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tartancaddy on 29 November 2011

Category: Uncategorised

Replies: 6

Last updated: 1 December 2011

back to fitness!!
by david_a (Dec 1)

Hi all,
I run 10km apx 3 to 4 times a week, but this has reduced recently due to winter weather and colds!
I can do 10km in apx 50 mins.
Im 35 and started around 3 running around months ago.
I was

by marsy (Dec 1)

Hi Fellow CML'ers,
I just want to re-iterate Sandy's point about keeping fit and hope you don't mind me sharing my experience with taking TKI;s
Just prior to beng diagnosed in

by cmlblogger (Nov 30)

Sandy - sounds like a plan :)
and BTW - my lunch time run in the winer sunshine was great
9.3Kms at just under 11KM/h
http://runkeeper.com/user/robmargel/activity/61601801
Rob

by sandy craine (Nov 30)

Hi Rob... good to hear the change to dasatinib has helped towards you acheiving a better level of fitness. Walking/running/jogging has a positive effect on quality of life- especially when taking
Category: Uncategorised

Replies: 6

Last updated: 1 December 2011
sandy craine on 29 November 2011

Category: Uncategorised

Replies: 1

Last updated: 29 November 2011

Gareth's message reposted from below
by sandy craine (Nov 29)

Dear Gareth... your GP is right to be angry. You are not getting the specialist care you need. He/she should refer you to a more specialist centre who know about the side effect profile of imatinib

by sandy craine (Nov 29)

submitted by Gareth84 on Mon, 28/11/2011 - 18:53.
Hello everybody. I've just been reading thru these posts and thought I would tell my story and see if anybody has any advice
Category: Uncategorised

Replies: 1

Last updated: 29 November 2011
Graham Richards on 28 November 2011

Category: Uncategorised

Replies: 1

Last updated: 29 November 2011

Anthony Nolan
by marsy (Nov 29)

An additional point to note and relevant to people visiting this site, is that the Leukaemia & Lymphoma Research charity is also one of the groups hoping to be selected by the Football

by Graham Richards (Nov 28)

Hi
I am not sure if I am posting this on the correct page, however if wrongly posted maybe somebody could let me know. I have just been informed about the following:
Anthony Nolan has been
Category: Uncategorised

Replies: 1

Last updated: 29 November 2011
tartancaddy on 26 November 2011

Category: Uncategorised

Replies: 1

Last updated: 26 November 2011

birmingham local support group
by nigel (Nov 26)

Hi Gary, i am in north birmingham and think it would be good if a few were interested to meet up and have a chat / share experiences etc, anyone else interested ?
Nigel

by tartancaddy (Nov 26)

Hi Guys

I live in warwickshire and was wondering if anyone was willing to form a sort of local support group in and around the Birmingham area to possibly meet up and swap
Category: Uncategorised

Replies: 1

Last updated: 26 November 2011
ni2i on 24 November 2011

Category: Uncategorised

Replies: 2

Last updated: 24 November 2011

New PCR result
by david_a (Nov 24)

well done Naomii, hope you are celebrating!! Your well on track!
I got my latest PCR result yesterday = 0.006%
My results are dx july 2010 = 53%
3 months = 14%
6 months = 0.07%
9 months = 0.

by sandy craine (Nov 24)

Well done Naomii, looks like you are on track and will get a zero or two next time.
Best wishes,
Sandy

by ni2i (Nov 24)

Hi All
Hope your well.
I had my 3rd PCR result today and i'm quite happy. Here are my results so far:
Feb 2011- 96%
May 2011- 36%
Aug 2011-5.5%
I know they are 3 months behind but i am a very
Category: Uncategorised

Replies: 2

Last updated: 24 November 2011
nigel on 24 November 2011

Category: Uncategorised

Replies: 4

Last updated: 25 November 2011

Been on Imatinib for a month seeing Haematologist what should i have achieved ?
by nigel (Nov 25)

Thanks all, glad going well Jo, yes seems we ar same point, i'm at docs tomorrow after 4 weeks Glivec, will see how the bloods are.
Keep up the good work ! Nigel ;)

by joflo (Nov 25)

Hi Nigel
Sounds like I'm around the same timing as you- I've been on the Glivec 3.5 weeks precisely and had my clinic meeting yesterday with my consultant. You're right it's all

by Richard42 (Nov 25)

