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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
claudia on 18 August 2011

Category: Uncategorised

Replies: 7

Last updated: 6 September 2011

Dasatinib side effects
by michelle (Sep 6)

Hi,
I too moved from Imatanib to Dasatanib in June this year after being on Imatanib since Nov 03. I found the first 2 months very hard. I had awful joint pain and Acne, although it did not effect

by claudia (Aug 24)

Thank you for all the good info! Claudia

by marsy (Aug 21)

Hi Claudio,
I was diagnosed last August and went straight onto the Sprit 2 trial on Dasatinib. I was concerned about side effects and had a chat with my consultant about taking one tablet in the

by brassman (Aug 21)

I'm not sure it really matters what time of the day you take your meds.
I started off taking them before bed to try to avoid feeling nauseous, but found I would lie awake waiting to feel
Category: Uncategorised

Replies: 7

Last updated: 6 September 2011
sandy craine on 18 August 2011

Category: Uncategorised

Replies: 5

Last updated: 23 August 2011

Leukaemia (chronic myeloid) - Dastatinib, nilotinib, imatinib (intolerant, resistant) (including partial review of TA70): FAD
by David (Aug 23)

I have just made time to read the NICE decision in full together with all the submissions made by everyone who responded to the consultation.
I am truly horrified. This an unfair and flawed process

by sandy craine (Aug 18)

Appeals process is complex and as Richard says we are trying to decide how best we can do this. We can only appeal on the issue of 'process' ...we are not allowed to use any arguments

by Richard42 (Aug 18)

There are appeal routes and I know Sandy is looking at those. I don't know for sure if they will but I would not be surprised at all if BMS (who make dasatinib) appeal.
I think you

by Bhiru (Aug 18)

So what can we do now to appeal this decision? Are there formal appeal routes or it is just a case of continuing with letters to MPs?
I feel strongly about this, and am not prepared to
Category: Uncategorised

Replies: 5

Last updated: 23 August 2011
Steven D on 18 August 2011

Category: Uncategorised

Replies: 2

Last updated: 19 August 2011

7 Years today since DX
by Barbs (Aug 19)

Hi Steve,
isn't it funny how we remember exactly what happened on the day of dx word for word?
Am glad to hear you're still doing so well - what's a zero between friends?
XXX

by sandy craine (Aug 18)

Hi Steven,
no matter whether you do achieve another zero, and I hope you do, you are in a good place 7 years on. How fortunate we live in a time of true innovation in the treatment of CML.

by Steven D (Aug 18)

Its exactly 7 years to the day and time when I was telephoned by my GP to come to his surgery and to bring a bag as I was being admitted to hospital.
I asked why and he told me that I had to many
Category: Uncategorised

Replies: 2

Last updated: 19 August 2011
Anonymous (not verified) on 17 August 2011

Category: Uncategorised

Replies: 1

Last updated: 17 August 2011

Travel insurance to America
by Richard42 (Aug 17)

Hi
I have annual insurance with my credit card which covers me for everywhere - it's a fairly standard policy in terms of benefits and didn't cost any more once I had CML: the way the policy

by Anonymous (Aug 17)

Has anyone travelled to the USA recently?
Trying to find an insurer that won't rip me off.
Any help appreciated.
Thanks Linda
Category: Uncategorised

Replies: 1

Last updated: 17 August 2011
spence11 on 17 August 2011

Category: Uncategorised

Replies: 13

Last updated: 5 September 2011

Holiday
by johnh (Sep 5)

Hi Richard,
Thanks very much for the response. That is very helpful.
Best regards, John H

by Richard42 (Sep 2)

Hi John
In answer to your question about Glivec holidays, there are a few studies on adherence and its relationship to molecular response. Perhaps the best is the study by David Marin (

by johnh (Aug 30)

Hi Sandy,
Can you give me the references to the documented evidence that Glivec holidays are not desirable. I am just about to have my routine consultation with my consultant and I am hopeful that

by SwanValleySue (Aug 29)

Hi

My suggestions - keep your drugs in the blister packs.
I carry my drugs with hand luggage .
For security - I do the below.
Have my travel medical certificate signed by doctor.
Category: Uncategorised

Replies: 13

Last updated: 5 September 2011
EmChops on 16 August 2011

Category: Uncategorised

Replies: 5

Last updated: 17 August 2011

Has anyone tried counselling?
by EmChops (Aug 17)

thank you so much for your comments, so nice to not feel alone.
i mentioned to the clinical trial nurse today about councilling and she is trying to get something sorted for me.
I have had white

by Pennie (Aug 17)

Hello Emma
I think counselling is an excellent idea. When I was first diagnosed, (10 years ago almost) I had counselling for some time. It really helped to have

by sandy craine (Aug 17)

Dear Emma,
I think this is probably a very good idea. Talking with someone who is 'outside' of personal family and friends/collegues etc means that you can explore/discuss feelings and

by Olivia (Aug 17)

When I was first diagnosed (nearly 2 years ago) I had sleeping problems, and my GP gave me a few sleeping pills - I took them for about three nights and hated the feeling the following day -
Category: Uncategorised

Replies: 5

Last updated: 17 August 2011
Carol on 11 August 2011

Category: Uncategorised

Replies: 15

Last updated: 27 September 2011

Leukaemia Patient/Carer Support Meeting Hammersmith
by chrissbb (Sep 27)

Hello,
I would just like to thank all concerned on our recent visit to the Hammersmith Support group.
Me & Tammy, Sharon & Dave, Frank & Sandra and Julie & Andrew were all made

by Carol (Sep 1)

Hi Sue,
It will be lovely to see both you & your husband at our meeting on the 17th can you let me have your email adddress so we can reserve 2 places for you both if you aren't able to make

by EmChops (Aug 31)

Hi sue

It will be good to meet someone else and chat about the Churchill, I do not know any faces there yet so hopefully be able to swap notes! See you on the 17th

Emma x

by LizzieD (Aug 31)

I am hoping to come to the patient/career meeting with my husband. We have not been for a while so it will be good to catch up with everybody. I would like to meet Emma as we both go to
Category: Uncategorised

Replies: 15

Last updated: 27 September 2011