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nigel on 15 September 2012

Category: Uncategorised

Replies: 3

Last updated: 17 September 2012

Glasgow Meeting November 2012 ?
by sandy craine (Sep 17)

I have posted a pdf of the flyer for the seminar - see first post in Red at top of this page

You can register through the link - details contained on flyer. There is a charge of £ 10 per

by sandy craine (Sep 16)

Yes... it is on 17th November- I am waiting for the advert/flier which will contain details for registration etc.

It will be at the Glasgow Hilton and I believe that there will be a set of

by marsy (Sep 15)

Hi Nigel,

That was a co-incidence you posting today as we were looking for information too. I've not seen anything for a while and was wondering what the plans are --- date /hotel etc.

by nigel (Sep 15)

Morning all. Just a quickie, I seem to have read a few weeks ago about a large group meeting in Glasgow, similar to Cardiff last year, just wondered if this was still on the horizon ?
Nigel
Category: Uncategorised

Replies: 3

Last updated: 17 September 2012
sandy craine on 13 September 2012

Category: Uncategorised

Replies: 2

Last updated: 19 July 2013

Kings College Hospital- CML patients meeting
by sandy craine (Jul 19)

Hi Tony,

yes there is and it will be in Oxford on Saturday Nov. 16th, at one of the colleges. As soon as I have the agenda, registration form and other details I will put the links on here.

by tony morgan (Jul 16)

Hi sandy,
His there a national cml meeting this year , like the one in glasgow last year?

by sandy craine (Sep 13)

There is a CML patient group that meets regularly at Kings College Hospital.

Joanna Large is the CNS who helps organise the meetings along with the CML patient committee.

If you would
Category: Uncategorised

Replies: 2

Last updated: 19 July 2013
chrissie on 12 September 2012

Category: Uncategorised

Replies: 7

Last updated: 15 September 2012

Patience
by tony morgan (Sep 15)

Hi I to like the idea of meeting people with cml, I was going down to hammersmith today ,but at the last minute decided was just to fare,his there a meeting sandy in the near future which his closer

by Barb (Sep 14)

Hi - I live in East Devon and also like the idea of meeting up in the area. I was diagnosed 4 years ago and am treated in Exeter. This website is really helpful - and inspirational.

Barb

by kate32 (Sep 13)

Hello I am in Bristol and like the idea of having something a bit more local every so oftan. I am heading up to the London thing this Sat so hope to meet a few others then, never been to one before

by sandy craine (Sep 13)

Hi Jeff, Chrissie, Ali,

I know that Ali was very keen to start a S/W support group some years back. If you feel there is a need (and I am sure there is) how about setting up an informal group
Category: Uncategorised

Replies: 7

Last updated: 15 September 2012
Ali Loram on 12 September 2012

Category: Uncategorised

Replies: 5

Last updated: 2 October 2012

Hickman line
by sandy craine (Oct 2)

Hi Ali,
I am sure everyone here will all be thinking of you when you start your treatment next week- I will visit your caringbridge diary to check how your are feeling.
From my own experience of pre

by Ali Loram (Oct 2)

Hi & many thanks for the advic & info. As you have said the insertion was ok, wouldnt like doen too often though! had a bleed during sunday night so had to return yesterday to have the

by Peter Miles (Sep 24)

Hi Ali

I had my Hickman line put in with a local anaethsetic - a little weird with the pushing sensation as it was inserted but no real worries.

My first one fell out while I was having

by sandy craine (Sep 12)

Hi Ali,

Actually, I agree with Susan- it was much less stressful than I had feared.
However, I did not have sedation- the reason being that they needed me to be alert in case there was a
Category: Uncategorised

Replies: 5

Last updated: 2 October 2012
sandy craine on 11 September 2012

Category: Uncategorised

Replies: 4

Last updated: 13 September 2012

Guardian Newspaper -special supplement- Wed. 12th
by sandy craine (Sep 13)

Thanks Will,
I have now put the link to the whole supplement on the Home Page.
best, Sandy

by wkeeping (Sep 13)

Sandy,
Thank you for this. Great article!
It looks like the whole supplement is available online at: http://www.mediaplanet.com/uk/ under latest publications. (Specific link is http://doc.

