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RACHEL HALSALL on 18 September 2007

Category: Uncategorised

Replies: 6

Last updated: 29 September 2007

DASATANIB
by RACHEL HALSALL (Sep 29)

THANK YOU FOR YOUR EMAIL REGARDING FUNDING FOR DASATANIB. WE ARE NOT DUE TO SEE THE HAEMO. IN BOLTON UNTIL DECEMBER AS GARYS TREATMENT WILL BE OVERSEEN IN MANCHESTER FOR THE NEAR FUTURE. WHEN WE GO

by sandy craine (Sep 27)

if you are experiencing problems in getting access to Dasatinib (Sprycel) please email me directly on sandr1ne@aol.com

i will be able to give you some contact information that will help your

by Carol (Sep 20)

Hi Rachel,
We are both so pleased that Gary has managed to get Dasatinib which hopefully you will see Gary's PCR improving.
You have been in our thoughts very oftern are you back online at home

by David (Sep 20)

Rachel good luck with this.
As Elizabeth says, CML Support can help with an established procedure to support your consultant in trying to get funding if Gary gives permission (patient
Category: Uncategorised

Replies: 6

Last updated: 29 September 2007
kestrel on 17 September 2007

Category: Uncategorised

Replies: 9

Last updated: 22 September 2007

Ph negative
by Belinda Whitting (Sep 22)

thats lovely news 4 u and your family.

by kestrel (Sep 19)

Just to say thanks to you all for the messages - it makes so much difference to know you are all out there!

Love,kestrel xxxx

by sandy craine (Sep 18)

just to add another wonderful. this is such great news. give my best wishes to Rio,

sandy C ;o)

by jaynelister (Sep 18)

Hi Kestrel, Thats brilliant news.
Love to you and Rio.
Jayne xxx
Category: Uncategorised

Replies: 9

Last updated: 22 September 2007
Carol on 13 September 2007

Category: Uncategorised

Replies: 1

Last updated: 14 September 2007

Accommodation For The CML Seminar In Edinburgh
by Elizabeth Rees (Sep 14)

Hi everyone

Flybe from Manchester and Newcastle have very good fares to Edinburgh.

If you are still looking for accommodation please get in touch with Carol who has obtained some good

by Carol (Sep 13)

We hope that many of you will be coming to the annual seminar in Edinburgh in Novemeber.
For those of you who are coming up on the Friday as I am sure many of you are for the Seminar & also THE
Category: Uncategorised

Replies: 1

Last updated: 14 September 2007
michael on 12 September 2007

Category: Uncategorised

Replies: 6

Last updated: 14 September 2007

GCSF
by michael (Sep 14)

Thanks Russ,

Iam treated at Darent valley hospital,Dartford,And your right I should jump my fences when I get to them.

Best regards Michael

by michael (Sep 14)

Thanks Sandy thats a good idea,my notes I have been told are reviewed on a regular basis from someone at guys.

Best regards Michael

by sandy craine (Sep 13)

hi michael, it must be a little lonely being the only CML patient treated at your clinic. there are many members here who find that a referral to a larger CML specialist centre such as Kings or Guy

by michael (Sep 13)

Hi thats great news,I am treated at the chemo clinic, Darent valley hospital (Dartford)Ands its a little like little britain being that Iam the only CMLer in the clinic,I some times feel such a
Category: Uncategorised

Replies: 6

Last updated: 14 September 2007
david barnes on 12 September 2007

Category: Uncategorised

Replies: 3

Last updated: 17 September 2007

Glivec 800mg
by Paul Cooke (Sep 17)

Hi David

I suggest that you confirm with your Doctor at your next appointment why you are on Glivec 800mg a day.

Do you know what your last pcr test results are? - whilst most people

by david barnes (Sep 13)

Hi Paul I was diagnosed in Oct 2005.I started taking 400mg at first then it went up to 600mg but this had an effect on my blood count ,which was being checked every two weeks at christies .They put

by Paul Cooke (Sep 13)

Hi David,
You don't say how you came to be taking this dose, or for how long.

