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Parklife on 11 November 2016

Category: Treating CML

Replies: 3

Last updated: 11 December 2016

My CML story
by EvaH (Dec 11)

hi both

So sorry to hear about your difficult journeys. In terms of support, I have found taking up Vipassana meditation incredibly helpful in coping with life both before and after the

by Frenchguy (Nov 26)

Hi all,

First, I would like to precise too all new members, that I may not represent the majority of the cml patients who suffer like this but wanted to add comment to John, because his

by David Fitz (Nov 15)

Hi John Paul,
I thought you spoke brilliantly, I know at the top of the talk you said you were nervous but it didn't show one bit. I think you gave a great talk, and pleased you mentioned at the

by Parklife (Nov 11)

Hi all.
I just wanted to signpost my fellow CML'ers to a link of my patient story. I visited Manchester for the CML day, as I was asked to give a talk to an audience of patients, carers and
Category: Treating CML

Replies: 3

Last updated: 11 December 2016
Concetta Carella on 31 October 2016

Category: Treating CML

Replies: 4

Last updated: 7 November 2016

CML Ponatinib
by Concetta Carella (Nov 7)

Thanks Sandy, I'll look on to your advices.
Have a good day:)

by sandy craine (Nov 5)

Hi Concetta,
Sorry that your dad has not yet had a cytogenetic response. It could be that he has primary resistant disease which makes things all the more complex. I know at least one person who did

by Concetta Carella (Nov 2)

Thanks Chrissie for your quick response. he had mutation tests, but there are no mutations indeed. Hope there is some solution.
Cheers,
Concetta

by chrissie (Nov 1)

Hi Concetta
I'm sorry to hear about your father.
My initial response would be to ask if he has had a mutation test.
There is also Bosutinib and Imatinib ( although Imatinib is usually a first
Category: Treating CML

Replies: 4

Last updated: 7 November 2016
jilu on 30 September 2016

Category: Treating CML

Replies: 2

Last updated: 30 September 2016

TIPS for newly diagnosed .
by jilu (Sep 30)

Thank you very much David. Hope this would help me manage the pains.

by David Fitz (Sep 30)

Hi there,
Most patients get aches and pains at the start. It's all a big shock to the body, and the mind. Muscle pain is a pretty common one, and for most people it does go away or at least

by jilu (Sep 30)

Hi ,
today is my 59th day on Imatinib 400mg. from past 2 weeks i started experiencing ankle swelling and pain in legs and my right hand.
when i discussed this with my Doctor he said pains will be
Category: Treating CML

Replies: 2

Last updated: 30 September 2016
sandy craine on 17 September 2016

Category: Treating CML

Replies: 0

Last updated: 17 September 2016

Closer to a Cure?
by sandy craine (Sep 17)

Just a heads up on the article I have posted .... see yellow feature box on this or the Home page. Some of you may be aware that Prof. Holyoake's team in Glasgow have been working for many years
Category: Treating CML

Replies: 0

Last updated: 17 September 2016
Bob_India on 7 September 2016

Category: Treating CML

Replies: 3

Last updated: 12 September 2016

Worried about CML progresing :(
by Bob_India (Sep 12)

Thanks Sandy and David.
My next BCR-ABL is due next month and I will update about them to you.
As far as my Acid Reflux concerned I will try to do what you both have suggested.
I have one

by sandy craine (Sep 10)

Hello Bob,
" The only problem I have is platelets. Also since I come from the North-East part of India my doc says that that region people tend to have a low level of platelets

by David Fitz (Sep 9)

Hi Bob,
Why are you worried about progression? Has your doctor given you reason to worry, or is there something else that makes you concerned?
You have mentioned your platlets a lot, but what is

by Bob_India (Sep 7)

Hi All,
I am Bob from India and following this forum for a long long time. I was detected with CML in December 2008 at the age of 25 and started my Imatinib Glivec from January 2009. So it
Category: Treating CML

