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David on 7 February 2007

Category: Uncategorised

Replies: 4

Last updated: 8 February 2007

More good news
by skiinglaketahoe (Feb 8)

Delighted to hear your good news.

Hope you managed to get away on your holiday..............somewhere warm and sunny hopefully.

Susan

by Elizabeth Rees (Feb 8)

So happy for you both. Have a wonderful holiday. CML can really be put at the back of your mind now.

Roll on many more PCRU PCRs !

Much love to you both

Elizabeth xxxx

by sandy craine (Feb 8)

dear david and val, many many congratulations for such a great result. i can hear your elation ;o))) wishing you both a wonderful holiday,

love,

sandy C ;o)

by Peter Miles (Feb 7)

Dear David & Val

Wonderful news - have a great holiday!

God Bless!

Peter

Peter Miles

Southport UK
Category: Uncategorised

Replies: 4

Last updated: 8 February 2007
Claire on 7 February 2007

Category: Uncategorised

Replies: 9

Last updated: 8 February 2007

Bone Marrow Transplant
by David Morton (Feb 8)

Hi Claire. I really enjoyed meeting your Dad before Christmas and I am pleased to hear is doing well. Pass on my regards to him.

David

by Elizabeth Rees (Feb 8)

Hi Claire

So happy to hear the good news about your Dad, this will be real encouragement for those contemplating going down this route. Transplant is not an easy option and the going is tough

by Peter Miles (Feb 7)

Hi Claire

Congratulations to your Dad and family - fantastic news.

God Bless

Peter

Peter Miles

Southport UK

by Coyney (Feb 7)

Hi Claire,
Congratulations that's great news, you and your family must be really pleased. Wish him all the best from me.
Take care,

Martyn
Please sponsor me!
Category: Uncategorised

Replies: 9

Last updated: 8 February 2007
sandy craine on 6 February 2007

Category: Uncategorised

Replies: 2

Last updated: 6 February 2007

How Glivec works -animation
by wkeeping (Feb 6)

I agree, it's fascinating. However, was it just me or may be it was the accent, but I half expected to be told that the glivec was "on a mission to seek out strange new life forms and to boldly go

by Peter Miles (Feb 6)

Wow - incredible! I'm a grey boring accountant on the outside - hadn't realised I was so colourful and interesting on the inside!

Peter Miles

Southport UK

by sandy craine (Feb 6)

hi all,

take a look at the 'And then there was Glivec' box on the bottom right of this page and click on the link 'here' to see the animation of how a molecular inibitor drug like Glivec
Category: Uncategorised

Replies: 2

Last updated: 6 February 2007
Elle on 5 February 2007

Category: Uncategorised

Replies: 2

Last updated: 6 February 2007

800mgs!!!!
by sandy craine (Feb 6)

hi elaine, one way of looking at dropping white counts etc. is that it is a sign that glivec is successfully supressing ph+ white cells.

so maybe, as nancy has said, you can remain on the drug

by Nancy C. (Feb 6)

Hi Elaine,
I assume you were increased to 800mg for a reason? In the US (where I am) if you have a problem with low whites or anemia with the higher dose, they give you a cell booster (like Procrit

by Elle (Feb 5)

Hi All
I havent posted for a while but i've been checking up on you all. I've been on 800mgs Glivec now since Oct. Other than side effects and having to split my dose morning and night i've been
Category: Uncategorised

Replies: 2

Last updated: 6 February 2007
kathy on 3 February 2007

Category: Uncategorised

Replies: 1

Last updated: 3 February 2007

my so called normal life.
by zaviemiller (Feb 3)

Erin is an editor at Glamour Magazine. She wrote a column in the magazine while she was undergoing treatment. It was the inspiration for the book.
She has just started a new column, “What I’ve

by kathy (Feb 3)

Hi all,i was given a book by elizabeth called my so called normal life by erin zammett,its about a girl who was dx with cml,its a fantastic book,all my family read it which helped them understand
Category: Uncategorised

Replies: 1

Last updated: 3 February 2007
Diana Green on 31 January 2007

Category: Uncategorised

Replies: 5

Last updated: 5 February 2007

Cost of Glivec
by Bee (Feb 5)

Atta Girl !

