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ni2i on 18 May 2011

Category: Uncategorised

Replies: 5

Last updated: 19 May 2011

Glivec and sickness
by Richard42 (May 19)

I endorse what others say about the sickness easing over time. And also about finding a routine that works for you. I sympathise because the sickness is horrible and I wondered at first how

by Alastair C (May 19)

I have found that it really helps if my Glivec lands on some carbohydrate when taken. My routine is to take it after breakfast, which is usually either wholemeal toast or bran flakes. If I'm a

by Steven Davies (May 19)

You might like to change the time you take the medication.. I took it at night for nearly 5 years which seemed to help. Good luck

by hcy0da (May 19)

It might also be wise to look at what you are eating on the days you are sick. I find I need some form or carbs or I'm sick.
Category: Uncategorised

Replies: 5

Last updated: 19 May 2011
alison28 on 17 May 2011

Category: Uncategorised

Replies: 5

Last updated: 18 May 2011

BMB results
by liz (May 18)

Yes Alison, I am sure it will and you can carry on with your life and your plans ;-)

by EmChops (May 18)

congratulations!

Em x

by sandy craine (May 18)

Many congratulations on your response to dasatinib.

Sandy

by alison28 (May 17)

Thank you Liz! Long may it continue eh?!x
Category: Uncategorised

Replies: 5

Last updated: 18 May 2011
chrissie on 17 May 2011

Category: Uncategorised

Replies: 2

Last updated: 20 May 2011

Petition - NICE
by Barbs (May 20)

Is mine one of the european doctors? if not will pass on the link.

by sandy craine (May 18)

Hi Chrissie.. thanks for posting this. It is very heartening that your GP is willing to support the petition too. We have signatures from 2 of the UK CML clinicians (both Professors- one of who

by chrissie (May 17)

I have found great support for the petition from my local GP practice. My own GP has signed and is forwarding the link to the others in the practice. Also I phoned the hospital to tell them about
Category: Uncategorised

Replies: 2

Last updated: 20 May 2011
EmChops on 17 May 2011

Category: Uncategorised

Replies: 4

Last updated: 18 May 2011

my local paper going to print a story about NICE - help with info please!!
by EmChops (May 18)

Thanks Sandy that is very nice of you to reply considering how busy you are.

I know I am in a more fortunate place than others, I have to remain positive!

Thanks again

em x

by sandy craine (May 18)

Dear Em,

do not worry unduly for the future.. if you are doing well on nilotinib then it is very likely that you will continue to do well. nilotinib is a very good drug and an improvement on

by EmChops (May 17)

Thank you sandy that is helpful. I am in a slightly better situation as I am already on Nilotinib as part of a clinical trial and so far, 5 weeks in, doing ok. However i know that i will more than

by sandy craine (May 17)

Hi Em,

just be yourself tell your own story. It might be good to mention this website as good for information - but also mention the current 2 petitions and if you give this website address say
Category: Uncategorised

Replies: 4

Last updated: 18 May 2011
David on 15 May 2011

Category: Uncategorised

Replies: 1

Last updated: 16 May 2011

NICE again - letter to MP
by sandy craine (May 16)

Dear David.. thanks for copying your letter here- I am sure it will help a lot of people with compiling their own letters.

As you say, the more people that do this the better.

For those of you

by David (May 15)

I wrote to my MP last week. I do hope as many of us as possible can write to MPs. It will have an effect if Andrew Lansley is inundated with MPs correspondence about it. Here is what I said (with
Category: Uncategorised

Replies: 1

Last updated: 16 May 2011
EmChops on 15 May 2011

Category: Uncategorised

Replies: 7

Last updated: 28 November 2011

blue badge
by keith Pratt (Nov 28)

It is not uncommon for the DLA people to kick you back on the first attempt. You have to apply, apply and apply again. Never give up it is designed for people such as yourselves. Took me 1 year and

by Gareth84 (Nov 28)

Hello everybody. I've just been reading thru these posts and thought I would tell my story and see if anybody has any advice for me. In April this year I was diagnosed with CML. I was sent home from

by EmChops (May 15)

Thank you so much for the advice.

I think I will wait at the mo and see how things go, if I get worse I will certainly give it try getting a badge.

Good luck to everyone else trying.

