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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
yogiB on 22 March 2010

Category: Uncategorised

Replies: 3

Last updated: 22 March 2010

New Government guidance on supply of medicines!
by karen (Mar 22)

Until recently I was only able to get 1 months supply of Dasatinib due to only having monthly appointments. I have just been changed to an appointment every 2 months and I now get my drugs delivered

by Janet (Mar 22)

I have also had 3 month's supply this time, but only after Novartis had been sent a copy of my prescription to show that I am a bone-fide patient. My local chemist tried the wholesaler first, and

by ali (Mar 22)

My husband put his 3 month prescription in at the local chemist and expeted the usual 1 months supply but got the full 3 months. Seems that Novartis are allowing the full prescription again.

by yogiB (Mar 22)

I have been corresponding with my local MP of Spelthorne re the problem I have been having in sourcing Imatinib, due to it being sold on to other countries and creating a local shortage.
He has been
Category: Uncategorised

Replies: 3

Last updated: 22 March 2010
Alyson on 21 March 2010

Category: Uncategorised

Replies: 5

Last updated: 23 March 2010

Disappointing results
by sandy craine (Mar 23)

Hi Alyson,

I am glad to hear you have a good sibling match. My younger brother was a good match for me and my transplant went well. Please read my diary for details of the non-myeloblative sct

by Alyson (Mar 22)

Thank you all for the helpful information.

I have been treated at Chesterfield Royal Hospital since being diagnosed at the end of January 2009. I have also been referred to the Hallamshire in

by hcy0da (Mar 22)

Hi Alyson
I'm sporry to hear you are having problems with low counts. I had exactly the same problem and like Sandy said G-CSF would have been an option if it were only the white counts and neuts.

by sandy craine (Mar 22)

Dear Alyson,
I am sorry to hear this. Given your results are from a bmb (bone marrow biobsy) I would not say that it is likely to be wrong or as in the case of peripheral blood pcr's- sometime
Category: Uncategorised

Replies: 5

Last updated: 23 March 2010
Johannah on 20 March 2010

Category: Uncategorised

Replies: 1

Last updated: 22 March 2010

Tonsilitis
by sandy craine (Mar 22)

Dear Johannah,
Yes infections can take longer to clear up given that white cells (neutrophils) that usually deal with the sort of infection you are suffering from might not yet be at their best or

by Johannah (Mar 20)

Hi, all

I have now been on Glivec for 6 months and am doing really well. I recently had tonsilitis and still have many of the symptoms after almost 5 weeks, severe sore throat, white spots in
Category: Uncategorised

Replies: 1

Last updated: 22 March 2010
zaviemiller on 19 March 2010

Category: Uncategorised

Replies: 1

Last updated: 20 March 2010

CML Combo/Trials...The cure we have been waiting for?
by Dennis (Mar 20)

this sounds very exciting. Does anyone know if these trials will be brought over to the UK?

by zaviemiller (Mar 19)

Jerry Mayfield Posted this on his CMLNEWDRUG.COM website.
CML Combo/Trials...The cure we have been waiting for?

by Jerry Mayfield
Yesterday (March 17, 2010), I met with Dr. Talpaz about his
Category: Uncategorised

Replies: 1

Last updated: 20 March 2010
Steven D on 18 March 2010

Category: Uncategorised

Replies: 2

Last updated: 19 March 2010

I'm new on Nilotinib. Some advice needed please.
by Steven D (Mar 19)

Thanks Pennie. I am starting next thursday but for some rease the very first dose is to be taken after a light breakfast. presumeably to be absorbed quicker.
Will keep you informed.
Steven

by Pennie (Mar 18)

Hi Steven
I take my morning dose at approx 7am - that way I have done the starving whilst asleep! By the time I have showered, dressed, planned the day I can eat breakfast. You shouldn't have

by Steven D (Mar 18)

Hi All

After 8 weeks of waiting my PCT came up with the funding for Nilotinib. Today I start my week off of Glivec and start Nilotinib next Thursday. I have several questions.

1. Can I
Category: Uncategorised

Replies: 2

Last updated: 19 March 2010
sandy craine on 18 March 2010

Category: Uncategorised

Replies: 1

Last updated: 19 March 2010

Would you like to tell your story?
by zaviemiller (Mar 19)

Jerry Mayfield Posted this on his CMLNEWDRUG.COM website.
CML Combo/Trials...The cure we have been waiting for?

by Jerry Mayfield
Yesterday (March 17, 2010), I met with Dr. Talpaz about his

by sandy craine (Mar 18)

'New Horizons' is an international conference for CML and GIST patient advocates and group organisers. I am part of the steering committee and this year the conference will open with a video in
Category: Uncategorised

Replies: 1

Last updated: 19 March 2010