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Justine on 11 May 2017

Category: Treating CML

Replies: 5

Last updated: 12 May 2017

Newly diagnosed
by Justine (May 12)

Thank you, David. I just met a lady who "tolerated" Gleevec for three years but was miserable. She switched to a different one and had a much better experience after that. It is good to

by Justine (May 12)

And good luck to you! And to all of us! :-)

by Justine (May 12)

Thanks, I appreciate your words. Justine

by David Fitz (May 11)

Hi Justine,
As already mentioned, these are not uncommon side effects. For many people, they pass in their own time. For others, they don't.
I'm one of the others. Imatinib (Gleevec) didn
Category: Treating CML

Replies: 5

Last updated: 12 May 2017
David Fitz on 10 May 2017

Category: Treating CML

Replies: 0

Last updated: 10 May 2017

New Generic Imatinib Leaflet
by David Fitz (May 10)

CML Support have recently published a new leaflet on the topic of generic imatinib.
We will distribute this at patient CML clinics, so reaching a much wider audience of patients than are just
Category: Treating CML

Replies: 0

Last updated: 10 May 2017
Greetje on 21 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

reducing dosage within a year after diagnose
by cmljax (Apr 23)

See my response to the post titled
Have you reduced your dosage due to deep response? Share your experience

by nigel (Apr 21)

First of all well done on some great results and the speed they have come, really good. A couple of points I would make; first of all it is a little early for does reduction in my view as yet,

by Greetje (Apr 21)

Hi, this is my first post. I'm diagnosed in october 2016. Start with Imatinib 400 at 22%, after 3 months 0.27%, now after 6 months 0.012%. I would like to ask my docter to reduce my
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
Stacy.Langdon on 15 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

Diagnosed with CML @ 6 weeks pregnant
by Stacy.Langdon (Apr 23)

Update! 4 days interferon alpha 2b treatment complete and so far zero side effects other than some fatigue (which could also possibly be related to growing a human!! Feeling like myself and excited

by EvaH (Apr 19)

Welcome to the forum - keep the updates coming and I'm sure some of the pre-imatanib patients here will be able to relate the the interferon treatement.
All the best and stay positive!

by Stacy.Langdon (Apr 15)

Hi All!

New to the forum. Last week I was diagnosed with CML at 6 weeks pregnant. Routine Prenatal Bloodwork detected a high whiteblood cell count. Thankfully for a group of fast acting
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
remw on 23 January 2017

Category: Treating CML

Replies: 4

Last updated: 21 April 2017

Destiny trial - successful so far
by Richard42 (Apr 21)

I had a couple of blips during the trial but they always went away, and some, when reviewed, were wrong anyway. Most peculiar - my consultant said they may have been "artefact".
I

by remw (Apr 19)

Just read my post and realised I did actually mean one year on half dose. I have about another 5 months left to go on the trial off Imatinib. One very minor blip in the figures this month, but

by sandy craine (Feb 1)

Thanks for posting your update - it is very good to hear that your have managed to maintain TFR, and hopefully will continue to do so. It is also good to know that you felt so good on half dose TKI

by Richard42 (Jan 25)

Hi there
Congratulations on great results.
I was a bit puzzled by your trial schedule though - I'm also on Destiny but for me (and I thought, everyone), it's been 12 months on half dose,
Category: Treating CML

Replies: 4

Last updated: 21 April 2017
johnw1001 on 20 January 2017

Category: Treating CML

Replies: 5

Last updated: 18 April 2017

High Dose Glivec
by EvaH (Apr 18)

Curious about 61.4 WBC on diagnosis, is this the same as 614,000 /ml I wonder? What are the normal range of WBC using your measure (61.4)?
I ask because I try to figure out how badly off I was

by johnw1001 (Mar 24)

600mg Glivec leads to rapid regain of MMR and deep remission-update
Hi All,
Thanks to Eva and Bee for your responses and for the information on the impacts of higher dose Glivec.Just to update a few

by Bee (Feb 9)

Ted was on 800 mg of Imatinib for at least 2 years. He responded very slowly to 400mg for the first few years, never getting into single figures, but 800 mg sorted him out and brought his PCR

by EvaH (Feb 7)

ps: I also had 10 hours flying after diagnosis (with 2.5 million platelets) but no one thought to give me heparin....I wish they had, might have made my flight a little less nervewrecking :(
Category: Treating CML

Replies: 5

Last updated: 18 April 2017
keithlatham55 on 18 March 2017

Category: Treating CML

Replies: 2

Last updated: 21 March 2017

cml re
by keithlatham55 (Mar 21)

yes and i understand that , i have spent many hours in waiting rooms looking round at people who have not been as lucky as me . my journey as been long and hard at times but the support i have had

by David Fitz (Mar 21)

Welcome, Keith!
Whilst unfortunately it's not the case for every patient, it's always great to hear from people who've been through a long and ultimately successful journey with CML.

by keithlatham55 (Mar 18)

hi just letting everyone know i'm a newbie on here and would like to share my experience regarding cml
i was diagnosed in 2002 .
Category: Treating CML

