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Susan Cole on 11 February 2017

Category: Uncategorised

Replies: 1

Last updated: 16 February 2017

Very neutropenia
by sandy craine (Feb 16)

Hi Susan,
Sorry you are having a rotten time of it. Unfortunately this is the time of year that even those of us with a decent neutrophil count suffer from colds infections etc. I am surprised that

by Susan Cole (Feb 11)

I have been having very low blood counts using dasatinib. In the past 6 months I've gone from 100mg to 80mg to 50mg daily, to now off any since Jan. 10th. As of January 24 I have a virus w/
Category: Uncategorised

Replies: 1

Last updated: 16 February 2017
sg3 on 13 February 2017

Category: Side effects

Replies: 1

Last updated: 16 February 2017

Nilotinib side effects
by sandy craine (Feb 16)

I suggest your friend talks with his clinician as the side effects you describe seem to be quite severe. It may be that they do diminish over time as most side effects do.... however, if his quality

by sg3 (Feb 13)

My friend is on 800mg of nilotinib a day, since Jan 17. May-Dec 16 previously 400mg of Imatinib a day, but had to change as didn't reach 2nd stage remission.
He has a headache through the left
Category: Side effects

Replies: 1

Last updated: 16 February 2017
xdesireemartinez90 on 22 July 2016

Category: Side effects

Replies: 11

Last updated: 7 February 2017

6 year old with imatinib bone pain
by EvaH (Feb 7)

In case its ever useful there is a world specialist in CML based in Galway....Prof Micheal O Dwyer.

by Irishmammy (Oct 10)

Thanks David, it was a very useful discussion! i really appreciate you making the link.

by David Fitz (Oct 1)

If you don't get the answers you want on the dental front let me know. My sister is a paediatric dental consultant in Crumlin hospital and is much more clued up on CML than your average dental

by Irishmammy (Oct 1)

Janey Mac!
Thanks David for the tips.
It's still all a bit new to us, we were muddling through and trying to go on as normal even though it will never BE normal.
We have dental on Wednesday to
Category: Side effects

Replies: 11

Last updated: 7 February 2017
TheCoopers on 26 July 2016

Category: Uncategorised

Replies: 17

Last updated: 7 February 2017

Internal Eye Bleeds
by EvaH (Feb 7)

Longer update in case of interest:
http://www.cmlsupport.org.uk/thread/11339/update-my-eye-issues-and-side-...

by EvaH (Jan 19)

Update:
Now 20 days after I was almost clear, the vision in my left eye is worse than ever and not improving. I have been told I have bleeds in my right eye too but so far they have not been causing

by nigel (Jan 12)

Hi sorry to hear this. I saw a local optician who could not see the issue and so saw an eye specialist that was able, with better equipment to look at he back of the eye better. I had the repair to

by EvaH (Jan 12)

Urgh....am a bit scared now. I was told it was a bleed not a detachment but I do get that tired eye ache that you spoke of.

After a week of bed rest my eye was pretty much 100%, then I did
Category: Uncategorised

Replies: 17

Last updated: 7 February 2017
Tabitola on 6 June 2016

Category: Reproductive health

Replies: 18

Last updated: 7 February 2017

Mothering a child with CML
by EvaH (Feb 7)

Wonderful news!!

by Tabitola (Feb 6)

Hahahahahaha. Chrissie dear I'm having sleepless nights for sure but unfortunately can't enjoy them.

by Tabitola (Feb 6)

Thank you Sindy. She is my miracle baby.

by Tabitola (Feb 6)

Thank you dear. Her name is Wilmah. I can't get my eyes off her.
Category: Reproductive health

Replies: 18

Last updated: 7 February 2017
debjal on 3 February 2017

Category: Blood tests

Replies: 3

Last updated: 7 February 2017

PCR reporting
by chrissie (Feb 7)

My consultant asked me to talk to his genetics students (both BSc and MSc students) so they know
1) what they are testing in the lab belongs to an actual person and the importance of accurate

by sandy craine (Feb 4)

Hi, and many thanks for sharing this. I am amazed that someone would try to 'fob you off' with such a statement as 'you wouldn't understand the results'!.... and that this

by debjal (Feb 3)

After a few phone calls, it seems there is no change in reporting. Nurse has now rung me back and given me my results. Why or why do they treat patients like bloody idiots? All

by debjal (Feb 3)

Not sure if I have just been fobbed off by my local hospital. I usually ring up for my PCR results three weeks after they are done, and have always been given the result over the phone.
Category: Blood tests

Replies: 3

Last updated: 7 February 2017
Justyna on 1 February 2017

Category: Uncategorised

Replies: 2

Last updated: 2 February 2017

Improving immunity after a BMT
by Justyna (Feb 2)

Thank you Sandy. I knew about supplementation with vitamin C but vitamin D is a new one and I shall try it. Many thanks again.

by sandy craine (Feb 1)

Hi Justyna,
I also had a reduced intensity SCT but that was in 2003. I have had various upper respiratory tract infections over the years but fortunately not pneumonia. I currently have a heavy cold

by Justyna (Feb 1)

My husband had a reduced intensity BMT about 2.5 years ago. It went well but his immunity is worrying me as he was hospitalized twice last year with pneumonia first and another less serious chest
Category: Uncategorised

Replies: 2

Last updated: 2 February 2017
JackyWong on 25 January 2017

Category: Blood tests

Replies: 5

Last updated: 26 January 2017

A little bit worry about the qpcr result
by David Fitz (Jan 26)

Jacky,
You're doing great. It's already brilliant that you are keeping this close to your results. Too many people aren't savvy enough.
So, keep an eye on the PCR numbers but take

by JackyWong (Jan 26)

Thank you for your reply and hope your trail of stopping drug is successful. Sometimes, I have a dream for stopping drug when I reach 3 years pcru. But now... it may not be come true. I hope a cure

by JackyWong (Jan 26)

Thank you for your reply. Yes, it may have a lot of factors to affect the result. So I try to relax myself and don't think anymore.

by Richard42 (Jan 25)

Hi there
Your pcr still looks good to me.
For information, I was undetectable (0.000) from November 2009 until I went on the Destiny trial in April 2014. Since I've been on the trial (
Category: Blood tests

Replies: 5

Last updated: 26 January 2017
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