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kitty77 on 7 January 2010

Category: Uncategorised

Replies: 10

Last updated: 11 February 2010

Pregnancy and short term dose increase
by cassidy62 (Feb 11)

I havent been on here for awhile but have just read your story and dont know if you have read my previous posts. I was dx oct07 and in june09 after 8mth off gleevec i had a beautiful baby girl. I

by sandy craine (Jan 13)

Dear Michelle,

I am sure you will eventually succeed. However... even without the stress of having CML it is not certain that anyone can conceive exactly when they choose to.

I do wish

by sandy craine (Jan 13)

Dear Zavie,

congratulations on your continued reduction in % of BCR/Abl. I just noticed that you have a further deepining of molecular remission to a 4 log reduction for you results in

by Michelle Lawman (Jan 12)

I was diagnoised with CML in 2004 at the age of 27, my recent blood test results show that my CML levels are nearly un-detectable which I am as you can understand absolutely delighted about, I have
Category: Uncategorised

Replies: 10

Last updated: 11 February 2010
Jed on 6 January 2010

Category: Uncategorised

Replies: 5

Last updated: 7 January 2010

Evening Standard
by Jed (Jan 7)

Just added my own quick comment.
On a side note, I completely agree with your sentiment regarding the 'default' blames, Sandy. Incredibly frustrating to read such responses.
Jed

by arrowsc (Jan 7)

I read with interest the comment someone made about human rights legislation. Are there any legal experts out there who think a 'no' desision could be challenged by an individual under the human

by Barbs (Jan 7)

I've added some too - maybe we all should?

by Dennis (Jan 6)

Added some comments of my own, but they're not showing up yet. Maybe they need approving first, or maybe the staff have gone home early.
Category: Uncategorised

Replies: 5

Last updated: 7 January 2010
patrice on 6 January 2010

Category: Uncategorised

Replies: 6

Last updated: 7 January 2010

Resistance, Glivec and BMT
by sandy craine (Jan 7)

Hi Patrice.... where are you being treated. Let me know and I will advise. If it is Australia then there are definitely expert centres.
Dasatinib (Sprycel) and nilotinib (Tasigna) are the two 2nd

by patrice (Jan 7)

Okay I feel much better now having read all your responses, it's just hard cause my next test isn't till early march and my doctor doesn't seem worried at all, it's just he said BMT and I was like

by Alastair C (Jan 6)

Patrice, I hope if enough of us say it you'll be convinced!
It took me 6 months post Dx to get to 3%, and in the next 6 months I only got to 1.9%. Three months after that - 0.04% and PCRU three

by sandy craine (Jan 6)

Dear Patrice,
Your doctor does not seem to be in a panic so you should take that as a good sign. I agree with Simon that your initial response seems pretty good ... do you know what your baseline PH
Category: Uncategorised

Replies: 6

Last updated: 7 January 2010
Jed on 5 January 2010

Category: Uncategorised

Replies: 7

Last updated: 6 January 2010

BBC London News (TV) re. Dasatinib and Nilotinib
by bobosbo (Jan 6)

Jed,

Well done once again with yeserdays interview, very much to the point, & very well put. I notice that the e-petition has started to rise again since you have done the interviews.

by sandy craine (Jan 6)

Hi all,

this is available for around the next 10 hours. If you missed the news you can watch it again here although you will have to plod through until near the end.
www.bbc.co.uk/iplayer

by sandy craine (Jan 6)

Dear Jed,
I saw the BBC news piece on the late news last night. You did very well with some NICE (sic) punchy one liners like "I think my life is worth £30,000 ...."
I also thought that Prof.

by Jed (Jan 5)

The piece was on. Having watched it, I think it was put together very well. It has also been summarised 5 or 6 times during the day today.
The link is:
http://www.bbc.co.uk/mediaselector/check/
Category: Uncategorised

Replies: 7

Last updated: 6 January 2010
Ali Loram on 4 January 2010

Category: Uncategorised

Replies: 2

Last updated: 12 January 2010

NICE decision date?
by sandy craine (Jan 12)

Dear Ali,

NICE are due to publish the FAD on 20th January,
Best...

