'd be in a pretty awful place. There are

by jacqui from Colchester (Jan 20)

I see my consultant last Monday, he said that there appears to be new information regarding cardiovascular events with regards to Nilotinib. I have been for a chlolestral check and I'm awaiting
Category: Uncategorised

Replies: 2

Last updated: 20 January 2014
chrissie on 16 January 2014

Category: Uncategorised

Replies: 3

Last updated: 20 January 2014

Poor blood samples
by chrissie (Jan 20)

Thank you to Karen and Sandy for your replies. I'll suggest a courier service to my hospital on my next visit,but I guess Royal Mail is cheaper and as there are no problems with my health and

by sandy craine (Jan 17)

Hi Chrissie,
I think Karen makes a good point and you should try to ensure your blood sample is transported as quickly as possible. It is the RNA that is extracted from the cells in the sample and

by karen (Jan 16)

Hi Chrissie

The same thing happened to me a number of times - basically the blood was being posted from my local hospital to Kings and due to the length of time it was taking they could not

by chrissie (Jan 16)

My last 3 blood samples sent to HH from Exeter for PCR testing under WIN and Spirit 2 trials have come back stating either that the blood was too old once they came to test it, or, for the last two
Category: Uncategorised

Replies: 3

Last updated: 20 January 2014
kathy on 16 January 2014

Category: Uncategorised

Replies: 1

Last updated: 17 January 2014

Tumeric
by Gerry (Jan 17)

Turmeric is okay to take with Glivec, but it can cause issues with bruising. I took it for a short period of time and wound up with extra bruises. I am still slightly anaemic, so figure that's why.

by kathy (Jan 16)

Hi all,does anyone know if turmeric capsules are ok to take with glivec,I've started with arthritis and these were recommended.xx
Category: Uncategorised

Replies: 1

Last updated: 17 January 2014
Steven Davies on 13 January 2014

Category: Uncategorised

Replies: 11

Last updated: 23 January 2014

Private health care with Bupa
by David Fitz (Jan 23)

> If your consultant is of the opinion that dasatinib is oral chemotherapy would you be able to persuade him/her to write on your behalf to the Medical Director of the insurance company to ask

by johnw1001 (Jan 23)

Hi David,

Thanks for your response which is interesting from a number of perspectives.

Insurance companies it seems do not specify in detail their polices or approaches towards cancer

by David Fitz (Jan 20)

Thanks John,
I'm already doing most of what you advise. I actually get seen on the NHS for everything except prescribing - all my clinic appointments and blood work is at Barts NHS hospital. So I'm

by David Fitz (Jan 20)

We are looking at that option (tomorrow in cliic, actually) but I do think that if the insurance company takes a bet, and loses, they should pay out. Their T&Cs clearly state that they ought to
Category: Uncategorised

Replies: 11

Last updated: 23 January 2014
tartancaddy on 3 January 2014

Category: Uncategorised

Replies: 2

Last updated: 6 January 2014

gastric problems on imatinib
by sandy craine (Jan 6)

I have never suffered from this but my mother has for years- although she does not have CML. She was told she had diverticulitis, hiatus hernia and that nothing could be done. Later tests confirmed

by Richard42 (Jan 3)

Hi Gary
I don't get abdominal pain but had bad reflux/heartburn when I started imatinib. Always been a bit prone to it but imatinib made it constant and much worse as soon as I started in 2009.
So

by tartancaddy (Jan 3)

Hi Fellow CML'rs
I've been having real problems with reflux and acute abdominal pain on waking up in the morning then dissipates as soon as i'm up and around. Think i might have asked this already
Category: Uncategorised

Replies: 2

Last updated: 6 January 2014
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