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cmlblogger on 29 January 2010

Category: Uncategorised

Replies: 8

Last updated: 10 February 2010

New Travel Insurance questions
by johnw1001 (Feb 10)

Have had CML for 3 years now -at first a big problem to find an insurer but found

JD Travel Insurance -Gill Noble

01689 859 102

www.jdtravelinsurance.co.uk
At first they suggested

by Vangogh (Feb 3)

Hi Been trying to get covered for annual worldwide multi-trip,

Amex, Fortis, Age Concern,Medicitravel all declined!!! I have CML for 2years BCR/ABL at 0.0268% so no problems, but nobody seems

by cmlblogger (Feb 3)

Thanks Sandy
I have no real issue about not being covered for CML issues, as I don't have any I was just really wondering if anyone had been asked for these blood counts in the past as I have'n't

by Annie Kennedy (Feb 1)

Just for comparison - our policy is annual multi trip covering myself, healthy husband and 4 kiddies. Cost is £119 per annum (total for all of us). The reason that it is so much lower is that ours
Category: Uncategorised

Replies: 8

Last updated: 10 February 2010
sandy craine on 27 January 2010

Category: Uncategorised

Replies: 5

Last updated: 2 February 2010

NICE- dasatinib/nilotinib
by Pennie (Feb 2)

These are the same conclusions I came to. Also I agree with your comments with concern at the 'split' in logic between intolerant and resistant.
I guess NICE is allowed to split logic !!
Perhaps

by Simon Clayson (Feb 2)

Since I first read the news I have been trying to follow the logic of this.
If they are no longer going to compare nilotinib and dasatinib with the ineffective but cheap hydroxycarbimide and

by Richard42 (Jan 29)

Makes sense not to include high dose imatinib as a comparator for imatinib intolerant patients, but equally makes sense at least partially (eg if the reason is effective dose for a given patient)

by sandy craine (Jan 29)

Dear Pennie,

still thinking about it but for a start it seems that they have been forced to listen to some of the pressure, but only some. Because NICE refused to accept high dose IM as a
Category: Uncategorised

Replies: 5

Last updated: 2 February 2010
jacqui from Col... on 26 January 2010

Category: Uncategorised

Replies: 8

Last updated: 6 February 2010

Dasatinib Trial first PCR results
by Basil from RSA (Feb 6)

That's great news!

Your response is great and as long as it gets better or stays the same you are doing well!

I think Des and I are just very fortunate to have kept our response off

by jacqui from Colchester (Feb 3)

Peter
Thank you I wished I knew within myself how great this result is - I still don't really understand and my Consultant said it was a great result but would liked to have seen 0.07 rather than 0.

by jacqui from Colchester (Feb 3)

My email address is jacqui@cookbrickwork.co.uk Look forward to heaing from you
jacqui

by Peter Miles (Jan 30)

Congratulations Jacqui - fantastic results. As Sandy suggests - take some time out to celebrate.

God Bless

Peter
Peter Miles

Southport UK
Category: Uncategorised

Replies: 8

Last updated: 6 February 2010
Basil from RSA on 25 January 2010

Category: Uncategorised

Replies: 4

Last updated: 8 February 2010

Des and Basil
by kurt (Feb 8)

Good luck to you guys, and my deepest 'thanks' for having the guts to try. It gives me long term hope, I have only been on Gleevec for 5 months so I have a long way to go still, but if there is a

by Basil from RSA (Feb 2)

Thank you very much for the information you sent me as well as the above post.

I am very interested to also find out about the vaccine under development that Des mentioned.

There are so

by Barbs (Jan 31)

That's great news! well done - I'm going to tell my doctor about it - he's got quite a few patients in the stopping Glivec trial & if I stay PCR-U until july, I can participate if I want to -

by sandy craine (Jan 26)

Dear Basil,

this is good news.... 9 months is pretty good and looks like you might well hold on to PCRu status without imatinib. If you want to know the ongoing results of the French study
Category: Uncategorised

Replies: 4

Last updated: 8 February 2010
bobosbo on 22 January 2010

Category: Uncategorised

Replies: 1

Last updated: 23 January 2010

Dasatinib trial
by jacqui from Colchester (Jan 23)

Hi Bob

I too see the BBC look East and thought the same. I am on dasatinib and doing well

by bobosbo (Jan 22)

Hello everyone,

I have just watched BBC Look East news, one of the headlines was about Colchester hospital starting trials of Dasatinib for men suffering from prostate cancer. I hope that
Category: Uncategorised

Replies: 1

Last updated: 23 January 2010
chris murphy on 21 January 2010

Category: Uncategorised

Replies: 3

Last updated: 24 January 2010

CML - dasatanib and bowel cancer
by Matthew Wilson (Jan 24)

Good luck Brian. Am absolutely sure you will be fighting fit in no time!!

by Matthew Wilson (Jan 24)

Good luck Brian. Am absolutely sure you will be fighting fit in no time!!

by sandy craine (Jan 23)

Dear Chris,
I am sorry to hear that Brian has to agree to such an invasive procedure as total bowel removal but wish him the best outcome possible. It must be daunting for him to contemplate, as

by chris murphy (Jan 21)

Hi
If this is of interest to anyone who gets in this position. Brian, my husband has had CML for three years and is doing very well with dasatanib is now having a bowel cancer operation on next
Category: Uncategorised

Replies: 3

Last updated: 24 January 2010
Andy Parkin on 21 January 2010

Category: Uncategorised

Replies: 5

Last updated: 25 January 2010

Article in Leukemia Jan 2010 edition
by sandy craine (Jan 25)

Dear Andy,
Thanks for the alert to this article which is very good and timely.

See Newswire.....
SandySandy

by sandy craine (Jan 25)

Thanks Ian, I have put the link to the PDF under Newswire.
Sandy

by Andy Parkin (Jan 24)

Thanks Ian, Looks as though this link works well!!

Andy

by ian hinley (Jan 23)

http://www.nature.com/leu/journal/v24/n1/full/leu2009193a.html
Category: Uncategorised

Replies: 5

Last updated: 25 January 2010
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