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Barbs on 22 September 2011

Category: Uncategorised

Replies: 4

Last updated: 28 September 2011

Please watch this - very moving
by EmChops (Sep 28)

Hi Carol

Thanks for your lovely post. Sorry I have not been on the site for a while and only just spotted it! I have felt rather awful starting NIlotinib again this time, I had quite an upset

by Carol (Sep 22)

So happy to hear your good news that you can go back on Nilotonib glad to hear your platelets have come up so you can re start.
Let us know how you get on with Nilotonib now you have started again

by EmChops (Sep 22)

but then most things do.
Just found out today i can go back on Nilotinib after 3 weeks off for platelets being low, so rather emotional anyway!
Love to all on CML awareness day, we can do this.
Roll

by Janet (Sep 22)

Thank you for posting this link - I have just watched the clip and found it so encouraging and so caring. It made my spine prickle!! :-)
With love to all on CML Awareness Day
Janet x
Category: Uncategorised

Replies: 4

Last updated: 28 September 2011
ADJL on 22 September 2011

Category: Uncategorised

Replies: 1

Last updated: 24 September 2011

International CML Awareness Day
by sandy craine (Sep 24)

Dr. Janet Rowley discovers the translocation between chromosomes 9 and 22.
http://www.youtube.com/watch?v=gIANU4-fb-w&hd=1
CML Society's video: Patient Testimonials
http://youtu.

by ADJL (Sep 22)

Dear Friends,
I wanted to wish you all the first of many International CML Awareness Days. Not sure if it's official yet, but it's a great idea and coincidentally marks the two year
Category: Uncategorised

Replies: 1

Last updated: 24 September 2011
Arif ul Rehman on 21 September 2011

Category: Uncategorised

Replies: 1

Last updated: 21 September 2011

skin melasma
by sandy craine (Sep 21)

Hello Arif, welcome to this forum.
I am pleased that you are responding to therapy with imatinib (Glivec). Although this condition is not serious I can understand that it must be distressing. I have

by Arif ul Rehman (Sep 21)

Dear Members,
I'm Arif (New member of this forum), 24, male from Pakistan and suffering from CML since last 7 years, however, due to proper treatment i-e getting Glivec since 2005, I'm good
Category: Uncategorised

Replies: 1

Last updated: 21 September 2011
sandy craine on 18 September 2011

Category: Uncategorised

Replies: 1

Last updated: 19 September 2011

Updated FAQ
by chrissie (Sep 19)

What a positive report. As she says, exciting times ahead for CML patients.This is a real morale booster. Thanks to Sandy and Cheryl-Anne for posting this,
Chrissie

by sandy craine (Sep 18)

I have just updated the FAQ page and also added a new section called CML Now? EHA 2011... click on the image and then on the next page click on EHA report.
Cheryl-Anne of the CML Society has written
Category: Uncategorised

Replies: 1

Last updated: 19 September 2011
chrissie on 17 September 2011

Category: Uncategorised

Replies: 2

Last updated: 18 September 2011

Zavie
by chrissie (Sep 18)

Thank you, Sandy. This is heartening news and to be in a specialist rehabilitation unit will surely be benificial to him and his family. Even better to hear that he is able to think about

by sandy craine (Sep 17)

This is the last update re Zavie from Giora of the CML group in Israel who is in touch regualrly with Zavie's family. This news is from 4 weeks ago, I have not heard anything since then.

by chrissie (Sep 17)

Sandy, I have been wondering if there is any news on Zavie's progress after his stroke? He has done so much for so many of us and his zero club has been such a positive support.
If you are in
Category: Uncategorised

Replies: 2

Last updated: 18 September 2011
vickiep on 16 September 2011

Category: Uncategorised

Replies: 3

Last updated: 16 September 2011

Nearest specialist centre
by sandy craine (Sep 16)

Dear Vickie... sorry to hear of your friends diagnosis with AML. I would say that AML, as I am sure you know, is a very different disease from CML although CML in blast stage is similar- but I seem

by vickiep (Sep 16)

Thanks Ali, he was admitted in the night as an emergency and had BMB today. All he knows at the moment is that he has AML...Now that you have kindly shared info with me, I can call the hospital and

by Ali Loram (Sep 16)

