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sandy craine on 18 February 2010

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Replies: 1

Last updated: 19 February 2010

NICE meeting
by sandy craine (Feb 19)

www.writetothem.com"
Sandy

by sandy craine (Feb 18)

I have registered to attend (as an observer) the NICE meeting on March 9th in Manchester. It might be that there is a place for one other. Anyone interested?

Sandy
Category: Uncategorised

Replies: 1

Last updated: 19 February 2010
Simon Clayson on 17 February 2010

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Replies: 5

Last updated: 19 February 2010

NICE ACD- imatinib intolerance
by Janet (Feb 19)

If you copy and paste the link below, it will take you to a page where all the comments received on the first appraisal document are listed
http://www.nice.org.uk/guidance/index.jsp?action=folder

by sandy craine (Feb 18)

I am sorry if I did not make it clear the this is a new ACD and you will need to make new comments via the NICE website....

see my previous post below:
Submitted by sandy craine on Tue, 2010-

by Simon Clayson (Feb 17)

The link is on the Newswire dated 9 February on the right of this page. It is a new consultation so my understanding is that we need to comment again. You would hope they would carry forward

by Dennis (Feb 17)

Can you give the link to the NICE document please?
To be honest Simon, I hadn't realised that another response was needed. Maybe others hadn't either? That's no excuse I know, but it is the reason
Category: Uncategorised

Replies: 5

Last updated: 19 February 2010
ian hinley on 15 February 2010

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Replies: 2

Last updated: 18 February 2010

Drugs shortage
by johnw1001 (Feb 18)

Please see my contribution to the related thread titled"Difficulties in supplying Imatinib".In response to Ian I believe that it is always good for those who are experiencing problems in sourcing

by yogiB (Feb 16)

Following Ian's posting and reading the BBC news article, I immediately contacted my local MP online. Hopefully he can be aware of this growing problem and help do something about it.
Is it worth

by ian hinley (Feb 15)

http://news.bbc.co.uk/1/hi/health/8516080.stm
Category: Uncategorised

Replies: 2

Last updated: 18 February 2010
yogiB on 12 February 2010

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Replies: 7

Last updated: 21 February 2010

CMLers in Surrey/Middlesex?
by Pennie (Feb 21)

Sorry just read the post on site. Hope the meeting was good. Will try to make the next one.

ATB

Pennie.

by yogiB (Feb 21)

Are you near Hampton Court Pennie, as Caroline and I are meeting up this afternoon at Zizzi's - 3.30. It would be great if you could join us!
beth

by yogiB (Feb 15)

my email is bethshay22@hotmail.com. I am free this sunday and next if you would like to meet up.

beth

by C Melling (Feb 15)

caroline m

yes it would i live in surbiton.

What about one of the parks or along the river?

caroline
Category: Uncategorised

Replies: 7

Last updated: 21 February 2010
sandy craine on 11 February 2010

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Replies: 4

Last updated: 17 February 2010

Interesting Blog: Nice says NO!
by keith Pratt (Feb 17)

Good to hear from you. We have come a long way from our first telephone call all those years ago when you were enquiring about STI 571, and then your fight to get it! He ho, time does pass quickly

by Pennie (Feb 14)

Hi Keith

Great to hear from you old timer ! So pleased for you that your results on Dasatinib are so good, this is fantastic news.
Like you I am incensed almost beyond words. It feels so

by keith Pratt (Feb 14)

Hello

Not posted for some time, but I find that I amtoo incensed at what I read about yet another debacle of a decision made by the keepers of the nation's health, i.e. NICE. I was party to

by Dennis (Feb 12)

Sandy, who is running the health service - NICE or the government?
If you read NICE's comments, the clinical effectiveness of these two drugs are conceded. However, NICE move more and more towards
Category: Uncategorised

Replies: 4

Last updated: 17 February 2010
Olivia on 10 February 2010

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Replies: 2

Last updated: 11 February 2010

Times column on 'big pharma'
by Richard42 (Feb 11)

