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sandy craine on 11 May 2011

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Replies: 1

Last updated: 11 May 2011

Letter Templates to send to MP's- 4 versions are now uploaded on the Home page
by sandy craine (May 11)

I have uploaded the 4 separate templates as well as the link to the new petition for this current ACD for imatinb resistance.

The 'old' petition for imatinib 'intolerant' is

by sandy craine (May 11)

Please see home page for 4 versions of Letters you can send to your MP's. You can mix and match as you see fit.

I hope they are of some help. apologies that it has taken us a few days to
Category: Uncategorised

Replies: 1

Last updated: 11 May 2011
sandy craine on 10 May 2011

Category: Uncategorised

Replies: 3

Last updated: 11 May 2011

Sign our Petition: NICE? I don't think so!
by sandy craine (May 11)

Hi Ian... this is not the same sort of petition as the Number 10 one- which I think you need to get over 500 for a response..

Ours however, is independant and we can leave it open for as long as

by ian hinley (May 11)

Hi,

I was wondering how many signatures required for the petition to be answered?

I think it was 1500 last time but could be wrong...

Ian

by ni2i (May 10)

Sorry for keep bugging you Sandy, but would it benefit if i do a paper petition as well that can be sent to nice as some of my older family relatives don't have a computer. I can get them done

by sandy craine (May 10)

Until I can contact our tech guy (who's wife has just had a baby) please use the link below to sign the new petition against the NICE preliminary ACD for dasatinib/nilotinib/high dose
Category: Uncategorised

Replies: 3

Last updated: 11 May 2011
Jed on 9 May 2011

Category: Uncategorised

Replies: 1

Last updated: 9 May 2011

NICE ACD - Are you willing to speak to the media?
by jackieb38 (May 9)

Hi jed,

I replied on the other thread but thought I'd best reply here in case it gets lost.

I am resistant to Imatinib and because of NICE's decision I am now in limbo waiting

by Jed (May 9)

Hi Everyone,

Is anyone currently having a sub-optimal response to imatinib who would be willing to talk to the media about themselves and NICE’s recommendation?

For those who don
Category: Uncategorised

Replies: 1

Last updated: 9 May 2011
ruddoug09 on 9 May 2011

Category: Uncategorised

Replies: 5

Last updated: 8 June 2011

Oh no.
by ruddoug09 (Jun 8)

Thanks Vickie!

by vickiep (Jun 7)

Brilliant news!!

Well done..

Vickie

by ruddoug09 (Jun 6)

After the most stressful three weeks of my life I received a fantastic phone call from my doctor on Friday. The PCR has dropped to 3.78% and I don't need to swap drugs...standard Imatinib is indeed

by ruddoug09 (May 11)

Thanks for the reply Sandy, I'm being treated at Wansbeck General Hospital in Ashington, Northumberland. My consultant is trying to push through the test to get news before the deadline
Category: Uncategorised

Replies: 5

Last updated: 8 June 2011
jackieb38 on 9 May 2011

Category: Uncategorised

Replies: 4

Last updated: 12 May 2011

Help with writing to health minister etc to protest Nice's decision.
by chrissie (May 12)

Jackie, I am just so happy for you. Good luck with Dasatinib.

best wishes

Chrissie

by sandy craine (May 11)

Well done...what a relief- and a timely move for you. Good luck with your response to dasatinib

Bw Sandy

by jackieb38 (May 11)

Thanks Sandy,

Prof Craddock rang me today to tell me my pct had agreed to fund Dasatinib for me.

I was really suprised and pleased as we were both expecting a long fight ahead. I will still be

by sandy craine (May 11)

Hi Jackie... I am sorry to hear this- it must be worrying for you. Prof. Craddock is very experienced in getting his patients on the right therapy and I am sure he will be able to fight your case
Category: Uncategorised

Replies: 4

Last updated: 12 May 2011
shelleycharing on 8 May 2011

Category: Uncategorised

Replies: 2

Last updated: 11 May 2011

Petition
by shelleycharing (May 11)

Thanks for the explanation Sandy, and for setting up the new petition. You're doing a great job.

Very best wishes

Shelley and Alan

by sandy craine (May 11)

Hi Shelley... no you have not wasted your signatures.. the older petition is still live (we delivered 1200 signatures to the NICE appraisal committee last year on behalf of intolerant patients)

by shelleycharing (May 8)

Sandy, I am posting on behalf of Alan Quarterman.