Hi Vickie,
Sorry to hear about your friend, he has been through the mill.. I am not too far away from newquay (I am in Exeter) & as far as I know the nearest specialist hospital for him

by vickiep (Sep 16)

Can anyone help me please...where is the nearest specialist hospital to Newquay? A very dear friend of 45 years has been admitted to Treliske Hospital and been told he has AML. Apart from being
Category: Uncategorised

Replies: 3

Last updated: 16 September 2011
tartancaddy on 13 September 2011

Category: Side effects

Replies: 13

Last updated: 22 June 2015

side effects of imatinib
by malisia (Jun 22)

hi gary can you give me any information on what was done to stop the bleeding in the back of the eye anything at all you can give will be greatly appreciated with how they treated it

by tartancaddy (Sep 23)

Thanks Barbara, this give me a great deal of hope for the future. Good luck with staying free!

by claudia (Sep 21)

Dear Gary,
I remember these side effects very well! I suffered with them when i first started taking glivec. But after a few months i got
used to them and after a few years i did not notice any of

by Barbs (Sep 16)

You can also contact me privately
Category: Side effects

Replies: 13

Last updated: 22 June 2015
Pennie on 10 September 2011

Category: Uncategorised

Replies: 3

Last updated: 11 September 2011

Living 10 years with CML
by vickiep (Sep 11)

Beautifully put Pennie...four years down the line and my results are not yet as good as yours, but....
Have a lovely weekend!!!
Vic
xx

by Moiraw (Sep 11)

Have a great weekend Pennie. You're an inspiration.

Regards, Moira

by skiinglaketahoe (Sep 10)

Hi Pennie

Congratulations on reaching such a milestone. I hope that you have a great weekend and manage to celebrate.
Life is frail as we can all see and we should celebrate when and

by Pennie (Sep 10)

This weekend I am celebrating my 10th CML anniversary. I'ts been a bumpy ride and 'Luke the Dragon' has really given me some difficult times. Now I can reflect back on those years
Category: Uncategorised

Replies: 3

Last updated: 11 September 2011
jackieb38 on 9 September 2011

Category: Uncategorised

Replies: 12

Last updated: 20 September 2011

My CML/AML is now terminal
by michelle (Sep 20)

Dear Jackie,
I feel so sad, reading your post. I echo everyone else here, who has replied to you. You are having to face the worst kind of news the doctors can give us and your family. I am at

by marsy (Sep 13)

Dear Jackie,
As you can see from everybody's comments, we are all thinking of you at this time. As one or two people have mentioned , please do not give up and explore any possible avenues

by EmChops (Sep 13)

I am so sorry to hear of your diagnosis. You have been very kind to me and others on this forum. I hope your consultant can find some treatment for you, I keep everything crossed.

Thinking of

by ni2i (Sep 12)

Jackie and family
I am so sorry to hear about your news, it has really opened my eyes to whole scary world of CML, i never knew about AML and that it could develop. I can't put into words how
Category: Uncategorised

Replies: 12

Last updated: 20 September 2011
JONESYGEEZ on 7 September 2011

Category: Uncategorised

Replies: 2

Last updated: 8 September 2011

CML TO AML!!!!!? CONFUSED
by Barbs (Sep 8)

I'm so sorry to hear about your dad.
As has already been said, some unlucky patients go on to develop AML aswell as their CML.
I don't suppose that I can really say anything to comfort you,

by jackieb38 (Sep 7)

Hi,
I'm really sorry to hear about your dad, my deepest sympathies go to you and your family.
I was diagnosed in Aug last year with CML but in June this year i went into blast crisis and was

by JONESYGEEZ (Sep 7)

Hi guys, as some of you know my dad was diagnosed with CML back in Feb.
He passed away last friday.
The cause of death is now acute myloid leukemia on the DR report
1. Could they have been wrong and
Category: Uncategorised

Replies: 2

Last updated: 8 September 2011
Barbs on 7 September 2011

Category: Uncategorised

Replies: 1

Last updated: 10 September 2011

22nd september International CML awareness Day
by sandy craine (Sep 10)

