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Richard Wilday on 8 April 2010

Category: Uncategorised

Replies: 1

Last updated: 8 April 2010

The Gift of a Decade
by yogiB (Apr 8)

You give us more recently dx ones - great hope Richard!

Thank you and may you enjoy another decade cml free.

Beth

by Richard Wilday (Apr 8)

The 28th of March this year marked the tenth anniversary of being diagnosed with CML. As it turned out the timing was perfect. Jerry's web site and this one had just started, providing a fund
Category: Uncategorised

Replies: 1

Last updated: 8 April 2010
Olivia on 8 April 2010

Category: Uncategorised

Replies: 5

Last updated: 14 April 2010

Edinburgh
by Olivia (Apr 14)

12 it is, then. I look forward to meeting you.

by Swede (Apr 14)

Fine for Tuesday. 12 prob. best for me. Sure we'll recognise each other with those puffy eyes...!

by Olivia (Apr 14)

Yes I would like to meet up, and as it happens I am going to WGH next Tuesday - it'll be 6 months - at 11.00. Shall I come to Maggies after that, say 11.45 - 12.00? How shall

by sandy craine (Apr 14)

Hi Olivia, I do hope you can get a group going... it is so important to be able to talk to others who are in the same situation. I am sure there are other members who are based in Edinburgh -
Category: Uncategorised

Replies: 5

Last updated: 14 April 2010
Pennie on 7 April 2010

Category: Uncategorised

Replies: 9

Last updated: 10 April 2010

New web site
by Ali Loram (Apr 10)

I am finding the same as some others, its difficult to see what posts have been read & also the page doesnt fit the screen so well. I have to move the curser back & forth to read the pages

by kestrel (Apr 9)

I have the same problem with the 'new posts' thing - I have to check all the dates on the posts to see when they were written and then try to work out when I last looked! The old site used

by irenekallison (Apr 8)

I have to adjust line length anyway but one can't have everything!

Irene

by zaviemiller (Apr 8)

This kinda works. Problem is that it doesn't adjust the line length to accomodate the increase in font size, so you have to keep moving the page left/right in order to see the entire page.
Category: Uncategorised

Replies: 9

Last updated: 10 April 2010
Carol on 6 April 2010

Category: Uncategorised

Replies: 3

Last updated: 7 April 2010

Patient Support Group Meeting at Hammersmith, Saturday 17th April 2010
by michael (Apr 7)

could you tell us who your guest speakers are? and the topics they will speak about please?.Sounds a bit harsh but not living in the area, its a fair amount of effort ,time,cash to attend.

by Carol (Apr 7)

Hi,

We hold our Patient Support Meetings every couple of months at Hammersmith for both patients& Carers.

For people that have attended before we email them prior to our meeting for

by NataliaV (Apr 7)

That would be an event that most members should attend to. I guess you need to hand out to them some announcements and invitation so that they would not forget the date of that. Well, USPS is

by Carol (Apr 6)

Patient Support Group Meeting at Hammersmith

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road
Category: Uncategorised

Replies: 3

Last updated: 7 April 2010
ian hinley on 6 April 2010

Category: Uncategorised

Replies: 3

Last updated: 14 April 2010

This is interesting, shows someone is still working hard to rid CML
by sandy craine (Apr 14)

Hi Ian... thanks for providing the link to this article. I had meant to comment but I forgot owing to the Website redesign etc.

We have been aware of the search for a vaccine (and the various

by Olivia (Apr 9)

Good luck, Ian.

I am coming up to 6 months on Glivec, next results at the end of this month - I'll be thinking of you! Hope you haven't had too many horrible side-

by ian hinley (Apr 9)

this is a potential cure and some people are working hard to make it work...

