TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

You are here

Forum

David Ryner on 10 July 2016

Category: Uncategorised

Replies: 2

Last updated: 25 January 2017

Provisional dates for the evaluation of ponatinib by NICE
by David Ryner (Jan 25)

I attended, with a patient being treated with ponatinib, the Committee meeting in Manchester for the NICE appraisal of ponatinib on the 18th of January.
Ponatinib is currently only accessible

by David Ryner (Aug 9)

NICE have sent us a package of documents as a first step in their appraisal of ponatinib which is part of the CDF Rapid Reconsideration programme. We intend to be participants and have already

by David Ryner (Jul 10)

NICE contacted us on Friday and have said that they are now able to start the evaluation process sometime in early August with the closing date for submissions by 'patient experts' being
Category: Uncategorised

Replies: 2

Last updated: 25 January 2017
madhug on 3 January 2017

Category: Children & young people

Replies: 3

Last updated: 19 January 2017

Newly diagnosed. Need advice
by EvaH (Jan 19)

I think Sandy has adressed your questions very well. I think vegetarian diet is a good idea for many reasons but not as a majic cure :)
I was dianosed 6 months ago in central africa, I returned to

by mihir (Jan 5)

Dear Madhu,

Sorry to hear about the diagnosis. Incidentally, I am also from India, diagnosed a little before you, and also began with Veenat (imatinib generic) 800 mg [which as I learnt is a

by sandy craine (Jan 4)

Hello Madhu and welcome,
I am sorry you have been diagnosed with CML at such a young age. We all experience the same sense of shock at diagnosis but it does help if you can talk with

by madhug (Jan 3)

hi
Category: Children & young people

Replies: 3

Last updated: 19 January 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
Olivia on 11 January 2017

Category: Other conditions

Replies: 2

Last updated: 14 January 2017

Another use for nilotinib?
by Olivia (Jan 14)

Thanks for all that information, John. It seems that my husband (who has Parkinson's) won't be offered nilotinib any time soon, but it is good to know that so much research is going on

by johnw1001 (Jan 12)

Hi Olivia,
The potential use of a tki such as nilotinib for purposes other than CML refers to some research work being undertaken at Georgetown Medical Centre in USA .There was a small sample

by Olivia (Jan 11)

I have just got back from a talk about current research into Parkinson's Disease, where the speaker mentioned that nilotinib is currently under discussion as a possible drug for use in its
Category: Other conditions

Replies: 2

Last updated: 14 January 2017
angela.koleska on 29 December 2016

Category: Blood tests

Replies: 4

Last updated: 11 January 2017

bcr-abl blood test
by angela.koleska (Jan 11)

Hi Nigel, thank you for your responce, Happy New Year and all the best to you too!
I will definetely post her next results here and ask of your opinion. In the meanwhile I do not know if its the

by nigel (Jan 2)

Hi Angela, happy new year first of all to you, your sister, and of course everyone here.
Whilst this has been a slower response than is the guidelines, it is very encouraging to see that her

by angela.koleska (Jan 2)

Thank you for your reply Chrissie, Happy holidays and best wishes!
My sister is treated in Macedonia(Europe), when she was diagnosed they only performed a qualitative bcr-abl test, not a

by chrissie (Jan 1)

Hi Angela
Others may be along soon to respond to your post now Christmas and New Year have passed.
I would say that although your sister may seem to be reacting slowly, her PCR results are
Category: Blood tests

Replies: 4

Last updated: 11 January 2017
mihir on 5 November 2016

Category: Getting help

Replies: 8

Last updated: 6 January 2017

Advice?
by sandy craine (Jan 6)

Hi Mihir,
Yes, I know of a clinical trial in Germany - the German CML IV study- that treated patients with a combination of imatinib + peg. IFN. PegIFN seems to be better

by mihir (Jan 5)

Dear Sandy,

Thank you very much for your help.

This forum is a great source of information, as well as inspiration.

