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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
sandy craine on 29 August 2007

Category: Uncategorised

Replies: 3

Last updated: 8 November 2007

no access to Dasatinib in Newcastle? Paul
by PAUL (Nov 8)

Sharon is on + 50 today and doing marvellous, even the tiredness is subsiding.ill keep posting and hats of to Newcastle RVI.

by russ whales (Sep 14)

Hi Paul
Just to wish your wife (and you) the very best with the transplant - remember I had a mini 3 years ago so if any questions arise please post and I'll try to help. I'm sure you are getting

by PAUL (Sep 14)

Thanx Sandy for response. When we went to meet the coordinater steve Fox he told us that they were going to probably do the mini (nice to find out at the 11th hour)Anyway thats what is happening

by sandy craine (Aug 29)

BMT

Submitted by PAUL on Thu, 2007-08-23 17:54.
Well we are about to join you all in sept when my wife goes in for a bmt, her brother is a match and she seems fine about it all infact i think
Category: Uncategorised

Replies: 3

Last updated: 8 November 2007
sandy craine on 29 August 2007

Category: Uncategorised

Replies: 2

Last updated: 30 August 2007

Combination of Drugs Up Front in CML May Prolong Remission
by sandy craine (Aug 30)

hi paul,

this article is really opening a dialogue is suppose. i have heard many clinicians talk about combination therapy being the ideal and the future. even the sct that i had is a form of

by Paul Cooke (Aug 30)

I wonder about the practicalities of this approach.

We cannot get Dasatinib funded for single therapy in some parts of the uk at present - is it likely that the NHS would bear the cost of both

by sandy craine (Aug 29)

Combination of Drugs Up Front in CML May Prolong Remission
Zosia Chustecka

Information from Industry

Assess clinically focused product information on Medscape.

Click Here for
Category: Uncategorised

Replies: 2

Last updated: 30 August 2007
michelle on 26 August 2007

Category: Uncategorised

Replies: 9

Last updated: 12 September 2007

glivec is making feel so sick?
by denisetaylor (Sep 12)

I was diagnosed, november 2006, and take 400ml glivec. I eel sick, but counter this by taking cyclizine about 1/2 an hour before my breakfast, then toast and cereal, then tablet with large glass of

by fehr (Sep 2)

Hi Michelle,
For the first month or so of taking 400mg I experienced nausea. Then I split it in two halves, one half after breakfast and one after my evening meal. The nausea disappeared.

by AdamH (Sep 2)

Hi Michelle
I had bad nausea when I was on taken 800mg a day and tried various remedies. I was eventually prescribed 20mg of pantoprazole a day and it worked a treat. I have only had nausea a few

by julie hubbard (Aug 30)

Hi, i don't know if this will help but my son aged 10 has split his dose so he takes 150mg with his breakfast and 150mg after tea which seems to help. The only time he is sick at he moment is when
Category: Uncategorised

Replies: 9

Last updated: 12 September 2007
Elizabeth Rees on 25 August 2007

Category: Uncategorised

Replies: 1

Last updated: 4 September 2007

CML Seminar 24th November - Edinburgh
by Apryl (Sep 4)

Hi Elizabeth.
I would like to book two places for the seminar but when I down load the form I only get the page with the agenda and no indication of where to send it to etc. Is there another way of

by Elizabeth Rees (Aug 25)

Hi everyone

There are 40 places left for the Seminar - so hurry and book your place.