The results seem very encouraging for all the 3 log reduction and lower cmlers, fingers crossed

by ian hinley (Apr 6)

http://www.news-medical.net/news/20100403/Study-Trial-vaccine-eliminates-residual-cancer-cells-in-CML-patients.aspx
Category: Uncategorised

Replies: 3

Last updated: 14 April 2010
nikks on 6 April 2010

Category: Uncategorised

Replies: 8

Last updated: 13 April 2010

i really need some help understanding this.
by Richard42 (Apr 13)

If CML, definitely not "wait and see". However, if CMML (which is different) then the doctor's advice may be right - I have a relative with this condition and that person is not

by PhilB (Apr 12)

I'd second all the comments above that if he does have CML then he should a) start Glivec immediately and b) change to a competent haemetologist. One thought though - is it possible that

by eileena (Apr 10)

Hi, It is always a terrible shock to be told that someone close has leukaemia. My daughter then aged 13 was diagnosed with CML in Sept '09. I can honestly say the care she receives in

by Annie Kennedy (Apr 6)

Glasgow is undoubtedly the best CML centre in Scotland (i'm in Edinburgh) - Tessa Holyoake and her team are very highly regarded so he should be seeing them - best of luck getting to the
Category: Uncategorised

Replies: 8

Last updated: 13 April 2010
robert mcadie on 5 April 2010

Category: Uncategorised

Replies: 2

Last updated: 6 April 2010

glivec
by robert mcadie (Apr 6)

Thanks Peter

I feel more reassured now. When I was first diagnosed in 2003 I was told that the Glivec had an average working life of 5 - 7 years. I'm now coming up to 7 years on Glivec

by pstacey (Apr 6)

Hi Bob

Basically, for patients in chronic phase, who respond to Glivec and are not intolerant to it (i.e. do not experience an intolerable level of side-effects) the progression rate is very low

by robert mcadie (Apr 5)

Hi

Just wondering does anyone have any idea of the average time that glivec supports the non progression of this illness into the accelerated phase .

Bob
Category: Uncategorised

Replies: 2

Last updated: 6 April 2010
sandy craine on 5 April 2010

Category: Uncategorised

Replies: 8

Last updated: 16 April 2010

New website design for our 10 year anniversary
by sandy craine (Apr 16)

Dear Beth,
thanks for your comments... I will certainly add them to the list and keep them in mind when we do an overview of the new site and the tweaks it needs.
I am not too clear on what you

by yogiB (Apr 16)

Sandy

Some added suggestions!

I miss the fact that I can no longer access the forums that I have voiced myself on - rather I now have to trawl through all

the entries. I liked the personal

by fselman (Apr 6)

Thank you Sandy for your efforts. It helps not to feel alone,

even if we are at the end of the world.

Cheers,

Fernando

by danielchee (Apr 6)

Dear Sandy,

Great looking and lovely. A million thanks for your

dedication to helping us understand CML better.

daniel
Category: Uncategorised

Replies: 8

Last updated: 16 April 2010
SwanValleySue on 4 April 2010

Category: Uncategorised

Replies: 1

Last updated: 5 April 2010

Children with CML
by sandy craine (Apr 5)

Dear Sue,
Jayne Lister set up the group 'Children with CML' .....www.childrenwithcml.org.uk

I am sure you will find members on there that will be willing to share information.
Sandy

by SwanValleySue (Apr 4)

Children with CML
In Australia the numbers are increasing with children being diagnosed with CML.
Each child depending on age and when diagnosed is individual as are all our management regimes.
Is
Category: Uncategorised

Replies: 1

Last updated: 5 April 2010
sue on 3 April 2010

Category: Uncategorised

Replies: 3

Last updated: 10 June 2010

Sad News Loss of Yorkshire Region CML Support Group Member
by alison28 (Jun 10)

i am so sorry to read this sad news, i am a newly diagnosed and it just makes me so sad to read this. love warmest wishes to all the family.xxxx

by sandy craine (Apr 4)

Dear Sue,
Thank you for letting us know about Rebecca. Blast phase CML is a very difficult disease to conquer and I am so sorry that Rebecca was unable to overcome the post transplant complications

by SwanValleySue (Apr 4)