Replies: 3

Last updated: 12 September 2016
RodM on 1 September 2016

Category: Treating CML

Replies: 1

Last updated: 1 September 2016

Spirit 2 - Post Trial Availability of Dasatinib
by David Fitz (Sep 1)

That is good news. Coupled with the upcoming appraisal of TA241 (including the use of dasatinib as first line treatment) and TA251 (including use of dasatinib of second line treatment) NICE guidance

by RodM (Sep 1)

I'm about 4.5 years into the trial, on Dasatinib and the availability of Dasatinib on the trial protocol ends in around March 2018, the 5 year anniversary of the last enrolled patient.
It has
Category: Treating CML

Replies: 1

Last updated: 1 September 2016
David Fitz on 4 August 2016

Category: Treating CML

Replies: 0

Last updated: 4 August 2016

Slides from CML Horizons conference 2016
by David Fitz (Aug 4)

Hi all,
Nigel Deekes and myself attended the CML Horizons conference in May this year, which was organised by CML Advocates.
The slides from each talk / presentation are available here.
I have notes
Category: Treating CML

Replies: 0

Last updated: 4 August 2016
V1ck1 on 21 July 2016

Category: Treating CML

Replies: 2

Last updated: 21 July 2016

BMT??
by darley (Jul 21)

* sticks hand up :)

by sandy craine (Jul 21)

Hi Vicky,
Yes, I think there are several of us on this forum. Nowadays it is quite rare to transplant for CML but there are people who either do not respond well to TKI therapy in general, or

by V1ck1 (Jul 21)

Has anyone in here had a bone marrow transplant?
Category: Treating CML

Replies: 2

Last updated: 21 July 2016
sandy craine on 7 July 2016

Category: Treating CML

Replies: 3

Last updated: 9 July 2016

Positive recommendation of bosutinib (Bosulif) from NICE CDF Rapid Reconsideration
by chrissie (Jul 9)

Hi David and Sandy
Thank you very much for all you have done and great news on the NICE decision. It feels safer to have more options on the meds. front. I certainly feel happier to now there

by sandy craine (Jul 8)

Hi Nigel,
I have now fixed the link to the NICE press release- and yes, for the moment it is only available through the CDF until the FAD is implemented which I think is within 90 days? -
see

by nigel (Jul 7)

Hi David, that is very good news, thank you for the update, and all you have done, along with our patient representative in getting the rapid review through, and with a positive outcome.

by sandy craine (Jul 7)

We are very pleased that the outcome of the NICE Cancer Drugs Fund Rapid Reconsideration of bosutinib has resulted in a positive recommendation for its routine use in the NHSE in England for all the
Category: Treating CML

Replies: 3

Last updated: 9 July 2016
MartinZA on 2 July 2016

Category: Treating CML

Replies: 3

Last updated: 3 July 2016

ELN or NCCN?
by MartinZA (Jul 3)

Dear Sandy and David
Thank you so much for your quick response and for your kind and wise words. I have read so many of your replies to other CML patients and your words carry a great deal of

by David Fitz (Jul 2)

Hi Martin,
Sorry for the short message. I don't have time right now for a long one but wanted to reply.
I too take dasatinib. After almost 2 years from diagnosis I was above 1%. Another 18

by sandy craine (Jul 2)

Hi Martin,
I understand why you are disappointed but you should temper your disappointment with the knowledge that this is not an exact science - time of testing and consequent pcr result. PCR is

by MartinZA (Jul 2)

Hi everyone
I have just received my six-month results after being on dasatinib since December 4 2015 and I am hugely disappointed. BCR-ABL is only at 1.4% from 72% at diagnosis and only a small drop
Category: Treating CML

Replies: 3

Last updated: 3 July 2016
Jmlevin on 23 June 2016

Category: Treating CML

Replies: 5

Last updated: 29 June 2016

New Here CML
by chrisk (Jun 29)

