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Coyney on 23 April 2007

Category: Uncategorised

Replies: 5

Last updated: 24 April 2007

London marathon 2007. We done it!
by Coyney (Apr 24)

Thanks everyone,
I think your husband was very wise not running this year in that heat Jane, it was too much at times.
I'll definately be running next year Matt, your more than welcome to join us.

by MJS (Apr 24)

Well done Coyney!!
Great job mate...I hear the heat was pretty tough on the runners this year. Great to see you raised so much cash! If you're doing it again next year, give me a yell and I might

by Jayne (Apr 23)

Many many congratulations to you. What an achievement! We watched it on t.v. this is the first year that James, my Husband hasnt done the marathon for quite a while so he thought it quite nice

by Elizabeth Rees (Apr 23)

Very well done Martyn. Great achievement especially in the heat.

Well done !!

Elizabeth
Category: Uncategorised

Replies: 5

Last updated: 24 April 2007
clare on 22 April 2007

Category: Uncategorised

Replies: 5

Last updated: 25 April 2007

my story
by RACHEL HALSALL (Apr 25)

Hi Clare,
If you ever want a chit chat, I have an email of rachelhalsall@yahoo.co.uk or stick a post on the CML site. It's a great site, I log on much more frequently now, just to keep updated on

by clare (Apr 24)

Yeah went to the manchester one felt like alot of men were there more dont know wether it was just me,felt like the youngest aswell ,some of the information was good alot was in science with

by RACHEL HALSALL (Apr 24)

Hi Clare,
We were unable to get to the seminar last year which is a shame as it was so close to us. We are currently undertaking a large renovation on our house and have been living with my parents

by clare (Apr 23)

Thanks for getting back to me rachel
I live in the wrexham area went to manchester christies that was 2 years ago now i go every 8 weeks for blood tests to the shooting star unit in wrexham maelor
Category: Uncategorised

Replies: 5

Last updated: 25 April 2007
clare on 22 April 2007

Category: Uncategorised

Replies: 2

Last updated: 23 April 2007

hi to you all
by kathy (Apr 23)

hi clare i was diagnosed in oct 03 ,im 30 in a couple of weeks.i cope alot better now than what i did for the first two years but i still get down ,i have 1 child but would love another and thats

by zaviemiller (Apr 22)

Y A H O O O!!! Y I P P E E E !!!
Number 1057 in the Zero Club
Zavie
Welcome to the club that noone really wants to be a member of. Could you please send me your email address. I have a few

by clare (Apr 22)

just thought i would say high as this is the first time i have done anything like this my name is clare im 31 years old married and working fulltime in sportworld as a manageress

I have
Category: Uncategorised

Replies: 2

Last updated: 23 April 2007
sue on 20 April 2007

Category: Uncategorised

Replies: 1

Last updated: 21 April 2007

not suitable pcr test
by Bee (Apr 21)

Hi Sue

It's possible that the sample degraded before the test was run. It used to happen frequently when there were delays in getting the sample to the Lab. We used to wish that they'd let

by sue (Apr 20)

i had my pcr test about 4 weeks ago then had app with my consultant last, but was told that the pcr was not a good sample so they requested another pcr test. Last time I supplied them with 5 test
Category: Uncategorised

Replies: 1

Last updated: 21 April 2007
cmlblogger on 20 April 2007

Category: Uncategorised

Replies: 5

Last updated: 29 April 2015

Low WBC
by AnthonyI (Apr 29)

May I ask how things turned out for you? Did you manage to get the WBC back up?

by cmlblogger (Apr 23)

Hi Bram - i was diagnosed on the 12th December 2006, and I am 37 years old.
I am more than happy to talk but will contact you via email first :)
rob - http://cmlblog.spaces.live.com

by cmlblogger (Apr 23)

Hi Elizabeth - thanks for the response, GCSF is a new one one to me , so will do a trawl to find out some more info on it. Your post, plus a few days reflection have made me not as down as I was

by Bram (Apr 20)

Hi Rob, although I cant give any words on your low WBC, Ive read your Blog with interest as it would appear that our circumstances are very much alike.

Just wondered if I could get in touch
Category: Uncategorised

Replies: 5

Last updated: 29 April 2015
kathy on 20 April 2007

Category: Uncategorised

Replies: 3

Last updated: 22 April 2007

susan wilson
by Peter Miles (Apr 22)

Dear Kathy

I am so sorry to hear of Sue's sad passing. Please pass on my sincere condolences to all of her family.