It does indeed make clear and salient points. What I find objectionable about NICE's approach is that it to me seems to have an agenda which isn't necessarily about use of resources, but price

by sandy craine (Feb 10)

Hi Olivia,
Yes I read this excellent article by Jonathan Waxman who is Professor of Oncology at Imperial College, London and is a big critic of NICE. He makes so very salient points in this and the

by Olivia (Feb 10)

I found this article quite interesting - good to see that some other people think NICE is not all it's cracked up to be...
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/a
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Replies: 2

Last updated: 11 February 2010
irenekallison on 10 February 2010

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Replies: 13

Last updated: 19 February 2010

Paracetamol
by sandy craine (Feb 19)

Hi Michelle,

I cannot specifically recommend that you take any herb as some of them (like St. John's Wort) are contra-indicated if you are taking imatinib. however I know that there are many

by michelle (Feb 18)

I have taken paracetamol before..I am interested in all your comments and would like to know more about taking the Milk thistle supplement.. should I take this to protect my liver whilst on Imatinib

by sandy craine (Feb 16)

Dear John/all,
the reason why you should not take paracetamol is because it one of a class of drugs (a very large class) synthesized by the liver.... as is imatinib.

It is fine to take

by fehr (Feb 14)

In the early days of my CML, I had very painful bursitis, amongst other things, and took maximum quantities of 30/500 co-codamol for several months, to the point that I became dependent on the
Category: Uncategorised

Replies: 13

Last updated: 19 February 2010
Pennie on 9 February 2010

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Replies: 6

Last updated: 11 February 2010

NICE ACD - Imatinib Intolerance
by sandy craine (Feb 11)

I am preparing a statement over the next few days.... I have also decided to see how many of us can be present at the FAD meeting on March 9th in Manchester. I will let you know how this pans out.

by Richard42 (Feb 11)

This whole issue does anger me as it does everyone. Sandy knows best the battle with NICE over imatinib but my impression seems to be "here we go again". They simply won't accept the notion that

by karen (Feb 11)

I have a decent bike chain that we could use and I was in the Brownie's so I htink I can remember a few knots if someone brings the string!!!

Kx

by Pennie (Feb 10)

Oh Pat do you remember those early days when we were planning a 'CML refugee from NICE' coach to Scotland - seems we are almost there again.
Chaining ourselves to the railings in Downing street -
Category: Uncategorised

Replies: 6

Last updated: 11 February 2010
Joe Flanagan on 9 February 2010

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Replies: 5

Last updated: 16 February 2010

Phosphate Suppression
by vickiep (Feb 16)

Following a thread there, I took a look at this because of the possible link with "bone pain"...what I 'think' I'm reading is that a low Phosphate count will often be accompanied by a low

by Joe Flanagan (Feb 11)

Thanks Sandy will do.
Joe

by sandy craine (Feb 10)

Joe, you might want to research the relationship between calcium and potassium levels. It is a good idea for everyone to eat potassium rich foods like bananas etc.... low levels can have an effect

by Joe Flanagan (Feb 10)

Sandy
I understand that low phosphate levels cause bone pain and cramps.
Joe
Category: Uncategorised

Replies: 5

Last updated: 16 February 2010
Jed on 9 February 2010

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Replies: 2

Last updated: 9 February 2010

NICE ACD
by sandy craine (Feb 9)

Hi Jed,
On behalf of CML Support Group, I am currently responding to this ACD. I also urge all of you to respond as individuals on the NICE website. ... Please see my post below for how you might

by Jed (Feb 9)

FYI comments and responses to the original ACD:
http://www.nice.org.uk/guidance/index.jsp?action=folder&o=47301

by Jed (Feb 9)

It seems that NICE have released the ACD for imatinib intolerant individuals:
http://www.nice.org.uk/guidance/index.jsp?action=article&o=47297
Their current recommendation is still to not make
Category: Uncategorised

Replies: 2

Last updated: 9 February 2010
pat preston on 9 February 2010

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Replies: 8

Last updated: 2 March 2010

Difficulties in supplying Imatinib
by Bee (Mar 2)

That's good to know John. Thanks.

