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sandy craine on 28 November 2007

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Replies: 1

Last updated: 28 November 2007

letter to MP-regarding Dasatinib/Nilotinib NICE appraisal
by russ whales (Nov 28)

Sandy - I have already emailed my MP (Nicholas Soames) and he has written to Alan Johnson raising these points and has promised a written response to me. Needless to say he is very supportive.
Russ

by sandy craine (Nov 28)

I have just received a reply from my MP in which she states she is very supportive of the initiative to overcome the post-code lottery by cml patients. she says she is going to write to the DH
Category: Uncategorised

Replies: 1

Last updated: 28 November 2007
sandy craine on 28 November 2007

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Replies: 5

Last updated: 5 December 2007

Drug adherance
by sandy craine (Dec 5)

thank you all for your ideas and thoughts about this subject. even the words used to describe an individuals willingness to embrace their therapy and be 'good' are rather proscriptive.

by Paul Cooke (Dec 5)

Hi,

As a Pharmacist, I am very much aware of the problems with non-compliance to medication regimes. I see patients who are not uncommonly on upwards of 12 or more medicines!!I would defy

by kestrel (Dec 4)

Hi Sandy,
A reply from the perspective of a carer for a young CML patient.
The psychological impact on a teenager of being told that he could have to take a drug FOR LIFE to maintain his health is

by sandy craine (Nov 29)

hi David, thanks for your feedback and thoughts on this issue. i thought that you would be interested in an excellent new report from the United States on the scope of the treatment non-adherence
Category: Uncategorised

Replies: 5

Last updated: 5 December 2007
Andytyneside on 27 November 2007

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Replies: 5

Last updated: 19 December 2007

Having to have a BMT. I'm a bit frightened/worried by it all
by PAUL (Dec 19)

Andy drop me a line on your progress. My wife is now at day 100 and doing fine at Newcastle cheers Paul.paul724@msn.com

by Andytyneside (Nov 28)

Thanks for the reply guys
It's put my mind at rest knowing that it's worth doing. It's just like a big scary rollercoaster at the moment. I'm sure it will be good for me in the long run.
Anyway, I'

by sandy craine (Nov 27)

hi andy,

please read my diary.... i had a mini in october 2003... due to a glivec mutation.
this form of transplant is very safe and much easier to 'do' than the traditional one. there are 4

by russ whales (Nov 27)

Andy
Had a mini SCT (BMT) 3 years ago at age 52 - now well and free from cml. I was resistant to glivec and no other drugs were readily available. Happy to share my full story with you - there were
Category: Uncategorised

Replies: 5

Last updated: 19 December 2007
Steven D on 23 November 2007

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Replies: 4

Last updated: 29 November 2007

Your feedback please.- Houston House Seminar, Edinburgh -
by Annie Kennedy (Nov 29)

Just wanted to add my thanks too - thoroughly enjoyed the CML support evening - what a great bunch we all are...! The evening was great and it was lovely to chat to so many people - made the

by angela (Nov 28)

I would just like to say thank you to Elizabeth, Steven & Carol for all the work that went in to making Friday and Saturday a enjoyable, informative weekend.
It was lovely meeting up with old

by kestrel (Nov 28)

I'd like to echo what has been said above - thank you so much - the whole weekend was an immensely informative and uplifting experience for us. What a wonderful bunch of people we met!!

by CHRISTINE MURPHY (Nov 25)

Would just like to say that we really enjoyed Friday and Saturday, it was so good to speak to others coping with cml. Friday night was so friendly and for first timers not too daunting. Saturday
Category: Uncategorised

Replies: 4

Last updated: 29 November 2007
keith Pratt on 23 November 2007

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Replies: 4

Last updated: 28 November 2007

PCR Results
by sandy craine (Nov 28)

hi Keith, great news- after so many years i am not surprised that HH are interested in what is going on ;o)

best to you and Carol.

love,sandy ;o)

by keith Pratt (Nov 26)

Hi

Thank you very much, will be more than extatic when I go to HH again on 9th January 2008 and the trend is confirmed, maybe even lower ?? Will keep you advised

Hope you enjoyed

by jaynelister (Nov 26)

Hi Keith,
Im really pleased for you that your levels are coming down. Wonderful news!
Jayne

by Elizabeth Rees (Nov 25)

Keith, words fail me to tell you how happy I am for you after all this time. Enjoy and much love to you and Carole.