Hi Justin,
I am a 60 year old male diagnosed 2 months ago and was started on Nilotinib shortly after the diagnosis. I was only on Nilotinib for 2 weeks (sample pack) while the insurance companies

by chrissie (Jun 25)

Hi Justin
I have been on Gleevec since Sept 2009 and doing well on it. Yes, there were some side effects at first - mainly puffy eyes and leg cramps but these subsided within a few months. I was on

by Ben K (Jun 25)

Hi Justin, I was diagnosed 4 months ago and have been on Tasigna (Nilotinib) for just 2 months. I have had a very rapid response to the medication with my PCR at 4.8 after 30 days and I have

by sandy craine (Jun 24)

Hi Justin and welcome.
I am sorry that you have been diagnosed with CML so young, and therefore have to deal with all the issues that come alongside a diagnosis of a serious disease - However, the
Category: Treating CML

Replies: 5

Last updated: 29 June 2016
MartinZA on 19 April 2016

Category: Treating CML

Replies: 4

Last updated: 6 May 2016

Some questions on responses and side effects
by MartinZA (May 6)

Hi David

Thank you so much for the kind words and support. It is as you say, and we are so fortunate to have this site to help us - just knowing that there are many more of us "out

by David Fitz (Apr 20)

Hi Martin,
Something you said in your reply struck a chord with me... "I am sure that as time goes on I will think much less about CML".
You're absolutely right in that it is very much

by MartinZA (Apr 20)

Hi Nigel
Thank you so much for taking the time and trouble to write me such a comprehensive reply. Before seeing your message, I had actually edited my thread as I thought it was too long,

by nigel (Apr 19)

Hi Martin

Welcome to the wide and varied world of CML, I mean this in the sense that there seem to be so many pieces of advice, some of which seem to conflict and many of which do not reflect
Category: Treating CML

Replies: 4

Last updated: 6 May 2016
2waterdogs on 29 April 2016

Category: Treating CML

Replies: 1

Last updated: 30 April 2016

Tasigna
by sandy craine (Apr 30)

Hi Pat and welcome to this forum. This is really early days for you.... only day 4 on therapy, so it is not surprising that you feel you are still in denial about the whole thing. I think I can say

by 2waterdogs (Apr 29)

Hi!
Brand new here...Just diagnosed 3 wks ago. I'm just starting Tasigna (4 days ago) and I'm wondering how long till we see results that (hopefully) show it is working.
Category: Treating CML

Replies: 1

Last updated: 30 April 2016
cablock69 on 9 April 2016

Category: Treating CML

Replies: 1

Last updated: 9 April 2016

Concerned family member
by sandy craine (Apr 9)

Hi,
I'm sorry to hear your cousin is suffering form what sounds like side effects of therapy. As here doctor has told her she is in remission it is unlikely that it is CML that is causing

by cablock69 (Apr 9)

My cousin has CML. Has been on Sprycel. Blood tests show she is in remission. However, she continues to suffer with excessive fatigue, back spasms, dizziness, inability to fall /
Category: Treating CML

Replies: 1

Last updated: 9 April 2016
rsgiles on 2 March 2016

Category: Treating CML

Replies: 1

Last updated: 2 March 2016

Question about Generic Gleevec
by David Fitz (Mar 2)

Hi,
I think we are certainly going to see insurance firms insist on generic imatinib from now on when imatinib is prescribed. It's clearly a decent cost saving for them.
In theory, there ought

by rsgiles (Mar 2)

I just tried to refill my prescription for Gleevec but my insurance company wants to give me the generic version. Does anyone have any experience with the generic version, is it as good as Gleevec.
Category: Treating CML

Replies: 1

Last updated: 2 March 2016
johnw1001 on 31 January 2016

Category: Treating CML

Replies: 3

Last updated: 8 February 2016

Generic imatinib again -some updates
by nigel (Feb 8)

