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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
Sian B on 9 December 2006

Category: Uncategorised

Replies: 6

Last updated: 31 July 2008

Miserable
by masmot (Jul 31)

hi sian,
Hwever, dont let this miserable feeling controls u. Enjoy ur life, do what u always did (when u r healthy) before and talk to others about ur feelings when u r miserable. These things might

by Anonymous (Dec 17)

Thanks for putting your messages on - it certainly makes me feel less pathetic to hear that it gets you down sometimes as well.....sometimes I think it's because it seems to take so long for

by Janet (Dec 15)

Hi Sian and Apryl
That's me too - I'm another with fits of the weepies! I hadnt put it down as a possible side effect of Glivec and thought it was just the way I was reacting to the dx [Sept], or

by Apryl (Dec 15)

Hi Sian
Could it be Glivec side affect. I get weepy for no particular reason since starting it. Doc said it was becouse I have CML and would expect me to be upset, but at the conference in October
Category: Uncategorised

Replies: 6

Last updated: 31 July 2008
walshb on 8 December 2006

Category: Uncategorised

Replies: 5

Last updated: 22 December 2006

Sprycel UK Pricing Information
by Paul Cooke (Dec 22)

Hi Brian,
Interesting scenario!!
You get sick, your wife finishes work!!
Seriously, though, my wife is the one with cml, she doesn't read this site/post to it.
I didn't finish work when she was

by sandy craine (Dec 10)

hi brian and paul, i am very suprised that BMS have used a rather unusual pricing pattern. .... 50 mg being the same as 70mg. i suppose this is because the dosing for individuals is so variable.

by walshb (Dec 8)

Hi Paul
Yes - she's a pharmacist. She doesn;t really post or read posts though although I keep her informed (I'm the one with CML). We're based in Cork, Ireland although Carolynne is from Inverness

by Janet (Dec 8)

This may not include VAT, which the hospitals have to pay. If it does not include VAT, the total cost per patient per year is of the order of £37,000.
Janet
Category: Uncategorised

Replies: 5

Last updated: 22 December 2006
Janet on 7 December 2006

Category: Uncategorised

Replies: 4

Last updated: 10 December 2006

PCR testing - again!
by Janet (Dec 10)

Thank you all for your comments - it does help knowing there are other people out there who are listening!

Janet

by sandy craine (Dec 10)

hi janet, the only cells that are affected by the ph chromosome is the white cell line

pcr are very sensitive molecular tests and replace cytogenetics/FISH etc when your disease will have

by zaviemiller (Dec 8)

Hi Janet,
My best advice to you is to make sure that you get a copy of all your test results. All of them, including those when you were first diagnosed. Once you have them in front of you, it is

by Pennie (Dec 7)

Hello Janet
There is a great deal to understand with regard to testing etc. Still after 5 years on this journey I have huge gaps in my knowledge. One tip I was given was to write down all my
Category: Uncategorised

Replies: 4

Last updated: 10 December 2006
Steven D on 7 December 2006

Category: Uncategorised

Replies: 4

Last updated: 8 December 2006

CML Seminar
by Barbs (Dec 8)

There's going to be a study on this early next year here in France, patients must have been PCR-U for 2 years before being allowed to stop their Glivec & then they'll be closely monitored.

by Bee (Dec 8)

Hi Paul,

Yes we heard about another study - ?Australia?, but I think we were surprised at the number of CMLers prepared to take the risk. Obviously side effects play a really big part for many

by Paul Cooke (Dec 8)

There has been at least one study where those who had achieved molecular remission were taken off Glivec, and were followed up closely over several months. Some were still in remission some months

by Bee (Dec 8)

Hi Steven,

Well as you will see from previous posts - we were there! There was a lot of interesting information as usual, but one thing that we were surprised at - in our "afternoon (surnames
Category: Uncategorised

Replies: 4

Last updated: 8 December 2006
Paul Cooke on 7 December 2006

Category: Uncategorised

Replies: 2

Last updated: 8 December 2006

RESULTS OF RECENT FOLLOW UP OF PATIENTS ON IMATINIB FOR 5YEARS
by Paul Cooke (Dec 8)

PCR can be done on peripheral blood from a standard blood sample or on bone marrow.
Paul

by frank thomas (Dec 7)

Quick question .Does the pcr test require bone marrow or blood sample?

regards to all .frank

by Paul Cooke (Dec 7)

This study shows results of a five year follow up of a large group of patients who received Imatinib (Glivec). The results are very encouraging:
N Engl J Med 2006; 355: 2408-2417

Resource
Category: Uncategorised

Replies: 2

Last updated: 8 December 2006
Sian B on 7 December 2006

Category: Uncategorised

Replies: 1

Last updated: 7 December 2006

Not great results?
by Elizabeth Rees (Dec 7)

Hi

I have had a constant battle with Glivec since the beginning and was never able to tolerate more than 300mg with the help of GCSF. I did eventually get down to a very low PCR 0.014 [if my

by Sian B (Dec 7)

Dear All
Am feeling a bit down about the whole CML thing again today - I am now a year down the line with regards to my treatment on Glivec, and have just found out that my PCR is still around 2%.
Category: Uncategorised

Replies: 1

Last updated: 7 December 2006
kestrel on 6 December 2006

Category: Uncategorised

Replies: 3

Last updated: 7 December 2006

Statistics, dosages and cramps!
by Suzie Q (Dec 7)

Hi, I am also on Glivec and I have quite a lot of leg and foot cramps. I was told it is a side effect of the medication. Don't hold back on asking questions, make a list for your next visit. Hope

by kestrel (Dec 7)

Thanks Pennie, the advice about drinking plenty of water is good. We have mentioned the cramps several times to the Docs but they dont seem to know why it happens and if it is the CML or the Glivec

by Pennie (Dec 6)

Hello Kestrel

It is good to hear that your 13 yr old has loads of energy on Glivec.

As far as correct dosage is concerned I am not sure of the position for children. Is the treatment

by kestrel (Dec 6)

Does anyone know how many people there are in the UK with CML? Im wondering what percentage of CMLers have BMT or stay on Glivec or need to have other treatments? Does anyone know how many children
Category: Uncategorised

Replies: 3

Last updated: 7 December 2006