Peter Miles

Southport UK

by Elizabeth Rees (Apr 20)

We were shocked to hear of that Sue didn't make it. Transplant is a risky business and it is so sad when someone doesn't get through. I believe Sue had a full SCT with the TBI which would not

by Jacky (Apr 20)

I am so sorry to hear of this news, and would like to express sincere condolences to all of Susan's family. Myself and my husband, Maurice Carter actually mailed Sue just prior to her BMT to give

by kathy (Apr 20)

Hi ,a few of you have been asking how susan wilson was doing with her bmt,i recieved an email off her daughter and susan sadly passed away on the 17th march,

love kathy
Category: Uncategorised

Replies: 3

Last updated: 22 April 2007
Elizabeth Rees on 12 April 2007

Category: Uncategorised

Replies: 2

Last updated: 24 April 2007

ENACT - Latest list of centres open and recruiting AMN107/Nilotinib
by pat preston (Apr 24)

Dear Skipd

I am posting this on behalf of my friend Judy Smith in Nottingham because she hasn't a computer. She was diagnosed with CML in 1998 and has been on Glivec for the last few years

by skipd (Apr 17)

I have been on this drug (Nilotinib AMN107)for 18 weeks and it seems to have less side effect than did Gleevec. I have had almost no side effects and feel great except for low blood counts. If

by Elizabeth Rees (Apr 12)

Under Newswire - the latest list of centres open and recruiting for AMN 107/Nilotinib.

Best wishes

Elizabeth
Category: Uncategorised

Replies: 2

Last updated: 24 April 2007
Elizabeth Rees on 11 April 2007

Category: Uncategorised

Replies: 5

Last updated: 18 April 2007

CML Survey - £520 donation to CML Support
by Barry Allsop (Apr 18)

Hi Elizabeth.
My vouchers arrived this week and have already been used!
Thanks
Barry Allsop

by Elizabeth Rees (Apr 18)

Hello everyone

Glad you got your vouchers Keith. I have made enquiries as to what is happening regarding the vouchers and will let you know. It has certainly been a while. I did the first

by keith Pratt (Apr 17)

Hi Elizebeth

Only too pleased to help as always. Had my vouchers today on our return from a weeks camping in Forest of Dean. As always away in the woods playing with the pixies !!!!

Keep

by mariansy (Apr 17)

No not yet but I was told 3 - 6 weeks so expecting it to take 6 weeks.
Can't remmebr when I done the survey before the Easter break from school. I'm sure they will arrive soon.
Marian
Category: Uncategorised

Replies: 5

Last updated: 18 April 2007
Sara on 11 April 2007

Category: Uncategorised

Replies: 1

Last updated: 12 April 2007

Does anyone know?
by pat preston (Apr 12)

Yes Sara there is someone out there who knows Nottingham City Hospital well! I have been treated there for my CML for the last six years.
My email address is at the end of the fund-raising article

by Sara (Apr 11)

Is Nottingham City Hospital a CML Centre of excellence? Is any one out there being treated there? My Husband Mike is and we have so far been very happy with them. I am the one trying to find out
Category: Uncategorised

Replies: 1

Last updated: 12 April 2007
Steven D on 11 April 2007

Category: Uncategorised

Replies: 2

Last updated: 12 April 2007

Another ZERO today
by skiinglaketahoe (Apr 12)

Mike and I are delighted for both of you

love

Susan

by Elizabeth Rees (Apr 11)

Well congratulations in order on that PCR !

I am to beat the 18yrs and counting record !!

A successful day !

Well done.

E x

by Steven D (Apr 11)

Hi,
Just returned from HH and found that I have another zero for the first time. 0.075 down from 0.11 looks pretty good to me. A reason to celebrate.
It was also nice to meet a lady who had had CML
Category: Uncategorised

Replies: 2

Last updated: 12 April 2007
Jane Asher on 10 April 2007

Category: Uncategorised

Replies: 7

Last updated: 12 April 2007

first timer
by David (Apr 12)

Dealing with CML and exams as well must be very hard. I hope you have had the opportunity to read the input above. I wondered whether to post because there is such a wealth of experience that people

by kestrel (Apr 11)

Hi Jane,

You sound so low - I do hope contacting this site has helped, as you're not on your own! I am a carer for a 13 year old with CML and also have children in their 20s. After diagnosis

by Paul Cooke (Apr 11)

I would like to echo some of Elizabeth's comments.

