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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Frenchguy on 28 November 2015

Category: Uncategorised

Replies: 5

Last updated: 2 December 2015

Has anyone experienced brain zaps
by sandy craine (Dec 2)

Hi Francis... given your clinicians have suggested a trapped nerve then you might try seeing a cranial osteopath. It is worth a try?
Sandy

by Frenchguy (Nov 29)

Yes, I can't blame tki but no doctor (and I have seen a lot of specialist) knows where it comes from. Most of the time, they told me that it is nerve of my neck which irradiate on the top

by darley (Nov 29)

If you had them even before diagnosis then it can't be Sprycel.
Go back to your doctor and make sure he understands how it affects you and push for diagnosis.

by Frenchguy (Nov 29)

Hi Darley,
That is the problem. I have asked many times to my gp, to my onc, to neuro and have done an x-ray but nothing has been found. These brain zaps come and go but become frightening actually
Category: Uncategorised

Replies: 5

Last updated: 2 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
seanreed79 on 22 November 2015

Category: Side effects

Replies: 5

Last updated: 29 November 2015

Just a few questions for a newbie...
by darley (Nov 29)

Yep! We can most definitely confirm that's rubbish!

I was told I wouldn't see out 3 months. That was over 20 years ago. That was rubbish too :)

by seanreed79 (Nov 29)

Thanks Sandy, Nigel and Darley
Much appreciated for advise; Tonic water and bananas on the diet now, leg pain miraculously went early this week so 10 days of it, did 5k race Saturday and it

by darley (Nov 24)

Hi Sean,
Welcome to the club no one wants to join. ;) Hang in there mate. You will be going through a period of adjustment and shock!
I was 42 when diagnosed.

by nigel (Nov 23)

Hi Sean. welcome the the new world of being a CML patient. sorry you have had to join us. I was diagnoised at 45, and put on Imiatinib. I was a keen squash played before diagnosis, playing to a
Category: Side effects

Replies: 5

Last updated: 29 November 2015
david_a on 28 November 2015

Category: Uncategorised

Replies: 2

Last updated: 29 November 2015

Relapse and quick MMR recovery on destiny trial
by sandy craine (Nov 29)

Hi David,
thanks for the update... as Darley suggested it would be good if you could copy your post into the DESTINY thread pinned to the top of the page- that way we can all keep abreast of what

by darley (Nov 29)

David,
Glad your results are back to o.k.
There's a pinned post at the top of the Forum re DESTINY updates. Would be really good for you to copy and past up there. This is the link

by david_a (Nov 28)

Hi All.
Just an update on my progress after my relapse on the DESTINY trial.After 2 months back on full dose of glivec 400mg my PCR reduced from 0.297% back down to 0.023% on the I/S so I'
Category: Uncategorised

Replies: 2

Last updated: 29 November 2015
On Fire on 28 November 2015

Category: Side effects

Replies: 2

Last updated: 29 November 2015

anger issues
by Parklife (Nov 29)

Hi
I would personally be inclined not to rule out your TKI causing or at least contributing to your symptoms. I believe if you Google low mood or depression and Nilotinib (Tasigna) in the side

by darley (Nov 29)

Frankly, I don't think it's the medication and I think it would be wrong to try to look purely at that as an explanation.
Cancer diagnosis is a BIG thing to deal with and you are you

by On Fire (Nov 28)

Hi all
Its been a while since logging in. It's now a year 2mths since cml diagnosis. All is going well and I'm responding very well to treatment. However I feel sad at time I don't know why. In
Category: Side effects

Replies: 2

Last updated: 29 November 2015
Sarah_143 on 26 November 2015

Category: Uncategorised

Replies: 0

Last updated: 26 November 2015

Colouring your Hair
by Sarah_143 (Nov 26)

Morning,
The consultant I had whilst in hospital said it was ok to dye my hair but the consultant that I now see in the outpatients clinic said no to dying of hair unless it's a natural one and
Category: Uncategorised

Replies: 0

Last updated: 26 November 2015
Ecorrigan on 7 June 2014

Category: Uncategorised

Replies: 9

Last updated: 25 November 2015

Life insurance
by Tusken Raider (Nov 25)

Hi everyone, first time poster here, thought I'd finally get myself round to registering after seeing this post, this website has been an extremely valuable resource to me!
The reason it stood

by darley (Nov 19)

^The prices and conditions are broadly similar to ones I found and which I decided wasn't worth it.

by derren (Nov 18)

Hi All,

I have been looking into Life Insurance again and a broker managed to find me a policy with AIG to give life cover until the age of 65(currently 44) for the small price of £197

by Richard42 (Oct 16)

That's useful info Matt. Like Darley, I no longer have life insurance other than a general group policy at work, for which I do not have to make any medical declaration. I used to
Category: Uncategorised