Hi Nigel
The general guide is to achieve complete haematological response within 3 months though many do it well before that. So, if all your counts are normal this time that's as good an

by ni2i (Nov 24)

Hi Nigel
I'm quite new to all this myself so i am sure others will have better advice but i can share my own experience so far. After a month of Glivec i had reached Heamatological response but
Category: Uncategorised

Replies: 4

Last updated: 25 November 2011
ian hinley on 23 November 2011

Category: Uncategorised

Replies: 2

Last updated: 25 November 2011

Durable complete molecular remission of chronic myeloid leukemia following dasatinib cessation, despite adverse disease features
by sandy craine (Nov 25)

Hi Ian... thanks for this encouraging article. I have put it on the home page.
Best wishes,
Sandy

by Richard42 (Nov 23)

And NICE challenged the effectiveness of dasatinib in second line....

by ian hinley (Nov 23)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208693/
Durable complete molecular remission of chronic myeloid leukemia following dasatinib cessation, despite adverse disease features
David M. Ross,1,
Category: Uncategorised

Replies: 2

Last updated: 25 November 2011
Belinda Whitting on 22 November 2011

Category: Uncategorised

Replies: 7

Last updated: 28 November 2011

Results going the wrong way
by Belinda Whitting (Nov 28)

Hi sandy thank you so much for your help. A year ago my husbands bcr abl was 0.17 haemoglobin 13.4 White count 4.7 platelets 204. Thank you. Belinda.

by sandy craine (Nov 28)

Dear Belinda,
do you have the previous result to compare this one with? 0.79% is still a molecular response but you would need to know how much the 'rise' was to assess whether there is any

by Belinda Whitting (Nov 27)

Thank you everyone for taking the time to answer my questions your all very kind. Sandy I have found out my husbands BCr abl was showing to be 0.79? Thank you.x

by ruddoug09 (Nov 25)

The advice you've already received is spot on, blips can and do happen. My bcr-abl was coming down nicely since my dx last year and all of a sudden the results started going the wrong way
Category: Uncategorised

Replies: 7

Last updated: 28 November 2011
ni2i on 21 November 2011

Category: Uncategorised

Replies: 2

Last updated: 22 November 2011

PCR Help
by ni2i (Nov 22)

Thank you Sandy very reassuring as always will let you know how i get on.
Take care
Naomii x

by sandy craine (Nov 21)

Hi Naomii,
First point (and I think you have already said this) your pcr's are showing you have a good response so far.
Your May pcr result showed an 'optimal response' of approx. 60%

by ni2i (Nov 21)

Hi All
Hope you are all well, I am bit nervous as i get my 2nd PCR result on Thursday and was wondering what i should be looking for. I only have to see my consultant every 3 months so have
Category: Uncategorised

Replies: 2

Last updated: 22 November 2011
jackieb38 on 19 November 2011

Category: Uncategorised

Replies: 14

Last updated: 16 December 2011

AMAZING NEWS!!
by manadan71 (Dec 16)

Jackie, this is my first ever post on this site, although i have been lurking for many years!!! I had to register just so i could tell you how thrilled i am to hear this. I read your post a couple

by Belinda Whitting (Nov 27)

Fab news. Hope it all goes well.xx

by Richard42 (Nov 23)

Fantastic news Jackie. So pleased to hear this. Another success story for dasatinib. Very very best of luck with the transplant. Richard.

by Janet (Nov 22)

Dear Jackie
I am so so pleased for you - what fantastic news!!!! And yes, what a rollercoaster you have been on......
The very best of luck with your transplant, and don't forget to let us all
Category: Uncategorised

Replies: 14

Last updated: 16 December 2011
nigel on 19 November 2011

Category: Uncategorised

Replies: 4

Last updated: 20 November 2011

Allopurinol and how do they test a brother for stem cell match
by sandy craine (Nov 20)

Hi Nigel... allopurinol - I was taking this for around 3 weeks following start of 400mg imatinib. so as Chris says you will probably be taken off this very soon as long as your white cell count is

by cdw5000 (Nov 20)

Nigel,

I'm a little surprised too you've been on allopurinol for that amount of time, although from my experience that's not excessive. I think i was on it for 4-5 weeks overall.

by Pennie (Nov 19)