Elizabeth xx
Category: Uncategorised

Replies: 4

Last updated: 28 November 2007
Elizabeth Rees on 22 November 2007

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Replies: 1

Last updated: 22 November 2007

CML Support Social Evening - Friday 23rd Nov - Edinburgh
by Barbs (Nov 22)

Dear Elizabeth,

glad to hear that you had a good holiday.

Just to say that I hope that all goes well this weekend, I got a mail from Dr N yesterday, he's got everything ready &

by Elizabeth Rees (Nov 22)

Hi everyone

Looking forward to meeting all of you attending the CML Support Social Evening in Edinburgh. Would be lovely if we could all aim to meet at around 7pm in the Strathbrock Suite - I
Category: Uncategorised

Replies: 1

Last updated: 22 November 2007
zaviemiller on 21 November 2007

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Replies: 1

Last updated: 22 November 2007

CML Seminar - Edinburgh - Taxi Sharing.
by angela (Nov 22)

Hi Zavie
My flight doesn't arrive till 12.45 so please don't hang around for me. I found out that's the taxi fare is around about £20 and takes 15-20 minutes. Looking on the map Uphall Broxhburn

by zaviemiller (Nov 21)

Hi Angela et al,
I will be arriving at 10:00 AM Friday. It would be fun to share a taxi ride to the conference. A city tour would also work for me.
Zavie
Contact me at
e-mail: zmiller@sympatico.ca
Category: Uncategorised

Replies: 1

Last updated: 22 November 2007
angela on 17 November 2007

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Replies: 4

Last updated: 20 November 2007

CML Seminar - Edinburgh - Taxi Sharing.
by angela (Nov 20)

Hi Barbara
Yes you did tell me a while back that won't be able to make it this year. Have a lovely time Saturday evening. I'll email you soon.
Take care
Angela

by angela (Nov 20)

Hi Bee & Ted
Sorry you not going to be there this year. Glad to hear that Ted's doing well. I'm not doing too bad either my last pcr was 0.014 which I'm very pleased with.
Hopefully see you

by Bee (Nov 19)

Hi everyone
Sorry but we won't be able to attend the Seminar this year, but would probably have been on the same flight, Angela! To those that do make it - have an great time and we'll see you all

by Barbs (Nov 18)

Hi Angela,

I'm so sorry that I won't be able to come next weekend - it would've been lovely to see you all again, but it's my husband's 40th birthday on the Sunday & we're having a do on
Category: Uncategorised

Replies: 4

Last updated: 20 November 2007
Bram on 16 November 2007

Category: Uncategorised

Replies: 2

Last updated: 17 November 2007

Got blood test results, Can anyone tell me if they are good enough
by zaviemiller (Nov 17)

Y A H O O O !!! Y I P P E E E !!!
Number 1130 in the Zero Club
Zavie
Well done Bram. You have achieved CCR (Complete Cytogenic Response) and that is good enough to get you into the Zero Club. From

by cmlblogger (Nov 16)

however i am not a doctor or specialist!
down to 0.28% in 7-8 months does sound good
I think that is a "Complete cytogenetic response" "occurs when out of 20-50 marrow cells, no cell with a Ph

by Bram (Nov 16)

Hi to you all,

I have been on Glivec for 7-8 months since diagnosis and recently had blood sent off to be tested. (This was following a marrow sample which didnt show any positive cells/ 100
Category: Uncategorised

Replies: 2

Last updated: 17 November 2007
Don Adkins on 15 November 2007

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Replies: 5

Last updated: 21 December 2007

Three year post-transplant visit update
by jaynelister (Dec 21)

Hi Don,
I just wanted to let you know that I havent forgotten about you and I have e mailed Aaron's Consultant, who has been away on leave.
How are things now?
Regards
Jayne

by Don Adkins (Nov 22)

Thanks Jayne....

by jaynelister (Nov 22)

Hi Don,
Sorry to hear about your GVHD.
My Son, Aaron underwent BMT approx 4 years ago and also had severe GVHD of the mouth, and also the gut.
He suffered very badly with no saliva and this caused

by Don Adkins (Nov 15)

Thanks Russ, sounds like the exact plan my doc has for me.
Have a great Holiday season!
Don
Category: Uncategorised