Sandy

by Bhiru (Jan 4)

They make the official announcement in April - seems such a long time to wait between now and then.

by Ali Loram (Jan 4)

I am a bit confused (and forgetfull sometimes), I know NICE sits again on 13th of this month but when will they reveal their final decision? If someone could clarify, I would appreciate it.
Category: Uncategorised

Replies: 2

Last updated: 12 January 2010
patricia dever on 4 January 2010

Category: Uncategorised

Replies: 1

Last updated: 6 January 2010

Neighbours with CML
by sandy craine (Jan 6)

Dear Patricia... I have put your interview link on the Newswire along with the BBC interview with Jed.

Well done,

Sandy

by patricia dever (Jan 4)

This is a short TV interview my neighbour and I did about us both having CML here is the link
http://www.tv3.ie/videos.php?video=16458&locID=1.2.
Category: Uncategorised

Replies: 1

Last updated: 6 January 2010
Ali Loram on 4 January 2010

Category: Uncategorised

Replies: 1

Last updated: 4 January 2010

"Vaccine" gives hope for leukaemia
by Dennis (Jan 4)

Copy and paste this link:
www.telegraph.co.uk/health/healthnews

by Ali Loram (Jan 4)

Take a look at the front page of todays Daily Telegraph, or look online. Although this trial is only for patients with AML at the moment, perhaps they will go on to develope it for us with CML. An
Category: Uncategorised

Replies: 1

Last updated: 4 January 2010
Jed on 3 January 2010

Category: Uncategorised

Replies: 14

Last updated: 7 January 2010

London Tonight (ITV) re. Dasatinib and Nilotinib
by Apryl (Jan 7)

Hi Jed

I posted your Utube link and the petition link on face book and emailed to family and friends who also have emailed and posted it. Hundreds of people have passed it on. Well done for

by sandy craine (Jan 6)

Dear Jed..... just uploaded your YouTube link under Newswire ;o)
Sandy

by Dennis (Jan 4)

You're doing some wonderful things Jed and deserve all the praise you are getting. I myself am doing OK on Glivec - but that could change at any time. It's a fight we should all take on to our best

by Jed (Jan 4)

Bob, that is a phenomenal response to Dasatinib! I'm very pleased for you.
You must be walking on air.
Category: Uncategorised

Replies: 14

Last updated: 7 January 2010
Des on 29 December 2009

Category: Uncategorised

Replies: 4

Last updated: 19 January 2010

Still undetectable
by Basil from RSA (Jan 19)

Well done Des.

What an inspiration you are to us all.

I have had my blood samples taken two weeks ago for a RT-QPCR.

Will be seeing my specialist on the 20th and hope he has the

by sandy craine (Dec 31)

Dear Des......this is truly great and almost fantastical news!!!

Who would have thought that we would be here today,10 years on, talking about stopping Glivec and remaining PCRu? It was enough

by skiinglaketahoe (Dec 30)

Delighted to hear such good news. Long may it last
regards
Susan

by vickiep (Dec 30)

Wow!!! How amazing!!! You must be thrilled to bits with this result and to have a wonderful break from Glivec. Like you, I had appalling virus, three years prior to dx which lead to pneumonia &
Category: Uncategorised

Replies: 4

Last updated: 19 January 2010
Ali Loram on 27 December 2009

Category: Uncategorised

Replies: 4

Last updated: 30 December 2009

BBC radio Devon, N.I.C.E funding
by Ali Loram (Dec 30)

Hi Vickie, dont know how to creat a link, will see if I can do it later for you.

However this is what I did just now! Google bbc radio devon, when on their site on top right clic "listen again

by vickiep (Dec 30)

aw...struggling to find this...maybe I'm too late? Is it possible to have a link to it please...anybody!!!

Thanks!

Vickie

by bobosbo (Dec 27)

Well done Ali,

I have just listened to the interview, & you put your point accross vey well, I know how difficult it can be doing radio interviews, even pre-recorded ones.

