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Dennis on 1 March 2010

Category: Uncategorised

Replies: 11

Last updated: 3 March 2010

Last day for the Dasatinib/Nilotinib ACD.
by sandy craine (Mar 3)

Dear Alyson,
Your are right and it is a BIG concern ..... I am not sure about the legality of such a move though and I think it would be really hard for them to take treatment away from patients who

by sandy craine (Mar 3)

Dear Don... you are so right, this does affect all of us and the people that have signed the petition and left messages of support prove the point. We are an international community, and we are

by Alyson (Mar 3)

Having studied the latest NICE ACD in order to submit comments by yesterday's deadline. I was horrified to discover that the 'concession' for existing Dasatinib/Nilotinib patients to be able to

by Don Adkins (Mar 2)

This might be a repeat since I was kicked off-line while typing, if so, forgive...
From your Yank friend from across the seas, I'll do all I can.... Let's never give up on this. This truly is an
Category: Uncategorised

Replies: 11

Last updated: 3 March 2010
lynnsch on 28 February 2010

Category: Uncategorised

Replies: 4

Last updated: 4 March 2010

Massage and Nilotinib
by vickiep (Mar 4)

Hi Sandy,

Thanks for the reply...on both Imatinib & Dasatinib the pain didn't start straight away along with the other side effects which as you say, disappear after three months, but

by sandy craine (Mar 2)

Hi vickie, I am sorry to hear that you still suffer the leg/bone pain. I really did find this side effect..although really hard to cope with ... disappeared almost on the dot of 3 months from

by vickiep (Mar 1)

Sandy, although I have read that side effects are said to be different, there are those of us who are suffering the bone pain associated with the Glivec even though we've changed to Dasatinib.

by sandy craine (Mar 1)

Dear Lynn,

this is more likely to be an effect of the massage rather than nilotinib. I think it is probably a coincidence. Massage can effect you by encouraging your body to get rid of toxins
Category: Uncategorised

Replies: 4

Last updated: 4 March 2010
kestrel on 24 February 2010

Category: Uncategorised

Replies: 7

Last updated: 26 February 2010

The Big Zero
by zaviemiller (Feb 26)

Y A H O O O !!! Y I P P E E E !!!

Number 1305 in the Zero Club

Zavie
Rio or Kestrel, could you please email me at zmiller@sympatico.ca
Zavie Miller (age 71)

Ottawa, Canada

by kestrel (Feb 24)

Thank you all - I knew you'd understand!!

kestrel

by kestrel (Feb 24)

Thank you for your interest Susan - I know you have been having a very difficult time since your transplant.
Rio's biggest problem post-transplant has been his reluctance to accept that there is (

by sandy craine (Feb 24)

Dear Kestrel, what fantastic new... after all the negative stuff with NICE etc. it is wonderful to hear that Rio has finally got to zero and that the DLI has finally worked....

Please give him
Category: Uncategorised

Replies: 7

Last updated: 26 February 2010
Janet on 23 February 2010

Category: Uncategorised

Replies: 2

Last updated: 23 February 2010

Novartis Drug Tasigna® Receives FDA Priority Review For Newly Diagnosed Patients With Early-stage Chronic Myeloid Leukemia
by sandy craine (Feb 23)

Thanks Janet,

I had posted an article about this under Newswire which you can still find under the news section...see copy below. It is good to hear that the FDA have approved and we can now

by Dennis (Feb 23)

Well done Janet.
That article must put more pressure on NICE. The only thing that I can pick up after a quick scan through it, is that the Tasigna patients were taking 300mg twice a day. That must

by Janet (Feb 23)

I think this is a press release from Novartis. It's in Medical News Today, and I enclose the main text of the article. In summary, the FDA in the USA thinks nilotinib is so good they are prepared to
Category: Uncategorised

Replies: 2

Last updated: 23 February 2010
sandy craine on 22 February 2010

Category: Uncategorised

Replies: 10

Last updated: 24 February 2010

CML Petition is up and running-PLEASE GET ALL YOU KNOW TO SIGN UP
by sandy craine (Feb 24)

Hi Chrissie.... this is purely and online petition. You could print off the Press statement and make copies. Maybe it would help to explain the background to people in his classes and that might

by sandy craine (Feb 24)

Dear Beth.... have a great time and enjoy that sunshine ;o)

Sandy

by yogiB (Feb 23)

I have signed and forwarded it to all my friends and family.
Thank you for working on our behalf.

After three months I am responding really well, with normal blood count and PCR requested

by chrissie (Feb 23)

Have just been asked by my Tai Chi instructor if we have a paper copy of the petition so he can take it round all his classes. Is this possible?
Category: Uncategorised

Replies: 10

Last updated: 24 February 2010
sandy craine on 19 February 2010

Category: Uncategorised

Replies: 3

Last updated: 22 February 2010

Urgent request-Daily Mail wants to Interview patient for article on Drug shortages
by pat preston (Feb 22)

Dear Sandy, Have only just found your postings re drug shortages and The Daily Mail.
I have been for my normal three monthly appointment today with Prof. Russell and he has given me a prescription

by sandy craine (Feb 21)

www.dailymail.co.uk/news/article-1252407
Sandy

by C Melling (Feb 20)

caroline m

Have just read today's Daily Mail article and then logged on here - so sorry too late to help. I was given an "I owe you" note, for part of my prescription by my hospital pharmacy

by sandy craine (Feb 19)

Jenny Hope of the Daily Mail is running another article on the problem of NHS drug shortages which as you all know is causing a problem for some in getting their prescriptions of imatinib.
She
Category: Uncategorised

Replies: 3

Last updated: 22 February 2010
David Crowther on 21 February 2010

Category: Uncategorised

Replies: 7

Last updated: 23 February 2010

Muscle cramps and spasm
by SwanValleySue (Feb 23)

I still get cramps:
In my left foot

In two left toes
My right hand

In two fingers
Very particular
I also get cramps in ankle (of course left side)

by vickiep (Feb 22)

Yup, me too whilst on Glivec...really bad at night and when putting shoes/socks on or getting in cars!! I did get a little relief from drinking small amounts of Schweppes Tonic Water throughout the

by sandy craine (Feb 22)

Dear Jean... soap definitely does NOT work, although it might make your bed smell nice ;o)

Do try to eat lots of bananas as John has suggested.. they are high in potassium too which is

by Peter Miles (Feb 21)

Hi Jean

Sorry to hear of your cramps and pains - as Sandy says this is quite a common side effect of Glivec. I have suffered with this for the past 8 or 9 years. I too get it particularly when
Category: Uncategorised

Replies: 7

Last updated: 23 February 2010
sandy craine on 18 February 2010

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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
Category: Uncategorised

Replies: 2

Last updated: 11 February 2010
irenekallison on 10 February 2010

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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