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Elle on 15 November 2006

Category: Uncategorised

Replies: 4

Last updated: 19 November 2006

Glivec!!!
by keith Pratt (Nov 19)

Hi

Thid certainly can be a problem, saggy eyes etc, but my personal brutal way is to start the day with two mugs of freshly ground black coffee. Has the effect of waking you up before you

by Elle (Nov 18)

Thanks Sandy and Des
I'll persevere a wee bit longer. I do drink lots of water. Maybe not enough.
Thankyou
Elaine

by Des (Nov 17)

I was precribed frusemide by Dr Marin last week for this problem with a potassium supplement. Mr eyes look slightly better and I lost 5 lbs over 3 days, but my mouth feels like the bottom of a

by sandy craine (Nov 15)

hi elaine, sorry about the tech. hitches with this forum. we get his a lot with spam and it is almost a full time job trying to delete it. it was when david was doing this that he hit the wrong key
Category: Uncategorised

Replies: 4

Last updated: 19 November 2006
amanda fenton on 14 November 2006

Category: Uncategorised

Replies: 8

Last updated: 8 December 2006

Moving back to uk
by Anonymous (Dec 8)

yes this is amanda fenton in canada, hi key are you in canada

by Anonymous (Dec 5)

yes this is amanda fenton in canada , do you live in canada , im in montreal and attend the jewish general how about you . mandy

by Anonymous (Dec 4)

Hi vanessa i will let you know anything i find out . hope you are living somewhere warm . We are in montreal at the moment after spending over three years in malaysia looking forward to going home

by Anonymous (Dec 3)

Hi vanessa will keep you posted thanks mandy
Category: Uncategorised

Replies: 8

Last updated: 8 December 2006
sal on 10 November 2006

Category: Uncategorised

Replies: 2

Last updated: 16 November 2006

cml and other cancers
by Bee (Nov 16)

Hey Sal,

How did Rob get on with the Dermatologist? Don't be alarmed if they do want to take the moles off anyway, it often happens. It's usually a relatively minor procedure if they do. Just

by Bee (Nov 11)

The incidence of malignant melanoma has increased many fold in the general population of the UK in the past ten years or so. Health professionals take no chances with moles that grow or change in

by sal (Nov 10)

can anyone tell me if cml patients are more prone to other cancers? Rob saw the GP about his moles yesterday, has recieved an appointment for the dermatologist in this mornings post, the appointment
Category: Uncategorised

Replies: 2

Last updated: 16 November 2006
Morfa600 on 8 November 2006

Category: Uncategorised

Replies: 22

Last updated: 31 October 2007

Stem Cell Transplant
by russ whales (Oct 31)

Hello Donna
I can only speak for my local heamatologist (Haywards Heath) and Kings College Hospital in London where I have been cared for. They are both first class - I was given Glivec as soon as

by donnaberry (Oct 31)

Dear all,

I am a 48 yr old English Mother of 4, DX may 24 this year. I am living in Florida and had been on the cml chat site over here....don't get me wrong I love American's but I was

by PAUL (Oct 23)

Thanks Russ

by russ whales (Oct 23)

Paul - Sorry but the tiredness is a very individual thing - dont expect too much until her Hgb count gets nearer to 12. I found that I was very tired for about 2 months post transplant and then it
Category: Uncategorised

Replies: 22

Last updated: 31 October 2007
sandy craine on 2 November 2006

Category: Uncategorised

Replies: 6

Last updated: 8 November 2006

Discussion Forum Topic threads
by Maria L. (Nov 8)

Dear Anna & Sandy,

Thank you so much for your messages. I indeed knew about some women how had children, after leaving Gleevec and taking Interferon during pregnancy. My doctor told me

by sandy craine (Nov 8)

hi maria and anna, there a quite a few people who have managed pregnancy with low dose peg IFN. sharon- a member of this site living in germany- recently updated her experience. her little girl is

by Anna (Nov 7)

Hi Maria

I am also 32, diagnosed in Jan 05. I have just (today!) stopped taking Glivec and as of tomorrow, I will begin on Interferon, (which is safe to take during pregnancy) in preparation

by Maria L. (Nov 6)

Hello,
I´m from spain, and I am new to this group. I was hoping to get as much information as possible regarding pregnancy and cml.
I am 32 and was diagnosed in july 2002. My PCR result is very good
Category: Uncategorised

Replies: 6

Last updated: 8 November 2006
sandy craine on 2 November 2006

Category: Uncategorised

Replies: 1

Last updated: 2 November 2006

website test
by sandy craine (Nov 2)

test 2
sandy C ;o)

by sandy craine (Nov 2)

test
Category: Uncategorised

Replies: 1

Last updated: 2 November 2006
Coyney on 1 November 2006

Category: Uncategorised

Replies: 2

Last updated: 26 November 2006

Anyone contracted their donors allergies after a SCT??
by Coyney (Nov 26)

Hi Sarah,
Thanks for your reply. It's really weird isn't it?! I posted this on the Canadian site and there were several people on there that have also experienced similar allergies.
It is very

by Sarah B (Nov 20)

Hi Martyn
My husband has had ezcema since his transplant (4 years ago) he also has developed food allergies which they think he has inherited from the donor - all very bizarre as my husband had the

by Coyney (Nov 1)

Dear all,
I had an allo stem cell transplant nearly a year ago now and went on hoiliday in September. After a day in the sun I started itching and ended up with a very nasty prickly heat rash.
My
Category: Uncategorised

Replies: 2

Last updated: 26 November 2006
skiinglaketahoe on 1 November 2006

Category: Uncategorised

Replies: 8

Last updated: 15 November 2006

BMS
by skiinglaketahoe (Nov 15)

Hi Keith
I forgot to mention that I was desparately tired for the first couple of weeks. I used to come home from work and go straight to bed. It does get better.