Ted's now had 2 out of his current 3 months supply - but still only one month at a time at the moment. Hopefully things will be back to normal here soon as

by fehr (Feb 27)

Today, I got three months supply without problem.
John

by fehr (Feb 14)

My supply comes from a local small Boots and they always get it direct from Novartis, who are 15 miles down the road, when they get my prescription. I assume that cash flow is not an issue since

by sandy craine (Feb 11)

Dear John.... thanks so much for the explanation about the situation with traders and speculators. I have spoken with someone at Novartis on this issue and was told that this is a real problem....
Category: Uncategorised

Replies: 8

Last updated: 2 March 2010
sandy craine on 8 February 2010

Category: Uncategorised

Replies: 14

Last updated: 10 February 2010

Imatinib intolerance
by pat preston (Feb 10)

Dear friends,
I have asked my friend Pat Preston to post this for me because I do not have a computer but I do know about what cmlsupport are trying to do about the decision by NICE to not fund

by PhilB (Feb 10)

You have to dig a little deeper to see the true insanity of the NHS and VAT. Yes the NHS is charged VAT, but it is then able to recover it from HMRC. In order to maximise this VAT recovery they

by sandy craine (Feb 10)

Dear Irene, thank you for sharing your experience of imatinib intolerance. As your story clearly illustrates 'intolerance' is not quite as straight forward or simple as the word implies. It can be

by sandy craine (Feb 10)

Hello Steven,

I hope your PCT is prepared to fund nilotinib. Talking of savings- just implementing a system of one phone call to remind patients of their appointments -like my dentist and
Category: Uncategorised

Replies: 14

Last updated: 10 February 2010
yogiB on 7 February 2010

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Replies: 1

Last updated: 8 February 2010

just joined so nice not to feel alone!
by cmlblogger (Feb 8)

I am not sure there is any real long term (10+ years) knowledege yet as the drugs haven't been available for that long
for me when I was DX'd my GP said I had 1-3 years to live without treatment and

by yogiB (Feb 7)

Hi everyone - my name is Beth and I feel really grateful that this site exists.
I have had a pretty extraordinary 3 months since being dx and have been in BC remission for a month, with a PCR test
Category: Uncategorised

Replies: 1

Last updated: 8 February 2010
yogiB on 6 February 2010

Category: Uncategorised

Replies: 12

Last updated: 12 February 2010

Holistic and complimentary regimes
by jacqui from Colchester (Feb 12)

Hi Beth
Im based near colchester - hey happy birthday it was my birthday on the 31st so we are both aquarians

Hwy don't you have my email address and we can discuss what we are getting up to

by yogiB (Feb 10)

Yes - it is a wonderful feeling. My entire journey has been full of signs, portents, good wishes and revelations. Where I had been wondering ;what's the point... not in a depressed way... I really

by jacqui from Colchester (Feb 10)

Yes I am doing fine - infact I noticed that you have read Louise Hay's books and I have been working on a similar path.

Although I didn't realise that I was ill when I was diagnosed - my

by yogiB (Feb 9)

and how are you doing?
Thank you for reaching in and sharing what you have been doing.
I have found it a really wonderful time for 'taking stock', addressing what needs to be addressed and looking
Category: Uncategorised

Replies: 12

Last updated: 12 February 2010
sandy craine on 5 February 2010

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Replies: 5

Last updated: 9 February 2010

Number 10 petition response.
by Janet (Feb 9)

Hmm, don't be too confident about the position in Wales. The AWMSG says very clearly on their website that NICE judgements take precedence.
Janet

by Richard (Feb 9)

Yes, I know, but, as a welshman, I didn't want to be partisan! I live in England, but, although the side effects of the Imatinib are uncomfortable, I am not allergic to, or intollerant of it. My

by cmlblogger (Feb 8)

Wasn't there a discussion/change in NHS funding where patients could top up funding for medication where the NHS wouldn't and not impact their NHS funding.
I know for some people finding that extra

by sandy craine (Feb 6)

Yes Richard, and also Wales. I was in touch with a member of ours last year who had to do this. But we need to fight for parity with the rest of the UK and Europe.