Alan received a letter from Leukaemia Care re the NICE ACD which directed him to this website for a petition.

The only petition is the
Category: Uncategorised

Replies: 2

Last updated: 11 May 2011
syed78 on 8 May 2011

Category: Uncategorised

Replies: 7

Last updated: 22 August 2011

Cost for Glivac - UK
by Smahmood (Aug 22)

Hello

Sorry for the late reply. I live in London. If you want to talk or need any help you can email me on maan212@yahoo.com.

Regards

Shaz

by syed78 (Aug 14)

Hi Shaz,
I have just arrived UK on settlement visa married to British national. I was wondering if you can help me / share some experience for Glivac treatment in UK. I am currently in Manchester.

by syed78 (May 27)

I am treated at AKU. Initially paid by me then through a social body active through Novartis

by sandy craine (May 18)

As Shaz has indicated - as you are married to a British national, I am sure you will be able to access the NHS and therefore continue with your treatment. Take a look at the Department of Health
Category: Uncategorised

Replies: 7

Last updated: 22 August 2011
fehr on 6 May 2011

Category: Uncategorised

Replies: 4

Last updated: 18 May 2011

Managing Treatment Related Side Effects website
by EmChops (May 18)

Hi Olivia

i was told to avoid grapefruit, Seville oranges (but others are ok) and pomegranate.

My consultant was very specific about this and it was in all the trial notes too. I am on

by sandy craine (May 18)

Hi Olivia, I think oranges and other citrus fruit are OK- Grapefruit juice has another componant that means it interacts with TKI's. I am sure you can carry on eating your lovely home made

by Olivia (May 18)

I, too, found this useful, but I have a question. One of the slides said that, in addition to avoiding grapefruit, we should also avoid Seville oranges. I wonder if anyone has been

by vickiep (May 7)

I found this really helpful, thanks for posting!

Vickie
Category: Uncategorised

Replies: 4

Last updated: 18 May 2011
sandy craine on 6 May 2011

Category: Uncategorised

Replies: 47

Last updated: 12 May 2011

NICE MTA dasatinib, nilotinib and high dose imatinib for imatinib resistant CML
by Richard42 (May 12)

It basically means the price the Government pays for drugs will be based on therapeutic benefit. Under that approach, drugs that make a big difference ought to get a higher price - perversely, if

by jkaccounts (May 12)

Thanks for your letter. Could you kindly confirm with your MP what 'value-based pricing' means.

Looking forward to your feedback.

Best regards,

RM

by John M (May 11)

There was a 3 year study on Dasatinib which reported some time in 2008. I think it was done at Imperial in the UK.

I know because I was told that the expectation, based on data from that trial

by Steven Davies (May 11)

Last night I was interviewed by my local paper and photographed holding a box of Imatinib and Nilotonib,

About 20 minutes ago I phoned LBC radio staition which is currently talking about money
Category: Uncategorised

Replies: 47

Last updated: 12 May 2011
alison28 on 28 April 2011

Category: Uncategorised

Replies: 6

Last updated: 2 May 2011

Latest results
by Jojo (May 2)

Well done Alison on such a great result already...you must be really pleased. Hope you enjoyed your celebrations! jox

by zaviemiller (Apr 29)

YAHOOO!!! YIPPEEE!!!
Number 1381 in the ZERO CLUB
Zavie

Please email me at zmiller@sympatico.ca

by Don Adkins (Apr 29)

Congrats Alison! Zavie should be along shortly with your "0" club number.

Celebrate and enjoy life!