The CML Support Group continues fighting to ensure equal access to TKI therapy for all patients and ensure access to the best possible clinical care and monitoring. As a co-founder and funder of the

by Barbs (Sep 7)

Please sign this déclaration/petition :
http://www.cmladvocates.net/index.php?option=com_petitions&view=petition&id=90&Itemid=119&limitstart=520
This year is the first time
Category: Uncategorised

Replies: 1

Last updated: 10 September 2011
sandy craine on 6 September 2011

Category: Uncategorised

Replies: 22

Last updated: 11 November 2011

National CML Patient Day, November 12th, Cardiff, Wales
by bobosbo (Nov 11)

Hello Des,
Here is the link to a copy of the Agenda.
See you there
Bob

http://www.mpdmeetings.org/patient-conference.aspx

by Des (Nov 10)

I am coming from Swansea, so not too far. Is there an agenda and timetable yet?

by chrissbb (Nov 8)

Hi All,
I have posted a topic in the forum regarding Apricot Kernels. I am unable to attend the National CML patient day, but was wandering if anyone was going could please ask the question to one

by Ali Loram (Nov 6)

Many thanks Sandy,
I found his email address yesterday & mailed him. Hope to see you there too, we will arrive on the Friday.
Category: Uncategorised

Replies: 22

Last updated: 11 November 2011
technician69 on 6 September 2011

Category: Uncategorised

Replies: 3

Last updated: 7 September 2011

Becky had a baby boy!!!!
by technician69 (Sep 7)

Thank you Sandy, yes she is back on Dasatinib now and feeling the side effects quite badly. Sue, I have tried to respond on your Caringbridge site and was having trouble, hope you are well.

by skiinglaketahoe (Sep 6)

Hi Dawn
I'm glad to hear from you; I was wondering how Becky was doing. Enjoy the new baby!
love
Susan

by sandy craine (Sep 6)

Many congratulations to Becky on the birth of her baby, Joseph. I do hope she is now back on therapy? and all his well with her. This is wonderful news and I am sure it will help those who are

by technician69 (Sep 6)

Hi everyone, I have not been on here for a while as Becky (19) was responding well to Dasatinib with no adverse side effects. She did however, find out when she was 28 weeks that she was pregnant
Category: Uncategorised

Replies: 3

Last updated: 7 September 2011
Moiraw on 5 September 2011

Category: Uncategorised

Replies: 4

Last updated: 6 September 2011

Transplant Recovery
by skiinglaketahoe (Sep 6)

Hi Moira

I am almost 4 years post transplant. My story is on the diary page. It is such a hard question to answer and it is something that is so individual for everybody. I had a very easy

by Moiraw (Sep 5)

Thank you very much for your responses. I will tell Alastair everthing you told me, I and Alastair both knew that he was in for a long road to recovery but it's always good to hear from others

by sandy craine (Sep 5)

Hello Moira, there are a few members on here who have had SCT's... Michael being on and me being another.
100 days post transplant is the first milestone. Congratualtion to Alastair for reaching

by michael (Sep 5)

Hi Moira doing well haemotology wise at post transplant 100 is great news, bone marrow transplant's effect people in different ways and its early days, yes its a long recovery period.
Category: Uncategorised

Replies: 4

Last updated: 6 September 2011
Steven D on 3 September 2011

Category: Uncategorised

Replies: 9

Last updated: 21 September 2011

FAD APPEAL
by sandy craine (Sep 21)

Hi Keith,
thanks for the offer of help. However, the die is now cast and our grounds for appeal, as based on hydroxicarbamide being an inappropriate comparator, have been accepted by the Chair of

by keith Pratt (Sep 21)

Hi Sandie
So,what can be done to support the appeal? I am on Nilotinib right now, do they need living proof that it works, if so I'm your man.
Get me on e-mail or telephone if needed. We

by sandy craine (Sep 18)

Hi Chrissie, I have updated the 'About us' on the left hand menu and it now signposts our postal address more clearly.
Should anyone want to donate, cheques should be made payable to

by chrissie (Sep 18)

Hi Sandy

This is, indeed, good news, and as others have said the workload and extra expense must be big. If someone doesn't shop much online, how can we donate to CMLSg? If you could
Category: Uncategorised

Replies: 9

Last updated: 21 September 2011
Smahmood on 28 August 2011

Category: Uncategorised

Replies: 3

Last updated: 28 August 2011

Hammersmith Hospital
by Smahmood (Aug 28)

Thank you very much for the help/info.