Replies: 9

Last updated: 25 November 2015
Triumphant on 23 November 2015

Category: Treating CML

Replies: 2

Last updated: 24 November 2015

What to do next?
by Triumphant (Nov 24)

Thank you Sandy. His last wbc was 102,000. He had the enlarged spleen on Imatinib but it even worsened in the first weeks of taking Nilotinib. The side pains stopped on its own but the headaches,

by sandy craine (Nov 23)

Hi, I am sorry to hear of your husbands problems getting access to nilotinib (Tasigna). I assume you are treated in the US as you use the brand name Tylenol for paracetamol/pain killer.
To

by Triumphant (Nov 23)

My husband was diagnosed in 2011 with CML, started on gliveec , 400 mg. later increased to 600 mg.
After 3 years, they said he had developed a resistance to the drug and should switch to
Category: Treating CML

Replies: 2

Last updated: 24 November 2015
wshi2001 on 17 November 2015

Category: Uncategorised

Replies: 6

Last updated: 23 November 2015

BCR-ABL increased after switching from Dasatinib to Imatinib
by sandy craine (Nov 23)

HI William,
Low HGB may well be the cause of your heart increase heart rate- although is this an increase that has been measured by your clinician or is it something you 'feel'? I am not

by wshi2001 (Nov 23)

hi, Sandy,
I forgot to mention my HGB is hopping around the lower limit 120-130. My white cell is quite low between 1.8-3. My potassium and magnesium level are at normal range

by wshi2001 (Nov 23)

hi, Sandy,
I went through the presentation for side effects as well as some others, they are really helpful to me. However, I notice heart problem is not really emphasized in the

by sandy craine (Nov 19)

William, do take a look at Dr. Milojkovics' presentation/slides outlining the side effects caused by the different TKIs. see link here : www.mpdmeetings.org/london-conference-2015/
Her
Category: Uncategorised

Replies: 6

Last updated: 23 November 2015
Frenchguy on 18 November 2015

Category: Uncategorised

Replies: 3

Last updated: 23 November 2015

Changing sprycel box for « fewer » side effects ?
by Daphne123 (Nov 23)

Hi, nice to be here~~~

White Evening Gowns

by Frenchguy (Nov 20)

Hi William,

Thanks for your answer. I have already changed of TKI on last June and was on Nilotinib before but felt worse than on dasatinib with a less good response. For my case, I

by wshi2001 (Nov 19)

hi, Frechguy,
I also suffered from heart pounding, sleeping difficulty due to sprycel. My doc gave me tranquilizer to help me sleep, but not too much useful. It doesn't get better

by Frenchguy (Nov 18)

Hi every one, hope you are fine in these difficult days... I wanted to share some news and need advices according to what happened to me last days.

One month ago, when I switched on new
Category: Uncategorised

Replies: 3

Last updated: 23 November 2015
brandyhewitt90 on 15 November 2015

Category: Uncategorised

Replies: 2

Last updated: 19 November 2015

Diagnosed sept. 18 2015
by sandy craine (Nov 19)

Hi ... welcome to this forum. I agree with Karen that you should ask your clinician to investigate the shortness of breath you are experiencing with dasatinib. You are right that low HGB can cause

by karen (Nov 17)

Hello and sorry to hear that you have been suffering for a while. I didn't really have any pain prior to starting treatment but I did once I went on to Imatinib. If you are suffering from

by brandyhewitt90 (Nov 15)

I am new to all of this. I new something was going on from a abnormal white blood count, but for years my body was hurting. I am only 28 years old and I have three wonderful children of my own, but
Category: Uncategorised

Replies: 2

Last updated: 19 November 2015
Andy Parkin on 15 November 2015

Category: Uncategorised

Replies: 1

Last updated: 19 November 2015

UK Patients and Carers Day conference
by sandy craine (Nov 19)

Hi Andy... I agree, the day was particularly we run and organised. I thought all the clinical presentations were well pitched and informative and the patient stories were not only moving and well

by Andy Parkin (Nov 15)

Just to say many many thanks for another excellent conference yesterday. I've attended 9 of these now and each one has been so informative, and provides such a positive story . Thanks to all who
Category: Uncategorised

Replies: 1

Last updated: 19 November 2015
Sarah_143 on 19 November 2015

Category: Uncategorised

Replies: 2

Last updated: 19 November 2015

Recently Diagnosed...
by Sarah_143 (Nov 19)

Hi Karen,
Thanks for the info.
I've been told that I can take ibuprofen, which I do take if my legs ache, haven't got cramp yet though so look forward to that bout if I get it lol...
I'm

by karen (Nov 19)

Hi Claire
Welcome to the site. Side effects can be a bit of a mixed bag - some people get the straight away and with others it takes time. When I was on Imatinib it took a while for the cramps to

by Sarah_143 (Nov 19)

Morning All,
I was recently diagnosed on the 28th of October and found your CML Support group a couple of days ago and so decided to join as looking through the threads there seems to be a lot of
Category: Uncategorised

