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HAYLEY88 on 9 December 2013

Category: Uncategorised

Replies: 2

Last updated: 10 December 2013

Co dydramol painkiller
by HAYLEY88 (Dec 10)

Sandy, Thank-you so much for the advise.

Regards

Hayley

by sandy craine (Dec 10)

Hi Hayley,

so sorry to hear your dad had such a potentially serious accident! Regarding you worries about the painkillers and potential contra-indication with his therapy. Ibuprofen is contra-

by HAYLEY88 (Dec 9)

Hi,
Can anybody advise me please?

My Dad was diagnosed in Nov 2010 and switched from imatinib to nilotinib which seems to be doing its job.

However he is still not at the target of 0.001
Category: Uncategorised

Replies: 2

Last updated: 10 December 2013
David Fitz on 5 December 2013

Category: Uncategorised

Replies: 2

Last updated: 7 December 2013

Slides from the patient day in Oxford
by David Fitz (Dec 7)

Thanks Sandy - much appreciated.

by sandy craine (Dec 5)

Hi David,

Prof. Clark said he would upload the slides as soon as possible. I think he is waiting until he has all the information regarding the DESTINY trial (i.e that it is open for

by David Fitz (Dec 5)

At the patient day in Oxford, I think I recall a mention that the slides would be made available to participants - but I haven't received an email or anything yet with details.
Had anyone received
Category: Uncategorised

Replies: 2

Last updated: 7 December 2013
sandy craine on 4 December 2013

Category: Uncategorised

Replies: 6

Last updated: 16 January 2014

Surviving CML
by marsy (Jan 16)

Hi Sandy,

I've not logged in for a while and just catching up on the posts. Many congratulations on hitting the 15 year mark. It's a real milestone and I'm sure you raised the odd glass over

by Dennis (Dec 16)

Really happy for you.
Don't often post these days, but I still read quite regularly. Thank you for all the hard work that you've put in over the years. This site helps people understand what the

by cdw5000 (Dec 15)

Sandy,
Congratulations on making 15 years and everything you have achieved both personally and with the wider campaigning and awareness for CML. 15 years is a tremendous achievement and here's to

by Olivia (Dec 5)

I would just like to add my congratulations and thanks for the wonderful work you do on this site, it has helped so many of us to come to terms with our common experience. Keep up the good work,
Category: Uncategorised

Replies: 6

Last updated: 16 January 2014
Gst on 29 November 2013

Category: Uncategorised

Replies: 3

Last updated: 5 December 2013

Last option
by Gst (Dec 5)

Thanks for you detailed replies. I will keep you updated with the test results of Dasatinib.
I feel a bit better I have been able to read more experiences from bloggers on this site.
Thanks
G

by karen (Dec 3)

Hello
The good news is you are being treated at a centre of excellence and the care you are getting will be second to none but I would push to try all the available drugs prior to going for a

by sandy craine (Dec 2)

Hello G,
There are a few points I would like to make.
According to the 2013 update of ELNet recommendations for optimal response to TKI therapy, your initial response to imatinib would have shown

by Gst (Nov 29)

Hello everyone
I just want to start by saying thank-you for this site and for everyone who posts as it has helped me since being diagnosed in Jan 2013. I am 35 years old and it came as shock to me
Category: Uncategorised

Replies: 3

Last updated: 5 December 2013
sandy craine on 19 November 2013

Category: Uncategorised

Replies: 2

Last updated: 22 November 2013

Safety and efficacy of imatinib cessation for CML patients with stable undetectable MRD: results from the TWISTER Study
by sandy craine (Nov 22)

Tony you can contact me on cmlsupportgroup@gmail.com
Sandy

by tony morgan (Nov 21)

Hi sandy,

Had your email address an gone and lost it.could you please email on Mr_Fireworks@hotmail.com thanks tony.

by sandy craine (Nov 19)

See our home page for a link to this article in Blood (ASH Journal) including the related article called TWIST it but don’t spin it! by Professor Jane Apperley of Imperial College, Hammersmith
Category: Uncategorised

Replies: 2

Last updated: 22 November 2013
kp on 17 November 2013

Category: Uncategorised

Replies: 10

Last updated: 17 March 2014

arthritis
by sandy craine (Mar 17)