As I mentioned, I was diagnosed in AP and started

by sandy craine (Nov 22)

TKis and accelerated phase.
Yes, TKIs can work very well in some patients, but it depends on how long your disease has been in AP, whether there has been any further clonal abnormalities etc. as

by mihir (Nov 20)

Thank you Sandy.
Sorry I was not clear. Yes, my diagnosis is in accelerated phase and perhaps that is theone reason for 800mg. I meant to ask whether - given that diagnosis in accelerated phase
Category: Getting help

Replies: 8

Last updated: 6 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
chrissie on 23 December 2016

Category: Uncategorised

Replies: 0

Last updated: 23 December 2016

Happy Christmas and good health in 2017
by chrissie (Dec 23)

best wishes to everyone. Maybe this will be the Year of the Cure?? We can but stay positive.
Love
Chrissiex
Category: Uncategorised

Replies: 0

Last updated: 23 December 2016
Karinne on 20 December 2016

Category: Uncategorised

Replies: 2

Last updated: 22 December 2016

My pcr scare
by Karinne (Dec 22)

Dear David,
Thank you for your great response. And also for the reference to this interesting article that I did not have. As for the cranberry juice, I would stay clear of it, too. A group studied

by David Fitz (Dec 21)

Hi Karinne,
Thanks for a really informative post. Luckily for me I hate cranberry juice! But all the same, it goes to show how important it is to take extra care when taking any new supplements,

by Karinne (Dec 20)

Since I was diagnosed with CML, on Friday the 13th of December 2013, I have been gathering information about the disease and how to live with it. I am a biologist and love numbers and charts. This
Category: Uncategorised

Replies: 2

Last updated: 22 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
johnw1001 on 4 December 2016

Category: Uncategorised

Replies: 5

Last updated: 7 December 2016

Government decides that the NHS will no longer fund second stem cell transplants
by David Ryner (Dec 7)

Thank you for your post John and the same to those of you who replied. Your post was timely because on Sunday NHS England (NHSE) confirmed that second allogeneic stem cell transplants for relapsed

by David Fitz (Dec 5)

Hi Chrissie,
Here's the link...
https://www.change.org/p/give-sasha-a-chance-don-t-stop-funding-second-s...

David.

by chrissie (Dec 5)

Me, yet again. I just received the email from change.org so have managed to sign the petition. They now have around 45,500 signatures which is good,
best
Chrissie

by chrissie (Dec 5)

Sorry but I can't find the petition. Do you have a link to it, John?
Chrissie
Category: Uncategorised

Replies: 5

Last updated: 7 December 2016
pharmatuk on 12 November 2016

Category: Side effects

Replies: 2

Last updated: 25 November 2016

need help
by johnw1001 (Nov 25)

Hi Pharmatuk,
If you are dragging one leg this would indicate that you should investigate the source of the weakness that is contributing to the problem-it may be joint or muscular weakness that

by sandy craine (Nov 15)

Hi,
side effects do lessen over time... but fatigue seems to be a pretty consistent one so you need to pace yourself- at least for the first 6 - 12 months. Conversely many of us have found that the

by pharmatuk (Nov 12)

came down with CML about 4 months ago....using Gleevic 400....had no side effects until about 3 weeks ago....no am tired all the time....have lost strength in m y left leg....hard to stand up from a
Category: Side effects

Replies: 2

Last updated: 25 November 2016
Kenny on 21 September 2016

Category: Blood tests

Replies: 12

Last updated: 19 November 2016

Last br abl test showed a spike
by David Fitz (Nov 19)

Hi Kenny,
Since the last result was quite a big jump after some time off taking TKIs, its good to see this has settled. Hopefully at your next test you'll see a really good improvement in

by Kenny (Nov 19)

Hi,
My latest bcr abl test result stayed at 0.25.
I'm getting another test in January, hopefully the result improves by then.

Kenny

by David Fitz (Oct 7)

Hi Kenny,
Good to hear you have another test coming up - that is a jump that is near enough to a log change, so definitely something to keep a close eye on. When I took a break from TKIs for just

by Kenny (Oct 7)

Hi,
My results were 0.033 and are now 0.25, I'm getting another bcl abl test at the end of the month, when I will have been back on glivec for 2 months, so hopefully
Category: Blood tests

Replies: 12

Last updated: 19 November 2016
sandy craine on 15 November 2016

Category: Uncategorised

Replies: 1

Last updated: 16 November 2016

Shine a light on cancer - BBC
by nigel (Nov 16)

Hi Sandy, happy to help with a positive story, mine has been very good so far, however I cant see what is needed, eg a link, or whatever ?
Nigel

by sandy craine (Nov 15)

I am sure some of you would give others hope by sharing your CML stories with BBC Breakfast who are asking for patients to share their journey's and experiences of cancer diagnosis. CML is such
Category: Uncategorised