Replies: 2

Last updated: 19 November 2015
sandy craine on 18 November 2015

Category: About CML

Replies: 1

Last updated: 19 November 2015

Prof. Tessa Holyoake wins award for her research
by darley (Nov 19)

I read that elsewhere. Well done and good that she gets acknowledgement for her work and efforts.

by sandy craine (Nov 18)

http://www.eveningtimes.co.uk/news/14035804.Glasgow_cancer_doctor_wins_t...
Category: About CML

Replies: 1

Last updated: 19 November 2015
nigel on 18 November 2015

Category: Uncategorised

Replies: 0

Last updated: 18 November 2015

SPIRIT 2 - Dasatinib continuation at end of trial
by nigel (Nov 18)

Following the excellent patients conference at Hammersmith Hospital on Saturday I thought I would update on a conversation I had with Professor Steve O'Brien who runs the SPIRIT 2 trial.
Category: Uncategorised

Replies: 0

Last updated: 18 November 2015
sandy craine on 11 November 2015

Category: About CML

Replies: 6

Last updated: 13 November 2015

Upcoming Events
by darley (Nov 13)

Thanks for finding out and letting us know.   I'm hoping that it's also going to be available after the event.   I've a busy day tomorrow but wanted to watch some of

by sandy craine (Nov 12)

Just checked with organisers and was told the following:
There will be a LIVE Webcast of this years meeting as well as links to the presentations etc. on   http://www.mpdmeetings.org/

by darley (Nov 12)

Ah right.   That's a relief. I thought it was me that wasn't seeing something obvious. ;)
Thanks.

by sandy craine (Nov 12)

Hi Darley, I am not too clear on this either. I am waiting for Prof. O'brien to let me have the actual webcast link... which I assume/hope will be apparent on the www.mpdmeetings.org
Category: About CML

Replies: 6

Last updated: 13 November 2015
Basil from RSA on 10 November 2015

Category: About CML

Replies: 6

Last updated: 12 November 2015

Good news from Basil in South Africa
by darley (Nov 12)

Basil, most interesting. I remained hesitant about trying dose reduction having read about those who had come off, albeit not in trial and whom had managed

by Basil from RSA (Nov 11)

Thanks Sandy. I have always stated that it is a pity that many in TFR were not part of any trials so that this valuable data is lost.
I have kept all my medical and test records since my first PCR

by Basil from RSA (Nov 11)

Hi Darley,
No I was not on any trial at all. We don't have such luxuries in South Africa. My decision to stop was based on many factors but mainly the results of the original STIM trials in

by sandy craine (Nov 11)

Basil,
so good to hear you are still in TFR after all this time. I know you started off as a 'one man trial' and it is wonderful that your doctor was willing to support you in the right way
Category: About CML

Replies: 6

Last updated: 12 November 2015
Moirah on 9 November 2015

Category: Uncategorised

Replies: 3

Last updated: 11 November 2015

what am I aiming for? what does good look like?
by sandy craine (Nov 11)

Hi Moirah,
Many congratulations on your extremely good response to therapy within the first 3 months. European Leukaemia Net recommendations are as follows:
Optimal Response
3 mths:

by darley (Nov 10)

It's sounds good to me too. But then it took me 6 years to get to that stage. Plus a mass of awful treatment including twice daily interferon injections and matched

by Olivia (Nov 10)

Your pcr sounds very good indeed - it took me a year to get that low. There may indeed be blips, as the pcr result can vary for a lot of reasons. The time taken for the sample to

by Moirah (Nov 9)

Hi everyone I hope you are all doing good.
I'm sorry to bug but after my 1st pcr results I'm now starting to feel a bit more brave and want to try and understand more, so I'm sorry if I'm asking
Category: Uncategorised

Replies: 3

Last updated: 11 November 2015
sandy craine on 6 November 2015

Category: About CML

Replies: 0

Last updated: 6 November 2015

Live Online Broadcast: CML, the Patient's Journey. November 12th 19.30 EST
by sandy craine (Nov 6)

If you take a look at the Events page (both under Resources or on the Home page) you will see a flyer for the above.
Category: About CML

Replies: 0

Last updated: 6 November 2015
sandy craine on 4 November 2015

Category: Getting help

Replies: 1

Last updated: 6 November 2015

UK Patient Day- 14th November
by sandy craine (Nov 6)

Registration is now closed. For those of you who cannot make the day there will be a webcast of the conference - Link will be provided as soon as it is live, both here and on our Facebook page.

by sandy craine (Nov 4)

http://www.cmlsupport.org.uk/node/984
There are just 2 places left for the Patient Day at Hammersmith Hospital, London.
If you would like to grab them call or email Mandy Sale asap. on
a.sale@
Category: Getting help

Replies: 1

Last updated: 6 November 2015