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kestrel on 17 January 2007

Category: Uncategorised

Replies: 3

Last updated: 23 January 2007

Travel insurance
by Des (Jan 23)

I have given up trying for CML cover. As I am 4 years post diagnosis and "now entering a shady area" (according to one helpful telephonist), despite being PCR undetectable for 12 months, the Post

by Coyney (Jan 20)

Hi Kestrel,
I called Freedom to try and obatain annual cover and they could only offer me single trips. So I called Age Concern who offered my annual worldwide cover including skiing for £85 but as

by sandy craine (Jan 17)

hi kestral, thanks for this information... i am sure it will bring 'freedom ins' a lot of extra business, at least from our small group ;o)
these days i tend to travel without specific ins. for CML

by kestrel (Jan 17)

Hi everyone,

Not a new topic, but I guess it's the time of year when families with school-age children start thinking about holidays if we need to go in the school hols. Our lad was diagnosed
Category: Uncategorised

Replies: 3

Last updated: 23 January 2007
Basil from RSA on 12 January 2007

Category: Uncategorised

Replies: 6

Last updated: 16 January 2007

At last news from Basil from RSA
by Basil from RSA (Jan 16)

Phil I like your approach!

by philcowtan (Jan 15)

Basil,
Yes, similar to my condition - has happened now whilst flying. As you say, it doesn't hurt makes you a bit scary. It happens to a lot of us on Glivec but a small price to pay for good blood

by Basil from RSA (Jan 14)

Yes Phil & Babs the white of the eyes fill with blood due to a vein bursting. It is not a serious condition and fairly common amongst Gleevec users. It can look quite scary and comes in handy at

by philcowtan (Jan 14)

Basil,
By eye bleeds, do you mean actual blood or having red eyes?
I'm pleased that you have managed to find the solution. It is quit often the patient who has to suggest something!
All the best
Category: Uncategorised

Replies: 6

Last updated: 16 January 2007
MJS on 12 January 2007

Category: Uncategorised

Replies: 7

Last updated: 16 January 2007

New Path to Take
by AdamH (Jan 16)

Hi Matt
Sorry to hear that Glivec didn't work out and hope that things go much better on the Nilotinib.
Cheers mate
Adam H

by MJS (Jan 15)

Thanks for the comments...
I will keep you posted on when I start the new meds (Nilotinib)and how they are going for me.
Sandy - best email is mattsinclair2003@yahoo.com.au - thanks!
Take care, MJS

by Barbs (Jan 14)

Dear Matt,

my Dr here in France, thinks that Nilotinib is better than Dasatinib, there are certainly less side effects (almost none) with his patients taking it,

Good luck,

Barbara

by sandy craine (Jan 14)

hi matt, good luck with your new drug. it also targets the same protein as glivec (ABL) but is much more efficient.

i have heard extremely good things about nilotinib (tasigna) and understand
Category: Uncategorised

Replies: 7

Last updated: 16 January 2007
Janet on 10 January 2007

Category: Uncategorised

Replies: 7

Last updated: 18 January 2007

CML centres of excellence
by Janet (Jan 18)

Thanks for that Paul, I'll try that one as well ....
success I think this time, hotmail purred gently instead!
Janet

by Paul Cooke (Jan 18)

Hi Janet,
You could try my alternative e-mail address d.p.cooke@btinternet.com
Paul

by Janet (Jan 18)

Hi Paul - I have just tried to email you but for some unknown reason Hotmail decided not to send to your tiscali address. This has happened before when hotmail took a dislike to NTL for a bit! :-) I

by Janet (Jan 18)

Thanks Paul for your email address - I will email you if that is OK. I dont have any issues at all as I said in my first post, I think the care I am getting is great, but it would be good to be in
Category: Uncategorised

Replies: 7

Last updated: 18 January 2007
Elizabeth Rees on 10 January 2007

Category: Uncategorised

Replies: 4

Last updated: 24 January 2007

CML patients wanted for drug leaflet interview
by Elizabeth Rees (Jan 24)

Hi Des

I quite understand about running around London for this. They are not allowed to interview patients in a hospital setting .... If we are desperate for more patients to interview he may

by Des (Jan 23)

I have an appointment in HH on 26th Feb. If they can interview me there I don't mind, but as I have a 200+ mile trip back after HH I am not keen on running around London.

by philcowtan (Jan 14)

Elizabeth,
Would be happy to have a session if I'm around - if you do not get enough people let me know.
All the best
Phil

by AdamH (Jan 12)

Hi Elizabeth
I'm not sure if "reasonable travel expenses" covers air fares from Australia and accomodation (I'd be willing to drop down to something 4 Star if I had to)?? If so, count me in!!
Category: Uncategorised

Replies: 4

Last updated: 24 January 2007
Coyney on 8 January 2007

Category: Uncategorised

Replies: 2

Last updated: 9 January 2007

Any one running the London marathon??
by Coyney (Jan 9)

Thanks for sponsoring me Matt, It's really appreciated. I'll sponsor you when you do your climb. Rather you than me! I've got the upper body strength of pee wee herman since being blessed with CML,

by MJS (Jan 9)

G'day Martyn,
Congrats on winning a place in the London Marathon. I hear it's pretty tough to be guaranteed a spot!
I won't be running this year...I've munched far too many mince pies over Christmas

by Coyney (Jan 8)

Hi all,
Leukaemia care have offered me one of their guaranteed marathon places so I'll be running it this year for them.
Is anyone else on here running the marathon this year? Did you apply for it
Category: Uncategorised

Replies: 2

Last updated: 9 January 2007
Barbs on 6 January 2007

Category: Uncategorised

Replies: 1

Last updated: 6 January 2007

Monocytes
by sandy craine (Jan 6)

hi barbara,

i checked my white cell differential over the last 10 months or so and find that my monocytes range from a low of 8% to a high of 13%. i did a quick search on normal blood values

by Barbs (Jan 6)

Just a quick question,

has anyone else ever had increased monocytes?

