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Coyney on 26 November 2006

Category: Uncategorised

Replies: 60

Last updated: 18 February 2014

Does anyone think about what caused their CML??
by Ailie Marie (Feb 18)

My partner was diagnosed with CML in May 2008 just after his 50th birthday. He has been on Gleevec ever since. He worked in the Oilfield for over 30 years on the drilling rigs - most of the time as

by MelanieC (Nov 4)

Hi I am new to this forum and i have joined on behalf of my husband , he was diagnosed in January of this year. It is making very interesting reading as to what causes CML, I cant believe that no

by greg d (Oct 13)

Johan,
Your English is fine. I'm American but my mother was born in Leiden and grew up in Noordwijk and Haarlem. I was born and raised in California, but I've visited the Dutch side of my family

by greg d (Oct 13)

I have no idea what caused my CML. I was in the U.S Army from 1980-1983 and in the U.S Marines from 1984-1987. I've read about Viet-Nam vets getting Leukemia and other illnesses from exposure to
Category: Uncategorised

Replies: 60

Last updated: 18 February 2014
Paul Cooke on 24 November 2006

Category: Uncategorised

Replies: 1

Last updated: 28 November 2006

Dasatinib (Sprycel) announcement
by Anonymous (Nov 28)

Hooray! This is good news for CML patients!
I'd be interested what the source of this information is, as I haven't been able to locate it via Google, and haven't found anything on the EMEA site yet

by Paul Cooke (Nov 24)

Some interesting news about this drug:
Bristol-Myers Squibb has been granted European Union approval for Sprycel in the treatment of adults chronic myeloid leukaemia (CML) or acute lymphoblastic
Category: Uncategorised

Replies: 1

Last updated: 28 November 2006
arrowsc on 23 November 2006

Category: Uncategorised

Replies: 1

Last updated: 5 December 2006

Early Christmas present
by sandy craine (Dec 5)

hi craig......... such good news for you to have, especially before xmas ;o) many congratulations and wishing you many more zero's in future tests.

sandy C ;o)

by arrowsc (Nov 23)

Hello all,
Just got back from my latest appointment with Dr O'Brien at Newcastle, and he gave me the one thing that I asked Santa Claus for, I have been on Glivec for around 14 months, was 100 %
Category: Uncategorised

Replies: 1

Last updated: 5 December 2006
Paul Cooke on 23 November 2006

Category: Uncategorised

Replies: 3

Last updated: 24 November 2006

Elevated mcv
by Paul Cooke (Nov 24)

Thanks for the comments, noticed I'd left a bit out on my original posting - B12, Folate, and Thyroid function all being done, as all can contribute to elevated mcv.

Interesting to see others

by Bee (Nov 23)

Hi Paul,

Yes Ted had these "obese" red cells at one point. We laughed when Barbara called them that! They checked out his B12 and folic acid levels - but all ok, so put it down to Glivec.

by Barbs (Nov 23)

Dear Paul,

if it's of any help, my red cells have been "obese" as my Dr calls them since starting Glivec, they were upto 120 at one point, I take Lederfoline (a folic acid supplement) &

by Paul Cooke (Nov 23)

I wonder if anyone's had problems with elevated mcv (mean corpuscular volume)?

This relates to the size of the red blood cells, and can be elevated for a number of reasons - just wondered if
Category: Uncategorised

Replies: 3

Last updated: 24 November 2006
sandy craine on 20 November 2006

Category: Uncategorised

Replies: 1

Last updated: 20 November 2006

GLIVEC- 5 years on
by David (Nov 20)

Joseph - thank you for this link. Like Sandy, I felt very emotional watching it and in particular watching Dr Druker to whom so many owe a huge debt of gratitude, including Val and me. Perhaps the

by sandy craine (Nov 20)

joseph posted the link to the novartis video which celebrated 5 years of glivec therapy this year. some of us were able to watch this UK version of the video at a recent function organised by
Category: Uncategorised

Replies: 1

Last updated: 20 November 2006
ypoulton on 16 November 2006

Category: Uncategorised

Replies: 5

Last updated: 24 November 2006

HH app
by Paul Cooke (Nov 24)

My wife also gets cramp intermittently, but at present doesn't take anything.

In answer to some of the problems people have experienced in getting Quinine or Magnesium Glycerophosphate

by keith Pratt (Nov 19)

Hi

Quinine in tonic water, according to my GP is better than the drug itself. Supppose one could try a little gin in it as well ?

Worth atry, I have used it in the past, but without the

by Paul Ralph (Nov 17)

On advice from my GP I drink Tonic Water, contains quinine, and it has proven to be very good at controlling the cramps.

PaulR

by Des (Nov 17)

I asked HH last week about this problem and Dr Marin suggested magnesium glycophosphate (which he prescribed) and calcium which he said I could get in a health shop. An alternative would be quinine
Category: Uncategorised

Replies: 5

Last updated: 24 November 2006
Bee on 16 November 2006

Category: Uncategorised

Replies: 4

Last updated: 1 December 2006

10 weeks - but worth the wait
by Bee (Dec 1)

Hi David

So pleased to read of your negative PCR - this must have been due to the Retro Bar as well! Hope you enjoyed your break in Spain? As we don't have to go back to the hospital till Feb

by David Morton (Nov 28)

Congratualations to you and Ted, that is great news.
Keep drinking and keep dancing.
David

by Anonymous (Nov 21)

Hi Bee
Great news with Ted's results, I'm really pleased for both of you. It was lovely to meet you and Ted in Manchester.
Take care
Angela

by sandy craine (Nov 18)

hello bee,

what fantastic news for you both. give td my very best....... i am sure you will be celebrating this wonderful news.

love,

sandy C ;o)
Category: Uncategorised

Replies: 4

Last updated: 1 December 2006
jjhollis100 on 16 November 2006

Category: Uncategorised

Replies: 2

Last updated: 17 November 2006

PCR 1st result
by Bee (Nov 17)

Sorry, I meant of course, Helana - a beautiful name.

Bee

by Bee (Nov 16)

Congratulations on the birth of Helena !

Marvellous news.

It won't be till your next PCR result that you'll see the % creeping down - some people take ages and others quite quickly. (Not

by jjhollis100 (Nov 16)

Hello All
Been a few weeks since my last post, which was regarding my 1st pcr result and stem cell banking.
Well firstly the good news we now have a baby daughter born last week 8/11/2006 7.3lbs and
Category: Uncategorised

Replies: 2

Last updated: 17 November 2006
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