I'm the father of two young adult daughters, and although it would be very hard to come to terms with, I'd really want them to share any such

by Elizabeth Rees (Apr 11)

Hi Jane

Firstly I hope you are doing really well on Glivec, which presumably you are taking. Where abouts are you being treated ?

What a heavy load for you to carry on your own ? I
Category: Uncategorised

Replies: 7

Last updated: 12 April 2007
ivanbert on 9 April 2007

Category: Uncategorised

Replies: 5

Last updated: 8 February 2010

Best time to take the Golden Bullet
by jem777 (Feb 8)

Glass is a great material to use in the project. A much friendlier material on different aspect.

ny auto glass

by RACHEL HALSALL (Apr 10)

HI THERE IVAN,
MY HUSBAND WAS 42 LAST MONTH AND WAS DX JULY 2004. HE HAS CHANGED NOTHING IN HIS LIFESTYLE APART FROM EATING MORE FRUIT AND VEG BUT AS TO ALCOHOL, NO CHANGE. WE HAVE FOUND THAT HIS

by sandy craine (Apr 10)

hi Ivan, and welcome to our group.

when i took glivec i found that for me the best time to take it was after dinner. this solved any problem with nausea and also meant that any tiredness i

by ivanbert (Apr 10)

Hi Nancy

Thank you for your response, Im glad to hear that a veteran such as you seems to think that I'm doing OK, that means a lot to me. I'm also glad to hear you think that I will become
Category: Uncategorised

Replies: 5

Last updated: 8 February 2010
Diana Green on 7 April 2007

Category: Uncategorised

Replies: 7

Last updated: 11 April 2007

Getting to grips with this...
by Diana Green (Apr 11)

Diana G

Well, now. An abundance of food for thought!! I wonder if any research has ever been done to show that the likeliest 'victims'of CML are extremely bright, articulate and jolly nice!

by Janet (Apr 10)

Hi Diana - from yet another reluctant member of the class of autumn 2006!
You have had a few opinions here, so I thought I would join in and give my two pence worth.
I think how much you choose to

by zaviemiller (Apr 9)

Hi all,
I can certainly empathise with everyone. Just read my signature and for most people it is all gobbledy gook. I could have simply said that I was fine.
This would be similar to answering the

by Steven D (Apr 8)

Hi Diana,
Everybody has different thoughts on this, so here are mine.
When sitting in with your consultant, he or she are going to be talking about things you have never heard of, let alone even
Category: Uncategorised

Replies: 7

Last updated: 11 April 2007
Elle on 6 April 2007

Category: Uncategorised

Replies: 5

Last updated: 9 April 2007

Dasatinib!!!!!
by Elle (Apr 9)

Hiya
Thankyou all for your replies. I'm feeling a bit nervous about tomorrow as Glivec has been a big part of my life for the last 2 years and its played a big part in getting my CML under control.

by skiinglaketahoe (Apr 9)

Hi Elaine
I have been on BMS, I was on it for approx. 8 months and for me it worked extremely well, although I am not on it any more.
The side effects are variable from person to person, the most

by Freeda (Apr 8)

five year survivor
Zavi, Have have you been??? I have missed our group for a very long time and finally used Google and find this one...Lo and Behold here you are...I sent a post to the old group

by Nancy C. (Apr 7)

Hi Elle,
I am in the US. I was on 800mg Gleevec for several years with suboptimal response. I did have a major cyto response but never CCR.
I switched to 100mg Sprycel (drug name)almost 1.5 years
Category: Uncategorised

Replies: 5

Last updated: 9 April 2007
Freeda on 6 April 2007

Category: Uncategorised

Replies: 2

Last updated: 6 April 2007

New member
by Elizabeth Rees (Apr 6)

Dear Freeda

Sounds like you are a Glivec success despite the side effects. Are you in CCR ? From Zavie's post I see you made it into the Zero Club.

