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sugardew on 2 January 2007

Category: Uncategorised

Replies: 4

Last updated: 9 January 2007

question about CML & glivec
by KennyD (Jan 9)

Hi,
I started on Glivec around 6 weeks ago and banked some sperm as a precautionary measure. However, I've received plenty of advice that the problems occur mainly on the female side (if the female

by eoghan (Jan 4)

Hi
To put your mind at rest I was disgnosed in Oct '03, been on 600mg more or less since that, we had a baby boy September '05 and another on the way in July this year. Except of one ear infection

by Anonymous (Jan 3)

Hi
I have been taking glivec (600 daily) since dx (Mar 04).

Here in Australia I had some sperm banked before I started any treatment (pre Mar 04). This was on the advice of my specialist. I

by Nancy C. (Jan 2)

Hi,
I will relay to you what Dr. Druker (who developed Gleevec and continues with extensive research) has written to patients. He does not feel that a male taking Gleevec is a problem as far as
Category: Uncategorised

Replies: 4

Last updated: 9 January 2007
amanda on 2 January 2007

Category: Uncategorised

Replies: 4

Last updated: 3 January 2007

Long Time !!! - Amanda
by amanda (Jan 3)

Hi
You are more than welcome for the card, sorry i haven't been in touch so much. Glad you are both doing well.
Will keep in touch more (promise) .
take care

love us

by Carol (Jan 3)

Carol
Hi Amanda,Ricky & Rhys,
Happy New Year to you three where has the time gone can't believe Rhys is going to be one on Sunday.
Fantastic news on your PCR you must be very happy about that.

by Elizabeth Rees (Jan 3)

Hi Amanda

Been meaning to send you a text ... So happy you are doing so well, can't believe Rhys is one year old ... Tamzin turned two on 29th Dec. Give me a ring when you pass the Greenford

by sandy craine (Jan 2)

hello amanda,

good to hear that you are doing so well! best wishes for the coming year.

sandy C ;o)
Category: Uncategorised

Replies: 4

Last updated: 3 January 2007
Parmjit on 31 December 2006

Category: Uncategorised

Replies: 5

Last updated: 3 January 2007

Happy New Year
by Carol (Jan 3)

Hi Maxie,
Sounds like you had a good Christmas.
A Happy & HEALTHY New Year to all you family.
Say "Hello" to your mum for us & sorry we haven't been in touch but I have been in & out of

by Elizabeth Rees (Jan 3)

Hi Maxie

Another year which leaves this transplant further away in your memory. I am waiting for my two year post transplant this coming May - been quite a ride !

Wishing you and your

by MJS (Jan 2)

G'day Maxie, Parmjit & Family,
All the best for 2007!!
Good luck with the growth checks, take care.
Cheers, MJS

by sandy craine (Jan 2)

parmjit, max and family,

wishing you the best possible for 2007 and all the years to come ;o)
sandy C ;o)
Category: Uncategorised

Replies: 5

Last updated: 3 January 2007
Barbs on 31 December 2006

Category: Uncategorised

Replies: 3

Last updated: 4 January 2007

EBMT Patients day
by Barbs (Jan 4)

Dear Elizabeth,

just to check that you got the mail OK.

The EBMT website is : www.akm.ch/ebmt2007

Barbara XXX

by Elizabeth Rees (Jan 3)

Hi Barbara

Haven't received anything about this. Please re send. Steve and I may well attend, good opportunity to get a visit in. I will send you an alternative email address to try other than

by sandy craine (Jan 2)

dear barbara, it is good to hear that your doctor planning such supportive meetings for patients. i am sure it is a much needed resource for both patients and their carers.

happy new year to

by Barbs (Dec 31)

Dear all,

first of all, a happy New Year to everyone!

Thought you might be interested to know that my Dr is organising a patients & family day here in Lyons on Saturday 24th March,
Category: Uncategorised

Replies: 3

Last updated: 4 January 2007
Bee on 31 December 2006

Category: Uncategorised

Replies: 2

Last updated: 2 January 2007

New Year
by sandy craine (Jan 2)

hello bee,

i do not think it would be easy for any pct to refuse glivec as it is now accepted as the gold standard first line therapy for ph+ cml.

good luck with curing those itchy feet

by Coyney (Jan 1)

Happy new year Bee and Ted,
Good luck with everything if you decide to move. I hope you both have a happy and healthy 2007.
Take care,