Em x

by michael (May 15)

Once again talk to your specialist cancer nurse at you hospital they can help with forms,They also contact your GP or hospital consultant for a report(which in my case the specialist cancer nurse
Category: Uncategorised

Replies: 7

Last updated: 28 November 2011
EmChops on 14 May 2011

Category: Uncategorised

Replies: 2

Last updated: 14 May 2011

you have been a lifeline for me, thanks
by ni2i (May 14)

Hi Emma

I was only diagnosed in February 21st 2011 myself and i'm on glivec at the moment. It is very hard to accept at the beginning and i'm still in shock sometimes myself. I have a

by vickiep (May 14)

Hi Em...er, having young children AND working in primary school is enough to make anyone dizzy, let alone a CML-er, so WELL DONE you!!! I work part-time in primary, but only as a teaching

by EmChops (May 14)

I thought I ought to say hello as I have been reading the forum avidly since being diagnosed but not really joined in as I was only diagnosed on the 10th march 2011 and to be honest i just didn
Category: Uncategorised

Replies: 2

Last updated: 14 May 2011
sandy craine on 14 May 2011

Category: Uncategorised

Replies: 4

Last updated: 19 May 2011

Petition-NICE I don't think so! and NICE be Nice to Cancer Patients - confusion over two petitions
by sandy craine (May 19)

Petition still going strong with 3860 signatures a sof this evening.

Well done everyone who has worked to keep it going.... the target of 5000 might be achievable.

Sandy

by sandy craine (May 17)

Both petitions are doing well and attracting more signatures by the hour. This is very heartening. I wonder if over the next week we can get them up to 5000! maybe not but we can try.

I have

by Alastair C (May 16)

NICE? I don't think so petition now 2519 signatures

by vickiep (May 14)

Sandy, just wanted to say a big "thank you" for all that you're doing and encouraging others to do...

Good to luck to each and every one of us!!

xx
Category: Uncategorised

Replies: 4

Last updated: 19 May 2011
chrissie on 14 May 2011

Category: Uncategorised

Replies: 2

Last updated: 14 May 2011

Heartfelt thanks to Sandy and team
by EmChops (May 14)

I agree. Being a newbie i really don't have the medical knowledge or understanding but having someone who does fighting our corner is such a relief. As I am sure you all have been doing I have

by Jojo (May 14)

Yes hear hear! to everyone who is working to get this guidance overturned - let's not give up. I know I've posted the link and an explanation on facebook and several of my friends

by chrissie (May 14)

Not just for this wonderful website, but for this current massive effort by Sandy, the website team and all those fellow CML patients who have the scientific knowledge and knowhow when dealing
Category: Uncategorised

Replies: 2

Last updated: 14 May 2011
Pennie on 14 May 2011

Category: Uncategorised

Replies: 3

Last updated: 14 May 2011

Started Dasatinib yesterday
by jackieb38 (May 14)

Hi Pennie,

I started Dasatinib on thursday, i was sick last night and have woken up with a headache both mornings but the joint pain I had on Glivec has almost gone.

I'm just hoping it

by Jojo (May 14)

Hi Pennie, hope dasatinib helps you and you settle on it ok. I started on Dasatinib Sept 2010, and yes I did notice intially my headaches, or vague ones, increased a bit. I just made sure I drunk

by vickiep (May 14)

Wishing you all the best of luck and love with Dasatinib Pennie. For ME it's certainly much gentler than Glivec, less water retention, slightly less bone pain, NO cramps (yay!) but lack of

by Pennie (May 14)

Hi Started Dasatinib yesterday, 100mg once a day. Almost no sleep last night - insommnia is it a side effect? or was it nerves? Also horrid headache. Plus I am
Category: Uncategorised

Replies: 3

Last updated: 14 May 2011
arrowsc on 14 May 2011

Category: Uncategorised

Replies: 1

Last updated: 14 May 2011

Re - NICE desision
by sandy craine (May 14)

Hi Craig... yes I understand your point and thanks for raising it. We have to first go through the 'process' as outlined by NICE and jump through their hoops-

hopefully it will work (we

by arrowsc (May 14)

I am sure this will have been raised previously, but surely as a group of patients, this can be raised in law under Human Rights legislation. After all the first statement under this legislation is
Category: Uncategorised

Replies: 1

Last updated: 14 May 2011
jacqui from Col... on 13 May 2011

Category: Uncategorised

Replies: 2

Last updated: 14 May 2011

FOR the Girls
by jacqui from Colchester (May 14)