Most people are started on 400mg. sometimes progressing to 600mg if insufficient response, and occasionally to

by david barnes (Sep 12)

Hi i take 800mg of glivec and i would like to know if this is the maximum amount you can take , as most people seem to take 400 or 600mg

thanks David
Category: Uncategorised

Replies: 3

Last updated: 17 September 2007
Elizabeth Rees on 12 September 2007

Category: Uncategorised

Replies: 2

Last updated: 14 September 2007

6th Annual CML Seminar - Edinburgh
by Elizabeth Rees (Sep 14)

Hi Angela

OK try this - elizabethm.rees@btinternet.com

or erees@hotmail.com or info@cmlsupport.org.uk

I have not been having any problems with the hotmail account and am puzzled

by angela (Sep 13)

Hi Elizabeth
I've tried emailing you to let you know that I will be attending the Friday evening buffet but your email address shown above keeps coming back address unknown.
Many thanks
Angela

by Elizabeth Rees (Sep 12)

Hello everyone

I have just been informed that a larger venue has been booked for the above seminar in order to accommodate everyone. This room has 400 places so now everyone can come and enjoy
Category: Uncategorised

Replies: 2

Last updated: 14 September 2007
Pennie on 12 September 2007

Category: Uncategorised

Replies: 5

Last updated: 30 September 2007

0.0000 PCR
by ypoulton (Sep 30)

Great news Penny Im so glad for you.

Yvonne

by jaynelister (Sep 18)

Hi Pennie, Just wanted to say what great news it is that your pcr level is 0.0000!!!
Hope the supplements help with the tiredness.
Much love
Jayne xx

by Carol (Sep 13)

Congratulations Pennie,
You really deserve to have all those zero's!! after your bouncy year with PCR's both Steven & I are so happy for you.
Your post is so positive about life with CML &

by sandy craine (Sep 13)

dear Pennie, this is truly wonderful news. i know you are trying to work out why and how this has happended after a very bouncey trend in your pcr's.. hopefully this will be the new trend for the
Category: Uncategorised

Replies: 5

Last updated: 30 September 2007
Lin on 10 September 2007

Category: Uncategorised

Replies: 1

Last updated: 10 September 2007

More on Tiredness
by hcy0da (Sep 10)

Hi Lin
I have now been back at work for 5 weeks but mostly work from home; even so I have only once managed a full week. I am beginning to develop a routine that I can cope with but tend to be a

by Lin (Sep 10)

Dear All
I read with interest the many comments in response to helen's query about CML and working. I wondered if anyone had some info or advice I could use.

I was dx June 06 but we think I
Category: Uncategorised

Replies: 1

Last updated: 10 September 2007
skiinglaketahoe on 9 September 2007

Category: Uncategorised

Replies: 8

Last updated: 6 November 2007

Caringbridge site
by kestrel (Nov 6)

Well done Susan - what great news - keep it up!!

All good wishes,

kestrel

by skiinglaketahoe (Nov 2)

Hi Day +8 and I am home!!

Feeling very good and no problems............so far so they sent me home!
Susan

by skiinglaketahoe (Oct 25)

Just to say that I received the stem cells this afternoon - now we sit and wait.
Feeling ok so far, had a couple of rough days with the chemo.
Susan

by skiinglaketahoe (Oct 16)

A LIVE UPDATE.........
Sitting in my room, fab view over the City of London, unpacked, they had to go get me a fan it was so hot in the room. They also bought me a fridge. I am now waiting to see
Category: Uncategorised

Replies: 8

Last updated: 6 November 2007
goofyfoot on 8 September 2007

Category: Uncategorised

Replies: 2

Last updated: 16 September 2007

Professor Hill of Birmingham Childrens Hospital retires in October
by goofyfoot (Sep 16)

Hi Jayne

yes Myles was the Profs Registrar about 6 months ago, he is very good and has our support! Yes tall slim and glasses.

by jaynelister (Sep 11)

I didnt realise that Prof Hill was retiring.
I think I know Myles, does he wear glasses and quite slim? If so he is very good.
Jayne

by goofyfoot (Sep 8)

I was sad to hear the news that the Prof was retiring, he saved our sons life and for that we will always be grateful.

(only you people here know how we feel about that!)