Martyn

by Bee (Dec 31)

We'd like to wish everyone a Happy and Healthy New Year!
At this time of year, Ted and I begin to get itchy feet - we used to move house every few years due to Ted's job, but

have not done so
Category: Uncategorised

Replies: 2

Last updated: 2 January 2007
kathy on 26 December 2006

Category: Uncategorised

Replies: 8

Last updated: 1 January 2007

600mg
by sandy craine (Jan 1)

hi dennis,

your post was posted as annonymous rather than as your registered user name....... if you do this it will be put automatically into the queue for approval (due to problems with spam

by kathy (Jan 1)

Thanks pat,thats whats happening my results are still low but he said he would like me to be alittle lower,im treated at manchester ,im going to ask for the mutation test next time i go,thanks pat i

by pat preston (Jan 1)

Kathy, I do wonder where you are being treated? I was diagnosed in 1999 in Nottingham and put on 400 mg Glivec in 2001. In November 2005 although my PCR's were really low - sometimes 0.000 - there

by David (Dec 31)

Kathy - could I suggest that next time you go to the hospital you talk all this through with your Doctor and ask for a copy of the test results. Then, if you need anything else after talking to your
Category: Uncategorised

Replies: 8

Last updated: 1 January 2007
kestrel on 23 December 2006

Category: Uncategorised

Replies: 2

Last updated: 23 December 2006

25% reduction Xmas present
by sandy craine (Dec 23)

hi kestral......... glad to hear about the 25% drop in ph+ cells. this is good news as it was within the first 3/4 months after diagnosis so it is very likely that he will respond well to glivec as

by Anonymous (Dec 23)

Any idea why Anjana has stopped posting ?

Happy Christmas Everyone

by kestrel (Dec 23)

Hi everyone,

Lots of great stuff about good test results being shared - so heartening to read! Our 13 yr old had bone marrow aspirate (at about 4 months after diagnosis) and we were just told
Category: Uncategorised

Replies: 2

Last updated: 23 December 2006
Steven D on 23 December 2006

Category: Uncategorised

Replies: 4

Last updated: 27 December 2006

Cell Harvest
by Anonymous (Dec 27)

Dear Steve
Hope all goes well with the harvest next week and send our best wishes to Carol. She's had a rough time of late.
Best wishes as always
Parmjit

P.S I will try and get Max to update

by Barbs (Dec 23)

Dear Steve,

just to wish you all the best for your cell harvest, sorry I've not been in touch recently, but have been having a few problems here recently with Thomas & then I got

by David (Dec 23)

I am sure it will go well but it is very boring and uncomfortable because you can't move very much while you are connected to the machine. Val found a CD player, with me on hand to change the CDs,

by sandy craine (Dec 23)

good luck with your harvest steven, hope you are not too bored! best wishes to carol for a complete recovery.
sandy C ;o)
Category: Uncategorised

Replies: 4

Last updated: 27 December 2006
zaviemiller on 23 December 2006

Category: Uncategorised

Replies: 1

Last updated: 29 December 2006

# 1031
by MJS (Dec 29)

I thought my PCR needs to be 0% before I am enrolled in this club??
My BMB and FISH were 0% but my PCR is very stubborn and currently at 2.8%...
MJS

by zaviemiller (Dec 23)

Y A H O O O !!! Y I P P E E E !!!

Number 1031 in the Zero Club

Zavie
From Matt Sinclair's Blog
After a brief chat with the Professor, she explained my latest results to me...the 9
Category: Uncategorised

Replies: 1

Last updated: 29 December 2006
MJS on 22 December 2006

Category: Uncategorised

Replies: 4

Last updated: 24 December 2006

Next Step?
by keith Pratt (Dec 24)

Hi All

Have heard om the 'grapevine' that HH has signed up as a trial centre. This very very recent so I am told, so if you want it exert the usual pressure. Not expected to be pushing for

by MJS (Dec 24)

Thanks for the advice.
I am currently on 600mg and have been for about 9 months. Maybe 800mg is an option?
Enough about PCR's...hope everyone has a great Xmas tomorrow. Eat, drink and be Merry!!

by sandy craine (Dec 23)

hi matt,

your doctor is right about your pcr results being the same.... when the % ratio is figured out, the size of the sample AND the number of ABL (housekeeping) genes in the sample are

by skiinglaketahoe (Dec 23)

