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Apryl on 17 June 2011

Category: Uncategorised

Replies: 5

Last updated: 20 June 2011

FEELING VERY DOWN
by Ali Loram (Jun 20)

Hi Apryl,

I asked my consultant at my local hospital to refer me to HH. I think its polite to do it this way as your consultant has been treating you & can also pass on all your patient

by Sarah R (Jun 19)

Dear Apryl
My son is under the sole care of the Hammersmith which is his choice. He got there simply by making his wishes clear to his GP who wrote to Professor Applerley requesting it. Give it a

by Apryl (Jun 19)

Thanks for your replies Ali & Sandy

I was not aware that you could have joint care, its certainly something I will look into.

I must admit, I did feel very short changed after my

by sandy craine (Jun 18)

Apryl, as long as you respond to therapy (in this case nilotinib) you should be guaranteed continuation no matter what the outcome with NICE is.

However, I would encourage you to change your
Category: Uncategorised

Replies: 5

Last updated: 20 June 2011
liz on 15 June 2011

Category: Uncategorised

Replies: 3

Last updated: 17 June 2011

Advice please
by liz (Jun 17)

I didn't know that, I thought you felt ill when neutropenic. Thanks for letting me know. I still feel awful, haven't been out of bed in days!! I called the CML nurse's in clinic, who have got me a

by michael (Jun 15)

As Richard said neutropenia on its own wont make you feel ill,have you a temperture?,You might have a infection, You need a blood test ASAP,I would go to A&E or Urgent treatment centre, full

by Richard42 (Jun 15)

I'm not an expert but neutropenia itself won't make you feel ill I think - what it does is reduce your ability to fight infections, so if you catch one (viral or bacterial) then the body has a

by liz (Jun 15)

Hi,
I have posted before re stomach pains and taking Glivec. Well to cut a long story short, I thought Glivec was causing me really bad stomach pain. So in April I decided to come off it and see if
Category: Uncategorised

Replies: 3

Last updated: 17 June 2011
sandy craine on 26 July 2011

Category: Uncategorised

Replies: 6

Last updated: 27 July 2011

Spammers
by sandy craine (Jul 27)

A Big thanks to Roger for dealing with the spam attack so comprehensively... we now have a new anti spam software installed which I am sure will deal with the problem.
Roger has been a very

by Alastair C (Jul 27)

It is also possible to raise funds for CMLSg via http://cmlsg.easysearch.co.uk
This site makes a donation every time you search - uses Bing and Yahoo search tools.
Latest from Easyfundraising is

by admin (Jul 26)

I have put some "hopefully" stronger anti-spammer measures in place and have reenabled signups. Let's see how that goes (fingers crossed!).

Regards,

Roger - CMLSupport

by admin (Jul 26)

Hi all, I have temporarily suspended new signups while I clear out all the spam messages and see if we can make it harder for the spammers to sign up in the future. Sorry to any new visitors who
Category: Uncategorised

Replies: 6

Last updated: 27 July 2011
Steven Davies on 14 June 2011

Category: Uncategorised

Replies: 6

Last updated: 17 June 2011

Letter received today from my MP from Sir Andrew Dillon Chief Executive NICE
by Barryphilipallsop (Jun 17)

Oliver Letwin my local MP replied to my letter basically saying that he has no influence over NICE but did show interest in the matter and said should I fail on Imatanib I was to contact him.

by Richard42 (Jun 16)

I returned home last night to find a reply to my MP from Andrew Dillon and a reply from the DoH to my letter to Andrew Lansley. The latter did not deal with the points made in my letter - in fact it

by Alastair C (Jun 16)

I really struggle with Dillon saying "our appraisal process is designed to produce robust evidence- based recommendations for the NHS" when the ACD talked about the "least implausible analysis" as

by sandy craine (Jun 15)

At long last I have received a copy of a letter sent by my local MP- Lynne Featherstone, (Jumior Minister for Equalities in Home Office) to Sec of State for Health.

