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sandy craine on 23 November 2009

Category: Uncategorised

Replies: 2

Last updated: 25 November 2009

NICE ACD- nilotinib/dasatinib
by Alastair C (Nov 25)

I wrote an e-mail summarising all our concerns to my MP last night. I have had a response today with an invitation to call him to arrange an appointment, which I will follow up. I also wonder if it

by vickiep (Nov 23)

Thank you so much for the work you are doing on our behalf Sandy. Your expertise and knowledge in this field are inavaluable to us all.
I am guilty of publishing my email address on a prvious

by sandy craine (Nov 23)

Dear All,

please be assured that we are working on our response to NICE ACD through the correct procedures and as official consultees.
I am also working on a letter which we intend to send to
Category: Uncategorised

Replies: 2

Last updated: 25 November 2009
shelleycharing on 22 November 2009

Category: Uncategorised

Replies: 2

Last updated: 24 November 2009

Dasatinib/NICE - we are not working alone
by sandy craine (Nov 24)

I understand your view Michael. However, industry are bound by rules regarding talking directly to patients/groups who benefit by their products. They are bound (at least in the UK) by strict ABPI

by michael (Nov 24)

I welcome any surport that BMS can offer,yes they have a vested interest,but so do I Dasatanib keep me alive.

BSM I would think have more information on their own drug than any other party,and

by shelleycharing (Nov 22)

From my partner, Alan, CML'er taking Dasatinib:
I've come to this NICE debate a few days late, having received an email from a friend working for a Public Relations firm that has been asked to look
Category: Uncategorised

Replies: 2

Last updated: 24 November 2009
Martha Stuart-B... on 21 November 2009

Category: Uncategorised

Replies: 4

Last updated: 21 November 2009

Baby boy
by Ali Loram (Nov 21)

Very many congratulations to you Martha & a huge welcome to your new baby boy. You are very luck..enjoy him!

Ali

by hcy0da (Nov 21)

Many congratulations, it's a welcome reminder that there is still a lot of good out there with this condition.

by Michelle H (Nov 21)

Congratulations to you and your family Martha.

by sandy craine (Nov 21)

Dear Martha,

many congratulations on the birth of your baby boy. This is great news. Thank you for letting us all know.
Kind regards,

Sandy
Category: Uncategorised

Replies: 4

Last updated: 21 November 2009
Pesty on 20 November 2009

Category: Uncategorised

Replies: 1

Last updated: 21 November 2009

No. 10 NICE Petition - plus NICE Annual Conference in Manchester
by sandy craine (Nov 21)

Dear Michelle,

A petition is certainly worthwhile, and it is something that CML support might do, but wording needs to be carefully thought out and measured.

To be really effective in

by Pesty (Nov 20)

Hi all,
I have applied to create an online 'Official No. 10 Petition' - I have submitted the details and hope to have a link to circulate soon.
I hope this helps!
Also, please see this link:
Category: Uncategorised

Replies: 1

Last updated: 21 November 2009
sandy craine on 20 November 2009

Category: Uncategorised

Replies: 2

Last updated: 21 November 2009

Devon and Cornwall have approve dasatinib and nilotinib
by sandy craine (Nov 21)

I wrote to them and had the answer that they will continue to fund until the TAG (Technology appraisal guidance) is published by NICE. Then they will follow that guidance.

First there is the

by Ali Loram (Nov 20)

Hi sandy, I am on to this already! I have spoken with Devon patient advise & Liason & asked them if they will still fund the drugs. Of course I am worried that they may refuse to fund me any

by sandy craine (Nov 20)

some of you may remember that around 3/4 weeks ago Devon PCT approved dasatinib and nilotinib for chronic and accelerated phases CML that were resistant to imatinib. See Newswire
I will try to find
Category: Uncategorised

Replies: 2

Last updated: 21 November 2009
sandy craine on 20 November 2009

Category: Uncategorised

Replies: 3

Last updated: 22 November 2009

Find your MP
by vickiep (Nov 22)

Thank you for all the work you're doing Sandy

Vickie

by sandy craine (Nov 21)

Dear Carlos... good you have written to your MP. We will update all on the correct -most effective- way to get the health ministers to actually see/read letters that we send them.
There is a way of

by carlos (Nov 20)

