👥 MODIFY Trial (For Smouldering Myeloma) Peer Support – Connect with Others

Clinical Trials
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:speech_balloon: Connect with Others: Share Your Thoughts, Experiences & Questions About the MODIFY Trial

This is a peer support space for anyone thinking about or currently taking part in the MODIFY trial for Smouldering Myeloma. Whether you’ve been directed here via a QR code or found the forum by chance, you’re welcome to join the conversation.

:red_question_mark: What is the MODIFY trial?

The study will test a new combination of 3 drugs: Isatuximab (Isa), Iberdomide (Iber) and Dexamethasone (Dex), in patients who have intermediate or high-risk (more about risk status here (page 9)) smouldering myeloma. Smouldering myeloma is an early form of myeloma which may progress to active multiple myeloma, but at a slow rate. Patients with smouldering myeloma do not usually receive any treatment but will have regular check-ups and observation. Some patients have a diagnosis of smouldering myeloma, which has a higher risk of progressing to active myeloma.

The study will test if the combination of drugs is effective at preventing or delaying the disease progressing into active multiple myeloma. The study will also test if the combination is tolerated and accepted by patients. (Source)

:light_bulb: Why peer support?

Hearing from others who are considering or already involved in the trial can be reassuring and helpful. Feel free to:

  • Ask questions – if you’re considering the trial, others may have insights to share.

  • Share your experiences – if you’re taking part, your perspective could help someone else.

  • Connect with others – support each other, whether you’re exploring or participating.

:new_button: New to the Blood Cancer UK forum?

To get involved, simply click the Join the Online Community Forum button at the top of the page.

:handshake: Looking for extra support?

This forum is moderated by our wonderful forum support volunteers and our nursing team at Blood Cancer UK, but if you’d like more direct help, you can contact:

:magnifying_glass_tilted_right: Want to learn more about the MODIFY trial?

You can visit the trial page for further information.
If your medical team hasn’t approached you, and you’re interested in finding out whether you might be eligible, feel free to contact our Clinical Trial Support Service. Our team of nurses will be happy to help. Please note that a medical referral must be completed by your own clinician to take part.

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New here? Feel free to introduce yourself in this thread :wave:
High risk smouldering myeloma
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Is there anyone here who is on the MODIFY trial? I started my treatment yesterday so it would be good to compare notes.

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Hello there @simon.p, welcome to the forum. I’m glad you found it and I hope it comes to be as helpful for you as it is for me. Here’s a link to the great Blood Cancer UK information about smouldering myeloma should you fancy a read: Smouldering myeloma | Blood Cancer UK

While I live with a different diagnosis of Polycythaemia vera ('PV'), I know there have recently been new forum members join with similar diagnoses to you and perhaps you’d like to reach out: High risk smouldering myeloma

You can use the search box at the top and Related Topics below to find other posts of interest that way as well. I hope other forum members will respond here, do keep us posted about how treatment goes @simon.p.

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Hi there. I am currently considering whether to join the MODIFY trial as I think I meet the criteria. I hope it goes well for you. I am interested to know how often you have to attend the hospital and how often you have to have a bone marrow biopsy.

All feedback very welcome! Thank you

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Hi Simon. I hope you are progressing well. Did you find any others on the trial? I’m considering it. Would love to hear how you are progressing and what you have learnt if it isn’t a distraction for you. Either here or separately.

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Hello @EPh and @Freda, I’ll give you a summary of my experience of the trial so far, but feel free to ask any questions I don’t cover. Quite happy to share.

I’m lucky enough to be under the care of Professor Kwee Yong and her team at the Macmillan Cancer Centre at UCH and have been since March 2025, having been diagnosed with HR-SMM in June 2024.

Prof. Yong introduced the possibility of taking part in the MODIFY trial and I spent several months considering my decision. Eventually, as the window of opportunity for me to join was closing, I decided to go ahead. My main reason for joining was psychological in that I felt better about being proactive, rather than just waiting and hoping. After less than 2 years, I was fed up with the build up of anxiety every 3 months.

It’s not a small undertaking as it’s a 2-year trial with lots of visits to the clinic, but I have a job I can do from home and an supportive employer.

I’m currently in the Induction phase and in the last week of Cycle 1, so it’s very early days.