Hi John
Thanks for a very interesting and detailed post and synopsis with regard to Generic Imatinib. I likewise shared your concerns with regard to the potential change that is on the way. However

by johnw1001 (Feb 5)

Hi Moirah,
Thanks for reading my posting and replying .Welcome to the CML/Glivec club -yes it certainly keeps us alive .Trust you are doing well in your first year which can be quite challenging.I

by Moirah (Feb 3)

Thank you for posting this. This is something im very worried about i was diagnosed july last year and doing well last pcr 6 months 0.067%
Can we really ask for monthly pcrs if changed to the

by johnw1001 (Jan 31)

Hi All,
There have been a few threads on this before and this included a posting from myself so no apologies for another separate thread as this for many of us will probably involve a switch from
Category: Treating CML

Replies: 3

Last updated: 8 February 2016
nigel on 28 January 2016

Category: Treating CML

Replies: 1

Last updated: 29 January 2016

Dr. Michael Mauro speaks after the ASH 2015 conference about CML
by sandy craine (Jan 29)

Thanks for the link Nigel.... I tried to put this on our video section but Patient Power will not give permission for that- which is a shame as they used to share freely. But at least we can watch

by nigel (Jan 28)

Dr. Michael Mauro speaks after the ASH 2015 conference about CML, where we are, and where we are going, together with some brief detail of AML 001 a "4th Generation" inhibitor.
Category: Treating CML

Replies: 1

Last updated: 29 January 2016
cdaugh22 on 20 January 2016

Category: Treating CML

Replies: 7

Last updated: 27 January 2016

Looking for a post-transplant patient to ease concerns
by darley (Jan 27)

I try to not worry about what I can't control and effect. I also try to stay positive and hopeful. I've done that in a variety of ways. It helps because my partner in life

by cdaugh22 (Jan 27)

Darley,
I'm so sorry you went through all of that to get where you are today. It sounds like you are a very positive person though and that is why you have made it through that incredibly

by cdaugh22 (Jan 27)

Sandy,
He did have mutation testing done and it was negative. His platelets got as low as 20. He is suppose to go to the Mayo Clinic hopefully sometime next month so we can see the CML specialist

by darley (Jan 23)

How old were you at the time of transplant? What phase were you diagnosed in? Did you fail previous TKIs prior to transplant? How have you been doing since the transplant? Sorry for all the ?????
Category: Treating CML

Replies: 7

Last updated: 27 January 2016
johnw1001 on 8 December 2015

Category: Treating CML

Replies: 1

Last updated: 8 December 2015

A new TKI on the horizon-Radotinib approved by Korean FDA
by sandy craine (Dec 8)

Hi John,
thanks for this post.... there is link to ASH abstract re: a phase 3 comparative trial here:
476 Efficacy and Safety of Radotinib Compared with Imatinib in Newly Diagnosed Chronic

by johnw1001 (Dec 8)

Hi All,
Have just been looking at what papers on CML are being presented at the ASH Conference in Orlando this week and note the topical issue of the potential for a new TKI Radotinib (IY5511HCL) to
Category: Treating CML

Replies: 1

Last updated: 8 December 2015
Ivan on 1 December 2015

Category: Treating CML

Replies: 2

Last updated: 1 December 2015

Greetings
by Ivan (Dec 1)

Thank you, for the welcome, Sandy. I've already read quite a lot, but I still have to learn much more and actually experience it first hand.
Ivan

by sandy craine (Dec 1)

Hi Ivan,
Welcome to this forum and website. I suggest you do not try to learn too much too fast, so best to visit our CML facts page to start with:
http://www.cmlsupport.org.uk/section/10-facts-

by Ivan (Dec 1)

Hello everyone,
My name is Ivan and I'm 30 years old and I've been diagnosed with CML on Oct. 26. I just went for a routine check up and they found, that my WBC was 52000. I'm waiting to
Category: Treating CML

Replies: 2

Last updated: 1 December 2015