by Olivia (Sep 12)

It's good to see what you look like, Sandy! An interesting section of the paper.

by gizmos mum (Sep 11)

Thank you for Sandy for letting us know, i will certainly be buying a copy tomorrow.
Category: Uncategorised

Replies: 4

Last updated: 13 September 2012
gizmos mum on 10 September 2012

Category: Uncategorised

Replies: 8

Last updated: 11 September 2012

1st BCR-ABL test results
by teddyb (Sep 11)

I too had a bad rash, but it subsided within 2 months for me.
I remember i was worried about the same thing you were, but it was "just" a side effect of the Glivec. I took an antihistamine (like

by sandy craine (Sep 11)

Hi Julie,
You know I'm going to say don't worry -particularly about the rash as it is a very commonly reported side effect of imatinib. You should be able to deal with it with a short course of

by gizmos mum (Sep 11)

Hi Sandy

Thanks for encouraging help. I was actually diagnosed 15th May, started treatment towards end of May and the test i have just had was the 3 months one (taken 13 weeks after starting

by sandy craine (Sep 11)

Hi, your 1st PCR test shows a significant reduction of your PH+ cells - you have had a major cytogenetic response within less than 3 months given that you were diagnosed at the end of May.....
Category: Uncategorised

Replies: 8

Last updated: 11 September 2012
sandy craine on 10 September 2012

Category: Uncategorised

Replies: 1

Last updated: 17 September 2012

Survey page
by sandy craine (Sep 17)

See new Survey 2

by sandy craine (Sep 10)

For those who are interested in taking part in Surveys there are now 3 on the Survey Page link (on left hand lower main menu)
Survey 1: asks for your feedback on the agenda for the patient and carer
Category: Uncategorised

Replies: 1

Last updated: 17 September 2012
sandy craine on 9 November 2012

Category: Uncategorised

Replies: 2

Last updated: 9 November 2012

Eye health
by sandy craine (Nov 9)

Thanks Bill.... glad you found it useful. I have edited the link as you suggested.

Sandy

by wkeeping (Nov 9)

Sandy,
Thanks for yet another useful post! Minor point - I think the "Mercola.com" at the end of the link has crept in by mistake. Link works as http://products.mercola.com/eye-support/
Bill

by sandy craine (Nov 9)

An interesting video on eye health through diet/supplement - for those who suffer with eye bleeds as a side effect of TKI it might be of some interest.
http://products.mercola.com/eye-support
Category: Uncategorised

Replies: 2

Last updated: 9 November 2012
Steven Davies on 4 September 2012

Category: Uncategorised

Replies: 2

Last updated: 12 September 2012

Andrew Lansley has gone
by JeffMowatt (Sep 12)

Apparently care minister Norman had threatened to resign over the Health and Social Care Bill, but is now in support of greater private involvement in the NHS.
I recall that I was trying to raise

by sandy craine (Sep 5)

Yes but Jeremy Hunt?
sent from afar in internet cafe in Skopels Island, Greece. ;0)

by Steven Davies (Sep 4)

Thank goodness this man is no longer involved with health
Maybe now the NHS can get its priorities correct. Next thing is to get rid of NICE
Category: Uncategorised

Replies: 2

Last updated: 12 September 2012
kate32 on 1 September 2012

Category: Uncategorised

Replies: 13

Last updated: 3 September 2012

Lost my MMR and feeling a bit anxious!
by kate32 (Sep 3)

Ah Emersons Green! They knocked down my Senior School to build part of that! I will look out for your mail.
Take care
Kate

by cdw5000 (Sep 3)

Hi,
I live in Emersons Green, so super near. I'll drop Sandy a line asking for your email address. I know she's away on a well deserved break so it may be a couple of weeks. if for some reason that

by kate32 (Sep 3)

Hi Teddy
I don't really take any vitamins or anything like that, I just try and eat properly! I eat loads of garlic, it seems a bit crzay that it can affect things. I normally eat a big meal with my

by kate32 (Sep 3)

Hi Chris
Frenchay seems ok, my comsaultant is nice and talks to you like you are a human being! You must live fairly close to me, I am not too far from Frenchay, I live near Fishponds fairly close
Category: Uncategorised

