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sandy craine on 19 September 2013

Category: Uncategorised

Replies: 1

Last updated: 27 September 2013

Novartis Press Release- to mark World CML DAY (22/09)
by Basil from RSA (Sep 27)

Fantastic news - at last!

by sandy craine (Sep 19)

Novartis marks World CML Day with update on global research program to evaluate whether Ph+ CML patients can live treatment-free.
 CML community recognizes September 22 as World CML Day to raise
Category: Uncategorised

Replies: 1

Last updated: 27 September 2013
shafagh12 on 17 September 2013

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Replies: 16

Last updated: 21 September 2013

Please help us understanding this test results
by Richard42 (Sep 21)

Hi Shafagh
I don't have much to add to what others have said but maybe my own experience will also help.
I was diagnosed in May 2009 at the age of 42 and have been on imatinib ever since. It worked

by shafagh12 (Sep 20)

Hi Olivia.

Thank you so much.

My mother didn't have any cramps to day and only she told me she's feeling a little pain on top of her left leg and she has a little edema on there. (where

by shafagh12 (Sep 20)

Hi Chrissie

Thank you.

My mother didn't have any cramps today and we didn't try the quinine yet, because I think before taking any drugs we should consult with her Dr. then I'll ask her

by chrissie (Sep 20)

Hi Shafagh
Sorry to hear about your mother's cramp. I, too, suffered with this badly, especially in my neck, but for me the cramps have got better over the past 3 years.
When I went to a CML
Category: Uncategorised

Replies: 16

Last updated: 21 September 2013
jacqui from Col... on 10 September 2013

Category: Uncategorised

Replies: 5

Last updated: 20 September 2013

So pleased
by chrissie (Sep 20)

Well done Jacqui. Great result,

Best

Chrissie

by sandy craine (Sep 19)

Dear Jacqui, apologies for late reply but I have been on holiday and also managed to get an infection a couple of days before my return. Just about getting on my feet again although still not

by jacqui from Colchester (Sep 17)

I am over the moon although you always want that little bit more 0.000. A year ago my Consultant was asking if there were any potential donors in my family as dasatinib and imatinib were causing me

by joe m (Sep 11)

That's great news
Category: Uncategorised

Replies: 5

Last updated: 20 September 2013
angela on 10 September 2013

Category: Uncategorised

Replies: 7

Last updated: 2 October 2013

Annual Travel Insurance
by angela (Oct 2)

I will phone them and see what they come up with :)

by angela (Oct 2)

Thanks very much for that

by Dennis (Sep 19)

It is prohibitively expensive, so I'm also travelling without cover for CML. my advice to people who think they have cover, is be very careful. If you answer no to "are you on chemotherapy" , then

by ruddoug09 (Sep 11)

Hi Angela

I recently took out an annual policy with Medici with an endorsement on my CML and a minor condition for my wife.
To cover the both of us and our one year old son, its was £133 per
Category: Uncategorised

Replies: 7

Last updated: 2 October 2013
bobosbo on 8 September 2013

Category: Uncategorised

Replies: 2

Last updated: 9 September 2013

Flu & Shingles Vaccine
by Steven Davies (Sep 9)

I emailed my consultant today and she has come back and said that as my counts are as good as they are and because I have had a very bad bout of shingles about 5 years ago there is no objection to

by Steven Davies (Sep 8)

Thanks Bob. There is an article in today's mail on Sunday. I have looked it up on the net as well and it is only available to those aged 70 and 79. Very specific.. Over the next few years they

by bobosbo (Sep 8)

Hello All

My father in law is a CLL patient & has received an email from CLL Support regarding both Flu & Shingles vaccines that I thought would be relevant to us. It states the
Category: Uncategorised

Replies: 2

Last updated: 9 September 2013
Parklife on 5 September 2013

Category: Uncategorised

Replies: 4

Last updated: 6 September 2013

PCR after 8 weeks concern.
by Parklife (Sep 6)

