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

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Steven Davies on 2 November 2016

Category: About CML

Replies: 0

Last updated: 2 November 2016

Hammersmith CML Support Group Meeting at Hammersmith Hospital Saturday 25th February 2017
by Steven Davies (Nov 2)

Hammersmith CML Support Group Meeting at Hammersmith Hospital
EVERYONE WELCOME
LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 OHS.(
Category: About CML

Replies: 0

Last updated: 2 November 2016
Ollie on 18 October 2016

Category: Blood tests

Replies: 12

Last updated: 2 November 2016

PCR at Hammersmith following allo BMT
by chrissie (Nov 2)

Hi John
How are you doing now? Really hope the side effects have abated,
best
Chrissie

by Parklife (Nov 1)

Hi Darley
Not wanting to deviate too far off topic here, but how are you feeling having been off TKI's for so long?
Are you feeling slightly/much different from being on Imatinib? If so, in what

by darley (Oct 31)

I had MUD BMT and then 5 years after had a rising PCR. In my case rapidly rising. I went on imatanib and had rapid success. I'm now 26 months in on the DESTINY trial and have had 14

by Ollie (Oct 28)

Thanks David,
That's a very helpful way of looking at it, and thanks for your example. I think as we have been through one molecular relapse in 2008, any minor increase in BCR-ABL, even
Category: Blood tests

Replies: 12

Last updated: 2 November 2016
Khishgee on 20 October 2016

Category: About CML

Replies: 4

Last updated: 1 November 2016

Advice me
by Khishgee (Nov 1)

Dear Sandy,
Thank you for your advice, it gave me very very big hope in my mind. Thank you.

by sandy craine (Oct 23)

Yes, Interferon comes in different forms and I suggested one that is used more often in Europe which is in a pegylated and is thought to have less side effects:
According to Wikipedia.......

by Khishgee (Oct 23)

Hi Sandy,
Thank you for you advice, i have 1 question again, is interferon Alfa 2a same as you suggested?
Regards
Khishgee

by sandy craine (Oct 22)

Hello Kishgee,
Your PCR results need to show that you have at least an optimal response to therapy i.e. at least stable results at or below MMR (0.1% Bcr-Abl) for 2 years according to recent
Category: About CML

Replies: 4

Last updated: 1 November 2016
jilu on 24 October 2016

Category: Blood tests

Replies: 2

Last updated: 27 October 2016

need Information on complete haematological response.
by sandy craine (Oct 27)

Hello Rajesh,
David has already put a higher than average WBC's into the context of infections etc. In the context of your treatment with 400mg imatinib at almost 3 months from start of therapy

by David Fitz (Oct 24)

Hi Rajesh,
I'm not great with the Indian numbering system. Lakh - is that 1,000,000?
White blood cell counts can move around quite a lot in perfectly healthy people. If someone without CML has a

by jilu (Oct 24)

Hi ,
just wanted to know how long it will take for WBC to get normal for newly diagnosed when on Imatinib 400mg.
its my 82nd day on imatinib 400mg intially my WBC counts were close to 3 lakhs and
Category: Blood tests

Replies: 2

Last updated: 27 October 2016
gordyboy on 7 October 2016

Category: Uncategorised

Replies: 1

Last updated: 18 October 2016

HIB vaccine
by David Fitz (Oct 18)

Hi -
Sorry you haven't got a more complete answer already, and indeed mine is far from ideal too!
The HIB vaccine is a "biosynthetic vaccine", that is one manufactured to look

by gordyboy (Oct 7)

Have respiratory issues as well as CML.
Resp consultant has advised me to have the HIB vaccine, but to check with CML consultant if it is okay.
IS the HIB vaccine the real name for the bog standard
Category: Uncategorised

Replies: 1

Last updated: 18 October 2016
David Fitz on 5 October 2016

Category: About CML

Replies: 2

Last updated: 11 October 2016

Can you help? Please vote online to get "The Chronic Myeloid Chronicles" book published.
by chrissie (Oct 11)

Done. I wish him well with this venture
Best to all
Chrissie

by David Fitz (Oct 10)

At over 370 votes, Ed's book is doing well but needs a bit more of a push.
If you haven't already voted for its publication, please do take the 2 minutes to do it.

