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sandy craine on 11 December 2006

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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

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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

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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

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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

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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

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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
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Replies: 2

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

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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

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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
Paul Cooke on 6 December 2006

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Replies: 4

Last updated: 2 May 2007

Desatinib (Sprycel) UK availability
by Ella (May 2)

My grandad last week after being on dasatinib for 3 months, despite dasatinib pushing him back from accelerated/blast phase to chronic phase, has been denied funding by his PCT (West Kent) and been

by Janet (Dec 7)

My consultant said yesterday that he has just made a business case to the Health Authority for using dasatinib - so maybe NICE and the Welsh and Scottish equivalents have already made their

by Paul Cooke (Dec 7)

I think patients could have a battle with this drug, as we're constantly being reminded, the NHS struggles with funding for all sorts of issues, not only drugs. Ultimately I guess it will be down to

by keith Pratt (Dec 6)

Thank you Paul for yourinformation. Does this mean that we will have the same tussle as we had in 2001 with NICE over Glivec ? If this is to be then should we not as a support site be starting to
Category: Uncategorised

Replies: 4

Last updated: 2 May 2007
sandy craine on 6 December 2006

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Replies: 2

Last updated: 8 December 2006

ENACT trail UK
by skiinglaketahoe (Dec 8)

Thanks for that info Elizabeth

May be next step!

Lovely wedding photos, btw, your daughter looks beautiful and so do you!

Susan

by Elizabeth Rees (Dec 7)

Just heard.

Currently Dr Graeme Smith in Leeds is the Principal Investigator for this study and is open and recruiting. Dr Conneally in Dublin St James's is also recruiting.

Early 2007:

by sandy craine (Dec 6)

i have heard that one UK centre has opened its trial for nilotinib(tasigna)as part of the ENACT programme.

i know it is not HH as they are still waiting for clearance from their ethics
Category: Uncategorised

Replies: 2

Last updated: 8 December 2006
sandy craine on 6 December 2006

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Replies: 1

Last updated: 6 December 2006

MDACC Leukaemia Insights newsletter
by kestrel (Dec 6)

How fascinating - so much positive research going on - fills me with hope.

kestrel

by sandy craine (Dec 6)

A new issue of Leukemia Insights, the quarterly

newsletter from The University of Texas M. D.

Anderson Cancer Center, has been published.

Simply click on this link to access the
Category: Uncategorised

Replies: 1

Last updated: 6 December 2006
keith Pratt on 5 December 2006

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Replies: 2

Last updated: 7 December 2006

eye sight and Glivec
by keith Pratt (Dec 7)

Hi Dennis

Thank you very much for your info, I will pass this onto consultant eye lady when I see here next, possibly with only the one eye that works at present
Keep smiling
Keith

by Dennis (Dec 5)

Hi Keith,

I developed cataracts in both eyes about 2 years after a stem cell transplant. I've read quite a few posts from cml patients needing the same lens replacement operation as

by keith Pratt (Dec 5)

Good afternoon everyone

Interesting fact came my way today. Attended at local hospital in Henley today to have a problem I have with cateracts looked at. The dear consultant who examined my
Category: Uncategorised

Replies: 2

Last updated: 7 December 2006
Suzie Q on 4 December 2006

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Replies: 1

Last updated: 5 December 2006

Frequency of tests
by sandy craine (Dec 5)

most clinicians say between 3 and 6 months for PCR testing.

good luck,

sandy C ;o)

by Suzie Q (Dec 4)

Hi all,

Im quite nervous, next week i have my regular 2 month appt at hosp and will have my white count checked as normal, however i haven't had another BMB since my diagnosis in January. They
Category: Uncategorised

Replies: 1

Last updated: 5 December 2006
Elle on 4 December 2006

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Replies: 5

Last updated: 8 January 2007

Hemoglobin counts!!!!
by Anonymous (Jan 8)

my mom has had cml now for almost 3 years and her hemagbion has been dropping alot in like the last 5 months. Can someone please tell me if this is something serious or is the some what normal for

by David Morton (Dec 6)

Hi Elaine

I had low haemaglobin levels for a while when I was on 400mg of Glivec. I had a virus and was a bit run down at the time and it took a couple of months to recover - but it did on its

by Elle (Dec 5)

Hiya Michelle
Thanks for your reply. The symptoms you mention are similar to mine. I will let you know how i get on with latest blood tests. Should know by the end of the week.
Thanks again. Take

by michelle (Dec 5)

Hi Elaine,
I also had this problem when I was put on 600mg of glivec, I am back to 400mg at the moment. I had to have a blood tranfusion every ohter week whislt on the higher dose although my hg
Category: Uncategorised

Replies: 5

Last updated: 8 January 2007
skiinglaketahoe on 3 December 2006

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Replies: 3

Last updated: 6 December 2006

update on my BMS saga
by skiinglaketahoe (Dec 6)

Thanks Sandy for the words of the encouragement.
Realistically I realise that the AMN is unlikely to suit me if the other 2 drugs haven't. However I do have to try and then it is onto the BMT.

by sandy craine (Dec 6)

dear susan, sorry to hear of you problems with the inhibitor drugs. your doctor may well be right about you having the same problem with tasigna (amn107) as all three drugs target at least one of

by David Morton (Dec 3)

I am sorry you are having such a difficult time with BMS. If you ever want to talk things over, don't hesitate to get in touch.