Hi all,
Thanks again for getting back to me with some real positive stuff.
Thanks for that link Chris, and thanks Richard and David also for your input. Its all a huge help and I have printed the

by Richard42 (Sep 5)

Hi John
It can all be a bit of a whirl/blur to start with and being concerned is understandable. However, you had a good and fast haematological response which does suggest imatinib has

by David Fitz (Sep 5)

If it's any comfort, I had a bit of a 'block' at around 20% (from a 320% start) as well for a bit and then after a while it started to drop again. I guess we are all different.
Personally, I get a

by cdw5000 (Sep 5)

John,
I understand your concerns and you are right to be questioning if your treatment is right. First advice is to read the European guidelines:
http://www.cmladvocates.net/education/eln-
Category: Uncategorised

Replies: 4

Last updated: 6 September 2013
ece2108 on 6 September 2013

Category: Uncategorised

Replies: 6

Last updated: 9 September 2013

New diagnosed CML
by David Fitz (Sep 9)

I'm doing well, thank you. Not quite got myself to a major molecular response yet, but getting closer and closer. I switched from imatinib to dasatinib and that helped me a lot! It's great that we

by ece2108 (Sep 9)

Thank you very much for your respond!

How are you doing? How is your experience with CML, the medication, etc.

by David Fitz (Sep 7)

> I still have a lot of questions: I’m I going to have a normal life?
All going well, and you having a good response to the drugs - there's no reason why not.
> For how long?
Again, caveated

by ece2108 (Sep 7)

Thank you very much David and Karen, Thank you for your quick reply. Yes as most of us, I guess, I just had a simple blood test done and my WBC was at 63’000. I could see that the Doc, was worried,
Category: Uncategorised

Replies: 6

Last updated: 9 September 2013
cliffee on 30 August 2013

Category: Uncategorised

Replies: 1

Last updated: 1 September 2013

High Bili on Tasigna
by cdw5000 (Sep 1)

Hi,
I also had ast/alt elevations in my early days of starting tasigna - this is something that can happen and I know of at least 2-3 others who had experienced raised levels. My oncologist was

by cliffee (Aug 30)

Hi,
I was wondering if anyone has experienced this with Tasigna. Any help would be appreciated.

I recently switched to Tasigna from Gleevac a few months back and was put on 300mg twice a day.
Category: Uncategorised

Replies: 1

Last updated: 1 September 2013
Lyndsey on 27 August 2013

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Replies: 2

Last updated: 28 August 2013

Aml
by Lyndsey (Aug 28)

Thanks sandy just remembering how scared I was at diagnosis so I'm sure that will help

Thanks again

Lynne

by sandy craine (Aug 28)

Lynne,
She should try ACOR.org before any other. She will find a specific list (discussion group) for AML. I am sorry to hear of her diagnosis.
www.ACOR.org
Sandy

by Lyndsey (Aug 27)

Hi

I just wondered if anyone could recommend any good sites for aml. I have cml and friend in her 30s has just been diagnosed with aml. Just to point her in right direction before she finds
Category: Uncategorised

Replies: 2

Last updated: 28 August 2013
Lyndsey on 1 September 2013

Category: Uncategorised

Replies: 2

Last updated: 5 September 2013

2013 patient/carer day
by karen (Sep 5)

Hi Lynne
I don't think there is any more info yet but Sandy will post when there is.
It may be worth waiting to book your hotel as there are sometimes offers available to delegates of these

by Sarah Bo (Sep 4)

Hi Lynne,
I don't know any more info I'm affraid but I would also be keen to attend.
Have you been to one before?
Sarah

by Lyndsey (Sep 1)

Hi was just wondering if anymore information about the patient/carer day in Oxford this year? Looking to try to book a hotel close to the venue!