Replies: 2

Last updated: 21 March 2017
MartinZA on 12 December 2016

Category: Treating CML

Replies: 9

Last updated: 16 March 2017

How important is MMR?
by David Fitz (Mar 16)

Hi Karen,
At CML Horizons last year, two doctors (Steve O'Brien and Giovanni Rosti) both spoke about 1% being a good rule of thumb as a "safe" spot. For example, if they had a patient

by karen (Mar 16)

Hi Martin
If it's any help there is a lot of thinking that anything below 0.5 is 'safe', certainly David Marin has suggested that is the better figure to be more concerned about.
I have

by MartinZA (Mar 16)

Hi David
Thank you so much for the reassurance! I am sure that I will get lower, but I fear I will never truly relax until I reach that 0.1%, which seems so arbitrary yet is so very important

by David Fitz (Mar 13)

Hi Martin,
I understand you're disappointed, but the reduction from 0.36 to 0.24 is a 33% drop. You've wiped a full third off your previous result. Not to be sniffed at!
David.
Category: Treating CML

Replies: 9

Last updated: 16 March 2017
carolinephilips76 on 27 February 2017

Category: Treating CML

Replies: 1

Last updated: 27 February 2017

DIGNOSIS OF CML
by David Fitz (Feb 27)

Hi Caroline,
Without getting too technical, the PCR test was likely performed on your brothers blood, whereas the biopsy would have been on bone marrow.
These days blood tests are very

by carolinephilips76 (Feb 27)

my brother has been dignosed cml 18 days ago on the basis of PCR test. onward bone merrow aspiration and biopsy done .what is difference between PCR TEST AND BIOPSY.
Category: Treating CML

Replies: 1

Last updated: 27 February 2017
Lucas on 18 February 2017

Category: Treating CML

Replies: 3

Last updated: 23 February 2017

some - good - news and reassurance
by sandy craine (Feb 23)

HI Lucas,
thanks for your positively uplifting post.... so glad you continue to have such a low PCR result -
my best wishes as always,
Sandy

by Lucas (Feb 20)

Hey, Martin!! Thanks for the kind words. I know that most of us wait for that big fat 0.1% to live life, but it doesn't have to be like that. Life is happens all the time. If you're feeling

by MartinZA (Feb 20)

Hi there Lucas

Muito obrigado for your excellent post and your reassuring advice. It's such good news that your PCR is now so low - I read all your posts about your problems with

by Lucas (Feb 18)

Hey, guys, hope everyone's fine.

I don't post here for a long time but i'm always reading the threads. This is a great group and i'm so greatful to have found cml support when
Category: Treating CML

Replies: 3

Last updated: 23 February 2017
David Ryner on 13 February 2017

Category: Treating CML

Replies: 1

Last updated: 20 February 2017

Update on the NICE evaluation of ponatinib
by David Ryner (Feb 20)

Following the publication of the NICE Appraisal Consultation Document (ACD) NHS England (NHSE) have now updated the National Cancer Drugs Fund (CDF) List to include ponatinib treatment for both

by David Ryner (Feb 13)

NICE have today published their Appraisal Consultation Document (ACD) on the evaluation of ponatinib. ACD publication is a significant milestone event in the evaluation process. The provisional
Category: Treating CML

Replies: 1

Last updated: 20 February 2017
teddyb on 6 December 2016

Category: Treating CML

Replies: 2

Last updated: 14 January 2017

Halving the TKI dose safe, cost effective in CML patients with stable remissions. Destiny.
by teddyb (Jan 14)

Thanks Sandy, i will read up on those.
Exiting times, i too am hoping of reducing the dosage at some point.
Bloodwork is good, pcr is low and stable, so i guess i am doing pretty well except for

by sandy craine (Dec 13)

Thanks for the links Teddyb, we have posted an abstract from ASH on this but this is a more detailed report and will be helpful to more people. I hope you are doing well.
Sandy

by teddyb (Dec 6)

Sorry if this has been posted before.

Here are some uplifting information from the Destiny trial.

http://www.mdedge.com/hematologynews/article/119417/cml/halving-tki-dose...
http://www
Category: Treating CML

Replies: 2

Last updated: 14 January 2017
David Ryner on 17 November 2016

Category: Treating CML

Replies: 2

Last updated: 30 December 2016

Dasatinib (Sprycel): more good news for patients in England
by David Ryner (Dec 30)

I should have posted what follows on the 21st December but preparations for Christmas and other work got in the way.
On the 21st, NICE published final Guidance on 1st and 2nd line use of

by chrissie (Nov 18)

Fantastic news and thanks so much for the post, David. I'm sure we all share and relish the feeling that the safety net is back in place with the choice of 3 TKIs and (hopefully) more to follow

by David Ryner (Nov 17)

NICE (National Institute for Health & Care Excellence), as part of their Rapid Reconsideration programme for drugs on the CDF list, has today published their draft Guidance for dasatinib.
In
Category: Treating CML

Replies: 2

Last updated: 30 December 2016
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