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michael on 21 May 2011

Category: Uncategorised

Replies: 1

Last updated: 23 May 2011

Early day motion 1832
by sandy craine (May 23)

Dear Michael,

you're absolutely right... it is very worrying.

PROPOSALS FOR THE FUTURE OF NHS BLOOD AND TRANSPLANT SERVICE

That this House is opposed to the Government's proposals

by michael (May 21)

Early day motion 1832 is just as scary as the cml related Early day motion 1831 as reported on the forum.prehaps we should promote both, your view please.

michael
Category: Uncategorised

Replies: 1

Last updated: 23 May 2011
sandy craine on 21 May 2011

Category: Uncategorised

Replies: 9

Last updated: 26 May 2011

update
by ian hinley (May 26)

.

by Dennis (May 25)

5132 now.

by Steven Davies (May 24)

What a fantastic response. Well dnoe everyone and a very special thank you to Sandy. Hopefully will get a few more before tomorrow.

Steven

by Dennis (May 24)

and to everyone who has contributed to this cause. I'm so angry about NICE's stance on this matter. NICE needs to be disbanded and quickly, because quite simply they are out of touch.
Category: Uncategorised

Replies: 9

Last updated: 26 May 2011
chrissie on 20 May 2011

Category: Uncategorised

Replies: 2

Last updated: 24 May 2011

MPs' Parliamentary questions
by chrissie (May 24)

Thanks, Sandy. That is what I did + what about patient choice?. I also emailed my MP yesterday pointing him to Pages 10 and 19 of yesterday's Telegraph and had a reply that his office is

by sandy craine (May 23)

Hi Chrissie,

sorry I missed your post. I would suggest you just re-email you MP with the actual question as suggested in the letter. - that way it is very clear and he will not have

by chrissie (May 20)

Just had a meeting with my MP (Mel Stride, Central Devon) and he was very supportive and has agreed to raise a written PQ on our behalf. He now wants me to email him with what I want him to say (
Category: Uncategorised

Replies: 2

Last updated: 24 May 2011
sandy craine on 20 May 2011

Category: Uncategorised

Replies: 1

Last updated: 20 May 2011

Petition
by chrissie (May 20)

On your test result and so many thanks for all you are doing for us,

Best wishes

Chrissie

by sandy craine (May 20)

I have just come back from my clinic appointment -still pcr negative- phew! in the battle with NICE I sometimes forget I have CML! but then remember that even transplant patients can relapse
Category: Uncategorised

Replies: 1

Last updated: 20 May 2011
hcy0da on 20 May 2011

Category: Uncategorised

Replies: 1

Last updated: 20 May 2011

Response from Dept of Health
by Steven Davies (May 20)

I have just received an email on behalf of Lord Howe which is identical to the letter above. Shame the DoE cant be a little bit more helpful

by hcy0da (May 20)

I’ve had a response from the dept of health, in it they say …

I would firstly like to stress that NICE has not yet issued its final guidance on the use of these drugs to the
Category: Uncategorised

Replies: 1

Last updated: 20 May 2011
sandy craine on 19 May 2011

Category: Uncategorised

Replies: 9

Last updated: 25 May 2011

Early Day Motion- Alan Meale MP
by sandy craine (May 25)

There are 30 MP's signed up now... 2 conservatives, 4 LibDems, 2 Paid Cymru, 1 Dem.Unionist Party, 1 Alliance Party (Belfast), 1 Social democrats/labour Party.

http://www.parliament.uk/edm/

by ian hinley (May 25)

.

by Steven Davies (May 20)

Strange that there all Labour signatories. I wonder if Labour where in power whether it would be all Conservatives who would have signed it.

by Dennis (May 20)

Good stuff. The word needs spreading further.
Category: Uncategorised

Replies: 9

Last updated: 25 May 2011
clair merritt on 27 July 2011

Category: Uncategorised

Replies: 4

Last updated: 29 July 2011

newly diagnosed child
by clair merritt (Jul 29)

Hi everyone thanks for replying to me, Jess my daughter got out of hospital this morning! Jess turned 14 last week and attends the oncology department at Birmingham Childrens Hospital UK. At the

by Richard42 (Jul 28)

Alastair is absolutely right that CML usually leads to high or very high white blood cell counts. Occasionally though it can present with high platelets. Mine were raised to nearly 1500 but my white

by Alastair C (Jul 28)

Clair, my heart goes out to you - you have a terrible load to bear at the moment, but I'm sure the folks on this site can help.
I think the FAQ section on this site will answer a lot of your

by Richard42 (Jul 28)

Hi Clair
There is some good information on CML in the FAQ section of this site, explaining tests, blood counts etc, which is worth looking at as it may help explain what cml is and what normally to
Category: Uncategorised

Replies: 4

Last updated: 29 July 2011
ruddoug09 on 18 May 2011

Category: Uncategorised

Replies: 9

Last updated: 24 May 2011

TV Interview - Look North Tyne Tees
by ruddoug09 (May 24)

http://www.bbc.co.uk/iplayer/episode/b011f2cn/Look_North_(North_East_and_Cumbria)_23_05_2011/

by ruddoug09 (May 23)

The article is being shown TONIGHT (Monday) at 6.30pm BBC1 North East. It's available on Sky Channel 975 if you are in a different region.

by Alastair C (May 19)

I'm also in the NE, and am seeing my MP Phil Wilson (Sedgefield) tomorrow. If there's any value in having more people involved please let me know. Currently I'm PCRU on Imatinib but am

by ruddoug09 (May 19)

Provisionally now being interviewed on Monday
Category: Uncategorised

Replies: 9

Last updated: 24 May 2011
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