Hi Matt
Very hard; Does sound as though you have reached an impasse.
Dasatinib is prescribable, at least here in England. However, as it is more expensive than glivec and it is not yet NICE approved
Category: Uncategorised

Replies: 4

Last updated: 24 December 2006
Paul Cooke on 22 December 2006

Category: Uncategorised

Replies: 1

Last updated: 22 December 2006

PCR / FISH / CYTOGENETIC TESTING
by sandy craine (Dec 22)

hi paul,

i understand that pcr is expressed as a ratio..... i am always given a percentage figure.

in my own case my last pcr result from a blood sample (not bma/bmb) shows the bcr/abl

by Paul Cooke (Dec 22)

Reading various peoples postings relating to their results, I am getting a little confused!
I see people quoting their pcr results as a percentage figure - i thought that % results related to
Category: Uncategorised

Replies: 1

Last updated: 22 December 2006
sandy craine on 20 December 2006

Category: Uncategorised

Replies: 1

Last updated: 20 December 2006

Aurora Kinase Inhibitor Shows Activity in Chronic Myelogenous Leukemia
by sandy craine (Dec 20)

ARIAD Presents Preclinical Efficacy Data on AP24534, a Novel Oral Kinase Inhibitor for Drug-Resistant CML

ORLANDO, Fla. and CAMBRIDGE, Mass.--(BUSINESS WIRE)--Dec. 10, 2006--ARIAD

by sandy craine (Dec 20)

Aurora Kinase Inhibitor Shows Activity in Chronic Myelogenous Leukemia
Allison Gandey
December 12, 2006 (Orlando) — A new aurora kinase inhibitor is the first to show clinical activity in a
Category: Uncategorised

Replies: 1

Last updated: 20 December 2006
Lorraine Rollo on 19 December 2006

Category: Uncategorised

Replies: 3

Last updated: 22 December 2006

early menopause
by Paul Cooke (Dec 22)

Hi,
My wife has cml,dx Sept 2003, at age 54.

She had gone through the menopause some years previous - relatively early, late forties I suppose.

When she was having initial investigations

by Lorraine Rollo (Dec 22)

Thanks for your comments. I was on the pill for a number of years but came off it earlier this year. It's since then that my periods seem to have stopped - although to be honest they weren't exactly

by Suzie Q (Dec 20)

Hi Lorraine, when i was diagnosed jan/06 and put on Glivec my husband and i had been trying to get pregnant. All i can tell you is that they immidiately put me onto the pill. That has basically

by Lorraine Rollo (Dec 19)

Hi everyone - glad to hear you are all well. It's been some time since I last posted but I do like to keep an eye on what's going on. I have been on Glivec since Sept 2000 and still in CCR. On the
Category: Uncategorised

Replies: 3

Last updated: 22 December 2006
sandy craine on 19 December 2006

Category: Uncategorised

Replies: 18

Last updated: 26 December 2006

good news at last!
by walshb (Dec 26)

Congratulations Sandy on your latest result. Hope it made for a nice Christmas and all the best for good results in 2007.
Brian

by Barbs (Dec 23)

Dear Sandy!

what great news, slow & steady wins the race! I kept checking your site for news and was wondering what was going on!

Just before Christams too, what a good excuse for a

by zaviemiller (Dec 23)

Y A H O O O !!! Y I P P E E E !!!

Number 83 in the Zero Club

Zavie
Congratulations on your latest results. It's special gift to you for this holiday season.
You know my rule with

by Anonymous (Dec 22)

Sandy
What fantastic news! Have a great Christmas
Best wishes
Parmjit and family
Category: Uncategorised

Replies: 18

Last updated: 26 December 2006
aporter on 18 December 2006

Category: Uncategorised

Replies: 4

Last updated: 22 December 2006

PCR Results
by sandy craine (Dec 22)

happy birthday anita....... and congratulations on you pcr result. have a great xmas,

sandy C ;o)

by MJS (Dec 21)

Hi Anita,
Great news about your PCR results. Not a bad Christmas present...
I also started quite high at 14%, then it slowly came down to a decent level.
Have a great Xmas!
Cheers, MJS
www.

by aporter (Dec 19)

Thanks for your supportive reply. It's nice to celebrate with someone as far a field as the USA. Take care.

Luv Anita.

by Nancy C. (Dec 19)

Hi Anita,

You are making great progress getting rid of the leukemia cells.....so have a fun 39th birthday and you will be celebrating big time for your 40th!

Nancy C.

