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Steven D on 11 July 2008

Category: Uncategorised

Replies: 2

Last updated: 12 July 2008

NEWSFLASH. CML Patient Seminar November 2008
by Pennie (Jul 12)

Thanks for the info Steve, Bill and I hope to see everyone there.
Hope you and Carol are Ok.
ATB

Pennie

by Barbs (Jul 12)

Hello Steven,

yes Elizabeth told me about this, I hope to come this year, London's much easier for me to get to than Scotland & it will be nice to see everyone again.

Elizabeth also

by Steven D (Jul 11)

Hi All,
I thought you all might like to know that I have just heard that the CML patient seminar will be held on 15th November 2008 at the Royal College of Physicians in London. We wait for further
Category: Uncategorised

Replies: 2

Last updated: 12 July 2008
sandy craine on 8 July 2008

Category: Uncategorised

Replies: 2

Last updated: 11 July 2008

'Yours' magazine for older women - a chance to share your story of Glivec and CML
by sandy craine (Jul 11)

Thanks to those who responded. Your details are with the magazine and they will be in contact directly with you.
Sorry Keith,

sometimes it just does not pay to be a man does it? ;o))))

by keith Pratt (Jul 10)

Hi Sandie

Bit sexist or what ?

Keith

by sandy craine (Jul 8)

We have received an enquiry from 'Yours' magazine who are writing a feature on targeted therapies which will include Glivec.

They were wondering if anyone would like to be interviewed for the
Category: Uncategorised

Replies: 2

Last updated: 11 July 2008
sharon morris on 7 July 2008

Category: Uncategorised

Replies: 9

Last updated: 29 August 2008

Baby girl
by sandy craine (Aug 29)

Hi Sarahjane,

Novartis are in the process of setting up a pregnancy registry for maternal Glivec birth outcomes. They hope to have this set up by the end of the year. It is great that you had

by sarahjane (Aug 28)

I was also lucky to have a baby whilst just being diagnosed with CML in the November 2004, then I was pregnant by the June in 2005. It was a very tense time as I was told that Mathew would be one of

by sandy craine (Aug 1)

Dear Jan,

I am sure there are members of this forum that will be more than pleased to read your news.

There has been news of 4 baby girls in the last few months or so (see KennyD's post

by sharon morris (Jul 31)

Hi Jan,
Good to hear from you again!
Many congratulations on the birth of your second daughter. Delighted for you and your family! A lovely name! My oldest daughter is called Kiera Marie and is now
Category: Uncategorised

Replies: 9

Last updated: 29 August 2008
JJ on 7 July 2008

Category: Uncategorised

Replies: 1

Last updated: 7 July 2008

Shingles
by sandy craine (Jul 7)

Hello Janice....... so sorry you are suffering with this but it is very common post bmt/sct. I had shingles in the same place... around 1.5 years after my sct. I was having homeopathic therapy at

by JJ (Jul 7)

I have not posted for a very long time. I had a bone marrow transplant 4.5 years ago and have been attending clinic on a 3 monthly basis. Earlier this year my consultant took me off valaciclovir and
Category: Uncategorised

Replies: 1

Last updated: 7 July 2008
SwanValleySue on 7 July 2008

Category: Uncategorised

Replies: 2

Last updated: 10 July 2008

New Website for Young Adults Leukaemia Patients and Family
by SwanValleySue (Jul 10)

Hello Everyone,
This is a great website that you can have heaps of information

Questions were asked on CML and Exercise on the CML talkbloodcancer chat website.
I just wanted to let you know

by sandy craine (Jul 8)

Hi Sue,

thanks for the link... I have added it to our links page under patient groups.
best wishes,
Sandy

by SwanValleySue (Jul 7)

Just to advise that the Australia TalkBloodChat Website

has launched a new website for young adults.
Really interactive / great sites and lots of hints.
Hints and information not just for
Category: Uncategorised

Replies: 2

Last updated: 10 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 6

Last updated: 4 July 2008

New baby! and broken bones...
by sandy craine (Jul 4)