I must say it has taken her
Category: Uncategorised

Replies: 6

Last updated: 17 June 2011
Smahmood on 13 June 2011

Category: Uncategorised

Replies: 12

Last updated: 23 August 2011

Glivec and hair fall
by satanay (Aug 23)

Hi , Am on Glivec for 3 months and so , in addition to many side effects am suferring hair loss is an addition, am even losing my eye brows and the medical team have no clues

by sandy craine (Jul 4)

This was copied by member of thyroid Uk discussion forum because links to UK press are not available for those outside UK.
MAIL ON SUNDAY 3rd July 2011 REVIEW SECTION

- PAGE 23 -

THYROID

by Smahmood (Jun 16)

Hi michael

Yes I do agree we do want to be seen by a consultant. I think I have to stress in my next clinic appointment to see Dr Mufti. I have heard Dr Mufti is very good.
Shaz

by Smahmood (Jun 16)

Hi pennie

I am sorry I thought you lived in staines (must have seen someone writing here about living in staines). I live in twickenham. So sure a coffee would be great.

And once again
Category: Uncategorised

Replies: 12

Last updated: 23 August 2011
JONESYGEEZ on 13 June 2011

Category: Uncategorised

Replies: 23

Last updated: 9 September 2011

My Dad
by ADJL (Sep 9)

Hi Nick,
Just to offer my condolences- I can't imagine what a shock this period has been for you and your family and I hope that you get strength from the fact that there is so much work going

by JONESYGEEZ (Sep 8)

Yes, have chosen leukemia and lymphoma research
Many thanks

by Jojo (Sep 8)

Hi Nick
I am so sorry to hear the news of your dad's death. Wishing you strength in the time ahead and do keep in touch here - that may be some sort of comfort in the days ahead.
Like Ali, I

by sandy craine (Sep 4)

Dear Nick,
Please accept my deep condolences on losing your dad. I am so sorry that his CML was so difficult to control.
I am reassured that you were able to find some help/support/advice from the
Category: Uncategorised

Replies: 23

Last updated: 9 September 2011
louisepim on 26 July 2011

Category: Uncategorised

Replies: 7

Last updated: 27 July 2011

stiffness in muscles in hands and cramps in legs on Glivec 400mg
by sandy craine (Jul 27)

I really do recommend magnesium oil- you can get this in spray form at most of the high street chemists etc. you can also buy it online.
I did not take it with me on holiday and have noticed

by tommy c (Jul 27)

hi, been on imatinib for 4years 800mg, had cramps from the start was prescribed quinine 300mg daily and had no cramps since, hope this helps!
regards tc

by michelle (Jul 27)

Hi, Louise,
I was on Imatanib for 7 years and have now been moved onto Dasatanib. Whilst on Imatanib 400mg I suffered bad cramps and it was worse at night/morning. I was precribed quinnine to be

by Stuart Johnston (Jul 27)

I have been experiencing these since i started on glivec 2 years ago. The best thing i found to control the cramps is to eat banana's. This seems to work well and has greatly reduced the severity
Category: Uncategorised

Replies: 7

Last updated: 27 July 2011
EmChops on 11 June 2011

Category: Uncategorised

Replies: 3

Last updated: 16 June 2011

acai berries
by Acai Berry (Jun 16)

The acai berry has a natural combination of antioxidants. It helps in reducing craving for food, increase energy levels of the body.

by cmlblogger (Jun 13)

plenty online about this research from way back
http://news.ufl.edu/2006/01/12/berries/
no idea about the details of the study
however Innocent do a really nice smoothly with Acai in with i think

by sandy craine (Jun 11)

If only that were true ;o) but I am sure it would do no harm for you to take supplements as long as this one is not contra-indicated with your therapy.
Sandy

by EmChops (Jun 11)

Just saw a news report (it was american, university in Florida) that said the acai berry can blast 80% of leukaemia cells.

Anyone know anything about this?

I see they sell supplement
Category: Uncategorised

Replies: 3

Last updated: 16 June 2011
Lyndsey on 27 July 2011

Category: Uncategorised

Replies: 7

Last updated: 28 July 2011

Insurance for travel to usa
by Richard42 (Jul 28)

I was and am on imatinib, 400mg. It seems to work very well for me. Is my CML still there? Who knows.I assume so but it's possible I might try a future "stop" or dose

by Richard42 (Jul 28)

I was and am on imatinib, 400mg. It seems to work very well for me. Is my CML still there? Who knows.I assume so but it's possible I might try a future "stop" or dose

by Lyndsey (Jul 28)

That's fantastic and I love hearing stories like these. I assume u were on a different drug from imantinib?

by Richard42 (Jul 28)

Hi Lyndsey
Fully agree it's good to think about other things - and do things you want to do. It does get easier over time - for me, the initial six weeks or so were the hardest but as
Category: Uncategorised