Replies: 5

Last updated: 21 December 2007
David on 14 November 2007

Category: Uncategorised

Replies: 2

Last updated: 15 November 2007

Sprycel in England and Wales/Scotland
by David (Nov 15)

Western Provident Association have now put more information about the QC's Opinion on their web site. The link is:
WPA Press Link
David

by sandy craine (Nov 14)

Hi David,

thanks for posting this article.... it is extremely interesting and points to the difficult situation that the government would find itself in if cancer patients took this legal

by David (Nov 14)

The very unfortunate situation at present that some PCTs in England and Wales will not fund Srycel (Dasatinib) is highlighted again today in an article in The Times. The Scottish Medicines
Category: Uncategorised

Replies: 2

Last updated: 15 November 2007
tkrober on 13 November 2007

Category: Uncategorised

Replies: 3

Last updated: 26 November 2007

New to Forum
by tkrober (Nov 26)

Ken Roberson

Thanks for your response, and appreciated Sandy's response also. Since I have the "new" site, I will be checking it often.

by sandy craine (Nov 15)

Hello Ken,

good to hear from you and good to hear that you continue to do well on Glivec. having two cancers to deal with seems a little unfair to say the least! but the news that your PSA

by zaviemiller (Nov 13)

Hi Ken,
A voice from the past. It's so nice to hear from you. Number 330 in the Zero Club.
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec

by tkrober (Nov 13)

Hi,

I am new to this forum, but I did have an old site where I enjoyed reading Sandy's journey for many years and the various other posts.

I reside in North Carolina in the USA , and I
Category: Uncategorised

Replies: 3

Last updated: 26 November 2007
Mistymoo on 9 November 2007

Category: Uncategorised

Replies: 2

Last updated: 12 November 2007

Complimentary medicine
by sandy craine (Nov 12)

Hi,

there are therapies that can help and that do not require taking herbs at all....although Nancy is right when she says that these can be very helpful as long as you are aware of the

by Nancy C. (Nov 10)

Hi,

Complimentary medicine can be very good to help offset any side effects that you have with the drug. There are just a few herbs that you are advised to not take....St. John's Wort,

by Mistymoo (Nov 9)

Hi
My dad has just asked me to find out if anyone has tried any complimentary therapy in conjunction with Glivec. If you have have do you feel this has benefitted you in anyway?
Thanks
Category: Uncategorised

Replies: 2

Last updated: 12 November 2007
Mistymoo on 8 November 2007

Category: Uncategorised

Replies: 5

Last updated: 17 November 2007

Pain in dad's hip
by technician69 (Nov 17)

Hi Sharon, my daughter (15) was diagnosed with CML in May. Just lately she has been having horrendous pain in her hips too. I think it may be a side effect of Glivec. She is taking codeine at the

by Mistymoo (Nov 17)

Hi
Dad went to his appt on Tuesday and apparently the Dr didn't really say anything about the pain, in fact was quite disinterested by all accounts. The pain had gone within a day so I'm sure it

by Mistymoo (Nov 9)

Hi
Thanks for taking the time to respond. I will pass the information on. My dad is 60. He had hip pain before his dx I think so possibly not the Glivec and as we don't know how long he has had

by Paul Cooke (Nov 9)

Hi Sharon,

Sorry to hear your father's had this problem.

He should let the doctors at the hospital know about this problem I think.

Bone pain can be related to cml, and also is a
Category: Uncategorised

Replies: 5

Last updated: 17 November 2007
sandy craine on 8 November 2007

Category: Uncategorised

Replies: 12

Last updated: 28 November 2007

NICE appraisal of Dasatinib/Nilotinib-please write to your MP
by sandy craine (Nov 28)

hi Lorraine, thanks for joining us and making the effort to write to your MP. i think we will not have to go as far as a petition as the letters i have received from NICE indicate that our campaign

by Andytyneside (Nov 27)

Many thanks Susan
I'll have a look at your blog later. I'm at work at the moment so it will be after teatime.
I'm not sure what type of BMT I'm having, it's one of the things I need to ask on

by skiinglaketahoe (Nov 27)

Andy, I am 32 days into a 'mini' SCT............so far it has been without difficulty......read my blog

www.caringbridge.org/visit/susanleigh

it may help to allieviate some of your

by Andytyneside (Nov 27)

Unfortunately Paul, things have moved on since my last post. It would appear that I'm going to have to go for the BMT option. Reason being that I've ran out of other choices.
Dastinib (have I spelt
Category: Uncategorised

Replies: 12

Last updated: 28 November 2007
sal on 5 November 2007

Category: Uncategorised

Replies: 2

Last updated: 8 November 2007

good news
by zaviemiller (Nov 8)

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

Number 1126 in the Zero Club

Zavie
Sal, please send me your email address.