Best wishes

David

by skiinglaketahoe (Dec 3)

Hi

This is an update on the topic of BMS that I posted a few weeks ago.

I have had to stop the BMS. I had an episode a couple of weeks ago where I felt very hot and unwell, no
Category: Uncategorised

Replies: 3

Last updated: 6 December 2006
ypoulton on 1 December 2006

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Replies: 4

Last updated: 5 December 2006

cardiac toxicity
by sandy craine (Dec 5)

hi yvonne,

sorry to hear of your worries about your ecg tests etc.... as far is i know the connection between glivec/sprycel and presumably tasigna and caridotoxicity is tenuous, but those

by Pennie (Dec 2)

Hi Yvonne
Sorry you are having to have all the tests, fingers crossed that things turn out fine. There are other options out there for CMLers now, so if Glivec becomes a 'no no' you do have

by Bee (Dec 2)

Hi Yvonne

Fingers crossed for you - even the slightest blip can trigger further investigations in these days of high tech gadgets. This can be quite alarming at the time, because doctors don't

by Peter Miles (Dec 1)

Hi Yvonne

Good luck with your tests and the results.

Apparently there are a small number of CML Glivec patients with possible cardiotoxicity but not necessarily because of the Glivec. To
Category: Uncategorised

Replies: 4

Last updated: 5 December 2006
geemel79 on 1 December 2006

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Replies: 4

Last updated: 31 July 2008

im so scared
by masmot (Jul 31)

Hope ur blood test will turns out ok. Be patient and stay calm.

by Anonymous (Dec 5)

my blood results have come back and once again its a low platelet count but they still cant explain why my platelets keep being so low but yet im ot in the least anemic, ive got to go for other test

by David (Dec 2)

However hard it is, and it is hard, Barbara is right. You have to wait for the results of the blood tests and that is inevitably a really worrying time. When my wife, Val, had her first blood tests

by Barbs (Dec 1)

I'm sorry that you're feeling so scared, I remember how frightened I was while I was waiting for the results of my blood tests. Please try & stay calm, you don't really know what you're up
Category: Uncategorised

Replies: 4

Last updated: 31 July 2008
michelle on 30 November 2006

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Replies: 2

Last updated: 5 December 2006

pcr test
by sandy craine (Dec 5)

it will probably be sprycel... but it is going to be quite expensive so will have to go through a NICE assessment before it gets funding through the NHS!

sandy C ;o)

by Janet (Dec 1)

I think the new drug mentioned may be Dasatinib [Sprycel]. My consultant said at my last visit that it has been licensed for general use [as opposed to clinical trial] from January.

Best of

by michelle (Nov 30)

Hi everyone, I havent posted for a while. I had the results of my pcr able test today and although I am still in cyto remmision the number has risen and the consultant scared me a bit as started
Category: Uncategorised

Replies: 2

Last updated: 5 December 2006
Coyney on 30 November 2006

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Replies: 11

Last updated: 23 December 2006

I'm 1 year post transplant today!!! :-)
by Coyney (Dec 23)

Hi Vanessa,
You can view any of the diaries by scrolling down on the CML support home page. Or just click on my name highlighted in blue below. You can contact me through email if you like it's m.

by Anonymous (Dec 6)

Hi Martyn

Congratulations that's fantastic news. BMT scares the living day lights out of me. I would love to hear your story.

Be well

Vanessa

by David Morton (Dec 6)

Well done Martyn,

You have been an inspiration to me and I have followed your progress thinking that if you do well, I will too - no pressure there then.

I remember reading about the

by jaynelister (Dec 2)

Hi Martyn,

Congratulations on your 1 year post transplant - you really have done SO well!
I will be raising a glass to you this evening.
Love Jayne xx
Category: Uncategorised

Replies: 11

Last updated: 23 December 2006
Vanessa Priest on 28 November 2006

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Replies: 2

Last updated: 28 November 2006

Low WBC, 300mg v 400mg +Neulasta
by Vanessa Priest (Nov 28)

Thank you Nancy

That's helpful.

Vanessa

by Nancy C. (Nov 28)

In the lab, 350mg was the minimum effective dose......which translates to the 400mg dose (as 350mg is not made).
You did have a very quick response to Gleevec, becoming PCRU in only a few months

by Vanessa Priest (Nov 28)

Hi

Once again I find myself with low WBC and a low neutraphil count, so I have a week off from Gleevac while my counts recover. I have an appointment on Friday with my specialist. What I'd
Category: Uncategorised

Replies: 2

Last updated: 28 November 2006