HI Alison My platelets are 182 on my last blood and my last BCR 0.012, although my previous results were better as my BCR was 0.006 and platelets 120 Its quite frightenoing that this is a

by alison28 (May 14)

Hi jacqui. I have been taking dasatinib for just over a year now and although I haven't missed any periods as of yet I have noticed they have become a few days late each month and a lot

by jacqui from Colchester (May 13)

Hi I have been taking dasatinib now for 18 months and although things seem fine I have not had a period for 4 months - which is baffling my doctor as she has ruled out all the normal possibilities
Category: Uncategorised

Replies: 2

Last updated: 14 May 2011
Steven Davies on 13 May 2011

Category: Uncategorised

Replies: 2

Last updated: 14 May 2011

Borehamwood Times article about NICE
by ni2i (May 14)

Just wanted to say well done Steven you came across really well and i'm impressed. So big well done from me x

Naomii

by vickiep (May 13)

I thought you got this over rather well Steven..

Thank you!

Vickie

by Steven Davies (May 13)

Hi

This is the link to the Borehamwood Times. Once there I'm on page 3. Im not a pin up though.

They got it slightly wrong in the fact that if your already on a drug it cannot be taken
Category: Uncategorised

Replies: 2

Last updated: 14 May 2011
sandy craine on 12 May 2011

Category: Uncategorised

Replies: 1

Last updated: 12 May 2011

1238 signatures on Petition so far- not bad but let's all push for more
by sandy craine (May 12)

I am away in Amsterdam from tomorrow until Sunday and I hope to set up a link to the petition at the CML conference I am attending. There will be CML advocates there from all over the world and

by sandy craine (May 12)

1238 in 4 days. we are doing very well.

I am away this weekend (from tomorrow) in Amsterdam at the CML and GIST patient advocate conference. I have asked to have a permanent link to the
Category: Uncategorised

Replies: 1

Last updated: 12 May 2011
Jojo on 12 May 2011

Category: Uncategorised

Replies: 10

Last updated: 19 May 2011

possible BMT looming - somewhat scared
by Ali Loram (May 19)

Hi Jo, here is my e mail address if you would prefer to contact me this way; ali@loram.eclipse.co.uk

by michael (May 14)

I am the lower case michael,Sorry no blog,My problems are increasing I was at deaths door a few weeks back and I found it amazing how quickly the body can recover with the right treatment.

I am

by Jojo (May 14)

Hi Susan

thank you for getting in touch. I had looked at your blog in the past, was impressed with how you were dealing with everything - thank you for sharing your story. I don't know your

by Jojo (May 14)

Hi Michael

Thank you for the encouragement about the staff and that people can have sucessful transplants, but thank you too for the note of caution re %match. Something else to bear in mind.
Category: Uncategorised

Replies: 10

Last updated: 19 May 2011
cmlblogger on 12 May 2011

Category: Uncategorised

Replies: 1

Last updated: 12 May 2011

FAO Sandy - beatbloodcancers.org
by sandy craine (May 12)

Hi Rob...yes saw your email. thanks for including me. I am surprised because LLRf and Leukaemia Care have been at various meetings and we included their logo's as they endorsed our written

by cmlblogger (May 12)

Hi Sandy - hopefully you got my email about http://beatbloodcancers.org/ (Luekaemia and Lypmphona Research) with regard the recent NICE decision.

THey are hopefully going to do a piece
Category: Uncategorised

Replies: 1

Last updated: 12 May 2011
sandy craine on 11 May 2011

Category: Uncategorised

Replies: 4

Last updated: 18 May 2011

Steven on LBC radio- well done ;o)
by sandy craine (May 18)

Thanks for sharing the contents of your MP's letter.....

as to his point about value based pricing- this will not be available as a mechanism to assess any new 'innovative'

by Steven Davies (May 17)

Thank you for contacting me regarding the National Institute of Clinical Excellence (NICE) and the approval of drugs for the use on the NHS. I fully understand the concerns you have raised.

The

by sandy craine (May 16)

thanks Steven.. for your committment

Sandy

by Steven Davies (May 15)

Yes I was on again this morning talking about our cause.

Will keep going on this
Category: Uncategorised

Replies: 4

Last updated: 18 May 2011
sandy craine on 11 May 2011

Category: Uncategorised

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