Novartis are currently compiling data on Glivec and pregnancy. As soon as I hear from them I will post here.

the data is only on women and pregnancy as the issues do not seem to be as relevant

by SwanValleySue (Jul 3)

Kenny
Yes that would be very useful - any info - I am sure as time goes on -there maybe other people who would benefit from your information
Sue

by KennyD (Jul 2)

also, when I tried to find info on Glivec pregnancies some 18mths ago, info was really sketchy as I remember. I managed to get some info from Novartis in the end. Since then, I've heard of several

by KennyD (Jul 2)

Yeah, my onc has talked about doing some kind of study, based around fertility analysis. Since I started the drug, the sperm count has dropped dramatically . I think 2 kids is probably enough
Category: Uncategorised

Replies: 6

Last updated: 4 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 2

Last updated: 8 July 2008

TWISTER trial
by sandy craine (Jul 8)

I have posted a new article under Newswire which covers this subject.

Thanks to Giora from the Israeli group for sending it to me.
best wishes,

Sandy

by sandy craine (Jul 3)

Hi Kenny,

I have heard of a few studies in Europe where patients in MMR for over 2 years are stopping Glivec. Those that stay in remission (without any therapy) seem to be the patients that

by KennyD (Jul 2)

Hi - Does anyone know anything about the 'TWISTER' trial, being carried out in Australia? It's looking at what happens when people in MMR come off Glivec completely. I can't find much about it on
Category: Uncategorised

Replies: 2

Last updated: 8 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 9

Last updated: 20 August 2008

Another PCR test results posting!
by KennyD (Aug 20)

Thanks for the comment Andy - yeah, agreed. We'll see what the next test brings in a month's time or so!

Kenny

by Andy Parkin (Aug 16)

Kenny, Congrats on latest PCR result. As you say the .13% was just a blip in the downward trend. The earlier posts on your original e mail were spot on in terms of the error factor in PCR results

by KennyD (Aug 11)

Hi All,
By means of a quick update on my situation for those who are interested...read on...
As per the first posting on this thread, my 3-monthly PCR test results were;
15.36% 1.02% 0.382% 0.204% 0

by zaviemiller (Jul 6)

First, a big
Y A H O O O !!! Y I P P E E E !!!

Number 1205 in the Zero Club

Zavie
The margin of error on PCR tests is 1/2 log. Your results are well within this limit and are very
Category: Uncategorised

Replies: 9

Last updated: 20 August 2008
sue on 1 July 2008

Category: Uncategorised

Replies: 6

Last updated: 7 July 2008

platelets do they work ?
by sandy craine (Jul 7)

I spoke with my consultant about this has is not aware that this is a problem with Glivec, although he says it is a problem with cml (platelet function that is). He suggested that a platelet

by SwanValleySue (Jul 5)

Thanks for authorisation
Will paraphrase and see if we can get heaps of further responses.
I posted One for the Gals - and the responses came out fo the woodwork - so it is an issue for all of us.

by sue (Jul 3)

susan dickerson In response to posting this on your site the sooner we get some answers to this big problem the better and if all the ladies having similar problems can pursue this with their

by sue (Jul 3)

susan dickerson In response to posting this on your site the sooner we get some answers to this big problem the better and if all the ladies having similar problems can pursue this with their
Category: Uncategorised

Replies: 6

Last updated: 7 July 2008
Michael.. on 18 June 2008

Category: Uncategorised

Replies: 12

Last updated: 30 June 2008

Am I normal!!!
by Michael.. (Jun 30)

Thanks once again for all the info, which looks like it could be helping others as well. So couldn't be more pleased.
For me, ive been feeling pretty well for the last week or so, been more active

by mariansy (Jun 22)

vickie
I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.
Timings wise - my last BMA was done at 11am - so avoiding the full fare

by mariansy (Jun 22)

vickie
I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.
Timings wise - my last BMA was done at 11am - so avoiding the full fare

by vickiep (Jun 21)

Hi Sandy,

Thanks for bothering as much as you have with your response to me!

