rich Castle
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Acute Myeloid Leukaemia Clinical Trials Working Group

rich Castle
Posted by
21 Jan 2016

A little about my work as a patient rep on the Aml Clinical Trials Working Group of the National Cancer Research Institute.

Folks.

About a year ago I was approached by John Reeve (some of you may know him through your work with the charity) to join the above group as a patient representative, and I'm sure glad I did.

This group of Researchers, Professors, Doctors and Haemotologists are involved in clinical trials research into better treatments for Acute Myeloid Leukaemia, and I am there as a patient representative, speaking from the patients point of view. I also get to hear about the latest research developments into this type of blood cancer which is very interesting.

To be in the same room as these professionals and being able to contribute to discussions on the latest trials is awesome. The dedication and commitment shown by these people to find a cure for Acute Myeloid Leukaemia is unquestionable. There are so many trials going on right now, using different combinations of both existing and new drugs toether with new treatment protocols. Not all of them achieve the desired results, but these trials are how new and successful treatments are developed.Treatments that save lives. These trials are critical in discovering new and innovative treatments for Blood cancer and each and every treatment regime that blood cancer patients have now once went through such trials. A couple of examples of successful trials include Imatinib (gleevec) used in the treatment of Chronic Myeloid Leukaemia (Andy Jackson is probably familier with this miracle drug) ATRA (All Trans Retinoic acid) used in the treatment of APML and of course numerous other drugs that have proved successful in clinical trials and are saving more and more lives as we speak. 

Then of course there is the news today that a simple test can predict an AML patients prognosis. This wonderful test known as an MRD (minimal residue disease-bone marrow biopsy to me and you) test is able to detect the mutant NPM1 cancer gene. The test can predict which patients with acute myeloid leukaemia (AML) are at risk of their cancer returning in the future, helping to guide doctors on what further treatment is needed. Doctors found that this type of test is much better at predicting relapse. The test can detect if the patient is in molecular remission and if it does detect a molecular relapse (which happens long before a full blown relapse) then doctors can intervene earlier (as they did in my case) which helps to improve the chances of a successful outcome for AML patients. This research was funded by Bloodwise and the National Institute For Health Research (NIHR) and was embedded into the National Cancer Research Institute (NCRI) AML17 trial, proving this charities commitment to beating blood cancer.

Being a part of this working group is very rewarding and I actively encourage anyone who has an interest in Clinical Trials, to become involved in such a working group. It also gives you an opportunity to see how your donations to Bloodwise are invested into lifesaving research

It involves attending a few meetings each year, plus there are opportunities to speak to the wonderful people involved in groundbreaking research that saves peoples lives. I've had the opportunity to visit the laboratory of Professor David Grimwade (Guys hospital London) who was the principle investigator into the MRD test that I've mentioned above. I was able to speak to him about his pioneering research using this test to help try  and improve the outcomes of AML patients. Professor Grimwade also sits on the Clinical trials AML working group and was at yesterdays meeting at The Sadlers Wells Theatre in London, so I had the opportunity to talk to him about his latest research both at the meeting and afterwards in the nearby Nags Head pub over a glass or two of vino.

It's another way I am committed to helping beat Blood Cancer. I do this with the full love and support of my wonderful girlfriend Diana who has always shown an interest in what I do to help beat blood cancer.

Together we will all beat Blood Cancer.

 

Rich.

Comments

21.01.2016

Hi Rich!

A really fantastic blog and such a wonderful piece to read - it's really great to see how passionate you are for Bloodwise and the wider world of blood cancer research. Keep up the great work! 

Lizzie Goates
25.01.2016

To echo Dannii’s words above, thank you Rich, for this well written blog that confirms what our charity strives to achieve and what it has accomplished already. We wouldn’t be here without the support from people such as yourself, so thank you so much for your continuous efforts to raise awareness, fundraise and help us beat blood cancer