I have emailed my local MP Andrew Lansley.
And have sent letters to, Gordon Brown, David Cameron, Andrew Lansley, Andy Burnham and Norman Lamb.
Carlos

by sandy craine (Nov 20)

Link to Parliament website which has a 'find your MP' box .. lower righ hand side of page.
www.parliament.uk
Sandy
Category: Uncategorised

Replies: 3

Last updated: 22 November 2009
sandy craine on 19 November 2009

Category: Uncategorised

Replies: 2

Last updated: 22 November 2009

Pil B's points on the ACD- reposted from string further down page.
by sandy craine (Nov 22)

Phil, it is great to have your input and it is very much appreciated.

Hope your vicious cold is improving. I am almost back to normal ;o)

I am finishing a letter to DH Health ministers

by PhilB (Nov 20)

On top of ignoring all the best scientific data, there are a few more sneaky things they've done. In particular they have rigged the model so that a very large proportion of patients die of non-cml

by sandy craine (Nov 19)

I thought it worth reposting Phils summation of his reading of the ACD from the discussion lower down the page.
I agree totally with Phil's take on the model NICE have used as one that is not based
Category: Uncategorised

Replies: 2

Last updated: 22 November 2009
sandy craine on 19 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

Contact me
by michael (Nov 19)

I have E-mailed my MP Dr Howard Stoat who is a part time GP and a member of most of the All party groups regarding health.

If everyone looks up their MP to see if they have any health

by sandy craine (Nov 19)

Dear Carlos,
It might be really good to see him face to face if you can... all MP's have a weekly surgeries in their constituencies.

Sandy

by carlos (Nov 19)

My local MP is Andrew Lansley. I will definately be pushing him.
I have also forwarded my letter to friends and relatives so they can tell their mps.
Carlos

by sandy craine (Nov 19)

Dear All,

please contact me privately so that I can put you in touch those interested in listening to your stories.
I think we need to be very strategic and clear in our arguments.
I am
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Pennie on 19 November 2009

Category: Uncategorised

Replies: 7

Last updated: 20 November 2009

letters and emails sent re NICE
by carlos (Nov 20)

Here is a link to why these drugs must be allowed they can and do help other people.
www.metro.co.uk
Carlos

by Tufty3 (Nov 19)

Did anyone see the story on GMTV and ITV news today, about the Liver Cancer drug, which extends life for just a few months, being refused by NICE and the relaxed criteria for drugs which extend the

by Pennie (Nov 19)

Great Sarah, I hope they pick up the story. Good luck.
know what you feel about being winded - Ifeel as if panic has taken over my brain and pure anger is whats keeping me functioning.
We all have

by Pennie (Nov 19)

Carlos

I wrote an intro asking for help to overturn the decision - use full name of the document. I quoted para 1.1.1 in full to make clear what I was objecting to.
Bit about myself, suggest
Category: Uncategorised

Replies: 7

Last updated: 20 November 2009
bobosbo on 18 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

Hearing
by bobosbo (Nov 19)

Hello Bhiru,

I have tried both Olive oil, top quality only, & ear drops, but both have failed to do the job. I have made an appointment to see the nurse to have them syringed out.

by Bhiru (Nov 19)

Hello All,
Given that syringing is not the most fun, have you tried loosening the wax with olive oil? My husband has been recommended he do that by a nurse and a pharmacist who both said buying ear

by Annie Kennedy (Nov 18)

This is a bit weird - I have been on glivec for 5 years now - in the last year have had problems with ears on and off - I know its wax problem (never had any problems with ears before now) - really

by bobosbo (Nov 18)

Has anyone had problems with the build up of excessive amounts of earwax since starting on Imatunib.