Don't try to overload yourself with knowledge just yet. Learn what you need to know at the moment, but don't worry too much about all the ins and outs, and don't get too hooked up

by Diana Green (Feb 1)

Diana G
Hi,Paul - Thank you very much for your very informative reply to my query: I knew Glivec was big bucks, but had no idea quite HOW big.
In future, I shall treat those little ochre-coloured

by Diana Green (Feb 1)

Diana G
Hello, Bee - Thank you for taking the trouble to respond to my question about the cost of Glivec: Wow! Pricey stuff! Thanks also for your bracing words of comfort and encouragement!
I was

by Paul Cooke (Feb 1)

Hi Diana,
The cost of Glivec to the NHS in the UK depends upon whether it is supplied through a hospital pharmacy or through a local community pharmacy (chemist).

The reason being, there are
Category: Uncategorised

Replies: 5

Last updated: 5 February 2007
Bee on 30 January 2007

Category: Uncategorised

Replies: 5

Last updated: 5 February 2007

The Future....
by Bee (Feb 5)

Good for you Keith ! I think that is the way to go nowadays.

Give us a wave as you pass by on your travels!

Keep Smiling !

Bee

by Bee (Feb 5)

Hi Paul
Whilst on holiday, we used the E111 (now the EHIC) and received excellent treatment from the Spanish Health Service. The problems start when you want to actually live abroad. The DoH

by Paul Cooke (Feb 5)

I have found this link to the Dept Health web site, but it does not give any detailed information for the individual countries:
http://www.dh.gov.uk/PolicyAndGuidance/HealthAdviceForTravellers/

by Paul Cooke (Feb 5)

Hi Bee,
Your comments about health care in Europe has set me wondering. I've always understood that ay EU citizen was entitlled to the same level of health care as applied to the citizens of the
Category: Uncategorised

Replies: 5

Last updated: 5 February 2007
Vaidyan on 28 January 2007

Category: Uncategorised

Replies: 2

Last updated: 28 January 2007

Vedic healing for leukemia
by sandy craine (Jan 28)

i am sorry to say i have to ask you to not advertise your business on this site. if you would like to apply for us to put your website on our links page then you are welcome. click on our contact us

by zaviemiller (Jan 28)

Are you a CML patient and did Videc healing bring you into CCR?
I am always searching for new members for the Zero Club. I don't care how they get there.
Zavie
Zavie Miller (age 68)

Ottawa,

by Vaidyan (Jan 28)

I am happy to share with all my readers about the glorious things that happen at this corner of the world, in India.
Whether you are in the initial stages of leukemia wondering what treatment
Category: Uncategorised

Replies: 2

Last updated: 28 January 2007
sandy craine on 27 January 2007

Category: Uncategorised

Replies: 1

Last updated: 27 January 2007

Pat's fundraising plea
by skiinglaketahoe (Jan 27)

I am delighted to help, my husband and kids will all help as well.

I will email Pat
Susan

by sandy craine (Jan 27)

please make sure you take a look at the home page and read pat preston's ideas for fundraising for our group.

as some of you will know, pat has done lots of 'public awareness days' in the
Category: Uncategorised

Replies: 1

Last updated: 27 January 2007
lynn on 23 January 2007

Category: Uncategorised

Replies: 9

Last updated: 2 February 2007

work, diarrhoea and moving out of your original area
by Paul Cooke (Feb 2)

Hi Diane & Janet,
I am aware of at least one hospital which labels Glivec with this warning about avoiding caffeine - that's the hospital where my wife attends.

I do not know why that is,

by Diana Green (Jan 27)

Diana G

Hi, Janet - Thank you for your choccie observation: you have unwittingly shamed me into admitting that I haven't read the sinister small print that accompanies my boxes of Glivec. The

by Janet (Jan 27)

Hi Diana
I just saw that you are taking your glivec with some dark choccie - the instrustions on my carton say specifically not to take with caffeine. I asked why and was told that glivec is hard on

by Diana Green (Jan 26)

Diana G
Not a glamorous subject with which to make my Forum debut, but here goes! I was diagnosed with CML in October and was put on 400mg Glivec a day in December. Problems in the bowel department
Category: Uncategorised

Replies: 9

Last updated: 2 February 2007
sandy craine on 23 January 2007

Category: Uncategorised

Replies: 3

Last updated: 19 February 2007

CML survey
by mariansy (Feb 19)

Received mone to - suppose it's still something for very little - shipping cost from Amazon USA is about $8 so you still have a spare $13 - I just can't decide whether to buy a study book or

by Janet (Feb 13)

I have received mine today as well - I think that the Amazon US site has international shipping, has anyone tried it?