Thanks

Lynne
Category: Uncategorised

Replies: 2

Last updated: 5 September 2013
Parklife on 24 August 2013

Category: Uncategorised

Replies: 5

Last updated: 7 November 2014

side effects of Imatinib?
by wshi2001 (Nov 7)

hi, Richard,

I've just come across your reply. As a new cml patients just dx 6 weeks ago, it may be still too far a target to reach. But that's what we are all trying to achieve eventually

by Parklife (Aug 25)

Hi Sandie
Thanks once again for your advice. Much appreciated.
As for a drop from 100% to 20%, that is what my nurse told me. I am not sure what tests have been taken as they haven't told me at last

by sandy craine (Aug 25)

Hi John,
First let me say that I agree with all that Richard says in his post. Side effects can be an issue for some and a non issue for others... i.e they can and do manage to live with them of the

by Parklife (Aug 24)

Hi Richard
First of all thanks for your in depth reply and well done on being at zero for several year.
Good to hear you are responding well and have had little side effects after things settled.
Category: Uncategorised

Replies: 5

Last updated: 7 November 2014
Lydia on 27 January 2014

Category: Uncategorised

Replies: 32

Last updated: 30 April 2014

DESTINY TRIAL
by Lydia (Apr 30)

Thank you everyone for their responses. Destiny is a big subject. Sandy has started a new thread in response to Thomas' request for an update yesterday so I'll continue on Sandy's new thread and

by Lydia (Apr 30)

.Thank you everyone for their responses. Destiny is a big subject. Sandy has started a new thread in response to Thomas' request for an update yesterday so I'll continue on Sandy's new thread and

by Thomaskk (Apr 28)

Hi
Has anyone got latest update on the trail ?
Thomas

by (Mar 25)

Afternoon Everyone
Have been for my check up today (been on reduced dose since 29th January) I am really lucky that everything is absolutely fine and found out a bit of interesting information for
Category: Uncategorised

Replies: 32

Last updated: 30 April 2014
karen on 20 August 2013

Category: Uncategorised

Replies: 1

Last updated: 20 August 2013

Bosutinib
by sandy craine (Aug 20)

Hi Karen....good luck with this one. I hope it proves to be the one!

I think there are not many more than 50 patients throughout the UK who are currently taking bosutinib. I can put you in

by karen (Aug 20)

Hello,

I am about to start Bosutinib this week and was wondering if anyone who had used it had any words of wisdom for me? Starting on 300mg and hopefully increasing the dose over time to
Category: Uncategorised

Replies: 1

Last updated: 20 August 2013
Steven Davies on 18 August 2013

Category: Uncategorised

Replies: 5

Last updated: 10 September 2013

My Diagnosis back on August 18th 2004
by angela (Sep 10)

Congratulations Steven, really pleased for you. Angela

by sandy craine (Aug 21)

Hi Steven, you can find details on the patient day overview at the top of the page- in red.

this is the paragraph on DESTINY:
DESTINY – a UK study using dose de-escalation for those with

by chrissie (Aug 20)

Hi Steven
I am interested in this one and awaiting the go ahead.
Best

Chrissie

by Steven Davies (Aug 20)

Thank you Sandy.
I must have missed that one. I not heard of it. Do you have anymore details.
Many thanks Regards
Steven
Category: Uncategorised

Replies: 5

Last updated: 10 September 2013
Thomaskk on 4 February 2014

Category: Uncategorised

Replies: 4

Last updated: 20 March 2014

Senior Most Person on Gleevec ?
by darley (Mar 20)

I also went on it when it was still in trial... I'm thinking 13/14 years ago now.
I'm on 400mg per day.
As far as I'm concerned it's a miracle drug. :)

by pat preston (Feb 21)

Hello Thomas, You may be interested to know that I have been on Imatinib since the year 2000 when I began taking it when it was on trial in the UK. It makes me a very expensive woman! In my view

by sparkypcl (Feb 5)

Hi Thomas,
I've been on Glivec since September 2003, was originally on 400mg for the first 6 months then was changed to 600mg per day which is the amount I still take. Don't have many side effects

by Steven Davies (Feb 5)