I was dx in Dec08 & untill July 09 had never had a problem with excessive earwax. Had
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Michelle H on 18 November 2009

Category: Uncategorised

Replies: 1

Last updated: 18 November 2009

CML Transplants requiring DLI
by sandy craine (Nov 18)

Dear Michelle,

This is a real dilemma for you and must be so difficult. How old is your son, 11?
I understand that U Cords are a very successful source of donor cells because they contain very

by Michelle H (Nov 18)

We have been advised that my young son should have a Umbilical Cord Transplant. There is a donated umbilical cord with a 9/10 match on reserve for him. He changed from Imatinib to Dasatinib in
Category: Uncategorised

Replies: 1

Last updated: 18 November 2009
sandy craine on 18 November 2009

Category: Uncategorised

Replies: 22

Last updated: 23 November 2009

NICE ACD- nilotinib/dasatinib
by vickiep (Nov 23)

I now think that all we actually need to do is get a petition link that we can all paste into our Profile page on F.Book.

Vickie

by vickiep (Nov 23)

I think it's important to start a Facebook Group of our own in order to maintain our personal/family privacy. I have no idea how this could be best achieved. We'd need administrators and we'd need

by Sarah R (Nov 23)

removed

by Pesty (Nov 23)
Category: Uncategorised

Replies: 22

Last updated: 23 November 2009
michelle on 17 November 2009

Category: Uncategorised

Replies: 6

Last updated: 26 November 2009

GP wasn't sure if I needed 2 vaccinations for swine flu on glivec pls advise
by fehr (Nov 26)

I made the point about normal blood counts to my GP and he replied that we had better assume that I am immuno-suppressed. I have to have two jabs, three weeks apart. First one was two days ago

by vickiep (Nov 22)

My Oncologist said that with the blood count showing "normal" that I was not immuno "vulnerable". (Stuck for the right word just now!) My G.P. however, is of the opinion that "better safe than sorry

by Dennis (Nov 18)

Got a letter from my GP this morning saying that the swine flu vaccination comes in two doses - three weeks apart. I have to have both vaccinations.

by Steven D (Nov 17)

I saw my consultant at Hammersmith last week and was advised to have both flu and swine flu jab and that I need only one dose of the swine flu. I am on 400mg of Imatanib.
Hope this helps
Steven
Category: Uncategorised

Replies: 6

Last updated: 26 November 2009
Johannah on 17 November 2009

Category: Uncategorised

Replies: 3

Last updated: 17 November 2009

New Member
by Johannah (Nov 17)

Hi, thank you for your replies and welcomes. I didn't have an enlarged spleen. My platelets are now 3.27, wbc 5.19 and rbc 3.69 (which I believe is low). Hb level is 13.1. I feel so much better

by michael (Nov 17)

Hi Johannah did you have a enlarged spleen when you were dx in

August,can cause breathlessness as it can get pretty cramped in the rib cage.Oh and welcome to the group.

Michael

by kurt (Nov 17)

Hi Johannah, what is your red blood cell count? Mine was quite low at one stage, still is not where it should be, but it also causes me to run out of breath, as they increase I feel better.

I

by Johannah (Nov 17)

Hi, my name is Johannah, I am 55 and I was diagnosed with CML in August. Since then I have been taking Gleevec 400mg and my bloods have now stabilized. My red platelets especially were extremely
Category: Uncategorised

Replies: 3

Last updated: 17 November 2009
kestrel on 17 November 2009

Category: Uncategorised

Replies: 5

Last updated: 23 November 2009

Post-BMT chromosome abnormalities
by kestrel (Nov 23)

Thanks for replies. For me as Rio's carer, this post-transplant period is harder in some ways than the transplant - but I do believe we will get there one day. We can only keep on keeping on in the

by skiinglaketahoe (Nov 20)

Hi Kestrel
It was nice to hear how Rio is getting along. I know that you posted a short while ago and I meant to reply to you but never quite got there.
Anyway, I am glad that the PCR is slowly

by sandy craine (Nov 19)

Hi Kestral,
I know they like to see a rash or some evidence of low level GVHD which points to GVL ... but I never had any sign at all... by the 4th (I started with 2.5 million and ended with 50

by kestrel (Nov 18)

Hi Sandy,

Rio has had 2 DLIs so far and is due the 3rd in early Dec. I know the first dose was very very low. We haven't seen any GvHD, tho I would find a rash reassuring!! Apparently (I
Category: Uncategorised

Replies: 5

Last updated: 23 November 2009
amanda1977 on 15 November 2009

Category: Uncategorised

Replies: 5

Last updated: 17 November 2009

myeloidysplasia
by Annie Kennedy (Nov 17)

Amanda

I have no experience of Ninewells but the leading centre for CML in Scotland is Glasgow (Tessa Hollyoake) which is highly regarded. I attend the Western General in Edinburgh which I'm

by amanda1977 (Nov 17)

Pennie, thanks for sharing that link i will go have a look at it now, im being treated in ninewells hospital, dundee
Barbara, i have a bone marrow biopsy done every 3 months, i get blood tests done

by Barbs (Nov 16)

Hi Amanda

are you sure that you really have signs of myelodysplasia in your CML cells?