Eugene,
Category: Uncategorised

Replies: 4

Last updated: 22 December 2006
ruth on 17 December 2006

Category: Uncategorised

Replies: 2

Last updated: 18 December 2006

Bruising
by sal (Dec 18)

Rob had a bruise similar to you describe just prior to diagnosis 18 months ago it covered the whole of the back of his right thigh and was dark purple. It had a hard lump about the size of a walnut

by remw (Dec 18)

Hi Ruth,

The sooner you see anyone about something like that the better.

Start with your GP ASAP and try your haematologist as well.

Theres nothing like the "belt & braces"

by ruth (Dec 17)

Hi Everyone,
I have had leukaemia for 2 1/2 year and been on glivec for the same amount of time.My pcr is 0.003 and the last time i had a full blood count was about 7 weeks ago and it was normal.
On
Category: Uncategorised

Replies: 2

Last updated: 18 December 2006
Apryl on 15 December 2006

Category: Uncategorised

Replies: 10

Last updated: 22 January 2007

PCR result & How did you get CML
by chris47 (Jan 22)

please could you tell me why my story has left you speechless.do you know of some other incedents like this.yours chris.

by sandy craine (Jan 3)

your story is the first that i have ever read that explains with absolute certainty why you developed CML..... you are 'lucky' that your cancer developed relatively slowly to allow access to glivec

by Steven Allan (Dec 21)

Chris47, your story has left me speechless.

by chris47 (Dec 21)

I know how I got cml throught the army in the 1960s, We where chosen while on exersize in germany when in the middle of the night a land rover appeared the two men asked to see the o.c.to see if
Category: Uncategorised

Replies: 10

Last updated: 22 January 2007
Suzie Q on 15 December 2006

Category: Uncategorised

Replies: 6

Last updated: 15 December 2006

geting to know....
by Suzie Q (Dec 15)

Hi Elizabeth,

I didnt have a bone marrow transplant, just a test. I mustve used the wrong abbrieviation, sorry about that however im thrilled to hear your pcr results. I will be sure to read

by arrowsc (Dec 15)

How yer doing mate, hope your recent results are looking good
Craig A

by Steven Allan (Dec 15)

http://www.leukaemiacare.org.uk/volunteersNetworkInfo.asp?RegionID=3
PS Hi Craig! :-)

by arrowsc (Dec 15)

Hi Suzie,
I am also in the north east ( east durham ) diagnosed june 05 at 37 years old. Have been on Glivec for around 15 months and am doing pretty good with a PCR of 0.05 at the last test, my e-
Category: Uncategorised

Replies: 6

Last updated: 15 December 2006
Jenny Freeman on 11 December 2006

Category: Uncategorised

Replies: 15

Last updated: 17 February 2007

Travel Insurance, a moan!
by nullum (Feb 17)

Nullum
Hello Des

Thank you for your tip. I contacted JD Consultants from Australia. They replied to me, which was nice of them, but were unable to help. Travel insurance seems to be available

by Steven D (Feb 10)

I have just opened a bank account with Nat West. This is called the ADVANTAGE GOLD current account. It costs £12 a month but you get- Mobile phone insurance, Purchase Protection, Extended Warranty

by nullum (Feb 10)

Nullum
I am travelling to UK and South America this year (I hope). I mentioned it to at least three doctors and all supported the idea, so it was a shock to me to have my 'pre-existing condition'

by Anonymous (Dec 31)

i went to spain recently for a week aND USED THE POST OFFICE TRY THEM
Category: Uncategorised

Replies: 15

Last updated: 17 February 2007
sandy craine on 11 December 2006

Category: Uncategorised

Replies: 2

Last updated: 12 December 2006

Phil and Babs Cowtan's Summary of 2006 Patient Seminar
by sandy craine (Dec 12)

hi pennie, please tell bill he did a great job as official photogragher ;o) will be putting his photo's online on thursday.

hope your house move is not too stressful.

love,

sandy C

by Pennie (Dec 12)

Thank you so much for doing this Phil and Babs, it is a great summary of what was an excellent weekend. The Friday evening get-together was, as you say a really good idea. Bill and I have been so

by sandy craine (Dec 11)

elizabeth has uploaded phil and babs cowtan's excellent summary of this years patient seminar. see newswire on right.(thanks so much to both of you for helping with this).

we will also be
Category: Uncategorised

Replies: 2

Last updated: 12 December 2006