David.

by David Fitz (Oct 5)

Ed Jones, a patient at Hammersmith Hospital here in the UK has written a book about his experience and journey with CML, having being diagnosed in 2006.
Ed needs to get 1000 votes in order to get
Category: About CML

Replies: 2

Last updated: 11 October 2016
anhenbo on 9 October 2016

Category: About CML

Replies: 1

Last updated: 10 October 2016

side effect
by nigel (Oct 10)

Hi Hennry. I have been on Glivec for 5 years now. Like you I suffer from eye bleeds occasionally, although it’s been a little while now I am pleased to say since the last. They are quite

by anhenbo (Oct 9)

Hello dear all
I am having Gleevec now for over 15 years and still responding well
Last yers I have some more side effects like bleeding eyes with is keeping under control with some fluid tear
Category: About CML

Replies: 1

Last updated: 10 October 2016
Bob1962 on 26 September 2016

Category: Uncategorised

Replies: 5

Last updated: 8 October 2016

Generic Imatinib
by sandy craine (Oct 8)

Thanks Richard
A very welcome,concise and lucid post on an important topic.

by nigel (Oct 5)

Excellent topic and comments, well explained and some comprehensive points. I share the view that Generics will be fine. I am sure our excellent NHS will not allow us anything that is not first

by Richard42 (Oct 5)

Hi
I watched the presentation on generic imatinib with interest, including the Q&A. The sense I got was very much that experience elsewhere is positive with the generics. That's

by sandy craine (Oct 4)

Hello Bob,
From my understanding about the situation in the UK, there will definitely be pressure exerted on clinicians to change people who are currently treated with the branded imatinib (Glivec)
Category: Uncategorised

Replies: 5

Last updated: 8 October 2016
Louise82 on 26 September 2016

Category: Side effects

Replies: 2

Last updated: 7 October 2016

side effects
by BeckyClark (Oct 7)

I've just started Imatinib (2 weeks)and consultant named this as a likely side effect. said to use Immodium if bothersome, but only I'm now only getting it once every other day, so just put

by Olivia (Sep 27)

Yep, me too, on & off over the years. Immodium generally sorts it.
Olivia

by Louise82 (Sep 26)

Okay-cant see any mention of this on Forum.
Has anyone been troubled by diarrhoea. I know Consultant & his registrar asked me every time I saw them if I had diarrhoea. I was & it
Category: Side effects

Replies: 2

Last updated: 7 October 2016
David Fitz on 1 October 2016

Category: Uncategorised

Replies: 1

Last updated: 3 October 2016

Videos & presentations from CML Patient Day 2016 now available
by chrissie (Oct 3)

Hi All
Have watched most of the presentations and found them all excellent. Can highly recommend to one and all. It really lifted my spirits - such optimism and positivity. A must for

by David Fitz (Oct 1)

Hi all,
Videos of the speaker presentations from the CML Patient Day (2016) are now available. You can also download the slides that were presented.
You an find them at this link: http://www.
Category: Uncategorised

Replies: 1

Last updated: 3 October 2016
grells on 4 August 2016

Category: Side effects

Replies: 3

Last updated: 1 October 2016

New to this - have questions!
by Irishmammy (Oct 1)

HI everyone, my little one has been on Imatinab for 2 years and she went from blond curly hair to straight dark brown and it actually got thicker. I suppose patients are different, thank God for

by Louise82 (Sep 26)

Hi,
I noticed my hair was thinning before I was diagnosed-obviously one of the symptoms. It is still thinner & I guess something I have to realise is here to stay.
Take Care
Louise

by David Fitz (Aug 9)

Hi there!
Hair thinning is a documented side-effect of nilotinib, though I don't think it's particularly common. Unfortunately I don't think there's an obvious solution to it. When I

by grells (Aug 4)

Hi there. Am pretty new to all this, diagnosed in March this year and currently kicking back for the Summer having been signed off work until hopefully October. All going well so far on
Category: Side effects

Replies: 3

Last updated: 1 October 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
Anonymousgrl on 28 September 2016

Category: Reproductive health

Replies: 3

Last updated: 29 September 2016

Anyone with perspective on planning a pregnancy on dasatinib?
by David Fitz (Sep 29)

Hi again,
It's important to know your latest PCR result. Could you find out from your hospital? I'd have thought it should be in your most recent clinic notes.
Since you have been taking

by Anonymousgrl (Sep 28)

I live I the USA and I'm not currently aware of my most recent PCR. I have read that some women were treated with interferon or leukapheresis, but that it didn't control their CML and they sometimes

by David Fitz (Sep 28)

Hi.
It's late tonight so I can't send you the details of what I'd like to tell you, but I will tomorrow.
Long story short, with a patient that is in a good place (and with 4 yrs MMR you

by Anonymousgrl (Sep 28)

Hi, I'm a 25yo female, diagnosed four years ago in complete molecular remission for close to three years on Sprycel (dasatinib). I've been considering approaching my doctor about creating a
Category: Reproductive health

