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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

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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
sandy craine on 18 October 2013

Category: Uncategorised

Replies: 5

Last updated: 1 November 2013

ARIAD Announces Discontinuation of the Phase 3 Epic Trial of Iclusig in Patients with Newly Diagnosed Chronic Myeloid Leukemia
by sandy craine (Nov 1)

See Home page for this article and the FDA statement.
Sandy

by nigel (Nov 1)

Link attached. http://www.fda.gov/Drugs/DrugSafety/ucm373040.htm

by sandy craine (Oct 22)

Hi David,
As far as I understand it, the EPIC trial has ceased to recruit any more patients owing to the adverse event seen in some trial patients. Those already treated with ponatinib who are

by Alastair C (Oct 21)

David as I understand it this trial which has been stopped was looking at Ponatinib as a first line treatment compared to Imatinib. People who have gone on to Ponatinib have in the main tried
Category: Uncategorised

Replies: 5

Last updated: 1 November 2013
Steven Davies on 15 October 2013

Category: Uncategorised

Replies: 1

Last updated: 16 October 2013

An extra zero
by sandy craine (Oct 16)

Hi Steven,

good news for you, it is always good to see an extra zero (especially from the HH PCR)
Best... Sandy

by Steven Davies (Oct 15)

Just got home from having my flu and pneumonia jabs and saw an email from the Hammersmith that my PCR from 3/10 was 0.003 only had this once before. So hope it's here to stay.
Category: Uncategorised

Replies: 1

Last updated: 16 October 2013
sandy craine on 14 October 2013

Category: Uncategorised

Replies: 1

Last updated: 14 October 2013

Greg D
by sandy craine (Oct 14)

Hi Greg,
I copied your post from the rather long discussion thread below in order to welcome to this forum.

Fatigue is a common side effect from imatinib and many suffer from it. Some have

by sandy craine (Oct 14)

Hello

Submitted by greg d on Sun, 13/10/2013 - 02:15.

Johan,
Your English is fine. I'm American but my mother was born in Leiden and grew up in Noordwijk and Haarlem. I was born and
Category: Uncategorised

Replies: 1

Last updated: 14 October 2013
Luisa on 11 October 2013

Category: Uncategorised

Replies: 1

Last updated: 12 October 2013

how long does it take to get test results?
by Vangogh (Oct 12)

Hi Luisa

You are basicly right. I am at Kings College Hosp. and my results are available after 7 to 10 days. I understand the process takes approx 2 to 3 days.

Best Wishes

Tony

by Luisa (Oct 11)

I'm curious to know if the time it takes to get pcr/cytogenetic/mutational analysis results is roughly the same in all hospitals. I am being treated in York but the PCR is done in Leeds. Every time
Category: Uncategorised

Replies: 1

Last updated: 12 October 2013
andynamo on 13 October 2013

Category: Uncategorised

Replies: 1

Last updated: 14 October 2013

Dasatinib first-line?
by sandy craine (Oct 14)

As far as I know dasatinib is used in the first line setting in several EU countries. In England it is possible to access dasatinib through the Cancer Drugs Fund. In Scotland, Wales and N. Ireland

by andynamo (Oct 13)

Just out of curiosity, does any country in Europe approve dasatinib as first line treatment?

cheers!
Category: Uncategorised

Replies: 1

Last updated: 14 October 2013
hannah2010 on 7 October 2013

Category: Uncategorised

Replies: 3

Last updated: 9 October 2013

result and significance
by sandy craine (Oct 9)

Hannah,
that does look like a major set of zeros! Do you know where you PCR test was done? Normally (from my experience of Hammersmith lab) there is the first zero - ie. the one with the decimal

by hannah2010 (Oct 8)

it sounds good olivia but i must be honest i do struggle with zeros and decimal points haha this has took 3 years to get there xx

by Olivia (Oct 8)

Sounds excellent to me, I'm jealous!

Olivia

by hannah2010 (Oct 7)

hi i recieved my recent result of 0.00011 can anyone tell me is this close to undetected? numbers arent my thing haha, the hos posted this result so never had it explained thanks hannah
Category: Uncategorised

Replies: 3

Last updated: 9 October 2013
shafagh12 on 5 October 2013

Category: Uncategorised

Replies: 3

Last updated: 9 October 2013

Can any body help us please?
by sandy craine (Oct 9)

Dear Shafagh,

I agree with what both Alistair and Richard have said. You should not panic or worry at all and given her white cells are low can be considered to show a good response to her

by Richard42 (Oct 7)

Safagh
I agree with Alastair that you should not worry at this stage and give it a bit of time to settle down. It is really quite common for blood counts generally to drop below "normal" - to

by Alastair C (Oct 5)

Hi Shafagh
I hope I can help you not to worry.
I am now 56, and was diagnosed over 6 years ago. Historically I had had a low WBC (average 2-2.5) for over 20 years before diagnosis. I moved home and

by shafagh12 (Oct 5)

Hi every body again.

My mother is 53 years old and diagnosed with chronic myelogenous leukemia (ph+) in chronic phase about 5 weeks ago according to the bone marrow, genetic and CBC tests also
Category: Uncategorised

Replies: 3

Last updated: 9 October 2013
sandy craine on 29 September 2013

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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