Regards,

Don

by hcy0da (Apr 29)

Well done Alison, it's a great feeling seeing those zeros.
Category: Uncategorised

Replies: 6

Last updated: 2 May 2011
Ali Loram on 26 April 2011

Category: Uncategorised

Replies: 6

Last updated: 20 June 2011

Bosutinib blow.
by Jojo (Jun 20)

Hi Ali I was going to e-mail you to see what you decided, I didn't think there would be a chance you wouldn't be accepted on the trial! I'm glad your levels are low, but like you say, you could

by Ali Loram (Jun 20)

Just to let you know, I have been refused for the PACE trial as i am to well, if that makes sense! My latest marrow biopsy last month showed the level to be less than 0.035, which is a great place

by Ali Loram (May 5)

Sandy, many thanks for that, I will email you privately.

by chrissie (Apr 27)

Dear Ali,

Like others on this forum, I have been wondering how you are getting on. I am so sorry that Bosutinib isn't working out . My thoughts are with you with fingers firmly crossed
Category: Uncategorised

Replies: 6

Last updated: 20 June 2011
Paul Ralph on 21 April 2011

Category: Uncategorised

Replies: 6

Last updated: 6 December 2013

Eye Bleeds
by sandy craine (Dec 6)

Arnica (homeopathic tabs of 30c) is excellent in healing bruising and trauma of any kind- the blood that is visible on the white of the eye is like a seeing a bruise that is not covered by skin.

by Jeanette Douglas (Dec 6)

Thanks Sandy and others who have offered kind advice and thoughts. After almost 5 years I had begun to not think about CML every day and so the eye bleeds are a reminder again that things are not

by sandy craine (Dec 5)

I don't have any real answers to this very commonly reported side effect- and I am not sure that clinician or anyone else know why this happens to so many CML patients treated with TKIs. I have just

by Steven Davies (Dec 5)

Hi Jeanette
I used to suffer with them when I was on imatinib.
I would go and see your optician and ask them to check that nothing else is going on.

It probably is the medication but best to
Category: Uncategorised

Replies: 6

Last updated: 6 December 2013
hcy0da on 16 April 2011

Category: Uncategorised

Replies: 6

Last updated: 25 April 2011

0.000 - Yipee
by zaviemiller (Apr 25)

Number # 1376 is taken. Your number is 1380.

So, once again

YAHOOO!!! YIPPEEE!!!

Number 1380 in the Zero Club

Zavie

zmiller@sympatico.ca

by zaviemiller (Apr 24)

YAHOOO!!! YIPPEEE!!!
Number 1376 in the Zero Club
Zavie

Please send me a note at zmiller@sympatico.ca

I don't know your name and it is possible that I have

by sandy craine (Apr 21)

Having all those zero's is very well deserved. 2 TKI's and a mini sct... you join the list of CML pioneers! Well done and enjoy the easter break.

Sandy

by RachaelB (Apr 18)

That's brilliant news!! Well done you x
Category: Uncategorised

Replies: 6

Last updated: 25 April 2011
Jojo on 14 April 2011

Category: Uncategorised

Replies: 5

Last updated: 20 April 2011

results and going from Dasatinib to Nilotinib
by Jojo (Apr 20)

Thank you Janet & Sarah01 for your helpful and informed replies. It is good to know about other peoples experiences, treatment expectations etc. Thanks Sarah for your comments too - I hope all

by Sarah R (Apr 17)

Dear Sarah

I also have a teenager with CML diagmosed at 15. He's now just turned 19 and and changed from Imatinib to Dasatinb nearly a year ago due to side effects. He's managed to

by Sarah01 (Apr 17)

Hi, I do not have CML but my daughter was diagnosed with it 20 months ago, she is now 17. She was put on Nilotinib at the end of November because she had become intolerant to both imatinib

by Janet (Apr 15)

Hello!

I'm sure you will get some answers about swapping drugs soon, but I just wanted to wish you good luck on the change.

From my reading of your comments, your consultant seems to be
Category: Uncategorised

Replies: 5

Last updated: 20 April 2011
liz on 14 April 2011

Category: Uncategorised

Replies: 1

Last updated: 15 April 2011

Glivec and abdominal pain
by sandy craine (Apr 15)

Hi Liz,

I would strongly recommend you not to put up with this kind of side effect and ask your consultant to consider changing your therapy to either nilotinib or dasatinib.

