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Pennie on 20 January 2010

Category: Uncategorised

Replies: 2

Last updated: 23 January 2010

Latest PCR
by sandy craine (Jan 23)

Hi Pennie, this is a really good result and I am sure -as we all love zero's- you are not far off and eventually will get a run of them ;o)

regarding insomnia... it is a real problem for some

by Andy Parkin (Jan 21)

Hi Pennie,

0.011 still sounds good. Well done and long may the low/zero readings continue!!

May see you Monday at Kings CML patient group?

Regards Andy

by Pennie (Jan 20)

Got results from Kings today 0.011. Oh why can't I get a decent run of zero !!!!! Still this is a good result, and I and the consultant are OK with it.
Feeling great on Nilotnib, the insomnia/
Category: Uncategorised

Replies: 2

Last updated: 23 January 2010
karen on 20 January 2010

Category: Uncategorised

Replies: 3

Last updated: 20 January 2010

Meeting at Hammersmith Hospital
by bobosbo (Jan 20)

Hi Karena,

The Carol that i mentioned is Carol Davies who's email address is at the bottom of the post about the meeting:

CAROL DAVIES - steven.carol@ntlworld.com

you could try

by karen (Jan 20)

Hi Bob

I just wanted to check as it was a while ago it was posted on here. Is there somewhere else I can check in future?

K

by bobosbo (Jan 20)

Karena,

As of 3days ago the meeting still appears to be on, as Carol has bumped it up the list. do you suspect differently?

Bob

by karen (Jan 20)

Hello

Does anyone know if the scheduled meeting is still on this Saturday?

Many thanks K
Category: Uncategorised

Replies: 3

Last updated: 20 January 2010
ian hinley on 19 January 2010

Category: Uncategorised

Replies: 1

Last updated: 19 January 2010

See NICE are at it again...
by Richard42 (Jan 19)

This is something I think we all feel very unhappy about and it is a political issue. Why is NICE so often contradicted by other assessors? Do they use a different model and if so why? Do their

by ian hinley (Jan 19)

http://news.bbc.co.uk/1/hi/scotland/8467346.stm
Category: Uncategorised

Replies: 1

Last updated: 19 January 2010
Pesty on 15 January 2010

Category: Uncategorised

Replies: 8

Last updated: 6 July 2012

Fuzzy/full sensation in head
by BHPenfold (Jul 6)

Hi All,
I was diagnosed with CEL (FIP1L1-PDGFRA+) 2 months ago. While not CML, it is very similar and there are no support groups that I have found in the UK.
My mother had AML, and my daughter ALL

by Matthew Wilson (Jan 19)

Sandy,
Thanks for your comments, I am very pleased believe me!!
As for Imatinib and CEL. Well, it's licenced for certain types, but not all subtypes of CEL. It's a rare Leukaemia with 3 or 4

by sandy craine (Jan 18)

Dear Michelle,
that does sound like a strange experience but I am sure it would not be air escaping from your brain. It is more than likely that owing to the extra fluid retained around the area of

by sandy craine (Jan 18)

Dear Mathew,
good to know you are responding well to imatinib and that this drug is effective in CEL. PCRu is a great place to be.... fortunate is an understatement ;o)
Is imatinib licensed for use
Category: Uncategorised

Replies: 8

Last updated: 6 July 2012
chrissbb on 15 January 2010

Category: Uncategorised

Replies: 8

Last updated: 26 February 2010

Feb 1st CML Yorkshire support group meeting.
by shelagh (Feb 26)

Hi everybody,
Sorry I've been so neglectful of the site and not contributing anything but I couldn't remember where I'd put the website address and couldn't find it on my computer. You know I'm the

by DPJ (Feb 11)

Can I get any info on the talk given on I. 2. 10. ? I am in North Notts. found out about it too late. I am conerned about access to much needed drugs.

Where is my nearest cml support group

by drjamespotter (Jan 31)

Just tried again and its still down.

by chrissbb (Jan 31)

Hi Yes it is the same place. Site is back up and running now. The server has been having problems but all been well no more problems.

See you there. Chris.
Category: Uncategorised

Replies: 8

Last updated: 26 February 2010
Pennie on 14 January 2010

Category: Uncategorised

Replies: 5

Last updated: 16 January 2010

response from NICE to my MP
by vickiep (Jan 16)

Oh love it Phil!!! Thanks for the laugh contained within your last sentence!!!