Some of us get chromosomal abnormalities in philadelphia negative cells & can show signs of

by Pennie (Nov 16)

Hi again Amanda
I have been thinking a lot about you over the weekend. I wonder if you have looked at Elizabeth Rees diary - look on this sites home page, scan down till you find the link. She is
Category: Uncategorised

Replies: 5

Last updated: 17 November 2009
sandy craine on 13 November 2009

Category: Uncategorised

Replies: 14

Last updated: 18 November 2009

NICE ACD- nilotinib/dasatinib this coming Monday.
by sandy craine (Nov 18)

Dear Richard,

firtsly I want to reassure you that you are more than likely to continue to have a good response to imatinib. The majority of CML patients respond very well and hold that

by sandy craine (Nov 18)

Dear Phil,
I am absolutely in accord with your points. I hope that others will be able to make the same or similar arguments about the inappropriate model that NICE is using and the points about the

by Sarah R (Nov 18)

Dear Phil and Sandy
I have just sent of letters of protest to the Secretary and Ministers for Health, the Chief Medical Officer, my PCT and our GP on behalf of my 17 year old son with CML. I have

by Richard42 (Nov 18)

I'm quite new to this (Dx May 09) but was shocked to read the summary in the NICE report. Every consultant I've seen (and I've seen about half a dozen) has said that if imatinib doesn't work there
Category: Uncategorised

Replies: 14

Last updated: 18 November 2009
drjamespotter on 12 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

New member
by maryb (Nov 19)

Hi James,
I have only just joined the support group after hearing about it at the Nottingham Seminar last week. I too live near Derby. I was diagnoed a year ago and am on Imatinib. I suffer a few

by Richard42 (Nov 13)

Hi James
I'm new to the group too. Diagnosed in late May - like you after routine blood screen.
I had high platelets but only moderatly raised WBC at diagnosis - which is unusual but apparently I

by Vangogh (Nov 13)

Hi James

Welcome to our very exclusive club. I wish you every success with your treatment.

Tony

by drjamespotter (Nov 12)

Hello,
I am James and I live near Derby. I was diagnosed with CML 2 weeks ago after a routine blood test for a minor chest problem. Been on Imatinib 2 weeks with no side-effects and my white blood
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Vangogh on 12 November 2009

Category: Uncategorised

Replies: 1

Last updated: 12 November 2009

Latest Results
by sandy craine (Nov 12)

Dear Tony....... great result. Enjoy your extra G&T.
best wishes,

Sandy

by Vangogh (Nov 12)

Hi

Just got my latest results of my bone marrow tests from Kings, very uncomfortable this time, but not painful. I just have a local jab, don't fancy being put right out. Anyway after 15
Category: Uncategorised

Replies: 1

Last updated: 12 November 2009
chrissbb on 12 November 2009

Category: Uncategorised

Replies: 4

Last updated: 14 November 2009

Nottigham Seminar
by bobosbo (Nov 14)

Have just got home from the seminar, & what a great day it was.

Very informative, with speakers who made it all very easy for the layman to understand. It was nice to finally speak with

by Barbs (Nov 14)

I hope that you all have a good day- look forward to hearing all about it

Barbara

by chrissbb (Nov 12)

Thanks for that Sandy. Its a shame you can't make the seminar, it would have been nice to meet you. I hope you make a speedy recovery from the nasty bug. Hope the websites get some feedback after

by sandy craine (Nov 12)

Hi Chris,

sorry to hear you are having strange effects from Glivec. I am sure you will be able to talk to one of the clinicians at the Seminar and get some kind of feedback and understanding
Category: Uncategorised

Replies: 4

Last updated: 14 November 2009