Hello Nigel
Allopurinol helps bring the white cell count down, not sure how long I took it for - about 4 weeks I think. Wonder where in the country you are? There are CML specialist centres

by jackieb38 (Nov 19)

Hiya Nigel,
I can't quite remember how long I was on Allipuinol when first diagnosed, I think it was a few weeks.
As for testing your brother to see if he is a match it is just a simple blood
Category: Uncategorised

Replies: 4

Last updated: 20 November 2011
sandy craine on 16 November 2011

Category: Uncategorised

Replies: 1

Last updated: 16 November 2011

CML: Mechanisms of Resistance & Treatment
by sandy craine (Nov 16)

Apparently the link does not take you to the full article.. try this link to the PDF
http://download.journals.elsevierhealth.com/pdfs/journals/0889-8588/PIIS0889858811001018.pdf
Sandy

by sandy craine (Nov 16)

for those of you who were at the Seminar in Cardiff, this extensive article refers to a lot of the issues discussed in Prof. Apperley's excellent presentation.
Take a look at the home page for
Category: Uncategorised

Replies: 1

Last updated: 16 November 2011
kate32 on 15 November 2011

Category: Uncategorised

Replies: 8

Last updated: 18 November 2011

Bile Reflux
by sandy craine (Nov 18)

Hi kate... just thought of another complimentary thing you could try... fresh ginger root is fantastic for dodgy diegestive tract stuff... or your could make a lemon and fresh ginger tea, which is

by kate32 (Nov 17)

Hello all and thanks for the further messages.
I have spoken to my drugs nurse as I am on a the SPIRIT trial, she is really nice and helpful. She has spoken to my

by liz (Nov 17)

Hi, Kate
If you feel like no meds are working, there is a small op that can be performed. Ask your consultant or GP to refer you to a gastro doc. It maybe something worth looking into, especially if

by cdw5000 (Nov 17)

Kate,
I'm sorry to hear you're having issues - I too am having the same issues on tasigna and i know it's not much fun. It sounds like you're doing all the right things. My reflux/
Category: Uncategorised

Replies: 8

Last updated: 18 November 2011
Basil from RSA on 15 November 2011

Category: Uncategorised

Replies: 3

Last updated: 15 November 2011

News from Basil in South Africa
by Basil from RSA (Nov 15)

Hi Richard,
The approach I took was not as cautious as the STIM trials. PCR tests were only done every 3 months and what we were looking for was a continous upward trend in the results. I did have a

by sandy craine (Nov 15)

Hi Basil,
good news from you and thankyou for sharing it with us here. I will email you with some contact details- likewise Richard- so you can contact and update clinicians with your personal

by Richard42 (Nov 15)

Brilliant news, Basil. I've been following your results for a while...
As a potential candidate for a stop/reduce trial in the UK, I'm interested to know how often you are seen (

by Basil from RSA (Nov 15)

Hi all,
Just a little update on my status after stoppimg Imatinib at the end of April 2009 due to a few unbearable side effects.
Latest Quantitative PCR Test. (9/11/2011)
"Not detected
Category: Uncategorised

Replies: 3

Last updated: 15 November 2011
EmChops on 9 January 2012

Category: Uncategorised

Replies: 5

Last updated: 10 January 2012

May need to have a transplant if PCR results are not below 10%
by Annie Kennedy (Jan 10)

Emma
I do not have the answer to this but just wanted to say I was diagnosed 8 years ago, treated with imatinib and had even for those days a sluggish response _ started off with 100% PCR then down

by Lyndsey (Jan 9)

Hi Emma.
Im sorry to hear that you have this added stress since your last visit to your consultant. But hopefully if you have had a good run on nilotinib then this PCR will be below 10%. I am no

by sandy craine (Jan 9)

Hi Emma... I see why you are reeling! I think the generalised answer you got from Prof. Goldman might have been because you prefaced your question with the advice that your doctor had already given

by EmChops (Jan 9)

Thanks for the response Sandy,

I am at The Churchill hospital in Oxford, my consultant was responding to the advice now given by the Hammersmith with this figure of 10% at 3 months being the
Category: Uncategorised

Replies: 5

Last updated: 10 January 2012
Carol on 13 November 2011

Category: Uncategorised

Replies: 6

Last updated: 28 November 2012

NEW YEAR meeting of the Hammersmith Patient/ Carers support group
by Sunnyleon (Nov 28)