Best wishes,

Sandy
Category: Uncategorised

Replies: 5

Last updated: 9 February 2010
johnh on 5 February 2010

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Replies: 1

Last updated: 5 February 2010

No 10 Response to Petition
by sandy craine (Feb 5)

Hi John..... just posted my thoughts at the same time as you.

Yes....... I agree that the battle goes on in the light of NICE separating intolerance from resistance. See my comment on this

by johnh (Feb 5)

I have just received a response from the Government to the Dasatanib and Nilotonib petition.
"In response to the concerns that many people have about the availability of dasatinib and nilotinib for
Category: Uncategorised

Replies: 1

Last updated: 5 February 2010
chrissie on 4 February 2010

Category: Uncategorised

Replies: 6

Last updated: 8 February 2010

Puffy eyes
by kurt (Feb 8)

I have been on Gleevec for 5 months now, and have only suffered from one eye being puffy once, it was not sore, just felt uncomfortable, went away after 3 days though.

by chrissie (Feb 6)

Thank you all so much for your tried and tested remedies. I shall be trying all of them in the hope that at least one may help! Mustn't grumble, though, as I feel fortunate that this is the only

by lynnsch (Feb 5)

Hi Chrissie,
Although I never got rid of my eye bags completely, drinking water made a massive difference for me. Before dx I drank the 1.5 litres a day but when I was taking Glivec I needed to

by sandy craine (Feb 5)

Hi Chrissie...... unfortunately this is a common side effect of imatinib and there is little that can be done. I had this side effect for the 4 years or so I was taking IM and never really found a
Category: Uncategorised

Replies: 6

Last updated: 8 February 2010
fish4 on 4 February 2010

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Replies: 2

Last updated: 5 February 2010

Newswire Webcast LL Society
by Olivia (Feb 5)

I'd like to add my thanks to Sandy - as well as informing me when I talk to the doctor, it will help me to explain things to my family.

Olivia

by vickiep (Feb 4)

I got a very great deal from the program which is presented in an easily understandable language and a language which I now feel more confident in using with my clinician. Well worth taking the tim

by fish4 (Feb 4)

Hi All
The webcast posted in the newswire section today is for me the best and most "street talk" explanation of CML that I have heard. I got an enormous amount of info out of it
Sandy thanks for
Category: Uncategorised

Replies: 2

Last updated: 5 February 2010
Olivia on 4 February 2010

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Replies: 1

Last updated: 4 February 2010

Thank you Sandy and everyone else
by sandy craine (Feb 4)

Dear Olivia,

thank you for taking the time to let us know that you find this site valuable and supportive. It really helps to know that people are still finding it to be a useful resource. Of

by Olivia (Feb 4)

I have not posted since starting on Glivec three months ago, but I wanted to let everyone know how extremely valuable this site is (but of course you all knew that). I have used it many times, and
Category: Uncategorised

Replies: 1

Last updated: 4 February 2010
Johannah on 31 January 2010

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Replies: 5

Last updated: 1 February 2010

Rib Pain
by Peter Miles (Feb 1)

Hi Johannah

Haven't taken anything so far except for a few deep breaths. I too notice it more if I am dehydrated or tired.

Peter Miles

Southport UK

by remw (Feb 1)

remw

I used to get this quite often after playing a lot of sport, for me I think it was related to being a little dehydrated and tired. I notice it sometimes if I have not drunk enough fluids

by Johannah (Feb 1)

Thanks Chris and Peter for getting back so quickly. Do you take anything for the pain when it gets bad?

best wishes

Johannah

by Peter Miles (Jan 31)

Hi Johannah and Chris

I'm on Glivec and have not experienced rib pain as such but the muscles (the less flabby bit!)around the lower ribs in particular keeps going into spasm - very painful
Category: Uncategorised

Replies: 5

Last updated: 1 February 2010