You are here

Forum

sue on 26 April 2007

Category: Uncategorised

Replies: 4

Last updated: 11 May 2007

fluid retention
by Basil from RSA (May 11)

Hello Sue,

I have been on Gleevec 400mg per day for nearly 4 years now.

As a precaution against fluid retension my Clonical Haematologist put me on 40mg per day.

I still have

by Elizabeth Rees (Apr 27)

Hope the above suggestions help Sue. Hope you have an absolutely wonderful day and that the sun shines for you all next weekend.

Much love

Elizabeth x

by hoofinruth (Apr 27)

Try Pycnogenol - you can get it from Holland & Barratt. It's quite expensive. Although my mum is the CMLer I regularly visit this site. But I did recently suffer badly with fluid retention

by David (Apr 26)

My wife has this problem. The Consultant prescribed Fusamide, which she takes occasionally when the fluid retention is bad. It is very effective but there is a need to be near a toilet for several
Category: Uncategorised

Replies: 4

Last updated: 11 May 2007
Elizabeth Rees on 25 April 2007

Category: Uncategorised

Replies: 2

Last updated: 27 April 2007

Two new articles under Essential Reading
by Elizabeth Rees (Apr 27)

Hi David

My computer language skills are lacking. Thank you for pointing this out. I have remedied the problem.

E x

by David (Apr 26)

Elizabeth - there do not seem to any links to the articles in the two boxes.
Kind regards
david

by Elizabeth Rees (Apr 25)

Just posted two articles under Essential Reading to do with resistance and IM. Very interesting read.

Elizabeth
Category: Uncategorised

Replies: 2

Last updated: 27 April 2007
sandy craine on 25 April 2007

Category: Uncategorised

Replies: 3

Last updated: 27 April 2007

Brian Goodier- new member
by clare (Apr 27)

Hi
I live in wrexham also in pentre broughton how mad is that!!

if you ever want a chat email me on my husband email address

alistair@jones1109.freeserve.co.uk
clare x

by maidmarian (Apr 26)

I'm also from n.wales I was diagnosed with CML in dec 2001, I attend WXM maelor hospital, and I am a patient of Dr. WaTSON/Dr lalli Desoysa. When I was first diagnosed I was prescribed "hydroxieau

by clare (Apr 25)

Hi brian

Nice to hear somebody else from north wales im from there myself where do you go to be treated?I go to the shooting star in wrexham maelor and see dr watson.

I havent got a clue

by sandy craine (Apr 25)

i have copied brian's post -see below- from the 'what may have caused me to develop CML' page and would like to welcome Brian to our website.
sandy
Submitted by BRIAN GOODIER on Sat, 2007-03-24 19
Category: Uncategorised

Replies: 3

Last updated: 27 April 2007
hottuna on 25 April 2007

Category: Uncategorised

Replies: 4

Last updated: 26 April 2007

chest pain
by hottuna (Apr 26)

Hi Sandy,

Thanks for the feedback.

My GP has got reflux on his list to investigate, however, it was nine hours since I had eaten anything and other than occasional nausea and diaharea, I

by hottuna (Apr 26)

Hi Paul,

Thanks for the feedback. It was nine hours since I had eaten or taken my Glivec but I'll post when we do track down the issue.
Peter H

The Man From Oz

#825 Zero Club

by sandy craine (Apr 25)

hi peter,

the pain sounds really distressing, but given you have had the tests to rule out cardiac arrest, then there must be another cause?

reflux can be a problem with glivec and i

by Paul Cooke (Apr 25)

Hi,

Did the pain come on soon after taking the Glivec?

Sometimes medication can lodge in the oesophagus if not taken with enough liquid.

Just a thought.

Paul
Category: Uncategorised

Replies: 4

Last updated: 26 April 2007
claire hall on 23 April 2007

Category: Uncategorised

Replies: 5

Last updated: 24 April 2007

Pregnancy
by Coyney (Apr 24)

Wow Claire that's great news, I'm so pleased for you and your family. It must be so encouraging for other women in you position.
All the best,

Martyn
Please sponsor me!

by Maria L. (Apr 24)

Hi all,
It´s been a while since I last checked this wonderful web, and I´m so happy to first read: PREGNANCY.

I was 28 when I was diagnosed, about 4 years ago. I have been on Glivec since then

by MJS (Apr 24)

Congrats Claire!
It's great to hear that the Gleevec "holiday" went well and you're expecting a wee baby.
I've been on Gleevec for 18 months now and my wife is pregnant - 18 weeks pregnant, the bump

by clare (Apr 23)

thats amazing

im so glad there is hope out there for you to have children ive been asking my consultants for a few months now and he says to wait 2 years!but i think i will start pestering him
Category: Uncategorised

Replies: 5

Last updated: 24 April 2007
sandy craine on 23 April 2007

Category: Uncategorised

Replies: 1

Last updated: 7 May 2007

UK Patient Seminar
by KennyD (May 7)

Sandy - are there any plans to make webcast-type vids of the key parts of the conference, so that those abroad, or otherwise unable to attend, can hear the goings-on?
Regards,

Kenny

by sandy craine (Apr 23)

This years UK National Patient Seminar will take place in Edinburgh on Sat 24th November,2007. Prof Tessa Holyoake will be organizing it.

I understand that the place and date was a compromise
Category: Uncategorised

Replies: 1

Last updated: 7 May 2007
Apryl on 23 April 2007

Category: Uncategorised

Replies: 16

Last updated: 9 May 2007

Bone marrow harvest?
by Paul Cooke (May 9)

Hi Janet,
I'm surprised at that, it's less than a year since Anne had the harvest done - this was at UHW as opposed to LLandough, but I wouldn't have thought ther'd be that much variation.

by Janet (May 4)

Hello Paul
You may be interested to know that the policy seems to have changed at the University Hospital of Wales. I went to see my consultant yesterday, and now that I am nearly at CCR, asked him

by Apryl (May 3)

Hi Paul
I think I have made my mind up to have bone marrow taken from the hip like your wife, for various reason which I wont go into now. How was your wife afterwards, did it take long to get over

by Steven D (May 2)

Hi Apryl.
Sorry for the delay in getting back to you.
I had some flu like symptoms for a few days but nothing to really worry about. I started with the injections on Xmas Eve.
Regards
Steven D
Category: Uncategorised

Replies: 16

Last updated: 9 May 2007
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