Replies: 3

Last updated: 29 September 2016
UCLH on 27 September 2016

Category: About CML

Replies: 3

Last updated: 28 September 2016

Online Q and A session with UCLH expert Dr Andres Virchis, consultant haematologist
by UCLH (Sep 28)

Hello again all,
Many thanks for taking part and making the event a success. If you missed it, the web chat can be replayed at the link below:
https://www.uclh.nhs.uk/aboutus/webchat/Pages/

by chrissie (Sep 27)

Thank you so much for this and especially to the doctor for taking time to answer the questions. I found it very reassuring to read what he said about generic imatinib.
Best to all
Chrissie

by David Fitz (Sep 27)

Thank you for arranging, and thank you to Dr Virchis for taking the time to answer everyone's questions.

by UCLH (Sep 27)

Good afternoon all,
I just wanted to make you all aware that UCLH are holding an online Q and A web chat about CML with consultant haematologist Dr Andres Virchis this afternoon at 3pm.
You can
Category: About CML

Replies: 3

Last updated: 28 September 2016
Louise82 on 21 September 2016

Category: Uncategorised

Replies: 6

Last updated: 26 September 2016

TRAVEL
by Louise82 (Sep 26)

Thanks Nigel,
Definitely reassures me. I wants so much to go & don't see Specialist until late October by which time fares will have risen.
Will get health insurance, but because of cost

by Louise82 (Sep 26)

How lovely to have a beautiful baby Lavanna. Pleased all is working for you for your information
Warm Regards
Louise

by Louise82 (Sep 26)

Thank you for informative replies-think as I am fretting so for my family I will go. Wont have trouble with Australia as I am Australian with Medicare still. I have dual citizenship.
Warm Regards

by MartinZA (Sep 23)

Hi Louise
Travelling is my great passion in life, and I have already taken two long(ish) trips overseas not even a year after being diagnosed. I recently returned from Azerbaijan to my home in
Category: Uncategorised

Replies: 6

Last updated: 26 September 2016
David Fitz on 16 September 2016

Category: Uncategorised

Replies: 13

Last updated: 26 September 2016

Webcast Details: CML Patient Day 2016 - Saturday, 24th September
by chrissie (Sep 26)

PS Olivia - try Blink for watery eyes ( sold over the counter in any pharmacy). Recommended by my optician who explained that although eyes are watering, this is actually a symptom of dry eyes ( He

by chrissie (Sep 26)

Hi Olivia and David Fitz
Well, we all completed the walk although the wind was ferocious and we were walking against it which made it hard going. At least it didn't rain so the conditions

by Olivia (Sep 24)

Hi Chrissie
The hospital visit went fine, I'm still on 200mg and the side effects are certainly less annoying - though I still get occasional cramps and frequent watery eyes. My

by chrissie (Sep 23)

Thank you, Sandy. I always wanted the extra 0 and now I have it - long may it last! I wasn't surprised to fail DESTINY when I'd never reached MR4 but If I can keep it down there for a
Category: Uncategorised

Replies: 13

Last updated: 26 September 2016
skiinglaketahoe on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

CML Web Chat by UCLH hospital
by skiinglaketahoe (Sep 23)

Hi
Just to let everyone know that UCLH (my hospital) is having a web chat this coming Tuesday afternoon. Questions can be submitted in advance and the web chat can be followed on twitter or by
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
sandy craine on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

UK CML Patient Conference 2016 - Links for Webcast Viewers
by sandy craine (Sep 23)

The UK CML Patient Day is an annual conference that gives attendees the opportunity to listen to talks from national and international medical experts in CML. The day will cover topics ranging from
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
dadbags on 3 September 2016

Category: Uncategorised

Replies: 6

Last updated: 19 September 2016

reduction in my dosage from 600mm of gleevac to 300mm
by David Fitz (Sep 19)

That is an excellent result for you!
In time, and after holding your response for a while, are you going to consider trying to stop taking imatinib altogether and see if you maintain your response?

by dadbags (Sep 14)

hi its me again--well so far so good my reduction in dosage seems to work-PCR RESULTS 0.0000--hope it continues-ty all

by dadbags (Sep 6)

hi sandy thank u very much for responding to my post-no BULL both u guys(nigel()really helped me get through this week---ty again very helpfull -BEST REGARDS STEVEN

by dadbags (Sep 6)

hi nigel-thank u for answering my post u put my mind at ease-ty very much-i hope it works out for u-it takes a lot of balls to go in tha trial program of no GLEEVAC--saw my oncologist today she is
Category: Uncategorised

Replies: 6

Last updated: 19 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