Best wishes

by liz (Apr 14)

Just wondering if anybody else suffers from really bad stomach pain and is taking Glivec. I have been on Glivec now for four years, I have always tolerated it well, with the odd symptoms but
Category: Uncategorised

Replies: 1

Last updated: 15 April 2011
loadmastersrock on 8 April 2011

Category: Uncategorised

Replies: 5

Last updated: 30 October 2011

White cell count spike and flying things
by cdw5000 (Oct 30)

James,

i would very much like to contact you. I'm serving and have CML - i'd love to know how many of us are in. Not sure if you can contact me via username, if not please re-post and

by Alastair C (Apr 11)

I've had another look at this in the light of who your employer is. It seems that the requirements of the DDA are now included in the Equality Act of Oct 2010. This carries on most of the

by vickiep (Apr 10)

I'm no legal buff, but my own experience is that I wok for County Council, work in a Primary School. If ever I have a "blip" resulting in any time off, I'm sent to see the

by loadmastersrock (Apr 9)

well i sort of left out my employer lol as its the Royal Air Force and im a loadmaster and fly. however my current role is non critical in flight and to be honest im little more than a chief
Category: Uncategorised

Replies: 5

Last updated: 30 October 2011
Smahmood on 3 April 2011

Category: Uncategorised

Replies: 2

Last updated: 3 April 2011

fluid intake whilst on Glivec?
by lynnsch (Apr 3)

Hi,

Pre CML I used to drink around 2.5 litres but now I'm on about 3.5 - 5 litres depending on my daily activities and coffee drunk (an extra glass for every coffee). Although I have moved

by johnh (Apr 3)

I'm no expert but I believe that 2 litres a day is the usual recommendation. I find that hard enough, 4 litres would be very difficult. You would spend half your day drinking and the

by Smahmood (Apr 3)

Hello

I was just wondering what is the recommended fluid intake whilst on glivec? Is four litres a day too much?

Regards
Category: Uncategorised

Replies: 2

Last updated: 3 April 2011
Anna on 1 April 2011

Category: Uncategorised

Replies: 8

Last updated: 13 May 2011

Another new arrival
by vickiep (May 13)

VERY well done you!!! That can't have been an easy ride, but what a result!

I applaud you and wish you lots of love and happiness for sharing a long future with your family.

xx

Vickie

by Peter Miles (May 12)

Dear Anna - My congratulations to you and your partner on the birth of Ava. God bless you all!

by CS (May 12)

Your welcome I really am so pleased for you, its so good to hear about a succesful birth! Thank you so much for answering my questions it was really helpful to hear how you got on! Im currently

by Anna (May 12)

Hi

thanks for the congratulations! The return to Glivec is going well, just getting through the cramp/bone aches and sickness and starting to get used to it again.

Re: the interferon - to
Category: Uncategorised

Replies: 8

Last updated: 13 May 2011
Cynthia P on 1 April 2011

Category: Uncategorised

Replies: 5

Last updated: 14 April 2011

Stopping Glivec
by fehr (Apr 14)

I developed lower back pain about four years ago, about the same time as I started on Gleevec, although it might have been there earlier - can't really remember I am now

by Cynthia P (Apr 4)

Thank you Sandy,

As always you come up with helpful comments,I have had a blood test from the Dr, which shows normal readings, although he may not have been testing for low magnesium levels, I

by Cynthia P (Apr 4)

Thank you Basil, helpful to know somebody else is successfully weened from Glivec, though I am not knocking it as I know it has been a life saver for me, though the fact that bone pain

by sandy craine (Apr 1)

Try asking your doctor to check your levels of magnesium. if this mineral is low it can cause joint pain and muscle cramps.

You can supplement with magnesium oil by rubbing it on the skin-
Category: Uncategorised

Replies: 5

Last updated: 14 April 2011
Basil from RSA on 31 March 2011

Category: Uncategorised

Replies: 4

Last updated: 7 April 2011

Update from Basil in South Africa
by Basil from RSA (Apr 7)

The figures I gave were not expressed as a BCR/ABL:ABL ratio, but expressed as a percentage of BCR/ABL.

The actual BCR/ABL ratio on undetected results were 0.0000

The RTQ-PCR tests are very

by Andy Parkin (Apr 5)

Basil, Very many congratulations on the 23 month report. I am sure a position that all CML patients on drug therapy aspire to.

Very best wishes for the next 4 month test.

One query? When your

by sandy craine (Apr 1)

Dear Basil.... great news and thanks for the update. I was wondering how you were getting on. Hope this continues- it is such good news.

Best wishes,

Sandy

by karen (Apr 1)

Basil they are truly brilliant results - long may they continue!

K
Category: Uncategorised

Replies: 4

Last updated: 7 April 2011