Thanks
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

by sandy craine (Nov 7)

hi Sal,

this is very good news.... Rob has had a major molecular response (MMR) and hopefully will go on to see more zero's in the futre.

congratulations.

best wishes,

Sandy

by sal (Nov 5)

Hi Everyone, Rob's PCR after 6 months on Dasatinib (2 1/2 years since diagnosis) has come back at 0.2, it was 1.5 last time. I think technically we're aiming for 0.1 for MMR but we're going to
Category: Uncategorised

Replies: 2

Last updated: 8 November 2007
Colin Woodall on 2 November 2007

Category: Uncategorised

Replies: 7

Last updated: 4 November 2007

PCR results
by Colin Woodall (Nov 4)

Hi Bill,
Thanks for the advice. Here's hoping the downward trend continues.
Regards,
Colin

by Colin Woodall (Nov 4)

Hi Zavie,
Thanks for all the info. All I know for sure at the moment is that I reached CHR after 1 month.

Hope you continue to keep well.
Regards,
Colin

by Colin Woodall (Nov 4)

Hi Rob,
Unfortunately I don't know the count was to start with. I will ask next time I see the consultant. Stupid really but I always seem to forget to ask something each time. Thanks very much for

by wkeeping (Nov 3)

Colin,
5% sounds good at 3 months, but as Rob and Zavie say, it depends on the initial value. However, the important word is down. "Good but not good enough" at 3 months probably equates to what
Category: Uncategorised

Replies: 7

Last updated: 4 November 2007
donnaberry on 1 November 2007

Category: Uncategorised

Replies: 2

Last updated: 5 November 2007

Spleen Discomfort
by donnaberry (Nov 5)

Hey Russ,

That all makes sense as I had 6 days of chemo soon after dx. Now I have my first cold so my atention has switched to that!!!

Regards,
Donna

by russ whales (Nov 5)

Donna
I can only offer the following which I was told at Kings College Hospital in London.
When the spleen gets very enlarged small parts of it can die and where these are at the surface they can

by donnaberry (Nov 1)

Hi,

I started this whole CML journey back in May when I was admitted to ER in a bit of a state. My WBC was 539,000 they thot I had AML I guess so gave me 6 days of chemo and a couple of
Category: Uncategorised

Replies: 2

Last updated: 5 November 2007
David on 31 October 2007

Category: Uncategorised

Replies: 5

Last updated: 6 November 2007

Good news from NICE
by kestrel (Nov 6)

A draft letter would be fantastic please! Our MP sent me two letters in response to the last one and some help in asking him to keep up the pressure would be great. Thanks,

kestrel

by sandy craine (Nov 2)

hi David and Phil,

this is the best strategy i think. we may be a small patient population but we have a loud voice and we should build on this.

the more of us that write letters to ur

by David (Nov 1)

I very much agree with Sandy as to what should be done now and I will add my bit by writing to my MP, who has been very supportive so far, asking him to take this up with Alan Johnston, the Minister

by valandi (Nov 1)

Val and I also had the same response from NICE. We have already penned a letter to both our MP and the health minister about the current situation and will post the response when, and if, we
Category: Uncategorised

Replies: 5

Last updated: 6 November 2007
donnaberry on 31 October 2007

Category: Uncategorised

Replies: 4

Last updated: 1 November 2007

New to CML
by donnaberry (Nov 1)

Sandy,

Thanks alot for your helpful response

Donna

by donnaberry (Nov 1)

Russ

Thanks for the good info :)

Donna

by sandy craine (Oct 31)

hi Donna,

glad you have found us and welcome to our forum.
the NHS fully funds Glivec as first line therapy for ph+ CML so if you decide to come back to the UK then you should have no problem

by russ whales (Oct 31)

Hello Donna
I can only speak for my local heamatologist (Haywards Heath) and Kings College Hospital in London where I have been cared for. They are both first class - I was given Glivec as soon as
Category: Uncategorised

Replies: 4

Last updated: 1 November 2007