Even though I come from Australia - my heart goes out to Craig and his children, Oliver and Francessca.
My sister-in-law passed over with ovarian cancer when she had just turned 36 years old leaving

by sue (Apr 3)

I have been asked by Craig Bray,husband of Rebbeca, who are members of the Yorkshire Region CML Support Group to inform everyone that Rebbeca sadly passed away on 31/04/10 after a brave fight with
Category: Uncategorised

Replies: 3

Last updated: 10 June 2010
ian hinley on 3 April 2010

Category: Uncategorised

Replies: 9

Last updated: 5 April 2010

NICE not getting good press which is nice...
by Dennis (Apr 5)

I certainly wasn't electioneering. It really is quite difficult to keep politics out of the Dasatinib and Nilotinib debate, considering that over the past few months some of us have been lobbying

by Steven D (Apr 5)

Whilst the press is full of gossip and rumour mungering it seems only fair to point out the parties that seem to have the same goal as us and that is getting drugs for any type of health sufferer

by michael (Apr 5)

I agree with Sandy,This is a place for good advice,surport and humanity,and consideration for others.Lets keep it that way.

by sandy craine (Apr 5)

Whilst it is understandable that during the general election period some of us may feel the need to express our political views and preferences.. Please remember that others might not share the same
Category: Uncategorised

Replies: 9

Last updated: 5 April 2010
cassidy62 on 2 April 2010

Category: Uncategorised

Replies: 1

Last updated: 5 April 2010

fightin fit
by sandy craine (Apr 5)

Congratulations on your 10k run. You are right to be proud of such an achievement and you have proven that CML does not need to control your life. A lot of us now have access to such effective

by cassidy62 (Apr 2)

not been on for awhile as my 9mth daughter takes up most of my time! just a quickie to let you know that last mth i did a 10k in 54mins (pb) and was so proud and me and my husband are off to
Category: Uncategorised

Replies: 1

Last updated: 5 April 2010
Steven D on 28 March 2010

Category: Uncategorised

Replies: 2

Last updated: 28 March 2010

Mail on Sunday Article Another rejection by NICE
by michael (Mar 28)

The worlds gone mad when the advice of Prof Mufti is ignored(Prof Mufti is a great man),NICE decisions are all about money,The very sick in the UK are paying with their lives for the faliure of the

by Pennie (Mar 28)

Many Steven thanks for posting this excellent article.
This drug has been many many years in research and development, and is as big a breakthrough for MDS as Glivec was for us. Prof Mufti has

by Steven D (Mar 28)

There is a very good article in todays Mail on Sunday by Proffesor Rodney Taylor who himself is suffering from MDS.

The link is below
Steven D
www.dailymail.co.uk/health/article-1261234/A
Category: Uncategorised

Replies: 2

Last updated: 28 March 2010
Carol on 26 March 2010

Category: Uncategorised

Replies: 1

Last updated: 6 April 2010

Patient Support Group Meeting at Hammersmith, Saturday 17th April 2010
by karen (Apr 6)

Hope it's a good meeting, sorry I can't attend this time

K

by Carol (Mar 26)

Patient Support Group Meeting at Hammersmith

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road
Category: Uncategorised

Replies: 1

Last updated: 6 April 2010
sandy craine on 26 March 2010

Category: Uncategorised

Replies: 2

Last updated: 27 March 2010

Kate Spall- Exceptional Case Appeals.
by Tufty3 (Mar 27)

Many thanks to Kate, for offering her experience and time to help us out in our hour of need and thanks to Sandy for posting the details on the website. Is it worth making a permanent link on the

by Dennis (Mar 26)

That's a really fantastic offer from Kate. I would urge anyone who thinks there's even a slight chance that they might need access to one of these drugs, to contact her. Don't leave anything to

by sandy craine (Mar 26)

I was recently contacted by Kate Spall who does fantastic work in helping and representing patients who need to use the exceptional case appeal process in order to get access to drugs on NHS.
Category: Uncategorised