I hope that your side effects are

by zaviemiller (Apr 6)

Hi Freeda,
Its been a long time since you have posted anywhere. You are number # 441 in the Zero Club. I hope that you still maintaining CCR and that your side effects have diminished.
Zavie
Zavie

by Freeda (Apr 6)

Hello,everyone.
I have been a survivor since Jan 2002.I was diagnosed with Leukemia in Nov of 2001 but it wasn't known what kind untill Dec.I had only gone to the doctor an routine check for my
Category: Uncategorised

Replies: 2

Last updated: 6 April 2007
ivanbert on 6 April 2007

Category: Uncategorised

Replies: 1

Last updated: 6 April 2007

New Member
by Elizabeth Rees (Apr 6)

Hi Yvan

Sounds like you are on the right track with Glivec. With all the new drugs now available for this disease you can look forward to watching your kids grow up. The majority of CML

by ivanbert (Apr 6)

Hi Everyone
Name: Ivan
Age : 41
Resides : Perth, Western Australia
Hospital : Royal Perth Hospital
Diagnosis: CML
Time of Diagnosis : 11/12/06
Initial thought : this cant be true . Felt as
Category: Uncategorised

Replies: 1

Last updated: 6 April 2007
Sara on 2 April 2007

Category: Uncategorised

Replies: 4

Last updated: 6 April 2007

New Forum member
by zaviemiller (Apr 6)

Y A H O O O !!! Y I P P E E E !!!
Number 1050 in the Zero Club
Zavie
Please write me at zmiller@sympatico.ca
Zavie Miller (age 68)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00,

by Sara (Apr 4)

It is good to know how people are getting on who are further on in treatment as we are still very new to all this. Hope your check up goes well. We are back towards the end of April for some more

by Elizabeth Rees (Apr 4)

Hi Sara

Glad you found us. Mike seems to be doing just great and after a bad start, which many of us have had - insensitive doctors and so on, he seems to have his life back on track and

by RACHEL HALSALL (Apr 2)

I remember my husbands diagnosis like it was yesterday! He was diagnosed in August 2004. He went to the DR. about a large lump in his abdomen and had a blood test a week later. The same day as the
Category: Uncategorised

Replies: 4

Last updated: 6 April 2007
Anonymous (not verified) on 31 March 2007

Category: Uncategorised

Replies: 4

Last updated: 4 April 2007

Blood test
by Anonymous (Apr 4)

L STRAY..Hi David Thanks for replying..my mind is more at ease now thamks Linda

by Anonymous (Apr 4)

L STRAY Thanks for your reply. I do not drink at all not too worried now about things thanks again Linda

by Dude Fred in Oz (Apr 3)

MMy Kidney counts stopped me from going on the interferon trial with Gleevic and my GP is monitoring it but advised me to stay away from Alcohol not much more to worry about unless the counts drop

by david barnes (Apr 2)

Hi I have been taking 800ml for some time now with no problem to my kidney count
Category: Uncategorised

Replies: 4

Last updated: 4 April 2007
kiruba ganesh on 30 March 2007

Category: Uncategorised

Replies: 4

Last updated: 1 April 2007

About CML
by keith Pratt (Apr 1)

Howdy Kiruba

Welcome. Thank goodness we now have this website, a great source of information for all. cml in chronic phase is a bit like diabetes, keep taking the medication and it should stay

by zaviemiller (Mar 31)

Hi Kiruba,
Welcome to the club that nobody wants to be a member of.
10 years ago patients were told that they had a 2-5 year life expectancy. Since the introduction of Gleevec and several other new

by Nancy C. (Mar 31)

Hi Kiruba,
People in chronic phase do not die of CML, so that is the good news. The goal of drug treatment right now is to keep you in chronic phase, and not have the disease progress. I have been

by Paul Cooke (Mar 30)

Hi Kiruba,
At the time of diagnosis everyone is in a state of shock, that's natural having such news.

It takes a long time to come to terms with it, but you've made a good start by coming to
Category: Uncategorised

Replies: 4

Last updated: 1 April 2007
Des on 29 March 2007

Category: Uncategorised

Replies: 5

Last updated: 30 March 2007

chicken pox
by Janet (Mar 30)

sorry Paul - I had assumed you and Paul C were one and the same. Oops!! Sorry again.

Janet

by Paul Cooke (Mar 30)

Hi Des,

I've been concerned about this matter in the past for my wife who has the cml.

She like Janet was a primary school teacher, and was worried about being more susceptible to

by Janet (Mar 29)

Hi Des
I too live in South Wales and I work as a primary school teacher, so am in frequent contact with all sorts of nasty little bugs courtesy of the children I teach. I have been very concerned

by skiinglaketahoe (Mar 29)

I work in a hospital and we often have daft parents who bring their spotty, grotty kids into the eye clinic. My consultant told me that if I had had chicken pox then I should not be too concerned.
Category: Uncategorised

Replies: 5

Last updated: 30 March 2007