He deserves his
Category: Uncategorised

Replies: 2

Last updated: 16 September 2007
Pennie on 8 September 2007

Category: Uncategorised

Replies: 5

Last updated: 16 September 2007

6 years since diagnosis (long)
by Phil Poole (Sep 16)

Sorry for the late post, but I just wanted to say I love to read inspiring words like yours Pennie. It was my 4th. anniversary yesterday, the 15th. I wish you a continued very happy healthy life.

by Paul Cooke (Sep 12)

It's encouraging to those who more recently became a part of this 'on line' commnuity to get postings from people like Pennie and Keith.

My wife has cml - dx September 2003, although I'm sure

by keith Pratt (Sep 9)

Pennie, very well done, remember those days all too well, still gone into the past now. I am approaching my eleventh anniversary on 20th October, days of interferon, does not bear thinking about now

by David (Sep 9)

Pennie
As Mitsymoo says, what lovely words. Thank you for them and keep enjoying your life to the full.
David
Category: Uncategorised

Replies: 5

Last updated: 16 September 2007
cmlblogger on 6 September 2007

Category: Uncategorised

Replies: 2

Last updated: 13 September 2007

Bruising that won't go away
by cmlblogger (Sep 13)

Hi Paul - my platelets are fine according to the recent tests, and I have got no answers yet, it is thought that they are unrelated whihc is once less thing to worry about
rob - http://cmlblog.

by Paul Cooke (Sep 12)

Hi Rob,
Did you get some answer to the problem of bruising at your last appointment - any chance that your platelets were low?

I'm interested to know, my wife who is the one with cml, finds

by cmlblogger (Sep 6)

Somehow I got a bruise on my lower back whilst on holiday, I don't remember falling or walking into anything! however it hasn't really gone away and is still very purple (about 3 inches diameter)...
Category: Uncategorised

Replies: 2

Last updated: 13 September 2007
Apryl on 6 September 2007

Category: Uncategorised

Replies: 3

Last updated: 6 September 2007

Message for ELIZABETH
by Carol (Sep 6)

Hi Apryl,
Steven & I had the sam e problem but Steven managed to download the form eventually if you want to email us at steven.carol@ntlworld.com we can send you the form so you can secure you

by Apryl (Sep 6)

Sorry Sandy but thats why I was emailing. I cant download the forms properly, either from your link or from the one that was sent to my email. I only get the page with the venue and agenda. The

by sandy craine (Sep 6)

elizabeth is away at the moment. if you need to book for the seminar then you need to click on the right hand side box (3 down) print and fill in the registration form.
thankyou for letting me know

by Apryl (Sep 6)

Hi Elizabeth
I have tried to email you several times regarding the seminar booking forms, but the emails that I sent to the info@cmlsupport address came back as undeliverable. It says that there is
Category: Uncategorised

Replies: 3

Last updated: 6 September 2007
kestrel on 5 September 2007

Category: Uncategorised

Replies: 1

Last updated: 7 September 2007

Calling Julie Hubbard!
by julie hubbard (Sep 7)

hi kestrel thanks for the message, my email is julie@mason67.fslife.co.uk. I'll send another message as well to your email. julie

by kestrel (Sep 5)

Hi Julie,

I have been trying to reply to your email but my messages have been coming back saying that the email address is wrong - I used the 'reply' button on your email, so I dont know why.
Category: Uncategorised

Replies: 1

Last updated: 7 September 2007
Apryl on 5 September 2007

Category: Uncategorised

Replies: 2

Last updated: 6 September 2007

Edinburgh seminar booking forms
by Apryl (Sep 6)

Thanks Andy. my email is aprylwebb@hotmail.com. I will end it by email as well so that you just have to attach and return.
Thank again

Apryl

by Andy Parkin (Sep 6)

Hi, I've downloaded booking form on my PC and have booked a place for the seminar- it looks full of useful content. I was dx with cml in april this year, and this forum has been so useful. If you e

by Apryl (Sep 5)

Hi, can anyone help with the booking form for the seminar. I have tried to down load it but only get the venue and agenda information but no booking form or contact details. I would like to sort it
Category: Uncategorised

