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sandy craine on 29 September 2013

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Replies: 1

Last updated: 29 September 2013

Post from MDeRosia re: bosutinib and TKI intolerance
by karen (Sep 29)

It sounds as though you are having a hard time at the moment but the reality is that without these drugs our life expectancy is not great. I have been on four previous TKI's and had problems in one

by sandy craine (Sep 29)

I have reposted this from a previous string owing to the fact that it was tagged on to a post by Ali Lorem. Given that Ali was not able to tolerate TKI therapy (although she did respond clinically
Category: Uncategorised

Replies: 1

Last updated: 29 September 2013
FOURthPLINTH on 28 September 2013

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Replies: 3

Last updated: 29 September 2013

DESTINY
by FOURthPLINTH (Sep 29)

Thank you both, Steven and Sandy, for your reassuring comments.
Hopefully, there will be a site in reasonable distance.If Hammersmith is participating in the trial,then that would be ideal- fingers

by sandy craine (Sep 29)

Hi Sue,

I agree with Steven, there will quite a few sites around the UK that will be participating in the DESTINY trial. Given your treatment centre is close to West London, I see no reason to

by Steven Davies (Sep 29)

Hi Sue.
I think that if that's what you want and your counts etc. are with the prescribed limits for the trial I think that you should ask for a Referal to a centre that is trialing it.

by FOURthPLINTH (Sep 28)

I`m not a regular contributor to this forum - only the second time.

My story - I was diagnosed in 2009 and agreed to take part in a clinical trial i.e. SPIRIT 2 (Imatinib v Dasatinib). I was
Category: Uncategorised

Replies: 3

Last updated: 29 September 2013
nigel on 28 September 2013

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Replies: 1

Last updated: 28 September 2013

Cancer Drugs fund annoucement UK 2 years extension
by sandy craine (Sep 28)

Hi Nigel,

Yes this is good news- although some are against the CDF in principal. But for CML patients who need access to bosutinib, dasatinib and ponatinib it is a potential life saver.
Only

by nigel (Sep 28)

BBC NEWS 7.45 Cancer Drugs fund announced to continue for 2 extra years £400 Million set aside, so the fund continues, thanks to all that have battled. Good news at least for 2 years to sort a new
Category: Uncategorised

Replies: 1

Last updated: 28 September 2013
sandy craine on 26 September 2013

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Replies: 1

Last updated: 20 November 2013

UK CML patient and Family Day- Wolfson College, Oxford - Saturday Nov. 16th 3013
by tony morgan (Nov 20)

Hi sandy,

Although a bit late Saturday ,enjoyed it very much ,sandy I had your partner wright your e mail on a bit of paper, unfortunately lost it. Could you email to me on Mr_Fireworks@

by sandy craine (Sep 26)

The 2013 National UK CML Patient Conference - Oxford at Wolfson college on Saturday Nov. 16th.
Venue details, Agenda and online registration (preferred method) are here:

http://www.
Category: Uncategorised

Replies: 1

Last updated: 20 November 2013
Luisa on 26 September 2013

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Replies: 1

Last updated: 27 September 2013

sub-optimal response at 6 months
by sandy craine (Sep 27)

Hi Louisa,

first: FISH only tests around 200 cells so that would explain your negative by FISH at 3 months.

Your 6 mth Q-PCR shows your still have a significant % or BC-ABL transcripts (

by Luisa (Sep 26)

I've just received the results of my PCR at 6 months - still 16% - it was 19% at 3 months and 11% at 4 and 1/2 months. the FISH results on the BM were 3% (100% at diagnosis but negative at 3
Category: Uncategorised

Replies: 1

Last updated: 27 September 2013
Steven Davies on 22 September 2013

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Replies: 6

Last updated: 25 September 2013

22/9 CML World Day
by sandy craine (Sep 25)

Hi Karen,
you must be one of the few to have been treated with all available TKIs! Intolerance is one of the most difficult issues to deal with. Unlike resistance, you have responsive disease (a

by karen (Sep 24)

My story is probably similar to quite a few people's.
I was diagnosed in 2008 when I was 34 (where does the time go?!) and started on Glivec. I was on this for about 7 months when I turned a lovely

by sandy craine (Sep 24)

Thanks Nigel, there are so many other stories 'out there' ... mine is just one, all be it a rather long one! I hope it will help to inspire those new to CML, and including their loved ones, realise

by nigel (Sep 23)

Hi Sandy just read your story, its " nice " to here the back ground to your journey and wanted to say well done on what has been a real battle for you, David and all your family. Glad you are well
Category: Uncategorised

Replies: 6

Last updated: 25 September 2013
sandy craine on 21 September 2013

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Replies: 2

Last updated: 22 September 2013

Impact Survey: What is my PCR?
by sandy craine (Sep 22)

Hi Rod,

yes you have a very good point. I took the survey and did make a comment, but that was because I had heard of the campaign- I have posted on here about it during this last year as the

by RodM (Sep 21)

....interestingly, on the first page, it's mandatory to say what the "MyPCR" campaign has encouraged you to do, with a list of options.
Since I'd never heard of the campaign, and there's no option

by sandy craine (Sep 21)

CMLS group partnered with MAX Foundation on their global 'What is MY PCR? campaign. We would like to share the "What is MY PCR" campaign impact survey which has just been officially launched!
Category: Uncategorised

Replies: 2

Last updated: 22 September 2013
sandy craine on 26 September 2013

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Replies: 7

Last updated: 22 October 2013

Register online for Patient Conference- November 16th, Oxford
by sandy craine (Oct 22)

Sorry for delay Tony... I missed your post. See below for the link to the website for booking the day. There are still about 40 places left so you should be OK.
best wishes,

Sandy
http://www.

by tony morgan (Oct 12)

Hi sandy ,

What's the exact site to book on?.

Tony

by sandy craine (Oct 2)

Hi David... looking forward to meeting up with you at the conference ;o)

Sandy

by David Fitz (Oct 1)

I'm in too.
It'll be my first one, so am looking forward to it. I've only ever met one other person with CML, and even then it was only for about 2 minutes. I expect I'll break my record with ease
Category: Uncategorised

Replies: 7

Last updated: 22 October 2013
sandy craine on 19 September 2013

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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

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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

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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

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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

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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-
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Replies: 4

Last updated: 6 September 2013
ece2108 on 6 September 2013

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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

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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

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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

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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