I have ET (essential thrombocyththemia) and have been asked by the wonderful team looking after me at UCLH if I want to take part in a clinical trial. It’s for a drug called Bomedemstat (IMG-7289) sponsored by Imago Biosciences Inc., a US company.
I wondered if any forum members were taking part in this or any other clinical trials for blood cancers.
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Hi @Radius, I hope someone can help you and I will copy your post to @BloodCancerUK for you.
Big decisions I always think that the unknown is so scary.
Do ask your wonderful medical team every fear and question that is going through your mind.
Look after yourself and please let us know how you get on.
Hiya. Great to hear from you. I’m hoping you might find somebody who can share there experiences. When does the trial start?
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I’m sure that the trial team will discuss all of the ins and outs with you and you should ask any questions about anything that worries you. These things can be very positive experiences and you are of course entitled to withdraw at any stage if you want to go back to me established treatments.
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The trial has started with about 50 people already subscribed. I was told they are looking for another 16 participants before March/April when they are likely to have enough.
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@Radius thank you for starting this thread! Great to hear you have a wonderful team looking after you. It’s totally understandable that you’re looking to chat to others taking part in this or other trials, so we await other responses from people who may have these experiences.
I wonder if you might also find it useful to chat things through with our nurses on our Clinical Trials Support Service? - How our Clinical Trials Support Service can help you | Blood Cancer UK
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Hi what was the outcome from the trial…Can I join this trial ?
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Hi @Fara123 a great big welcome to our forum.
To get answers to your questions you could either contact the Blood Cancer UK clinical trials support services after the holidays @Alice_BloodCancerUK gives you a link above or ask your consultant.
I look forward to hearing more about you so please do keep posting.
Really look after yourself
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Hi @Fara123 unfortunately the trial mentioned is now closed for patients with Essential thrombocythemia (ET) as they have recruited everyone they need to. Some patients from the trial are being followed up for longer, to monitor for long term effects and benefits. At a recent American haematology conference initial results were presented and the drug certainly looks like it is effective, hopefully more results will be released soon. Hope that helps - Jane
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Hi thank you,
I’ve just been diagnosed with JAK2 and Essential thrombocythemia (ET) - I’m 61 years old and am only taking aspirin at the moment. I’m really interested in this new drug.
Is it many years away from available in the U.K. ??
Elaine
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Hi Elaine,
It’s difficult to know at the moment when it will be available in the UK but even if it is it’s unlikely to be a first line drug as there are good treatments already available, but until the final results are published we’re unlikely to know for sure - Jane
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