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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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