6th National Seminar for CML Patients - Edinburgh Nov. 2007

All slide presentations will be uploaded on www.mpdmeetings.org very soon.

...click here

I spoke at the morning session with a short presentation about my journey with CML and was followed by Matt Sinclair who presented with great humour his journey with CML. He was attending with his wife Karen and their new baby daughter Chloe.

Prof. Monica Bocchia from Italy spoke about the CML VAX trial. This trial was conducted on patients who had reached a plateau at a low level of disease and therefore unlikely to improve further.
The vaccine was used in conjunction with Glivec. This trial showed some good results but further trials are required. You will see from the slide presentation the percentage who did well.

Prof. Tessa Holyoake presented on the CU GIMI trial [yes you read it correctly !] This trial was an attempt at eradicating the primary stem cells by boosting them with GCSF [growth colony stimulating factor] and knocking them out with Glivec. There were 9 arms to this trial with 3 variations of pulsing or continuous Glivec and GCSF.
The slide presentation again will show you the different arms of the study and how it was conducted.
The conclusion Prof Holyake and her team came to was that Glivec alone is still the best way to go.
She mentioned that there were more drugs in the lab working very effectively at killing the stem cells but this would be for a future seminar.

Prof. Jane Apperley presented on fertility and CML. A subject which is very emotive in young people with CML who want families. She spoke about the management of pregnant CML patients, some with low dose interferon, some with leucopheresis. She also spoke about the patients who have become pregnant whilst taking Glivec.
There are 125 known outcomes. 50% had completely normal children; 28% had an elective termination; 9.6% had foetal abnormalities; 14.4% had spontaneous abortions – the latter is not particularly relevant due to national statistics for spontaneous abortion of 15% for ‘normal’ females.
The advice for females continues to be that you should not get pregnant whilst taking Glivec.
For males there is no adverse effects on them fathering a child whilst on Glivec. One interesting fact she mentioned is that men who undergo transplant may recover their fertility at a later date.
The younger you are the more chance that fertility will return but she still advised sperm banking where possible.

Dr Nick Heaney from Glasgow – spoke on the history of transplants and also reduced intensity transplants without the total body irradiation. As we are all getting to know now mini-sct’s, as they are commonly called, have a good rate of success without the mortality risks of traditional sct’s.

Alison Blackburn and Steve O’Brien from RVI Newcastle, co-hosted the session about disability and benefits. Alison encouraged patients to persevere with trying to get access to disability benefits.
There was much discussion on whether a patient with CML was 'duty bound' to inform their employer. Honesty won in the end and patients were encouraged to assess the situation and if possible 'come clean' about their condition and try to make workable arrangements with their employers for time off to attend clinic appointments etc.
A session with much humour from Alison who really was splendid and I will try and get her email for anyone who would like her assistance with benefits and how to go about things.

Steve O’Brien presented the data from the SPIRIT trial and also the IRIS trial [see the slides]. There is a good slide showing the mutations and responses to Imatinib, Dasatinib and Nilotinib.
There wasn’t much between Dasatinib and Nilotinib but Dasatinib has a slight edge clinically but Nilotinib has a lower side effect profile.

The trials of the Merck drug MK0457 are to come to an end. We can only gather that the results were not durable.

Testing serum levels of Glivec patients is starting to get mentioned now in the UK. The tests are done in France apparently but not here. A situation I am sure will change.

Dr Franck Nicolini presented about mutations and resistance.
I am afraid it was pretty technical and once the slide presentation is published I will try to expand.

The day ended with Prof John Goldman who spoke about monitoring levels of disease in CML. He gave an excellent presentation with very clear slides. His recommendation for monitoring stable patients is, a full blood count, FISH, cytogenetics/PCR every 3 months. There was some discussion about the frequency of bone marrow biopsies and opinions varied.
Ideally one would do them on a three and six monthly basis until complete cytogenetic remission (CCR) and then on a yearly basis with regular 3 monthly PCRs.
The main reason for doing bone marrow biopsies on stable patients would be to detect chromosomal abnormalities.
The PCR provides an excellent way of monitoring disease level.
Opinions certainly varied. He also recommended mutations testing for rises in PCR values.

The slide presentations will be on www.mpdmeetings.org very soon.

Elizabeth Rees
Steven Davies