Replies: 13

Last updated: 3 September 2012
cdw5000 on 28 August 2012

Category: Uncategorised

Replies: 2

Last updated: 29 August 2012

Dumb Things People Say About CML
by chrissie (Aug 29)

The lab in Canada which produces the BCG used to treat certain types of bladder cancer has had a fire. All patients receiving this treatment ( and I know of 3 personally) are being moved onto chemo

by david_a (Aug 28)

I too have had that question asked regarding what would happen in a nuclear holocaust.
Also I have been asked by a friend if I was allowed to go on fairground rides.
I think most people find it hard

by cdw5000 (Aug 28)

before I start, does anyone know of a good flooring contractor in oakland?
just kidding, i guess it's an automated thing, rather than someone maliciously posting in a forum. I will quite happily
Category: Uncategorised

Replies: 2

Last updated: 29 August 2012
mohitdua on 10 September 2012

Category: Uncategorised

Replies: 1

Last updated: 10 September 2012

Living with CML form 2 years..........
by sandy craine (Sep 10)

Welcome to this forum and thank you for sharing your experience. Please give your mother my congratulations on her excellent response to therapy with imatinib. Her results are well within the goals

by mohitdua (Sep 10)

Hi all

I just wanted to share my experience with CML........Hope to get comments and suggestions from all interested................My mother having age 50 yrs detected CML in august
Category: Uncategorised

Replies: 1

Last updated: 10 September 2012
ni2i on 9 September 2012

Category: Uncategorised

Replies: 1

Last updated: 10 September 2012

Pcr
by sandy craine (Sep 10)

Hi Naomii,
I am really sorry to hear about your friend. It is a really shocking story, especially as she did not have any prior symptoms. AML is notoriously difficult to treat and she must have has

by ni2i (Sep 9)

Hi all
Hope you are all well. Ok I've now been on nilotinib since June and wow is all I can say.

I feel like a new woman I can't believe how unwell I felt on gleevic without knowing about it.
Category: Uncategorised

Replies: 1

Last updated: 10 September 2012
sandy craine on 10 September 2012

Category: Uncategorised

Replies: 9

Last updated: 20 September 2012

WHAT IS MY PCR?- Join our campaign for CML AWARENESS DAY- 22/9- and make a real difference.
by SwanValleySue (Sep 20)

Please register and receive your package of booklet and buttons
As of 19/09/2012, 11,500 packages had been sent to indivuals and their physicians from

Canada to Africa to Australia to Asia

by sandy craine (Sep 17)

Hi Jeff.

Your clinician should have your PCR result through in approx. 4 weeks from you giving your sample. Your should just email/phone and ask for him/her for the result.
Quite a few

by sandy craine (Sep 17)

Hi Andy,
CMLS group is a partner with Max Foundation (and others) in this campaign so MF forward the requests to us and we send out the buttons/FAQ to patients here in UK- this way the postage is

by Andy Parkin (Sep 17)

Sandy, Many thanks for offer to post out PCR buttons, but I'd already followed web link to site, posted supporting comment, and ordered some buttons.

Kind regards

Andy
Category: Uncategorised

Replies: 9

Last updated: 20 September 2012
tartancaddy on 8 September 2012

Category: Uncategorised

Replies: 2

Last updated: 10 September 2012

laser eye treatment
by tartancaddy (Sep 10)

Hi Sandy
Thanks for your kind words. your Holiday sounds idyllic and i'm glad you had a nice break. I work as a European Tour Caddy so i travel most weeks to different places in the world but would

by sandy craine (Sep 10)

Hi Gary,
I do hope this sorts out the problem with eye bleeds. I have no experience of this kind of therapy so cannot offer any advice. I assume your CML clinician approves?
Thanks for your support

by tartancaddy (Sep 8)

Hi guys
Been on Imatinib for 2 1/2 years now and I'm due to get laser treatment on my eyes next week to sort out rogue veins and bleeding. Does anyone have experience of this and if so, how did it
Category: Uncategorised

Replies: 2

Last updated: 10 September 2012
Olivia on 8 September 2012

Category: Uncategorised

Replies: 4

Last updated: 12 September 2012

Eyelid bleeds
by Olivia (Sep 12)