Polyphenolics isolated from virgin coconut oil inhibits adjuvant induced arthritis in rats through antioxidant and anti-inflammatory action.
http://www.ncbi.nlm.nih.gov/pubmed/24613207?dopt=Abstract

by CanMakeLightofit (Mar 6)

Just to clarify things - what Stuart and Steve are describing is rheumatoid arthritis (RA). This has an autoimmune element in it (though that isn't the whole story) and is treated with drugs like

by Luisa (Feb 26)

I have been on Bosutinib for 4 months now and I am experiencing pain and stiffness at the base of my thumbs (both hands) and also at the base of my big toes,sometimes with a burning sensation. The

by RodM (Feb 26)

Hi - since starting Dasatinib, I've been having problems with my thumb's basal joint - which is the main joint where it joins the wrist. It was at a point where everything I did all day long was
Category: Uncategorised

Replies: 10

Last updated: 17 March 2014
Sarah Bo on 17 November 2013

Category: Uncategorised

Replies: 3

Last updated: 22 November 2013

Hammersmith Results
by sandy craine (Nov 22)

Hi Sarah... you are inline with an optimal response so you are doing well and within the less than 3 month ELNet recommendation..... i.e less that <10% BCR-ABL or less than <35% PH+ by

by Sarah Bo (Nov 17)

Hi Sandy,

Thanks for the response, I wasn't sure if I had misunderstood.

So if that is the case, my 30% results at 3 months may have actually been 9% and I was worrying about nothing

by sandy craine (Nov 17)

Hi Sarah, you are right.
I think Prof. Apperley mentioned that a result from Hammersmith is not reported on the IS, so you need to apply a conversion rate which for HH is 0.3(?).... I hope my memory

by Sarah Bo (Nov 17)

Hi,
Not sure if anybody can help with this question? At the CML patient day in Oxford this week Professor Jane Apperley briefly mentioned 'conversion rates' for PCR results received from the
Category: Uncategorised

Replies: 3

Last updated: 22 November 2013
Dennis on 16 November 2013

Category: Uncategorised

Replies: 1

Last updated: 18 November 2013

Cancer diversity threatens drugs
by cdw5000 (Nov 18)

We already know of a range of different 'types' of CML i.e. mutations - which affect some of us. At the patient day on 16 Nov, professor Jane Apperley showed a slide of approximately 25 different

by Dennis (Nov 16)

I don't know enough about this, so any comment I might make, would be guessing. Anyone else know how this relates to the CML drugs?
http://www.bbc.co.uk/news/health-24957089
Category: Uncategorised

Replies: 1

Last updated: 18 November 2013
stevebroom on 15 November 2013

Category: Uncategorised

Replies: 8

Last updated: 9 December 2013

CML centres in South Wales
by stevebroom (Dec 9)

Hi Theresa, Thanks for responding to my posting. My haematologist consultant tells me that the procedure is that I have to register with a GP when I arrive in wales who will then refer me to a

by TheCoopers (Dec 6)

Hi Steve, my husband has been receiving excellent treatment and support from Dr Chris Fegan of the University Hospital Cardiff (known locally as the Heath Hospital). We actually see him at another

by stevebroom (Nov 18)

Hi Sandy,

Thanks for that.

Steve

by sandy craine (Nov 18)

Hi Steve,
Yes I saw Janet's post regarding QE Birmingham, which is sound advice as they will also be a centre for DESTINY.

Just to confuse you, there is also Oxford and Dr. Adam Mead. I think
Category: Uncategorised

Replies: 8

Last updated: 9 December 2013
Basil from RSA on 13 November 2013

Category: Uncategorised

Replies: 3

Last updated: 14 November 2013

Report back on my CML status
by chrissie (Nov 14)

This is fantastic news, Basil and so many thanks for keeping us all posted. Your example has certainly given me, (and I'm sure many others on this site), hope that in time we can join you in TFR.

by Basil from RSA (Nov 14)

Thank for the kind words Sandy. My Haematologist could not refuse my request as I had gathered so much information from the internet regarding CML, especially the STIM Trials that were being

by sandy craine (Nov 14)

Dear Basil.... your story is a great example of what some of us think 'might' be the reason why some people who,thanks to treatment with one or other of the TKIs, have a sustained (at least 2years)

by Basil from RSA (Nov 13)

Hi all my fellow CML buddies,

I thought it would be of interest to those following my progress since stopping my TKI, Gleevec.