Researching ways to celebrate Chinese Brand new Year with family and friends? This Web site tells you Many ways to get a happy, healthy and prosperous Chinese Brand new Year! http://www.

by Carol (Dec 12)

Hi,
Thanks for asking about the Patient/Carer Meeting at Hammersmith on Saturday 7th January 2012. Anyone can attend our meetings patients & carers welcome but this meeting in particular is

by kylaswee (Dec 12)

Can anyone come and join with the meeting?

by RachaelB (Nov 16)

Snow willing, I'm hoping to make this one so see you there
Category: Uncategorised

Replies: 6

Last updated: 28 November 2012
bobosbo on 12 November 2011

Category: Uncategorised

Replies: 6

Last updated: 14 November 2011

Patient Seminar
by chrissie (Nov 14)

I would like to thank Sandy and all the speakers and organisers who gave up their time on Saturday to make the seminar so worthwhile.
regards to all
Chrissie

by sandy craine (Nov 14)

I agree that the seminar was good this year with very clear presentations- particularly from Professor Apperley. Professor Steve O'brien's talk about the STIM trials and the similar trial

by TheCoopers (Nov 13)

Excellent day, very much enjoyed it, and all the talks were very worthwhile attending. Please pass on our thanks to Andy and all the staff at UHW, they must have worked so hard to make all the

by Anonymous (Nov 13)

Thanks Bob likewise nice to put a face to a name, thanks for making me so welcome. I have had a look for the Hammersmith date in Jan but could only find 2011's, do you have any details as yet ?
Category: Uncategorised

Replies: 6

Last updated: 14 November 2011
david_a on 8 November 2011

Category: Uncategorised

Replies: 3

Last updated: 29 November 2011

Side effects - Why?
by keith Pratt (Nov 29)

Interesting thoughts there, now can I throw a spanner into your thoughts. I took Glivec from 2001 through to 2007. I did find odd effects, such as my hair actually changed colour, (much nicer than

by tartancaddy (Nov 26)

Hi Guys

I live in warwickshire and was wondering if anyone was willing to form a sort of local support group in and around the Birmingham area to possibly meet up and swap stories or

by Olivia (Nov 9)

I share your ignorance about why the side effects occur, and in the form they do. I also wonder if anyone knows why they should be intermittent - for instance, I have had occasional hand

by david_a (Nov 8)

Hello all,
I am on Glivec 400mg and am currently on a PCR of 0.009%.
I have minimal side effects but suffer from some of the more common side effects which are occasional fatgiue, hand
Category: Uncategorised

Replies: 3

Last updated: 29 November 2011
clairebear on 8 November 2011

Category: Uncategorised

Replies: 9

Last updated: 29 November 2011

hello newbie
by sandy craine (Nov 29)

Dear Claire,
As promised here are the contact details for the Leukaemia society in Australia person working in Perth.

Sarah Langmead
Support Services Manager
The Leukaemia Foundation

by clairebear (Nov 28)

thanks everyone for all the helpful comments and support , not to mention the hugs well recieved!!
Its been a while apologies, had a mystery virus and was wiped out for best part of a week , then

by Kate (Nov 15)

Hi Claire,

I was in your exact situation just over a year ago!

I am a 37 year old from Wales and I've been living in Sydney for nearly 5 years.

I was diagnosed in Sept 2010. As you

by joflo (Nov 10)

Just wanted to say Hi and glad you found the forum. I was diagnosed this 14th Oct just gone so am also new to it all too ( lovely 40th birthday present!). I discovered this site by chance
Category: Uncategorised

Replies: 9

Last updated: 29 November 2011
sandy craine on 3 November 2011

Category: Uncategorised

Replies: 9

Last updated: 15 November 2011

NICE: FAD Appeal
by sandy craine (Nov 15)

We have to wait until 2nd week in January before we know the outcome and how the Appeal panel have judged. If they find in our favour they will ask for the the original MTA to be re-appraised

by irenekallison (Nov 15)

Has there been an update that I have missed?
Irene

by Olivia (Nov 4)

Just adding to the list of well-wishers! Hope it goes better than well, if that's possible?

by joflo (Nov 4)

Good luck Sandy and Co hope the right outcome is achieved . Jo
Category: Uncategorised

Replies: 9

Last updated: 15 November 2011