Janet

by skiinglaketahoe (Feb 13)

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=s...
I received my certificate today but unfortunately it can only be used on the US site. I am going to give mine to my

by sandy craine (Jan 23)

you might like to take part in the following survey and earn yourself an amazon gift token.
www.zoomerang.com/recipient/survey.zgi?p=WEB225YWZV8CSS
this link might also be of help.....
http://www.
Category: Uncategorised

Replies: 3

Last updated: 19 February 2007
Pennie on 8 October 2007

Category: Uncategorised

Replies: 4

Last updated: 9 October 2007

Windscale disaster in 1957 programme on TV tonight
by RACHEL HALSALL (Oct 9)

I didn't watch the programme but have been wondering about links between CML and AML and their causes. The reason being... a friend of mine's Dad died last year suddenly and within 4 weeks of being

by Pennie (Oct 9)

Perhaps the most interesting thing about the programme was the stuff that wasn't said. Like Sandy I was in and around the area in the 50s and 60s. My brother, who was born in March 1958, had a

by sandy craine (Oct 9)

I watched this programme and as someone who may have been affected by the fallout (as my aunt and uncle lived in Cumbria I spent a lot of time during summer holidays througout the 50's and 60's in

by cmlblogger (Oct 9)

Not knowing much about this I tuned in and it was a typically good beeb type documentary...
understanding the politics of the time around some of the decisions that where made, made for interesting
Category: Uncategorised

Replies: 4

Last updated: 9 October 2007
teresa on 23 January 2007

Category: Uncategorised

Replies: 7

Last updated: 7 February 2007

Dilemma, alphabet soup
by teresa (Feb 7)

teresa

Thanks all the info really helps to build up a picture.

teresa

by altec (Jan 31)

Hi Theresa,

Just to let you know that my daughter had a successful if difficult BMT for CML in 1997. she was 21 years old at the time. Her two brothers were not a match but I was a 5 out of 6

by sandy craine (Jan 28)

hi teresa,

it is very very rare that a family member other than a sibling is a good enough HLA match to qualify as a donor.
unrelated HLA matched donor searches may be more desirable than

by teresa (Jan 26)

Hi, thanks for that. This site is really brilliant, very user friendly and full of helpful information and support, so thanks for that as well.

My treatment is at UCH London, my consultant is
Category: Uncategorised

Replies: 7

Last updated: 7 February 2007
pyramid on 20 January 2007

Category: Uncategorised

Replies: 3

Last updated: 21 January 2007

1st PCR test results
by sandy craine (Jan 21)

just to remind everyone that if you post without logging in, your comment will not appear on this forum but will automatically be redirected to the approval queue... this acts as a spam filter....

by sandy craine (Jan 21)

you seem to be doing very well and i am sure you will continue the downward trend.
if you review your results at the 9 month mark -as peter did- and your pcr shows less movement than you woul like

by Anonymous (Jan 20)

Hi,

My original wbc was 88 and I was 100% positive, at 9 months I had reached a 2 log reduction. Sound familiar? My Doc increased my dosage to 600 mg and by the one year mark I had reached a 3

by pyramid (Jan 20)

Hello to all fellow CML persons and family

It has been a while since I last wrote in, although I read what others are saying. If I had anything of any intelligence I would write back to
Category: Uncategorised

Replies: 3

Last updated: 21 January 2007
sandy craine on 19 January 2007

Category: Uncategorised

Replies: 2

Last updated: 20 January 2007

MK-0457: a light at the end of the tunnel?
by Elizabeth Rees (Jan 20)

Sounds pretty good. Problem is with trials for this drug they were finding it difficult to find enough patients as although we hear a lot about the T315 it is not all that common and to get a

by sandy craine (Jan 19)

http://www.bloodjournal.org/cgi/content/abstract/109/2/500

Brief report
MK-0457, a novel kinase inhibitor, is active in patients with chronic myeloid leukemia or acute lymphocytic leukemia

by sandy craine (Jan 19)

Blood, 15 January 2007, Vol. 109, No. 2,
part of an article in Blood Online
CLINICAL TRIALS AND OBSERVATIONS
MK-0457: a light at the end of the tunnel?