Replies: 2

Last updated: 27 March 2010
sandy craine on 25 March 2010

Category: Uncategorised

Replies: 2

Last updated: 26 March 2010

Petition
by sandy craine (Mar 26)

Hi Chris... well it obviously did the trick as we are now at 1411! I will decide what to do this weekend as I have spoken with a few people 'in the know' and it has been pointed out to me that as

by chrissbb (Mar 25)

Hi Sandy ,

I have just sent the link to 6 people i had not originally posted it on to, so fingers crossed anytime this afternoon it should reach it. Hope your well. Chris.

by sandy craine (Mar 25)

1398.... !! so near to 1400. If any of you can persuade people who might not have signed... husband/wife/daughter/son/sister/brother/cousin/neighbour etc etc then I can close it at 1400... we only
Category: Uncategorised

Replies: 2

Last updated: 26 March 2010
jacqui from Col... on 24 March 2010

Category: Uncategorised

Replies: 1

Last updated: 25 March 2010

Dasatinib working well
by sandy craine (Mar 25)

Dear Jacqui, congratulations on such a quick response. You must be feeling great!
Sandy

by jacqui from Colchester (Mar 24)

HI everyone, Just an update for you all - I am on the Spirit 2 trail and have been taking dasatinib for nearly 7 months. I had a biopsy at 6 months (liquid only) and my FISH results were 0.034.
My
Category: Uncategorised

Replies: 1

Last updated: 25 March 2010
chris on 22 March 2010

Category: Uncategorised

Replies: 10

Last updated: 28 March 2010

Withdrawl of Dasatinib/Nilotinid
by Steven D (Mar 28)

I have been in touch with Novartis and it is my understanding that once you are on the new TKI's you cannot be taken off it by a PCT unless there is clear clinical evidence that to carry on would

by michael (Mar 27)

Thanks Vickie

by vickiep (Mar 25)

Hi Michael...big hugs to you, your family and your predicament..

Vickie

by michael (Mar 24)

Hi Pennie,I have no problems about getting TKIs,I am refering to new patients.

I am sadly not helped by either 1st or 2nd generation TKIs.

my options are BMT or nothing.

At the 50/
Category: Uncategorised

Replies: 10

Last updated: 28 March 2010
vickiep on 22 March 2010

Category: Uncategorised

Replies: 13

Last updated: 29 April 2010

Flatulence!
by vickiep (Apr 29)

Hi Beth,

This JUST can't go on...I've cut out a few bits and pieces, but trying to eat healthily to do something about the weight gain on these drugs, is making the problem worse...so,

by Pennie (Mar 26)

Ah but now we know just how 'warm hearted' you are Vicky !!!
By the way have you tried acidophilus? (spelling might be wrong) Biocare might be people to get it from.

ATB
Pennie

by vickiep (Mar 25)

Thank you everybody...I'm retiring into my solitary existence having acutely embarrassed myself today...I will try all your wonderful suggestions for which I thank you from the heart of my bottom!!

by Alastair C (Mar 23)

Yes I have a significant flatulence issue - have found it is improved by taking some "nice bacteria" to quote the advertisement - I use Actimel which has certainly helped with, but not eliminated,
Category: Uncategorised

Replies: 13

Last updated: 29 April 2010
David on 22 March 2010

Category: Uncategorised

Replies: 2

Last updated: 22 March 2010

Fund raising for Leuka - Mount Kilimanjaro climb
by David (Mar 22)

Lyn
Thank you so much. I am sure they will have fun but, as you may know, this is not an easy challenge, with the risk of altitude sickness and the need to carry oxygen. I feel confident they will

by lynnsch (Mar 22)

What a fantastic effort! Good luck to your sons and I hope they have fun whilst raising as much money for Leuka as possible.
Lynn

by David (Mar 22)

I hope you don’t mind us writing a begging post.
Val’s two sons, James and Ian, are going to climb Mount Kilimanjaro, 19,341 feet, in September this year to raise money for Leuka. Leuka funds life
Category: Uncategorised

Replies: 2

Last updated: 22 March 2010