You are here

Forum

Rogue Wave Fan on 30 January 2014

Category: Uncategorised

Replies: 4

Last updated: 31 January 2014

what happens when you stop treatment all together
by sandy craine (Jan 31)

Please try to answer the questions Chris has asked, plus another from me please...
What exactly are the symptoms that make you say your body cannot tolerate your current therapy -dasatinib/Sprycel?

by cdw5000 (Jan 30)

Hello,
I'm sorry you feel bad enough to consider stopping TKI therapy - CML is quite a treatable disease and there should be some options open to you if your current TKI/dosage is not a good fit for

by Rogue Wave Fan (Jan 30)

On Sprycil. Was dianosed in April 2013.

by sandy craine (Jan 30)

Your questions have several possible answers depending on what stage your disease was at when you were first diagnosed, what your clinical response to therapy has been/is and what therapy you are
Category: Uncategorised

Replies: 4

Last updated: 31 January 2014
sandy craine on 31 January 2014

Category: Uncategorised

Replies: 2

Last updated: 1 February 2014

ELNet Recommendations 2013
by sandy craine (Feb 1)

That's really good news Nigel. Congratulations!

Sandy

by nigel (Jan 31)

Thanks for this Sandy. Ps 0.09% yesterday 2 and a bit years on Imatinib, really pleased, slowly but surely...
Nigel

by sandy craine (Jan 31)

I have just posted the updated ELNet recommendations on the home page. It is a very good overview of where we are today and is well worth a read.
I was particularly struck by a paragraph at the end
Category: Uncategorised

Replies: 2

Last updated: 1 February 2014
Neil1 on 24 January 2014

Category: Uncategorised

Replies: 5

Last updated: 4 February 2014

PCR RESULTS
by Neil1 (Feb 4)

Sorry for the delay in answering back, a very busy time working shifts at work. The doctor says that I should not worry about the result and I have already sent another sample for testing which

by sandy craine (Jan 26)

Chris has given you good advice. I would say that you need to ask your doctor if he/she is reporting your PCR results according to the IS(international scale)...depending on where you're are being

by cdw5000 (Jan 25)

Hello Neil,
I'll hopefully try and answer some of your questions:
your response to Gleevec appeared to be sub-optimal and the upward tick was a cause for review as you effectively never achieved

by Neil1 (Jan 25)

I can find out for you but not until my next appointment, I don't have the numbers to hand but know the WBC was in the thousands.
On Glivec the lowest I ever got was 1.2% after approx 18 months, it
Category: Uncategorised

Replies: 5

Last updated: 4 February 2014
sandy craine on 27 January 2014

Category: Uncategorised

Replies: 3

Last updated: 5 February 2014

Last call for volunteers to take the Health and Wellbeing survey- closes 7th Feb
by David Fitz (Feb 5)

Thanks Sandy - I've completed the survey now!
David.

by sandy craine (Feb 5)

Hi David,

I contacted Brett and he said that he will reopen the survey until Friday... so if you want to take part and help with this research you have until Friday to do so.
Sandy

by David Fitz (Feb 3)

It just says "Unfortunately this survey has been closed. Thank you for your time." when I follow that link.
David.

by sandy craine (Jan 27)

Wellbeing has a strong correlation with overall health (Okun, Stock, Haring and Witten, 1984). Internet forums have been associated with both positive and negative effects on individuals with
Category: Uncategorised

Replies: 3

Last updated: 5 February 2014
Thomaskk on 23 January 2014

Category: Uncategorised

Replies: 3

Last updated: 25 January 2014

WBC and CML load
by Thomaskk (Jan 25)

I spoke to my doctor about the WBC issue and he has told me that he considers the bcr / abl load at the time of diagnose is the most critical factor. He also mentioned the importance of HB level

by sandy craine (Jan 24)

Low WBC in peripheral blood does not necessarily mean a low leukaemic load. At diagnosis I had a wbc of just 17- hardly higher than normal levels. However, my platelets were pretty high and rising,

by David Fitz (Jan 23)

I don't know about any studies of this, but anecdotally I can only add that I started out with just under 200x10^9/L, BCR-Abl ratio of 320% and 14 months later I am yet to hit MMR (0.4% on the chart

by Thomaskk (Jan 23)

Hi
I was going through many earlier posting , and I have noticed that patients with lower WBC load at the time of diagnose , achieves key treatment miles stones faster than others having higher WBC
Category: Uncategorised

Replies: 3

Last updated: 25 January 2014
Thomaskk on 4 February 2014

Category: Uncategorised

Replies: 3

Last updated: 12 February 2014

Vitamin C & Omega 3
by sandy craine (Feb 12)

http://www.lef.org/news/LefDailyNews.htm?NewsID=21940&Section=VITAMINS&u...
Of course to get enough Vit C for it to have a sufficient effect on cancer cells you need to take high doses pref

by Gerry (Feb 6)

Hi Thomas,

I have taken vit C and fish oil whilst taking Gleevec. There was no impact on the Gleevec as I achieved PRCU. I took the vit C in the morning with an iron tablet plus the Gleevec.

by sandy craine (Feb 5)

Hi Thomas,

I have taken vit C at quite high levels for the last 15 years. I also take a number of other vitamins and minerals. There is no evidence that they interfere with TKI therapy in any

by Thomaskk (Feb 4)

Hi
Has anyone taking Vitamin C , Omega 3 tabs along with Gleevec ? Are they good to keep our immunity level high ?
Thomas
Category: Uncategorised

Replies: 3

Last updated: 12 February 2014
Thomaskk on 21 January 2014

Category: Uncategorised

Replies: 5

Last updated: 22 January 2014

Tensed , Confused , What is next ?
by Thomaskk (Jan 22)

Hi
Thank you very much for your posting. It is so encouraging . I did sleep well yesterday. Your comments are in line with my outspoken doctor explained to me . I spoke to him yesterday after

by sandy craine (Jan 21)

Hello Thomas and welcome,
It is understandable that you feel the way you do... it is a common experience at diagnosis. However, given your test results it looks to me like you will be one of the

by Richard42 (Jan 21)

Thomas
I never say never, and I remain a CML patient (and will be forever as far as I know) but I suspect I won't die of CML. I believe that to be true of the vast majority of CML patients nowadays

by Thomaskk (Jan 21)

Hi Richard
Thank you for your comments. I am feeling better already. My doctor does not believe in PH-ve bcr / abl positive CML . He says it is because of poor sample. ( He admits that there is PH
Category: Uncategorised

Replies: 5

Last updated: 22 January 2014
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