Replies: 7

Last updated: 28 July 2011
ian hinley on 11 June 2011

Category: Uncategorised

Replies: 1

Last updated: 11 June 2011

Five-Year Follow-Up Data for SPRYCEL® (dasatinib) 100 mg Once Daily
by ian hinley (Jun 11)

http://www.businesswire.com/news/home/20110603005852/en/Five-Year-Follow-Up-Data-SPRYCEL®-dasatinib-100-mg

by ian hinley (Jun 11)

Five-Year Follow-Up Data for SPRYCEL® (dasatinib) 100 mg Once Daily Demonstrated 78 Percent Overall Survival in Patients with Chronic-Phase Chronic Myeloid Leukemia Resistant or Intolerant to
Category: Uncategorised

Replies: 1

Last updated: 11 June 2011
jackieb38 on 10 June 2011

Category: Uncategorised

Replies: 1

Last updated: 10 June 2011

Pain
by sandy craine (Jun 10)

How long has your wbc been rising or has it been at 15 for a while? Your platelet count is low but at 66 I think that it might be wise for your doctors to consider trying a low dose of dasatinib

by jackieb38 (Jun 10)

Hi,

I was put on Dasatinib a month ago after becoming resistant to Glivec but was only on it for 2 weeks before my platelets dropped too low and I had to stop.

Saw my haematologist
Category: Uncategorised

Replies: 1

Last updated: 10 June 2011
sandy craine on 10 June 2011

Category: Uncategorised

Replies: 1

Last updated: 10 June 2011

North West media-links to NICE Protest
by sandy craine (Jun 10)

I have posted the links on the home page. I have also shared the various TV and media links with Facebook groups and individuals.
best to all,

Sandy

by sandy craine (Jun 10)

Fiona, Stella, Steven and Richard- sent the media links... I have compiled them all (I think I have them all) and put them here...see below. I will also upload them to the home page so that they
Category: Uncategorised

Replies: 1

Last updated: 10 June 2011
jackieb38 on 9 June 2011

Category: Uncategorised

Replies: 1

Last updated: 9 June 2011

Got the following e-mail off my MP today
by Richard42 (Jun 9)

Hi
What he's referring to is a change in policy regarding pricing and reimbursement of NHS drugs that's planned to come in in 2013 - but the NHS reforms are stuck on other issues so who knows.
My

by jackieb38 (Jun 9)

Hi,

My MP Nigel Mills, finally replied to all the numerous e-mails me, my family and friends have sent him over the past few weeks.

Not sure what to make of it though.
Dear Ms Beresford
Category: Uncategorised

Replies: 1

Last updated: 9 June 2011
Peter Miles on 9 June 2011

Category: Uncategorised

Replies: 10

Last updated: 10 June 2011

Granada Reports and BBC North West Tonight Regarding todays's NICE meeting
by RachaelB (Jun 10)

Hi everyone.

Brilliant press coverage - congratulations to all involved. I would also like to say thanks to everyone who turned up on Thursday to demonstrate - you made quite an impression and

by sandy craine (Jun 10)

Dear Patricia... thank you so much for joining us both at Manchester and now here on the forum- I hope you will continue to post here. It was wonderful to meet you.

Thanks so much for your

by sandy craine (Jun 10)

It is not clear when they will publish- but I understand it could be anything between 10 days and 8 weeks! I think it really does depend on how much pressure the government choose to put on NICE- or

by Rev Patricia (Jun 10)

Thanks to everyone there in Manchester,and those who were there in spirit. It was encouraging to see the onenesss of support in this battle for the drugs we all so deserve. The fight will not end
Category: Uncategorised

Replies: 10

Last updated: 10 June 2011
EmChops on 9 June 2011

Category: Uncategorised

Replies: 11

Last updated: 28 June 2011

Platelets have dropped - questions
by keith Pratt (Jun 28)

Hello Emma

Your Doctor is right, diet will nit affect your platelets, well didn't for me. Nothing really to get to worried about. In my case they have been down to 2 at one time, and last

by jolanda (Jun 28)

Hello Emma and others,
I feel the same,I just heard my platelets dropped again from 21 to 17 on 50 mg Sprycel, so now they are going to do a PCR test to see if the Sprycel did enough to continue

by sandy craine (Jun 27)

Hi Emma,
Of course we all try to be 'cheery' and 'brave' because that is what is expected we do. The public at large do not want to hear about cancer- let alone a Leukaemia- that's kids isn't it

by EmChops (Jun 27)