Martinelli, G. Baccarani, M.
Category: Uncategorised

Replies: 2

Last updated: 20 January 2007
Maria L. on 19 January 2007

Category: Uncategorised

Replies: 2

Last updated: 23 January 2007

SKI 606
by Maria L. (Jan 23)

Dear Elizabeth,

Thank you very very much for your answer. I´ll check in the wb of Anderson.

Thanks again,

Best regards,

Maria L.

by Elizabeth Rees (Jan 19)

Hola Maria and welcome back to CML Support. I have copied below an article on SKI606 which appeared in the MD Anderston newsletter

"Use of SKI606 after imatinib failure [Spring 2006]

by Maria L. (Jan 19)

Hello everyone, it´s been a while since I last checked the forum. I hope that you all are fine.

I wanted to ask if, anybody knows something about a knew medicine called SKI-606, created in San
Category: Uncategorised

Replies: 2

Last updated: 23 January 2007
Maria L. on 19 January 2007

Category: Uncategorised

Replies: 1

Last updated: 19 January 2007

SKI-606
by Maria L. (Jan 19)

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

by Maria L. (Jan 19)

Hello everyone, it´s been a while since I last checked the forum. I hope that you all are fine.

I wanted to ask if, anybody knows something about a knew medicine called SKI-606, created in San
Category: Uncategorised

Replies: 1

Last updated: 19 January 2007
Pennie on 18 January 2007

Category: Uncategorised

Replies: 1

Last updated: 19 January 2007

Frustrating results
by sandy craine (Jan 19)

hi pennie, thanks for your encouragement -post below-

i know just how you must be feeling with your pcr's back and forth like this.

i also know you have had ongoing problems with side

by Pennie (Jan 18)

Yesterday I got my results from PB PCR and BMB PCR done on Jan 2nd.
PB PCR 1.315

BMB PCR 0.135

Cyto and FISH both negative
Results in July

PB PCR 0.479

BMB PCR 0.000
Category: Uncategorised

Replies: 1

Last updated: 19 January 2007
sandy craine on 18 January 2007

Category: Uncategorised

Replies: 2

Last updated: 22 January 2007

turtle,tortoise,sloth?
by walshb (Jan 22)

Hi Sandy
I can understand your frustration and disappointment at not having lower or zero counts...having gone through the miniBMT you want zero. I'm sure it will come sooner rather than later and

by Pennie (Jan 18)

Hi Sandy As my results show me to be a bottom bobbler 'par excellance' I can imagine your frustration at these bouncing levels.
I know you are in excellent hands with your treatment team, and hope

by sandy craine (Jan 18)

i am definitely a tortoise/turtle/sloth even! after seeing my bcr/abl level drop from 6% down to 0.153% before xmas i now see some bouncing levels!
a bit frustrating and a little disappointing for
Category: Uncategorised

Replies: 2

Last updated: 22 January 2007
Sian B on 17 January 2007

Category: Uncategorised

Replies: 2

Last updated: 18 January 2007

AMN and BMS....
by keith Pratt (Jan 18)

Hi Sian

Just read your post, and I have been on BMS since 8th November 2006, after 5 years on Glivec. Only adverse side effects I noticed was that it took my Hb level down, so now need an

by Elizabeth Rees (Jan 17)

Hi Sian

Sorry to hear you are not getting great results on Glivec. I am sure that you will get replies from patients taking these drugs. From what I hear, AMN [Tasigna] does not have as many

by Sian B (Jan 17)

Hello All
My results on Glivec have not been great - as such my latest advice from Hammersmith is to join one of the trials starting over the next few months (the BMS trial or an AMN107 one).
I
Category: Uncategorised

Replies: 2

Last updated: 18 January 2007