Mine came back at 13% yesterday & me being me (a born worrier) has done some research on Internet & come up
Category: Uncategorised

Replies: 1

Last updated: 6 January 2007
Vanessa Priest on 5 January 2007

Category: Uncategorised

Replies: 9

Last updated: 16 February 2007

Disatinib (Sprycel) - Is anyone taking it?
by Carolyn (Feb 16)

Hi Vanessa:
I have been in a clinical trial for Disatinib since November of 2005 after becoming resistant to Gleevec. My bone-marrow biopsies have shown that I have "no dectectable PCR's" since the

by coxd (Jan 13)

Hi Vanessa,
I gave Gleevec a try for six months (400mg) before stopping. Problems I encountered were myelosuppression (WBC and ANC) and resistance (after a steady drop initially, my PCR shot up

by keith Pratt (Jan 11)

Hi Vanessa

Have been using dasatinib since 8th November 20006 after 5 years on Glivec, reasonswere that my results (pcr) had 'plateaued' and a new poison was suggested at Hammersmith, so after

by Anonymous (Jan 10)

thanks for the info. I've not had one of these tests yet so will ask my onc about it next time i see her.
Kenny
Category: Uncategorised

Replies: 9

Last updated: 16 February 2007
walshb on 5 January 2007

Category: Uncategorised

Replies: 1

Last updated: 6 January 2007

Mini BMT Trial Data
by sandy craine (Jan 6)

hi brian,

yes i did mean the study i am part of. i am pretty sure eduardo said they were ready to publish before ASH... if you search under charles craddock et al hopefully you will find it.

by walshb (Jan 5)

Hi Sandy
I noticed in your reply below that you said the trial data was published in ASH 2006. I had read all the abstracts and posts about ASH I saw and don;t remember seeing this data - was it
Category: Uncategorised

Replies: 1

Last updated: 6 January 2007
susanwilson on 4 January 2007

Category: Uncategorised

Replies: 6

Last updated: 18 January 2007

BMT
by susanwilson (Jan 18)

I would like to thank everyone who has sent me e-mails wishing me well for my stem cell transplant beginning 1st Feb! The e-mails have kept me positive and have included lots of valuable information

by Vanessa Priest (Jan 10)

Hi

I just wanted to say that I want to wish you well in your journey of transplant. I'm sure it's a scary one, but believe and you will succeed.

Take very special care.

Vanessa

by susanwilson (Jan 9)

Thank you Jesse for your kind message. I would like the opportunity to ask your husband abut his experiences with the transplant, side effects, sickness, hair loss etc. If you could e mail me that

by jessie (Jan 8)

Hi Sue
My husband received an unrelated stem cell transplant 3 years ago with chemo and total body irradiation, after a clonal evolution or mutation that blocked Glivec. It was not the best of times
Category: Uncategorised

Replies: 6

Last updated: 18 January 2007
sandy craine on 4 January 2007

Category: Uncategorised

Replies: 4

Last updated: 10 January 2007

Healthology webcast - what causes cancer?
by KennyD (Jan 10)

Had a look and there's some interesting stuff out there...

by Dennis (Jan 9)

Kenny,

if you a quick google will give you some leads on this. Try googling these:
cml benzine

cml benzine uk

by KennyD (Jan 9)

Hi Sandy - would you happen to know where I could get some specific info on the relationship between CML and benzene/benzo(a)pyrene exposure? You seem to be fairly clued-up on these matters!!

by Paul Cooke (Jan 5)

Wouldn't we all love to know the answer to this- it would go a long way to making treatment even more effective.

Interesting web cast, especially with reference to new therapies - molecularly
Category: Uncategorised

Replies: 4

Last updated: 10 January 2007
Carol on 3 January 2007

Category: Uncategorised

Replies: 1

Last updated: 3 January 2007

Hello & Happy New Year Rachel & Gary
by Barbs (Jan 3)

Dear Carol,

it's good to see you posting again, I hope that things are improving now - Elizabeth told me that you'd got her stomach flu.

I'm glad that Steve's harvest went well &

by Carol (Jan 3)

Hi Rachel & Gary,
Thanks for the post sorry to write on the forum but not sure if your computer is up & running yet let me know then I can email you personally. Sorry haven't got to reply
Category: Uncategorised

Replies: 1

Last updated: 3 January 2007
andrew on 3 January 2007

Category: Uncategorised

Replies: 2

Last updated: 4 January 2007

Recent QPCR results
by sandy craine (Jan 4)

hi andy,

your pcr results are extremely good even though the latest one is not all zero's.... as the first targetted therapy used against cancer, glivec represents the coming revolution in the

by David (Jan 3)

We are going to see Casino Royale today - so we'll see you and Moneypenny there!
Congratulations on the results and the baby on the way.
David

by andrew (Jan 3)

Hi All
It's being a while between drinks.
Just received my lastest QPCR test. My previous two tests had come back undectable....so I was going for a 'turkey'. (ten pin bowling jargon - 3 strikes
Category: Uncategorised

Replies: 2

Last updated: 4 January 2007
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