I hope that you do well.

by keith Pratt (Nov 15)

Good Day to everyone

Toady is the end of the first bweek on BMS at 50mg daily, so far I have nothing to report apart from the increased level of fatigue, but that could be down to having been

by skiinglaketahoe (Nov 6)

Hi David

hope you are having a great time. I am at the HH on 27th November, next time maybe. I would like to catch up with you
Susan

by skiinglaketahoe (Nov 6)

Hi Keith
It is so difficult to comment on the side effects of BMS. I am also under the HH and I think they are fed up hearing about my side effects, however they are also very understanding and
Category: Uncategorised

Replies: 8

Last updated: 15 November 2006
Vanessa Priest on 28 October 2006

Category: Uncategorised

Replies: 1

Last updated: 3 November 2006

300mg of Gleevac
by kestrel (Nov 3)

Hi Vanessa,

I have a 13 year old lad with CML. He started on 400mg Glivec after diagnosis in the Summer (2006), but, like you, his wbc etc drifted down gradually. His consultant stopped Glivec

by Vanessa Priest (Oct 28)

Hi

Is there anyone out there on 300mg of Gleevac, and if so, why not 400mg of Gleevac?
Today I have been told that I am PCR negative, which is great news, but that my wbc and platelets are
Category: Uncategorised

Replies: 1

Last updated: 3 November 2006
kristoria on 25 October 2006

Category: Uncategorised

Replies: 1

Last updated: 6 December 2006

19 Years and Counting!
by Anonymous (Dec 6)

Thank you for your inspirational story about your mother. I have recently been diagnosed with CML. I am 36 years old and recently had a child, he is only 8 months old. I often worry about not being

by kristoria (Oct 25)

I would like to bring to your attention the story of a remarkable woman who has an important message of courage and hope to share with all those who fight incurable diseases. This woman is my mother
Category: Uncategorised

Replies: 1

Last updated: 6 December 2006
samantha on 20 October 2006

Category: Uncategorised

Replies: 1

Last updated: 13 November 2006

3 years on
by Anonymous (Nov 13)

Hi Samantha, congratulations on being in remission for 2 and a half years - thats fantastic!
Like you, I am more of a regular reader and only post when its somthing I feel particularly strongly or

by samantha (Oct 20)

hello everyone

haven`t posted for a while more of a reader than a writer!
well it`s been 3years now since my diagnoses.

i have been in remmission 2 and half years.due to glivec.
Category: Uncategorised

Replies: 1

Last updated: 13 November 2006
Steven Allan on 13 October 2006

Category: Uncategorised

Replies: 1

Last updated: 6 November 2006

My PCR Result
by david.pillow (Nov 6)

Sorry to hear that your PCR is oscillating.
Don't worry too much about individual readings as there is a fair amount of error in the process, but obviously you do want a downward trend.
I noticed

by Steven Allan (Oct 13)

Well, I went to the RVI yesterday and discovered that my PCR taken six months ago was 0.8
Which is slightly up from the previous one of 0.4 (which was a lot less than the one before, which was a lot
Category: Uncategorised

Replies: 1

Last updated: 6 November 2006
Apryl on 10 October 2006

Category: Uncategorised

Replies: 1

Last updated: 6 November 2006

Travel insurance
by david.pillow (Nov 6)

Try snowcard insurance www.snowcard.co.uk It's meant to be aimed at trekkers, climber skiers etc, but there was no loading for CML

David Pillow

by Apryl (Oct 10)

I am probably not looking in the right place but there used to be a link to a travel insurance company that would give a reasonable rate for CMLrs. Cant find it on this new site. Can anyone direct
Category: Uncategorised

Replies: 1

Last updated: 6 November 2006
David on 30 December 2006

Category: Uncategorised

Replies: 3

Last updated: 1 January 2007

Travel Insurance
by Coyney (Jan 1)

Thanks again David,
I'm planning 2, week snowboard holidays to Canada and the USA so don't really want to risk going without adequate cover in case I hit a tree or something! So 17 days will be just

by David (Dec 31)

Martyn - yes, on the multi-trip annual policy, it includes ski cover for up to 17 days in the year but do check that if you contact Age Concern. Good luck and enjoy the holidays you are planning.

by Coyney (Dec 31)

Thanks for that David,
I've been away a couple of times and have just opted for standard insurance with out declaring my CML. So I'll call age concern to get an annual quote as I'm planing several

by David (Dec 30)