Vickie

by PhilB (Jan 16)

Vickie may well be right about it making no difference and I don't trust any of them as far as I could throw them. I have to say though that the proposed Tory policy of telling the drug company what

by vickiep (Jan 15)

Taking your vote "elsewhere" will not change a thing, be assured of that....these drug companies have been a personal target of mine long before dx and our protestations have fallen on deaf ears

by Pennie (Jan 15)

Hi Richard,

having been in at the start of the Glivec campaign I know just how 'tricky' NICE can be ! I was one of the very first people to get Glivec on NHS in Feb 2002. It worked for my,
Category: Uncategorised

Replies: 5

Last updated: 16 January 2010
sandy craine on 14 January 2010

Category: Uncategorised

Replies: 3

Last updated: 19 January 2010

date for NICE FAD
by Jed (Jan 19)

I heard a little rumour yesterday that those at NICE will be meeting up again regarding dasatinib and nilotinib. I don't know if this is true, but if so then I imagine the date for publication will

by sandy craine (Jan 15)

Dear Simon,
I am not sure but probably not. I know that there are issues with confidential materials for formal consutlees and there are legal signatures required. However, once the FAD is published

by Simon Clayson (Jan 14)

Sandy
Do you know if the submissions made to NICE can be viewed once the meeting has taken place?
Simon

by sandy craine (Jan 14)

I have had further discussion with other consultees and I now understand that NICE will take a while longer to publish the FAD. It says on their website that publication can take up 30 days from the
Category: Uncategorised

Replies: 3

Last updated: 19 January 2010
vickiep on 13 January 2010

Category: Uncategorised

Replies: 4

Last updated: 16 January 2010

Networking
by vickiep (Jan 16)

Totally agree....I posted the response that I had because of the sheer frustration that even the most helpful of our contacts in the end, can't help. I do appreciate that this is all stuff that you

by Pennie (Jan 16)

This took me months of hard graft and serious strain an stress, and that was using the excellent booklet Sandy suggests. Also had Consultant, GP and MP on the case.
This is a terrible process to go

by sandy craine (Jan 16)

Dear Vickie,
Yes your contact is correct and reimbursment of therapy can be applied for in that way. However that is not at all ideal and it is a very difficult process for patients to go through.

by vickiep (Jan 16)

This is the response that I have received having written to my contact as above...
It seems the Party line is that " if the NHS paid for every drug availiable on the market then it would soon be
Category: Uncategorised

Replies: 4

Last updated: 16 January 2010
fish4 on 12 January 2010

Category: Uncategorised

Replies: 1

Last updated: 12 January 2010

New CML Drugs in Phase 1 testing
by sandy craine (Jan 12)

Thanks for this link. Looks very interesting in terms of dealing with T315i.
Meanwhile best wishes for a good and stable response to nilotinib (Tasigna)
Sandy

by fish4 (Jan 12)

Hi all and a very Happy and Healthy New Year to All
I was Surfing the net and found a Press Release from 29 Dec 2009 on the Novartis Media release site I thought could be of interest to all of us.
Category: Uncategorised

Replies: 1

Last updated: 12 January 2010
sandy craine on 11 January 2010

Category: Uncategorised

Replies: 5

Last updated: 13 January 2010

petition
by sandy craine (Jan 13)

I had a discussion with one of the other official consultees and that is the date we have been given 20th. I think it is usual that the decision is about one week after the meeting. However NICE are

by Jed (Jan 12)

I was wondering when they publish their decision. 20th January is sooner that I'd realised - quite pleased about that. At least we'll know where we stand (if, of course, there isn't too much of a

by Pesty (Jan 12)

No worries about the petition. I am just pleased that I could contribute something.
Michelle

by sandy craine (Jan 12)

I was curious about the next step, given that the petition has now closed, so took a look at the Number 10 petition website where it says this....
Step 5: Petition close
When a serious petition
Category: Uncategorised

Replies: 5

Last updated: 13 January 2010
sandy craine on 8 January 2010

Category: Uncategorised

Replies: 1

Last updated: 19 January 2010

CML patients in the Greater Manchester area?
by Jed (Jan 19)

It looks like this went out yesterday:
http://www.manchestereveningnews.co.uk/news/health/s/1189459_cancer_gran...
A very well put together article, too. Well done David and Sandy!

by sandy craine (Jan 8)

I have just spoken with a journalist who want to run a story on the NICE issue. If there are any patients who live in the Greater Manchester area (and including North Cheshire) and whos doctor feels
Category: Uncategorised

Replies: 1

Last updated: 19 January 2010
Jed on 7 January 2010

Category: Uncategorised

Replies: 3

Last updated: 8 January 2010

Further News Stories - NICE ACD (inc. NICE press release)
by Simon Clayson (Jan 8)

Thank you so very much for all your efforts to get the human impact of the NICE ACD accross to the public. We are very grateful that you are putting accross the point that you are fighting for all

by Richard42 (Jan 8)

Clog away... You're bringing the human side to the story which gets hidden by the cold and detached NICE assessment. NICE needs to be put on the back foot here because they are wrong, as they were

by sandy craine (Jan 8)

Dear Jed.... don't worry about clogging up the forum... you are not. The sharing of information is what this is all about and the more you do the less I have to ;o)
for everyone's convenience, I

by Jed (Jan 7)

Just to keep you all updated, the Press Association put a story about me and the NICE ACD out last night. Hopefully it'll be picked up by a few papers and other media organisations.
For your
Category: Uncategorised

Replies: 3

Last updated: 8 January 2010
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