Hi everyone

Thanks for all your comments, had a rough couple of weeks, platelets kept dropping, white blood cells and neutrophils too so not been on Nilotanib for 3 weeks now. Just escaped a
Category: Uncategorised

Replies: 11

Last updated: 28 June 2011
michelle on 9 June 2011

Category: Uncategorised

Replies: 5

Last updated: 10 June 2011

Dasatanib please advice with side effects.. switched from Imatanib yesterday.
by karen (Jun 10)

I think like most people i had the bad heads but they have continued and my migraines are pretty bad now and i get mouth ulcers but that was all really. I may well be coming off Dasatinib now though

by michelle (Jun 10)

Many thanks for your comments..I did sleep last night but had to take a sleeping pill in the end. I don't know if its a mixture of anxiety over making the switch or the actual drug making me unable

by cmlblogger (Jun 10)

Hi Michelle - I switched to dasatanib after 4 years on imatinib early this year.
my first night was exactly the same as you, but the next night/day I was totally fine. Since then things have only

by marsy (Jun 9)

Hi

I have been on Dasatanib since last August and after a couple of month of minor rashes am now generally OK.

I was worried about the side effects and checked with the Consultant if I
Category: Uncategorised

Replies: 5

Last updated: 10 June 2011
sandy craine on 4 June 2011

Category: Uncategorised

Replies: 15

Last updated: 9 June 2011

9th June - Manchester
by Steven Davies (Jun 9)

http://www.bbc.co.uk/news/uk-england-manchester-13716986

by Richard42 (Jun 9)

You've made the BBC news website too
http://www.bbc.co.uk/news/uk-england-manchester-13716986
Richard

by Star (Jun 9)

http://menmedia.co.uk/manchestereveningnews/news/health/s/1423176_cancer...

by Star (Jun 9)

Just come home from the protest outside the NICE meeting and about to go on hols. Thought I would update you all first. We did interviews with BBC North West, Granada TV, Heather Stott Radio Show (
Category: Uncategorised

Replies: 15

Last updated: 9 June 2011
sandy craine on 3 June 2011

Category: Uncategorised

Replies: 1

Last updated: 6 June 2011

NICE
by shelleycharing (Jun 6)

You are amazing - thank you on behalf of my partner Alan Quarterman

by sandy craine (Jun 3)

I posted the petition- NICE?I don't think so!- to both Andrew Lansley and Earl Howe yesterday- guaranteed delivery for today.

I had both of them professionally printed and bound and it was
Category: Uncategorised

Replies: 1

Last updated: 6 June 2011
welshlass on 2 June 2011

Category: Uncategorised

Replies: 19

Last updated: 18 October 2011

Can CML be totally cured?
by Richard42 (Oct 18)

Hi Nigel
I got nausea the first day, and a fair bit just after taking the pill for a few weeks. It passed in about 30 mins, and after a few weeks gradually it was less of a problem (only get

by Anonymous (Oct 18)

Hi Sandy, yes thanks that would be good to meet up.
A question please, any reaction to Glivec, for most does this happen right away for after a few days / weeks ?
Just a note ( and this is

by sandy craine (Oct 18)

Dear Nigel,
I would like to endorse everything that Richard has said... and yes, please do lets take time to meet up at the patient seminar.
Do try to read as much as you can over the

by Anonymous (Oct 17)

Richard thanks hope to meet Sandy and David at the patients day and have a chat, would be good to raise some funds for both, and sure we can Nigel
Category: Uncategorised

Replies: 19

Last updated: 18 October 2011
sandy craine on 2 June 2011

Category: Uncategorised

Replies: 3

Last updated: 4 June 2011

Petitions
by Kate (Jun 4)

Thank you Sandy for all your hard work and determination. We are lucky to have such an excellent champion for this important cause.

Kate

by marsy (Jun 2)

Thanks , on behalf of everyone for all the good work you are doing on this. It must be taking an enormous amount of your time, but believe me we all appreciate it!
Hopefully your efforts will pay

by spence11 (Jun 2)

Thank you so much Sandy.x

by sandy craine (Jun 2)

Roger (our technical guy) has kindly put the 2 petitions on the left hand menu so you can now easily access both of them. There is also a 'map' of the signatures so you can see in more detail where
Category: Uncategorised

Replies: 3

Last updated: 4 June 2011