Logistics:
Cycle 1 (28 days) - 1 treatment per week which although much quicker than a traditional infusion because of the On Body Delivery System, still writes-off most of the day. On top of that, there’s either a phone call or in-clinic consultation every fortnight.

In Cycles 2 to 13, treatment switches to fortnightly so that should be a bit more manageable, and from Cycle 14 onwards it’s monthly.

Side effects:
As with all drugs, if you look closely at the possible side-effects you’d never go near them, and that’s definitely the case here. I was dreading some of the common ones but up to now, the main reactions I’ve had is feeling ‘wired’ at the tail-end of treatment day (Fridays) and most of Saturday due to the Dexamethasone, then the comedown on Sunday followed by significant fatigue by the time Sunday evening comes around. By Monday morning, I’m feeling more or less normal.

My neutrophils are closely monitored as the treatment impacts them significantly and therefore makes me vulnerable to infections, so I’m cautious about social interactions and wear a mask in crowded places. Last week, my neutrophils had dropped below 1.0 so I was instructed to inject myself with the G-SFR at home (easy) to bring them back on track.

Diagnostics:
Lots of blood tests, but not a huge amount of extra scans etc. If I’m interpreting the schedule correctly, on top of the scans and BM biopsy during the screening phase, I will have BM biopsies in Cycles 4, 13 and 26, with and MRI in Cycles 13 and 26, so not much more than normal monitoring.

Any other questions, just let me know.

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Thanks Simon. I know it’s early days but feels like you made the right choice and are off to a strong start. Well done.

Can I ask, were you choosing between Modify and any other treatments or trials? Daratumumab is a potential option that has been mentioned.

I am sure you are keen to bring normality into life but if you can bear to let us know how you are progressing, we would appreciate hearing that you are doing well. Your perspective is really helpful in having to make a similar decision.

Go well.

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Happy to keep you updated on progress and I wasn’t considering other options as MODIFY was the only trial proposed to me.

BTW, my numbers going into the trial were:

Serum M-Protein (Paraprotein) 25

Light Chain Ratio 31.29

Kappa light chain level 206.5

Bone Marrow Plasma Cells 25

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Thanks so much for this Simon. It is immensely helpful. I too am weighing my options and your comments will help me decide.

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Glad it’s helpful. Of course side effects are different for everyone so my experience won’t be the same for all.

For some extra context, I’m 59, reasonably healthy, but not super fit with mild hypertension but no other co-morbidities. Oh, apart from a need for regular B12 injections for unrelated anaemia.

I also follow a plant-based diet and have done for many years.

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I have put my name forward for the trial. A wait and see approach won’t work for me. Feedback from others suggests people are tolerating the side effects. They appear manageable, though highly personal. If accepted, we can compare notes. All the best.

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Had a consultation yesterday and although it’s very early days (4 weeks in), the numbers are already moving in the right direction.

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Hello there @EPh, welcome to the forum. Apologies for not greeting you till now, but I see you’ve had some great responses from @simon.p and @Freda who have shared experiences with you.

I’m guessing you have a vested interest in myeloma as you’re engaging in this thread, in which case you might like to refer to the great Blood Cancer UK information about smouldering myeloma: Smouldering myeloma | Blood Cancer UK

Do consider giving the specialist nurses at Blood Cancer UK a call, they’re experts in all this and can offer suggestions for further resources. Their free number is on 0808 2080 888.

Just wanted to say @simon.p that I’m really pleased to read that your numbers are moving in the right direction, long may that last! Thanks for offering your support here, it’s really generous of you when you’re undertaking treatment.

Do keep us posted folks about you get on. Don’t forget the forum and its members are here for you so consider having a look around for others with shared experiences.

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Hi @simon.p thanks for sharing, and glad it seems to be going ok so far. I am very interested in your experience of MODIFY as I am considering it seriously as well and have until Nov to start it. I wonder whether UCLH provided you with any advice on potential drawbacks of going down this route and did they advocate for you to do MODIFY? I am getting differing medical advice/perspectives on it which is making it hard to decide. If you’d be ok to have a conversation at some point, that would be most helpful. Hope things continue positively for you. Laura

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Oh and one further qn, do you know how many people have started the trial at UCLH yet? Thanks, Laura

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I only know of 1 other and I’m not sure they’ve started treatment yet

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Hi Laura, I’d be happy to have a chat but can’t see anyway of sharing my number without everyone seeing it. Is there a way to DM other users on the forum?

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