Bob

by irenekallison (Dec 27)

That would be excellent
Category: Uncategorised

Replies: 4

Last updated: 30 December 2009
irenekallison on 23 December 2009

Category: Uncategorised

Replies: 2

Last updated: 24 December 2009

NICE - MP Response to request for support to overturn decision.
by vickiep (Dec 24)

Irene & John!!! Fabulous response read on Christmas Eve and taken as real hope for the future...Am I right in thinking that the Tories will actually be using this as a vote-catcher?!!! I think

by johnh (Dec 24)

I have just received a reply from my MP, Rob Walter, and his description of Conservative policy on drugs is word for word the same as Maria Miller's. He also said that he was pleased to support

by irenekallison (Dec 23)

Dated: 22 December 2009
Dear Mrs Allison,
Thank you for contacting me about the National Institute of Clinical Excellence. (NICE)
I believe it is right that decisions about the availability of
Category: Uncategorised

Replies: 2

Last updated: 24 December 2009
bobosbo on 23 December 2009

Category: Uncategorised

Replies: 5

Last updated: 31 December 2009

Dasatinib - My early christmas pesent
by sandy craine (Dec 31)

Dear Bob........ wishing you the best for the coming year. Many many congratulations on your response to dasatinib.

Sandy

by bobosbo (Dec 24)

Hello Vickie,

Its still not sunk in yet how good a result this is, I still can't believe it.

As for side effects I only suffer from fatigue, & hopefully that will get easier, I

by vickiep (Dec 24)

Wonderful news Bob!!! Exactly my story too except that I was 18months stuck!!! It is indeed a brilliantly effective treatment and, I don't know about you, but I find it's somehow easier on the

by lynnsch (Dec 24)

Congratulations Bob, that is an amazing result, what a lovely start to your Christmas celabrations.
Category: Uncategorised

Replies: 5

Last updated: 31 December 2009
angela on 20 December 2009

Category: Uncategorised

Replies: 2

Last updated: 21 December 2009

Email Address
by sandy craine (Dec 21)

Hi Angela,

just use the contact address for cml support group - see contact us button on menu- as it will be redirected into my email box.
Best wishes,

Sandy

by Barbs (Dec 21)

Hi Angela,

hope you're keeping well - we haven't spoken for ages!

All the best to you & your family for Christmas & 2010!

XXXX

by angela (Dec 20)

Hi Sandy
Would it be possible to have your email address as I have had a reply and need to talk

to you on a one to one basis.
angelactyrrell@aol,com
Many thanks
Angela
Category: Uncategorised

Replies: 2

Last updated: 21 December 2009
Ali Loram on 18 December 2009

Category: Uncategorised

Replies: 3

Last updated: 30 December 2009

interview on radio Devon
by vickiep (Dec 30)

http://www.bbc.co.uk/iplayer/episode/p005p589/Good_Morning_Devon_27_12_2...
Well done Ali :-)

Vickie

by Ali Loram (Dec 20)

Hi Bhiru, I have just had a mail from radio Devon, Its now going to be on Sunday 27th. If this changes again I will let you know.

all the best.

Ali

by Bhiru (Dec 20)

Did the interview go out this morning? I heard the interview about schizophrenia at around 8am - did I miss yours? If you were on this morning please let me know and I'll have a listen on bbc

by Ali Loram (Dec 18)

I have been approached by BBC radio Devon who are running a story about NICE's conclusions re dasatinib & nilotinib and the effects this might have on CML patients

Today I have given that
Category: Uncategorised

Replies: 3

Last updated: 30 December 2009
chris murphy on 16 December 2009

Category: Uncategorised

Replies: 3

Last updated: 17 December 2009

recently diagnosed bowel cancer
by vickiep (Dec 17)

I have read and re-read what you say Chris and feel very humbled by it and your blessings to all of us given what an ordeal you have all had.

I cannot thank you enough for sharing this with us

by Jed (Dec 17)

I'm so pleased for you and Brian, Chris.
It sounds like you've had some very difficult times, but have come through them all. I wish you the best of luck in January.
Best wishes,
Jed

by sandy craine (Dec 17)

Dear Chris..... this is really good news... no it is really fantastic news.

Thanks for letting everyone know, and your story shows that individuals do benefit from cancer research if they have

by chris murphy (Dec 16)

Hi All

I did leave a forum note recently because Brian had to go and have a sigmoidoscopy which picked up a cancerous growth. So now we are jubilant, saw consultant today and he has a large
Category: Uncategorised

Replies: 3

Last updated: 17 December 2009
Bhiru on 16 December 2009

Category: Uncategorised

Replies: 4

Last updated: 1 January 2010

Imatinib intolerance
by Bill Yellowley (Jan 1)

Hi Everyone, Happy New year !
Its been quite a long time since I last posted on this site thought I'd respond to fish4 with a few questions....