You are absolutely right that Eastbourne DGH does not have a CML unit, but when I see them, they do a blood
Category: Uncategorised

Replies: 12

Last updated: 30 June 2008
Carol on 17 June 2008

Category: Uncategorised

Replies: 1

Last updated: 6 August 2008

4th Patient Support Group Meeting At Hammersmith Saturday 9th August 2008.
by Steven D (Aug 6)

Thank you Carol for moving this post up, as I had forgotten that the group meeting was this weekend.
Hope to see everyone there.
Steven D

by Carol (Jun 17)

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road

London W12 0HS
SATURDAY 9th August 2008

10.00AM For 10.30AM – 1.00PM
This will be the fourth meeting of
Category: Uncategorised

Replies: 1

Last updated: 6 August 2008
Sylvia Smith on 14 June 2008

Category: Uncategorised

Replies: 6

Last updated: 23 June 2008

Feverfew & CML
by sandy craine (Jun 23)

There will be a trial of this drug in the UK in the coming months. I am trying to find out more and will let you know when I have details.

Sandy

by Sylvia Smith (Jun 22)

Yes, several CML victims I read are combining the two with no ill effects. Some are combining Feverfew with Curcumin with good results......I am taking Feverfew daily along with Nilotinib/Tasigna

by Sylvia Smith (Jun 22)

Hello Sue
Just tap into Google Feverfew and cancer or Feverfew and CML and take it from there. Lots of research being done in America and Canada which sounds promising. Keep well

Sylvia (

by valandi (Jun 17)

Have a look at http://www.cmlsupport.org.uk/?q=node/573
for some more information
Category: Uncategorised

Replies: 6

Last updated: 23 June 2008
garym161 on 14 June 2008

Category: Uncategorised

Replies: 7

Last updated: 31 July 2008

Bone Marrow Transplants?
by masmot (Jul 31)

if got related donor better

by Bill Yellowley (Jun 21)

kestrel

Thanks very much for taking the time to reply. Yes I have read some of Rio's entries on here with great interest. I hope everything went well yesterday. I admire his bravery, Being so

by kestrel (Jun 20)

Hi Janet

Yes - please!!!

kestrel

by Janet (Jun 19)

Hi Kestrel
Just to wish Rio all the very best for his BMT, and to you also as you will be going through the mill as well!
Take care and think of how wonderful it will be when he is told he is PCRU.
Category: Uncategorised

Replies: 7

Last updated: 31 July 2008
Patricia Ormrod on 13 June 2008

Category: Uncategorised

Replies: 4

Last updated: 16 June 2008

Elevated PCR result
by SwanValleySue (Jun 16)

I had a Haem. appointment today
Monday 16th June 2008 - Blood Results came back.
Result is 0.001%
So how do you work out what that is in terms of responses to of Log.
I am still not with it in

by sandy craine (Jun 15)

Hi Trish,

this pcr result would not be considered 'elevated'... it is, as others have said, the same as the previous one. Therefore be assured that Jack is responding very well to the drug and

by zaviemiller (Jun 14)

Hi Trish,
Nothing to be concerned about. The PCR test result will differ by a half a log if you retested using the same sample. So the 0.0008 result is the same as the 0.0005 result.
You need 3

by Annie Kennedy (Jun 13)

I can understand why a result that seems to be in the wrong direction would cause you concern - I hope others will chime in here too but I wanted to reply quickly to hopefully alleviate your worries
Category: Uncategorised

Replies: 4

Last updated: 16 June 2008
Pennie on 11 June 2008

Category: Uncategorised

Replies: 1

Last updated: 11 June 2008

PCR disappointing on Tasigna
by jjhollis100 (Jun 11)

I'd really like to be at that low figure mine is around 2% after changing from Imatinib to Dasatinib that's after 2 years in total on these drugs, bear in mind pcr figures can jump around a little

by Pennie (Jun 11)