Replies: 1

Last updated: 16 November 2016
DJ on 13 November 2016

Category: Other conditions

Replies: 2

Last updated: 15 November 2016

Pain that moves after fighting an infection
by DJ (Nov 15)

Thanks David. Yeah I don't think it's the accupril either. It's hard to say though.
We went back to the doc today. She's had a lot of pain the last few days.

by David Fitz (Nov 15)

Hi there,
I'm sorry - I only saw this post now. I think it sounds difficult to know what is going on with your mum - at 80 years of age there could be many other factors at play, totally

by DJ (Nov 13)

My mom recently had what the doctor diagnosed as a urinary tract infection. She had major pain in her abdomen and stomach. She was unable to eat solid food. Her urine was brown
Category: Other conditions

Replies: 2

Last updated: 15 November 2016
hyderabadindia on 1 November 2016

Category: Uncategorised

Replies: 1

Last updated: 15 November 2016

pcr-abl test
by David Fitz (Nov 15)

Hi,
By "trado" do you mean tramadol? I think so, but wanted to check.
If so, tramadol can slow breathing which might explain the "heavy" feeling she is having on her chest.

by hyderabadindia (Nov 1)

HELLO MADAM,
RECENTLY WE ARE DONE WITH BCR-ABL TEST(NINTH MONTH ) AND CBP TESTS...THE RESULTS ARE AS FOLLOWING

1.COMPLETE BLOOD PICTURE
Category: Uncategorised

Replies: 1

Last updated: 15 November 2016
DJ on 31 May 2016

Category: Side effects

Replies: 7

Last updated: 13 November 2016

Managing high blood pressure from Tasigna - advice?
by DJ (Nov 13)

Thank you Sandy
Since the post she has gone up on her accupril and it seems to have brought her blood pressure under control. Now I'm a bit concerned since your post mentions they should

by sandy craine (Sep 23)

Hi DJ,
I feel for you! Your mum either needs to see a more engaged Haematologist who will take steps to change her TKI from nilotinib OR if she still cannot be persuaded then her current doctor

by DJ (Sep 20)

Thanks
I'm back to the thread, revisiting this issue yet again and reading your responses. Thank you all for responding.
We were hoping the blood pressure problem would go away, but here

by Ben K (Jun 7)

Hi there, Tasigna has cardio vascular side effects that are well documented. Your doctor must pay attention to this and arrange an appropriate referral to a cardiologist. She needs to be
Category: Side effects

Replies: 7

Last updated: 13 November 2016
grells on 3 November 2016

Category: Organising your life

Replies: 5

Last updated: 10 November 2016

getting back to 'normal'?
by Richard42 (Nov 10)

Hi Grells
Congratulations and I completely get where you are coming from. My response was similar - even a bit more dramatic perhaps as I was "zero" in 6 months. It was totally

by grells (Nov 10)

ladies
thank you so much for your words. i have read them quite a few times over the last week and they have pushed me forward. heading into work on the train for my third and final day of work for

by sandy craine (Nov 5)

Oh Grells, go on blow your trumpet .... no one else will as no one else can really understand how good it is to get those low molecular numbers - and so early. Congratulations.
Sandy

by chrissie (Nov 4)

A brilliant result. Congratulations!
I agree with Olivia about marmalade but I only eat it at weekends. No grapefruit, though, and I really miss that and no pomegranate either.
I managed to
Category: Organising your life

Replies: 5

Last updated: 10 November 2016
Smahmood on 23 October 2010

Category: Uncategorised

Replies: 8

Last updated: 10 November 2016

Hypo Pigmentation-Lightening of the skin (Glivec/Imatinib)
by Bee (Nov 10)

Hi John
Ted's dark patch on his nose has faded over the last few years and is not really noticeable now. It got blacker in the sunshine and he used to used my mineral powder make-up (shh

by johnw1001 (Nov 9)

Hi All,
Have had this problem of thinning of the skin especially on the nose;some of the early product information for imatinib highlighted sensitivity to the sun and changes in pigmentation.
In my

by David Fitz (Oct 22)

Hi Annie,
You're replying to a thread from 6 years ago, so probably won't get an answer from the person who posted the last message. Perhaps start a new thread wit any questions you have and

by annie t (Oct 21)

Shaz,
Did you see any changes in the skin after so many years of treatment?
Even I am on Gleevec from last 1 year and hypopigmention has made my life miserable.
Category: Uncategorised

Replies: 8

Last updated: 10 November 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