I took my last 400mg dose on 30 April 2009 after following
Category: Uncategorised

Replies: 3

Last updated: 14 November 2013
Luisa on 8 November 2013

Category: Uncategorised

Replies: 11

Last updated: 11 November 2013

bosutinib
by karen (Nov 11)

...you get there it would be good to say hi
K

by Luisa (Nov 11)

I hadn't really considered going. Oxford is quite a long way from York. I can't go the night before so I would have to travel on the day, setting off very early. I'll think about it

by karen (Nov 11)

...it seems to be going well - fingers crossed! Are you going to the conference on Sat?

K

by sandy craine (Nov 11)

Hi Luisa,
just to clarify why the data shows a high rate of discontinuation on bosutinib. During the initial trials a lot of patients experienced diarrhoea but instead of this effect being 'managed
Category: Uncategorised

Replies: 11

Last updated: 11 November 2013
EmChops on 7 November 2013

Category: Uncategorised

Replies: 6

Last updated: 14 November 2013

A decision I have to make about quality of life
by EmChops (Nov 14)

Thank you everyone for posting, your experiences have heartened (and saddened) me that I am not alone and there are options open that I need to explore further.

Chris I shall look out for you

by Pennie (Nov 9)

Hi Emma

There are know cognitive effects with Nilotinib for some people. Unfortunately I am one - I take an antidepressant called agomelatine, prescribed by CML consultant and the Psych dept

by skiinglaketahoe (Nov 8)

Hi Emma
So sorry to hear that you are feeling so low for whatever reason. I couldn't take either glivec or dasatanib and didn't want to even try nilotinib so I had a transplant. I had a variety of

by cdw5000 (Nov 8)

Emma,
I look forward to meeting you on the 16th as you and I have some similar nilotinib side effects. I'm about to make quite a big life change - tell you more face to face.
Chris
Category: Uncategorised

Replies: 6

Last updated: 14 November 2013
sandy craine on 7 November 2013

Category: Uncategorised

Replies: 1

Last updated: 11 November 2013

2013 CML Patient and Family Day - Oxford- approx 20 places left
by sandy craine (Nov 11)

For those who might be driving to Wolfson College for the UK patient day you should consider that Oxford is notoriously anti car.
According to the colleges website it is possible to park and ride

by sandy craine (Nov 7)

Currently there are just over 20 places left for the Oxford day. If you have not already registered or are still considering whether you should attend then you need to register and confirm your
Category: Uncategorised

Replies: 1

Last updated: 11 November 2013
Lydia on 4 November 2013

Category: Uncategorised

Replies: 5

Last updated: 7 November 2013

Reduced Dose Glivec - 300mg
by Lydia (Nov 7)

Well, thank you both Sandy and Alistair. I searched for Prof. Flanagan at Kings and actually came up with the very test you refer to and his contact details! I have written to him and we'll see what

by Alastair C (Nov 6)

Lydia glad to hear your husband is PCRU. I think the test is well worth doing as he may well have a high blood/serum level which would give him more than a therapeutic level in his system which may

by sandy craine (Nov 6)

Lydia,

Alistair advice is good and I agree that it would be a good first step - esp. given your husband does not want to change therapy -
For quite a few years now (since 2012 I think) we

by Lydia (Nov 5)

Hi Alistair,
Now, that's very interesting. Especially patients on the same dose not necessarily having the same level of drug in the bloodstream. That had not occurred to me before but everyone is
Category: Uncategorised

Replies: 5

Last updated: 7 November 2013
sandy craine on 4 November 2013

Category: Uncategorised

Replies: 1

Last updated: 4 November 2013

Doctors Fear Losing Leukemia Drug Deemed Risky
by sandy craine (Nov 4)

For those in the EU, the EMA is actively reviewing our proposed changes to the Iclusig label and we cannot comment or speculate as to whether the EMA will have different views compared to FDA.

by sandy craine (Nov 4)

Doctors Fear Losing Leukemia Drug Deemed Risky

By DENISE GRADY and ANDREW POLLACK

Published: November 1, 2013
People with fatal diseases may be willing to try risky treatments that have
Category: Uncategorised