Can I ask if you were first diagnosed two years

by fish4 (Dec 18)

I have read your post and as per my ONC and a lot of research that has been done, Tasigma is not recommended for patients with any possibility of heart problems
I am 53 and as Glivic stopped working

by PhilB (Dec 17)

Have they done a Glivec level test? If his blood G levels were paricularly high on 400mg - whether because he's a slow clearer or for whatever reason - then that would (i) be a possible reason for

by sandy craine (Dec 17)

dear Bhiru,
I would say that given the complications of underlying heart problems a very quick referral to Prof. Richard Clark- CML specialist at the Royal in Liverpool- would be the best advice.
Category: Uncategorised

Replies: 4

Last updated: 1 January 2010
sandy craine on 14 December 2009

Category: Uncategorised

Replies: 6

Last updated: 15 December 2009

Contacting the Media?
by sandy craine (Dec 15)

If any of you want to contact journalists that might be interested I have some contacts. One or two of us are already doing this.

It is quite difficult to keep the interest up and so you need

by angela (Dec 15)

Hi Sandy
I've written an email to Dr. Chris Steele at "This Morning" on ITV but I haven't heard a reply. I think Jed's Story should be given to Dr. Chris Streel and see if he can get on national

by arrowsc (Dec 14)

Yes I read that with horror Vickie, its almost farcical. What will happen if the people in England who need these drugs are forced to move to Scotland, and then the Scots can't afford to fund the

by vickiep (Dec 14)

Craig, might it also be good to query the £1million that Labour put into Commissioning Support Service which, according the News of the W was set up to put pressure on NICE (not to sanction
Category: Uncategorised

Replies: 6

Last updated: 15 December 2009
ian hinley on 14 December 2009

Category: Uncategorised

Replies: 1

Last updated: 14 December 2009

BBC Website - Donor required
by sandy craine (Dec 14)

Dear Ian..... thanks for posting the link. I am rather confused though as this article does not mention the fact that there are 2 other drugs available. I wonder what she is being treated with while

by ian hinley (Dec 14)

Hope this lady finds someone soon...
BMT Donor Required
My thoughts are with her and her family.
Category: Uncategorised

Replies: 1

Last updated: 14 December 2009
Pesty on 11 December 2009

Category: Uncategorised

Replies: 1

Last updated: 14 December 2009

Petechia and moles appearing
by Sarah R (Dec 14)

My son Bill who has been on the Glivec since December 2007 also has these spots. Unfortunately they cover most of the tops of his arms, chest and back. We have mentioned this quite a few times to

by Pesty (Dec 11)

Hi all,
Has anyone developed Petechia (tiny red dots on skin) since starting Gleevic?
I have been taking the drug for 2 1/2 months now and the Petechia have popped up on my chest (about 10 or so
Category: Uncategorised

Replies: 1

Last updated: 14 December 2009
sandy craine on 11 December 2009

Category: Uncategorised

Replies: 4

Last updated: 14 December 2009

Another idea regarding NICE
by vickiep (Dec 14)

I only saw the Registrar today and when I asked him what their department (or Dr Grace) was doing to support the use of these drugs, the answer was "nothing, we're leaving it to those who know more

by vickiep (Dec 13)

Hi Sandy,
I'm seeing my Haemotologist tomorrow, so did send an email through as you asked for people to contact you direct? Anyway, the info you would want is that it's Dr Grace, Eastbourne DGH.

by sandy craine (Dec 13)

Hi Pennie... yes that is the Mike Richards that I am referring to. Do you think you could contact your specialist and ask him to contact Prof. Richards? I think CML specialists who understand the

by Pennie (Dec 11)

Sandy

Do you mean Professor Mike Richards CBE, National Clinical Director for Cancer at the Dept for Health?
I do wonder if the more of us that approach our specialists re the idea the more it
Category: Uncategorised

Replies: 4

Last updated: 14 December 2009