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asifinf on 13 April 2016

Category: Treating CML

Replies: 5

Last updated: 19 September 2017

Nilotinib to Dasatinib switch
by davewell (Sep 19)

For another perspective...
I am on dasatanib. I started out on 140mg, now I am on 100mg.
When starting dasatinib I had a headache that manifested itself for a couple of hours every day. Nothing too

by filawong (Sep 18)

Hi,
Good to find your post here, how are you recently? Can you share any update for us?
I am 34 years old male staying in Macau, my situation is very similar to you, having Nilotinib for

by David Fitz (Apr 16)

Hi again!
Sorry for the short-ish reply. I'm on my phone replying so typing not great.
Pleural effusion is zero issue for me. It does effect some people, but when it does happen it's

by asifinf (Apr 15)

Thank you very much or the prompt response David.
Yea, the mutation test has just been done; I am awaiting the result now.
One important thing I would like to know about Dasatinib is the side
Category: Treating CML

Replies: 5

Last updated: 19 September 2017
David Fitz on 5 September 2017

Category: Treating CML

Replies: 7

Last updated: 13 September 2017

Dropping to 70mg
by Karinne (Sep 11)

Congratulations on your decision!!!!
Let us know about your progress. How often are you going to do your pcr test?

by alliswell (Sep 8)

Congratulations . very good news indeed .
i hope you can keep your score at same level .
will be following , keep us updated ..
Good luck

by chrissie (Sep 8)

Wow. Great news, David. Hopefully, after 2 years om MR4 you will hold it. Keep us posted.
Best
Chrissie

by MartinZA (Sep 7)

That's wonderful news, David! Well done.
Category: Treating CML

Replies: 7

Last updated: 13 September 2017
John Gilbert on 23 July 2017

Category: Treating CML

Replies: 2

Last updated: 17 August 2017

PCR 24% but cant get lower
by EvaH (Aug 17)

As a quick positive note, optimal response has an impact on your ability to eventually come off TKIs but doesnt seem to effect long term remission.
However I agree a plateau at 24% might be worth

by sandy craine (Jul 29)

HI John,
Sorry for this late replay as I missed your post. I have a few questions:
1. Where are you being treated? Is it s regional CML expert centre or a District General Hospital?
2. Does your

by John Gilbert (Jul 23)

Ive been on Sprycel for 2 years. The first year I got down to 9% pcr levels and then my platelets started getting low. I did a bone marrow biopsy and I didn't have any mutations and no more blasts
Category: Treating CML

Replies: 2

Last updated: 17 August 2017
ian hinley on 6 October 2016

Category: Treating CML

Replies: 9

Last updated: 18 July 2017

Hopefully exciting times ahead - Sprycel dose reduction!
by ian hinley (Jul 18)

9 Month UPDATE: Have just had third 3 month test results since halving in September 2016 and still at 0.004 so MMR 4.5 still!! This still proves proves that half the dose (50mg Sprycel) is

by Philip (Jun 5)

HI Ian: I joined CML Support about a year and one month ago. I posted for the first time yesterday. As to your dosage reduction on Sprcyel, here is what I have to say.
I was

by David Fitz (Apr 13)

Ian,
That's great ... and assuming an IS calibrated result 0.003% is plenty more than MMR (MR3), it's MR4.5 - an excellent result! Congratulations.
David.

by ian hinley (Apr 13)

6 Month UPDATE: Have just had second 3 month test results since halving in September 2016 and still at 0.003 so MMR. Really chuffed as this proves that half the dose is keeping everything in
Category: Treating CML

Replies: 9

Last updated: 18 July 2017
Harsh on 5 March 2017

Category: Treating CML

Replies: 3

Last updated: 11 June 2017

Bcr abl and bone marrow transplant
by Harsh (Jun 11)

.

by Harsh (Mar 6)

Thank you for your detailed response and advice !!.I will enquire about Ponatinib and ABL001 clinical trials ,will wait for next pcr test results for SCT decision but will try to get HLA

by sandy craine (Mar 5)

Good news... you have responded well to nilotinib within the guidelines of less than 10% within 3 months. You next PCR result may well show a further drop so hopefully MMR (0.1%) before 6 months. As

by Harsh (Mar 5)

Hi sandy,

After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10%
Category: Treating CML

Replies: 3

Last updated: 11 June 2017
Karinne on 6 June 2017

Category: Treating CML

Replies: 3

Last updated: 8 June 2017

Stopping (or not) the medication?
by nigel (Jun 8)

Hi Karinne, Thanks for the post I would comment as follows.
Yes it seems 50% of patients will go back on treatment but of those so far 100% responded to treatment once more, that is many

by simy99 (Jun 8)

Hi
Diagnosed in 2003. 1st in Wales prescribed Glivec off trial
Nilotunib about 6 years ago down to 150g.
Went to HH nearly 3 years ago. Came off all drugs in Jan 2015.
Latest PCR (HH) is 0

by Philip (Jun 7)

I think that would be a great discussion

by Karinne (Jun 6)

Hello everyone,
I would like to open a discussion about stopping the TKIs outside of clinical trials.
I am amazed and worried at the number of entries about CML patients wanting to stop their
Category: Treating CML

Replies: 3

Last updated: 8 June 2017
EvaH on 5 June 2017

Category: Treating CML

Replies: 4

Last updated: 7 June 2017

Buying Imatanib in UK when you are outside NHS
by johnw1001 (Jun 7)

Hi Eva
I would suggest the following .Most private hospitals have a private GP service usually same day at a charge of about £75 minimum Why not discuss the validity of your Swiss

by David Fitz (Jun 6)

Be aware that there could be a VAT implication of importing medicine from Switzerland to the UK.
If you imported £5,000 worth of imatinib you could be liable for about £1000 of VAT

by EvaH (Jun 6)

Thanks, I'll check him out. I'm looking at a possibility to ship stuff out from switzerland but thought its better to have a back up plan and its great to have a name.
I've been

by David Fitz (Jun 5)

Eva,
Neither an A&E doctor or a GP would not be able to prescribe imatinib for you in any case. It can only be prescribed by someone with a specialism in the appropriate area - i.e. a
Category: Treating CML

Replies: 4

Last updated: 7 June 2017
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