Hi. There are many people who are on long term imatinib. But like any drug you could become resistant to it. That ia a small proportion. Some people lie me the drug works very well but I'm
Category: Uncategorised

Replies: 4

Last updated: 20 March 2014
markfrommk on 13 August 2013

Category: Uncategorised

Replies: 8

Last updated: 26 November 2013

Newly diagnosed in Milton Keynes
by sandy craine (Nov 26)

Hi Vic,
Good to hear you are doing well on imatinib (Glivec) and that this website has been helpful to you.
Best wishes,

Sandy

by Vic (Nov 25)

Hi, I'm Vic, i'm under MK hospital & had CML for 6+ years & am 37 now.

Tea total ish except for the odd bottle of Baileys!

Hope you are doing ok on Glivec, wonder drug for me

by RodM (Aug 15)

Glad things are working out ok, and welcome to the club.
On drinking, I haven't really changed my habits at all. Anything beyond about 3 beers or half a bottle of wine is rare for me, but one does

by Richard42 (Aug 14)

Hi
I was diagnosed in May 09 aged 42. Have been on Glivec ever since and done really well.
At first, I stopped all alcohol as I just didn't like it with Glivec. Gradually I have become
Category: Uncategorised

Replies: 8

Last updated: 26 November 2013
Basil from RSA on 8 August 2013

Category: Uncategorised

Replies: 1

Last updated: 9 August 2013

News from Basil in South Africa
by sandy craine (Aug 9)

Hi Basil,
just to remind you that one PCR result does not necessarily reflect what is actually going on. You have had this result before- you said your highest was in 2010 - so even if this is a

by Basil from RSA (Aug 8)

As many of you may know by now I have had a wonderful trip off Gleevec or any other TKI's.

It has been 4 years and 3 months ago that I took my last 400mg of Gleevec.

Over this period I
Category: Uncategorised

Replies: 1

Last updated: 9 August 2013
tartancaddy on 6 August 2013

Category: Uncategorised

Replies: 5

Last updated: 9 August 2013

imatinib v newer TKI's
by Steven Davies (Aug 9)

Hi Gary
I was dx 9 years ago next week and have just received my latest PCR result of 0.014. I am intolerant to the TKI's which means they all work for me but they all have bad side effects.
I

by tartancaddy (Aug 8)

Hi Sandy
Thanks once again for your very informative reply. My PCR results were fine the last time i attended hospital. I've just moved from Warwickshire to Edinburgh and meeting my new Consultant

by sandy craine (Aug 6)

Hi Gary,

access to one of the 2nd Gen TKIs depends on where you live. Nilotinib, as Karen has already suggested, is available through the NHS for both 2nd and 1st line therapy in England

by tartancaddy (Aug 6)

Hi Karen
Thanks for the info. I'll have a look at Nilotinib.
Category: Uncategorised

Replies: 5

Last updated: 9 August 2013
kathy on 8 August 2013

Category: Uncategorised

Replies: 1

Last updated: 8 August 2013

white cell 2.7
by sandy craine (Aug 8)

Hi Kathy,

First congratulation on your stable MMR. Regarding white cells counts, it is my understanding that 2.7 is fine. As long as your neutrophils are at a decent level- i.e somewhere over

by kathy (Aug 8)

hi guys had my appointment yesterday and my count was down from 4.4 to 2 .7,is there any reason for concern,im still in mmr so good news there.my consultant'who's new to clinic' said he may have to
Category: Uncategorised

Replies: 1

Last updated: 8 August 2013
Basil from RSA on 6 August 2013

Category: Uncategorised

Replies: 1

Last updated: 7 August 2013

Stressfull times
by sandy craine (Aug 7)

Hi Basil, good luck for a continued stable molecular remission.

Sandy

by Basil from RSA (Aug 6)

My blood samples were taken on Monday. Now the anxious wait.

To date I have been off Gleevec for 4 years and 3 months.

These are always very stressful times waiting for the results.
Category: Uncategorised

Replies: 1

Last updated: 7 August 2013