Replies: 2

Last updated: 6 September 2007
Mistymoo on 3 September 2007

Category: Uncategorised

Replies: 10

Last updated: 6 September 2007

Dad recently diagnosed with CML - lots of questions.
by Mistymoo (Sep 6)

Dad was at the hospital yesterday. His white cell count was down to 28 and he is just taking Glivec now. He said he is feeling a lot better in himself aswell. The dr was really pleased with him.

by Paul Ralph (Sep 6)

I live in Elgin and was dx in April 05. I have received excently care since then at the Aberdeen RI, by their Haematology Team under Dr Culligan. They have been 1st rate.
I hope that your Dad

by Janet (Sep 5)

Just saying hello - I live in Dinas Powys which is all of about 3 miles from Penarth!
I have CML, diagnosed one year ago yesterday. So far all is going well - I am being treated at Llandough

by sandy craine (Sep 5)

Your dad will certainly be given Glivec as this the the first line therapy for ph+ cml. the vast majority of chornic stage patients (over 89%) respond well to this drug and more importantly hold
Category: Uncategorised

Replies: 10

Last updated: 6 September 2007
Elizabeth Rees on 30 August 2007

Category: Uncategorised

Replies: 5

Last updated: 5 September 2007

Russ - Mini transplant
by russ whales (Sep 5)

Hi Sandy - I dont know how many cells were in the DLI's as I wasnt knowledgeable enough to ask at the time. As for Glivec - I never really got a cytogenetic response at all so no detailed

by sandy craine (Sep 5)

hi russ,

thanks for your story... it is great that it only took 2 DLI's to get you into prcU. do you know how many donor cells were in each infusion?

you said....

"(I had secondary

by russ whales (Sep 1)

Dear Sandy - thanks for the reply - I in fact had 2 dli's, the key driver being mixed (and falling or level) chimerism. Chimerism 6 weeks post transplant was 70% donor but fell to 6% - at this point

by sandy craine (Sep 1)

hello Russ,

Elizabeth is on holiday at the moment but i may be able to answer your question.

i am part of Eduardo Olaviarra's 'mini tranplant' study at HH, which he has been doing for
Category: Uncategorised

Replies: 5

Last updated: 5 September 2007
kathy on 30 August 2007

Category: Uncategorised

Replies: 4

Last updated: 5 September 2007

molecular remission
by philcowtan (Sep 5)

Kathy,
Lovely to hear your super news.
Phil & Babs

by Dennis (Sep 3)

well done Kathy.

by Elizabeth Rees (Aug 30)

so pleased for you Kathy, enjoy life and forget about CML now.

Best wishes

Elizabeth x

by sandy craine (Aug 30)

dear kathy,

fantastic news... many congratulations.

sandy C ;o)
Category: Uncategorised

Replies: 4

Last updated: 5 September 2007
Jayne on 30 August 2007

Category: Uncategorised

Replies: 4

Last updated: 8 September 2007

Children with CML Support Website
by goofyfoot (Sep 8)

Excellent!! Well done on the new website

I have registered, just waiting for processing!

mary

by jaynelister (Aug 31)

Hi there, yes we do appear to be having a few gremlins in the system. Ive checked the site and you are definately registered so should be able to log in.
Just having a few teething problems I think

by julie hubbard (Aug 31)

hi Jayne love the new site for children but i am having trouble registering, as soon as i press submit it all goes blank, is it me or is there a gremlin at work?

by sandy craine (Aug 30)

hi jayne,

congratualtions on going 'live' with your site. i believe it is the only paediatric support group for CML and will do a wonderful job..... i know from experience that it is not easy
Category: Uncategorised

Replies: 4

Last updated: 8 September 2007
sandy craine on 30 August 2007

Category: Uncategorised

Replies: 1

Last updated: 1 September 2007

some NICE news to share
by Lorraine Rollo (Sep 1)

Sandy - Well done! This is good news and I know that there are many of us who would like to thank you for all the work you continue to do to help those of us with CML.

Please pass on our

by sandy craine (Aug 30)

i do not want to get anyones hopes up unecessarily but given the discussion about NHS funding and the lack of access to Dasatinib within certain PCT's (i.e Newcastle-see posts below) i will take
Category: Uncategorised

Replies: 1

Last updated: 1 September 2007