Hi All
Well the results of my last BCR/ABL PCR are a disappointment. The first one after starting Tasigna in Jan took my level down to 0.087, next one was 0.027 test 3 weeks ago result is 0.431.
Category: Uncategorised

Replies: 1

Last updated: 11 June 2008
sandy craine on 9 June 2008

Category: Uncategorised

Replies: 1

Last updated: 9 June 2008

SMC approves nilotinib for chronic stage CML
by Janet (Jun 9)

Hi Sandy
I think that is brilliant news, an excellent beginning! Now that the Scottish Medicines group has approved Nilotinib, then hopefully NICE and the Medicines Strategy group in Wales will

by sandy craine (Jun 9)

The Scottish Medicines Consortium (SMC) approves Tasigna® (nilotinib) for use in patients with Philadelphia chromosome positive (Ph+) chronic myeloid leukaemia (CML) who are intolerant of or
Category: Uncategorised

Replies: 1

Last updated: 9 June 2008
cmlblogger on 9 June 2008

Category: Uncategorised

Replies: 1

Last updated: 9 June 2008

broken bones - anythign to consider
by Diana Green (Jun 9)

Diana G
Rob's posting has reminded me to warn other CML people about what was a very unpleasant consequence of taking the antibiotic CoAmoxiclav while on 400mg of Glivec per day.
I had the nasty

by cmlblogger (Jun 9)

So i managed to break my nose last week, by not quite catching a softball, ouch (these by the way are not soft!, actually broke my oakley sunglasses in 2!)
I lost what looked like a lot of blood and
Category: Uncategorised

Replies: 1

Last updated: 9 June 2008
Apryl on 7 June 2008

Category: Uncategorised

Replies: 1

Last updated: 7 June 2008

Happy Birthday Zavie
by zaviemiller (Jun 7)

Thank you,
The blessed event happened June 4, 1938 in Montreal Canada
I am still shaking my head.
Zavie
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

by Apryl (Jun 7)

Zavie, I've just noticed that some time over the past two weeks you have changed your personal details from 69yrs to 70yrs of age. Hope you had a great birthday. Your a real inspiration, if you can
Category: Uncategorised

Replies: 1

Last updated: 7 June 2008
MarkandCharlotte on 6 June 2008

Category: Uncategorised

Replies: 2

Last updated: 6 June 2008

Newly diagnosed awaiting BMT
by sandy craine (Jun 6)

Hi Mark,I understand your concern and worry. Given that she has responded so well to Glivec,I would suggest a second opinion and agree with Zavie that Dr. Eduardo Olavarria at Hammersmith Hospital

by zaviemiller (Jun 6)

First
Y A H O O O !!! Y I P P E E !!!

Number 1192 in the Zero Club

Zavie
My best advice for your friend is to get to a CML specialist as quickly as possible. My choice would be Dr.

by MarkandCharlotte (Jun 6)

My 27yo girlfriend of 12 years was diagnosed with leukaemia in february of this year. Initially she was told she had AML, however after futher tests this was changed to AML philadelphia +.
Category: Uncategorised

Replies: 2

Last updated: 6 June 2008
sandy craine on 5 June 2008

Category: Uncategorised

Replies: 3

Last updated: 6 June 2008

donating blood and signing up to marrow registry
by julie hubbard (Jun 6)

the national blood service will only take people up to 45. Anthony Nolan is 40. I only know because my friend is 43 and she was turned down by anthony nolan and just mentioned it in passing when

by Mo (Jun 6)

My sons have been blood doners for a long time, but have also signed to go on the bone marrow register, when I was dx 6 yrs ago
Maureen

by Simon Clayson (Jun 6)

I tried to join the bone marrow register when I donated blood recently. I was told I was too old which was a bit of a shock at age 55! I am due to give blood again soon so I will check - maybe

by sandy craine (Jun 5)

My daughter Nina had planned to become a donor since I had my transplant in 2003 but somehow had never got around to it. However after reading Adrians petition, she sent it to all of her friends and
Category: Uncategorised

Replies: 3

Last updated: 6 June 2008