Regards

Shaz

by Bhiru (Aug 28)

I agree with Richard a hundred percent!
The whole team there are great, and the actual clinic is a nice comfortable space so waiting around isn't as bad. They are also flexibe with timings so if

by Richard42 (Aug 28)

Hi Shaz
Don't worry - they're all good
Richard

by Smahmood (Aug 28)

Hello

I have recently changed hospital from Kings Hospital to Hammersmith Hospital. My first appointment at Hammersmith is next month. Does anyone know a good CML specialist at Hammersmith
Category: Uncategorised

Replies: 3

Last updated: 28 August 2011
sandy craine on 23 August 2011

Category: Uncategorised

Replies: 5

Last updated: 6 September 2011

Local press interviews re: NICE FAD
by sandy craine (Sep 6)

Hi Neil,
I am not sure if anyone did manage to get interviews with Local press. As in my previous post I know that Bob and Chris were going to try to make contact with Milton Keynes and the mid-east

by ruddoug09 (Sep 5)

Hi Sandy
I'm happy to be conatced for the Newcastle area.
Neil

by sandy craine (Aug 24)

I am sure you all have your view on the FAD but for those of you who wish to communicate how you/we feel about the potentially disasasterous situation for UK CML patients in England and Wales should

by sandy craine (Aug 24)

Hi Chris,
I have a list of contact details but I am not sure which of the areas you would come under. I will email you privately with the contacts that I think might be interested and if you want
Category: Uncategorised

Replies: 5

Last updated: 6 September 2011
Lyndsey on 22 August 2011

Category: Uncategorised

Replies: 3

Last updated: 5 September 2011

Uk seminar in cardiff
by TheCoopers (Sep 5)

My husband (with CML) and I will certainly be attending, we live just outside Cardiff. I'll keep checking this site for when we can register/get more info.
Theresa Cooper

by chrissie (Aug 30)

I'm thinking of attending this, too, and will keep an eye on the site for further information,
Best to everyone,
Chrissie

by sandy craine (Aug 23)

Hi Lynn, I would encourage you to attend, especially as you are newly diagnosed.
I will update here on the forum as soon as I hear from the organisers in Cardiff about the final agenda and

by Lyndsey (Aug 22)

Hi

I was wondering if anyone could give me any information about the seminar on 12th November in cardiff. I am from Glasgow and would really like to attend but having to look at flights, train
Category: Uncategorised

Replies: 3

Last updated: 5 September 2011
Barbs on 19 August 2011

Category: Uncategorised

Replies: 1

Last updated: 19 August 2011

3rde PCR result
by sandy craine (Aug 19)

Hi Barb... I would agree with your doctor. As your result is from a much more sensitive machine it is not surprising that you have a slightly more positive ratio. I always try to remind myself that

by Barbs (Aug 19)

Just had 3rd PCR result since stopping Glivec - 0,003 positive. My doctor says not to worry because it was done on a more sensitive machine 140 953,6 BCR-ABL transcripts instead of 20 000 on usual
Category: Uncategorised

Replies: 1

Last updated: 19 August 2011
Des on 19 August 2011

Category: Uncategorised

Replies: 3

Last updated: 25 March 2014

there's an app for that!!!
by Thomaskk (Mar 25)

What is the latest on your off TKI journey . Very curious :)
Regards
Thomas

by sandy craine (Aug 19)

Hi Des... wonderful to read your update. I am amazed that your CML is under control without drug therapy- presumably it is being controlled by your own immune system! This is the only explanation

by Barbs (Aug 19)

Thanks for your post - I came off Glivec in may - just got 1st slight positive result back - 0 003.
Will get another PCR done before deciding what to do; Basil from South Africa was the same

by Des (Aug 19)

there's an app for the ipad, My CML Tracker, which is very informative and free to install. It comes from Novartis, so is easy to understand and credible. For those interested, its worth looking at
Category: Uncategorised

Replies: 3

Last updated: 25 March 2014