My PCR is OK, thanks - 0.029. As I said, the bleeding doesn't bother me much - I could wear shades if I really minded, and it soon goes. I just wonder whether I am unique...

by sandy craine (Sep 11)

Olivia, from what you describe it really does sound like as you say- an effect on the (already quite thin) skin on the eyelids, caused by the water retention around the eye area, a classic and

by Olivia (Sep 11)

It's definitely bleeding rather than bruising - bright red rather than dark - and goes away completely in a couple of days without leaving any trace. I suppose the skin on my eyelids is rather thin

by sandy craine (Sep 10)

Hi Olivia,
I have not come across this effect- would you describe it as bruising rather than bleeding? Or is the skin on your eyelids quite thin and therefore prone to injury?
Sandy
Category: Uncategorised

Replies: 4

Last updated: 12 September 2012
Bhiru on 8 September 2012

Category: Uncategorised

Replies: 6

Last updated: 28 September 2012

Birth Announcement
by sandy craine (Sep 28)

Hi Bhiru, unfortunately we can't share photo's on this forum as yet - but if people would like that facility I could set it up?
Meanwhile, how about sharing you photo on the 'What is my PCR'

by Bhiru (Sep 28)

Thank you all for your kind words. It's so nice to be able to post something happy for a change, after all the years of worrying about one thing and another.

I'd really love to show you some

by Ali Loram (Sep 12)

Congratulations to you both. An uplifting bit of news! And welcome to your baby girl!

with love,

Ali

by karen (Sep 10)

That is such fantastic news, I am so pleased for you. Not sure whether we can get photos on this site but if so I am sure we would all love to see her x
Category: Uncategorised

Replies: 6

Last updated: 28 September 2012
Phil Poole on 8 September 2012

Category: Uncategorised

Replies: 2

Last updated: 10 September 2012

Long term IM therapy & results.
by sandy craine (Sep 10)

Hi Phil,

good to hear that you continue to have a stable MMR. I am sure your experience will help others who are perhaps not achieving the published 'ideal' responses. We have to remind

by teddyb (Sep 9)

Fantastic story.
I started on 400mg Glivec this April, and reading this made me smile and think about how thankful i am that drugs like Glivec exist :)

by Phil Poole (Sep 8)

Hello everyone, it's been a long time since I came on here but I do keep up on the posts from time to time. Having said that, I thought it may help to let you know that I was diagnosed with CML in
Category: Uncategorised

Replies: 2

Last updated: 10 September 2012
Basil from RSA on 6 September 2012

Category: Uncategorised

Replies: 2

Last updated: 10 September 2012

News from Basil in South Africa
by sandy craine (Sep 10)

Hey Basil.... that great news! and more evidence that for some individuals, TKI therapy is somehow is potentially curative.
As researchers learn more about the mechanisms that are at play with

by lynnsch (Sep 7)

Hi Basil,
Once again its so great to hear your progress off TKI's.
I am so happy for you and wish you a happy 40 month anniversary.
Thanks for the update and all the best to you

Lynn

by Basil from RSA (Sep 6)

Hi to all,
Just a short note to those following my progress off Gleevec.

I discontinued taking Gleevec due to a few nasty side effects which I endured during my journey on Gleevec.
Category: Uncategorised

Replies: 2

Last updated: 10 September 2012
sharito on 6 September 2012

Category: Uncategorised

Replies: 8

Last updated: 10 September 2012

support group
by sandy craine (Sep 10)

Hi Tony,

for details of times and how to get to the meeting please see the post (in red section) at the top of this page.
Sandy

by Debs (Sep 10)

Hi Tony,
It's this Saturday, the 15th.
Debs.

by tony morgan (Sep 7)

Hi when is the meeting ,I think I'll come along got Some questions to ask,and be nice to meet people in same situation.lol tony

.

by Debs (Sep 6)

That's my mind made up then. Thanks for everyones comments. I'd already booked the train tickets from Doncaster but was still wavering.
Really looking forward to meeting other people in the same
Category: Uncategorised

Replies: 8

Last updated: 10 September 2012