Replies: 1

Last updated: 4 November 2013
Fiona from Oz on 3 November 2013

Category: Uncategorised

Replies: 7

Last updated: 7 November 2013

Adverse reaction to Tasinga & Spyrycel
by Fiona from Oz (Nov 7)

Hi Melanie, thanks for reply, I think when I go back on the Doc will start me with 50mg, and I will def take with food! It's just the nilotinib (Tasinga) used to be with no food so I thought I would

by tony morgan (Nov 4)

Hi I was diagnosed in 2009 , the only things I have had is swollen eye lids in the mornings , and a bit of cramps and also eye bleeds which are the most irritating .On eve of making a big

by MelanieC (Nov 4)

Hi Fiona, I like you are new to this site (today) I have joined kind of on behalf of my husband who was diagnosed with CML in January this year. He is taking part in the Spirit2 trials for Dasatanib

by Fiona from Oz (Nov 4)

Hi Sandy,

Thanks for your reply, I did not have food with my Sprycel , I saw your post and mentioned this to my Doc and he said after I have a week off my medication he is going to reduce my
Category: Uncategorised

Replies: 7

Last updated: 7 November 2013
cousineg on 24 October 2013

Category: Uncategorised

Replies: 1

Last updated: 24 October 2013

CML: MDC Researchers Uncover Why the Disease Progresses and Becomes Resistant to Drug Treatment
by sandy craine (Oct 24)

wo signaling pathways under scrutiny
The molecular mechanism of CML progression identified by the MDC cancer researchers may aid in targeting these complications directly. In their study, Dr.

by cousineg (Oct 24)

The protein, IRF8, inhibits the survival of cells and is often reduced in CML cells.

See www.cmleukemia.com/interferon-regulatory-factor-8-irf8.html
Category: Uncategorised

Replies: 1

Last updated: 24 October 2013
Kenny on 22 October 2013

Category: Uncategorised

Replies: 5

Last updated: 24 October 2013

Dosantinib
by RodM (Oct 24)

.... are there for me too, but generally things are ok on Dasatinib and I carry on life pretty much as before dx although it requires a positive frame of mind.
Dry skin, some spotty rash on the face

by cmlblogger (Oct 24)

forgot to say the only slightly -ve I have had with Dasatanib is the occasional painful spot and I think that is something that a lot od people on Dasatanib suffer from.
rob

by Kenny (Oct 23)

Thanks for the replies, its reassuring to hear from someone who has experience of both Glivec and Dasatinib and that there were less side effects from Dasatanib than Glivec.
Thanks also for the

by sandy craine (Oct 23)

Just to reassure you about access to dasatinib. In England it is available through the Cancer Drug Fund, in Wales, Scotland and N.Ireland there is a different system which is based on and individual
Category: Uncategorised

Replies: 5

Last updated: 24 October 2013
sandy craine on 22 October 2013

Category: Uncategorised

Replies: 3

Last updated: 31 October 2013

UK CML patient and Family Day- Wolfson College, Oxford - Saturday Nov. 16th 3013
by sandy craine (Oct 31)

Hi Emma,
I think this years day will be worth making the effort to attend.... especially as Dr. Adam Mead will give a presentation on PCRs and how to interpret the results. I think this is the

by EmChops (Oct 29)

Looking forward to it. Been so busy the last year it will be really good to update myself on current developments.

Hope to see you there

Emma

by nigel (Oct 22)

Have reposted the link onto Facebook CML group, will be a good day. Nigel

by sandy craine (Oct 22)

CML Patient and Family Day. There are still some places left, but as it is only 3 weeks or so away it is best to register asap. Looking at the agenda it look like it will be a really interesting day
Category: Uncategorised

Replies: 3

Last updated: 31 October 2013
Alastair C on 20 October 2013

Category: Uncategorised

Replies: 1

Last updated: 20 October 2013

Therapeutic Drug Monitoring of TKIs
by sandy craine (Oct 20)

Thanks Alastair,
I have put the links to the 3 Abstracts on the Home page.
This is an interesting revisit to plasma testing and its usefulness in monitoring the individuals response to TKI therapy

by Alastair C (Oct 20)

I was at a conference last week where there were two very interesting presentations on monitoring drug levels in serum/plasma to aid understanding of effective dose rates. So-called Therapeutic Drug
Category: Uncategorised

Replies: 1

Last updated: 20 October 2013