I had that sinking feeling when a letter arrived this morning offering to renew our annual travel insurance, subject to repeat medical screening for Val. However, I need not have got anxious because
Category: Uncategorised

Replies: 3

Last updated: 1 January 2007
claire hall on 5 October 2006

Category: Uncategorised

Replies: 3

Last updated: 25 August 2008

Pregnancy (I hope)
by Martha Stuart-Berrisford (Aug 25)

Hi, I am 30 and was diagnossed with CML in November last year. At the time we were hoping to try for another baby but my specialist said it would be too risky. After months of trying to push this

by KennyD (Mar 29)

Hi Clare
You may find this website of interest:
http://www.glamour.com/lifestyle/blogs/editor/2007/03/index.html
Good luck
Kenny

by Denise (Mar 28)

Hi Clare did anyone get back to you with any info? I am having the same problem obtaining any info on taking a brake from Gleevec in order to try for a baby. I was diagnosed 19 months ago while 12

by claire hall (Oct 5)

Hi
I am new to this support group and was hoping to gain as much information as possible regarding pregnancy and cml.
I am 25 and was diagnosed in March 2004. My PCR result is very good at the
Category: Uncategorised

Replies: 3

Last updated: 25 August 2008
Anna on 18 September 2006

Category: Uncategorised

Replies: 5

Last updated: 6 July 2007

muscle pain
by Cynthia P (Jul 6)

Dear Yvonne,

Thanks for your reply, looks like we were both diagnosed at the same time!

Try the Epsom salts, as I mentioned to Susan, Yes, seems Cramps, eye bleeds, muscle pain all

by Cynthia P (Jul 6)

thank you so much Susan for your input, it helps that one is not alone in having the same reactions. we must keep an overview I suppose on the fact that we are really doing so well, these things

by skiinglaketahoe (Jul 2)

Hi Cynthia
Just to say that I have been on glivec and BMS and had terrible pains in my feet. It started slowly on the glivec and the pain was in the soles of my feet and only really painful when I

by ypoulton (Jun 29)

My muscles ache and also am getting bone pain but as you say everything else is good so try not to moan too much. I have been on glivec since 2002 the tiredness comes and goes but I have found out
Category: Uncategorised

Replies: 5

Last updated: 6 July 2007
Penny on 29 August 2006

Category: Uncategorised

Replies: 1

Last updated: 14 June 2007

eye bleeds
by Moira (Jun 14)

Hi
My husband was diagnosed in Sept 06 and was on 400mg of Gleevec until last week when they increased it to 600mg and as of yesterday, 800mg. Today he had his first eye bleed, glad to read of

by Penny (Aug 29)

Yesterday I read comments from some people about having eye bleeds. - subconjunctival heamorrhages - I have had many of these since being diagnosed almost two years ago. I take Glivec and have had a
Category: Uncategorised

Replies: 1

Last updated: 14 June 2007
jjhollis100 on 8 August 2006

Category: Uncategorised

Replies: 8

Last updated: 20 February 2007

I'm new here....
by KennyD (Feb 20)

I agree - take it easy - that's what I've been doing. I have a few beers now and then.
All going smoothly to date - no major probs.
Thanks! Kenny

by KennyD (Feb 20)

Hey Jason - sorry for leaving it so long to reply, and thanks for responding. The reason for the Glasgow question is that, being from Glasgow (but living in NZ), I did a search on 'glasgow' using

by philcowtan (Jan 15)

Kenny,
Similar experience but years ago but when on Glivec, side effects were there but nothing that was unbearable. Main thing in my opinion is not to push things too far - I manage to some good

by philcowtan (Jan 15)

Kenny,
Similar experience but years ago but when on Glivec, side effects were there but nothing that was unbearable. Main thing in my opinion is not to push things too far - I manage to some good
Category: Uncategorised

Replies: 8

Last updated: 20 February 2007
Des on 7 August 2006

Category: Uncategorised

Replies: 1

Last updated: 5 November 2011

List of Blood Test Values
by Vangogh (Nov 5)

Hi Des
I keep a spead sheet of all my results, it is good to go back over the results from dx (2008) The values I use are as follows.
White Blood Cells 4.00 - 11.00
Platelets 150 - 450

by Des (Aug 7)

I remember on the other site that somewhere there was a list of the ranges of normal values of the Full Blood Tets that we all have taken. I found this invaluable to check my own list after a
Category: Uncategorised

Replies: 1

Last updated: 5 November 2011
judithomas on 4 August 2006

Category: Uncategorised

Replies: 1

Last updated: 12 April 2007

leukaemia in spinal fluid
by judithomas (Apr 12)

Sorry - I first have to apologise for not being a regular visitor/contributor to this website. For those that know of us, Paul now has the leukaemia yet again in the spinal fluid and is receiving

by judithomas (Aug 4)

Hi there, long time no communication, Paul has had a good period of remission. Now things have changed and he is on maintenance chemo (HHT), but cml has gone to spinal fluid. Can anyone tell me
Category: Uncategorised

Replies: 1

Last updated: 12 April 2007