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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Hi, I have been offered Bomedemstat (MK-3543/IMG-7289) at Guy’s. I believe there are very far and few between people on this trial, I would like advice to know if it would be beneficial to myself. I am concerned of it being unapproved but having had Thrombocythaemia for 25 years I am now having problems with so many of my bloods being out of range, especially low red blood cells and haemoglobin. At present I take Hydroxycarbamide, and Anagrelide and Asprin. Has anybody else been offered this latest trial? I really am in a dilemma what to do and where to get advice before my Guy’s appointment next week.
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Hello @Kimo ,
Thank you for sharing your experience here. I may be wrong, but I wonder if this might be the trial your doctors have spoken to you about?
It’s completely understandable to have lots of questions and to want to feel as prepared as possible ahead of your appointment next week. I do hope someone with experience of being treated with Bomedemstat is able to share their personal reflections here on the forum.
Apologies if you’ve already received this, but before signing a consent form to join a trial, you should have the opportunity to meet with the research team to learn more about the study and what taking part would involve. You’d also be given written information (called a patient information leaflet), which typically covers:
- what the trial is aiming to find out
- what the different treatment groups are
- the possible risks and side effects
- the potential benefits
- what tests or check-ups you’ll have
- how often you’ll have follow-up appointments, and for how long
- whether researchers would like to store any blood, tissue or other samples for future research
- how your personal information will be handled and who will have access to it
Whether or not you’ve had a chance to look through this already, it might be helpful to bring along some questions to your appointment. You may already have some in mind, but if useful:
What should I ask my doctor about clinical trials? | Cancer Research UK
Everyone’s experience of taking part in a trial is different, but you might also find this helpful when thinking things through:
The pros and cons of taking part in a clinical trial | Cancer Research UK
If it’s of interest, MPNVoice is running a free online forum today, Thursday 3rd July (6–7.30 pm BST) sharing updates from the recent European Haematology Association (EHA) conference - a meeting where experts talk about the latest blood cancer research. There’s a live Q&A with a panel of Myeloproliferative neoplasms (MPN) specialists too. Bomedemstat isn’t directly mentioned on the agenda, but it could still be a good chance to hear about new research or ask questions about treatments you’re curious about:
MPN Voice Virtual Forum – Post-EHA 2025 Updates
I hope some of this is useful. If you’d like to talk anything through, our Clinical Trials Support Service is also here to help:
Clinical Trials Support Service | Blood Cancer UK
Take care,
Rachel
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Thank you so much, Rachel, this is really helpful.
My doctors have not spoken to me about this trial. My GP could not advise either, as this is a rare disease and they are not too au fait. My haematologist is finding it difficult to keep my bloods in range, so as an option, referred me to Guy’s for any up-and-coming trials.
I believe Guys only have two patients trialling this new drug and not many worldwide.
It is very difficult to come to a decision on how to go forwards. Hopefully, my appointment with Guys next week will answer a lot of questions, they are very keen for me to take this trial.
There is also a lot of commitment to consider, needing to travel 50 miles every two weeks to London for 16 weeks and monthly from then on for 158 weeks!
Many thanks,
Kim
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Hi @kimo.
I’m sorry to hear that your blood counts have not been in range, but it’s reassuring that your local team have sought support and advice from the team at Guy’s.
I appreciate that this is understandably a difficult and very personal decision to make. I hope your upcoming appointment allows you to ask any outstanding questions you have to help decide what works best for you. When thinking about commuting time, it might be worth asking if they’re aware of any other sites that might also be recruiting.
I’m glad to hear the information was useful. Again, if it would help to chat things through with our trial support service, please don’t hesitate to get in touch. We can also carry out searches for available clinical trials across the UK to make you aware of all potential options.
Wishing you the very best,
Rachel
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Thank you, Rachel.
I think that would be very beneficial to me knowing of available clinical trials across the UK. Would it be possible they could email these to me?
Many thanks,
Kim
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@Kimo - of course! In order to complete a search, we would ask for a little more information about your treatment history and preferences, and we can absolutely do this over email.
Would you mind filling out our short referral form? Blood Cancer UK Clinical Trials Support Service referral | Blood Cancer UK One of our team members can then get in touch with via email regarding next steps.
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Yes I will do that Rachel, please do email.
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