You are here

Forum

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
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