We are trying to arrange room hire for a CML Support get together the night before and as soon as I
Category: Uncategorised

Replies: 1

Last updated: 4 September 2007
Anonymous (not verified) on 21 August 2007

Category: Uncategorised

Replies: 1

Last updated: 27 August 2007

Thank You
by sandy craine (Aug 27)

hi linda,
thanks for your encouraging note and for letting us know that this site has been of help to you.

with best wishes,
sandy C ;o)

by Anonymous (Aug 21)

I would just like to say a big thank you to everyone. I do not post very often as I am a bit under confident with writing..I do read this site a lot and it is great to have my own problems answered
Category: Uncategorised

Replies: 1

Last updated: 27 August 2007
sal on 21 August 2007

Category: Uncategorised

Replies: 1

Last updated: 21 August 2007

pcr
by Elizabeth Rees (Aug 21)

Hi Sal

May be it is a bit early to expect the PCR to vanish after just three months. I would say give it another 3 and then think about options. Rob is in a good position for a transplant if

by sal (Aug 21)

Hi everyone, Rob's 1st PCR after 3 months on Dasatinib is just back at 1.5% down from 2% for his last PCR on Glivec. Given that it took him over 2 years to get to 2% on Glivec He is concerned that
Category: Uncategorised

Replies: 1

Last updated: 21 August 2007
Debbie on 21 August 2007

Category: Uncategorised

Replies: 9

Last updated: 8 October 2007

Calcium Levels
by Debbie (Oct 8)

Hi Kathy,

Thanks for answering my question. I was also diagonised in 2005. I'm still on 3 week blood tests and six monthly bone marrow biopsy. My eyes are puffy most days also. My

by Katherine (Sep 18)

Hi Debbie

I'm from Brisbane too (though moved 6 months ago, but still visit Brisbane every 3 months) diagnosed Aug 2005!! My specialist is at the Mater too. I haven't had any problems with

by Debbie (Sep 6)

hi Vicki,

Thanks for replying to me. I will wait til next weeks when i have another blood test to see how my levels are then. I don't suffer cramps but I do get aching legs and arms. I

by v hird (Sep 3)

Hi all,

I posted a similar query a while back as I found my levels had dropped significantly - I need to take double the non prescription dose to maintain okay levels. If i don't take them I
Category: Uncategorised

Replies: 9

Last updated: 8 October 2007
Elizabeth Rees on 21 August 2007

Category: Uncategorised

Replies: 4

Last updated: 1 September 2007

Les - Spleen
by leslie chambers (Sep 1)

Hi Elizabeth,

We did meet Sylvie and her husband, and they are a lovely couple, but like the rest of us,they have their problems but they are definitly in the right place to get them sorted.

by leslie chambers (Aug 25)

Hi Elizabeth,

Will do,we should arrive about 11.00,traffic permitting.I look forward to meeting Sylvie, and thank you for your good luck wishes.

Les.

by Elizabeth Rees (Aug 23)

Hi Les

When you are there on 29th look up a lady called Sylvie - she is also there on that day. You can compare notes !

Good luck for a continued string of 00000000000 !

E.

by leslie chambers (Aug 21)

Hi Elizabeth,

back down to HH Wed 29th Aug,havent had a PCR result since July 18th, and that was for the test 6 weeks earlier.that was 0.000. Had a bone marrow Biopsy & Aspirate on Aug 9th
Category: Uncategorised

Replies: 4

Last updated: 1 September 2007
fehr on 18 August 2007

Category: Uncategorised

Replies: 4

Last updated: 23 August 2007

Stem Cell Harvest
by fehr (Aug 23)

Thanks Keith. I certainly haven't dismissed it yet, but I am inclining that way. Having said that, I didn't realise that the cells could be used in procedures other than a transplant.
I have a

by keith Pratt (Aug 20)

Hi John

Elizebeth is giving you good info here. Harvested cels are not always used for a transplant, but can be used for other proceedures within your drugs regime. I had a auto graft

by fehr (Aug 19)

Hi Elizabeth,
I read that chemo to kill remaining nasties was a precursor to cell growth stimulation, but I find that CML information on the net tends to be out of date very quickly.
There must

by Elizabeth Rees (Aug 18)

Hi John

With a very good response to Glivec it is unlikely that you will need your harvested cells. Even if you lost your response to Glivec there are other drugs there. I can understand
Category: Uncategorised

Replies: 4

Last updated: 23 August 2007