[mayflyParticipant]

I had my first belantamab Mafodotin treatment on 7/12/25 alongside bortezomib and 20 mg dexamethasone. I’d been on daratumabab dex and lenelidomide since diagnosed in may 2024. That line of treatment stopped working in July 25 and my paraproteins began to rise and increased bone involvement. It took until 7/11/25 for hospital to organise a contract with a company called Apodi to organise the eye tests through some specsavers branches. I have only had one treatment of belantamab as my eyes became quite gritty and there was some damage on the surface of the eye. (This is apparently reversible)
I have continued with weekly dex and bortezomib and my paraproteins are continuing to come down.
I see the consultant every 3 weeks and they reassure me that it will stay in my system and continue to work even if I only have it every few months which is good news as far as I’m concerned as apart from my eyes side effects are minimal. The only issue is the organising of eye tests by Apodi who leave it until 2/3 days before consultant visit to organise eye tests which is annoying trying to keep whole day free just in case of an appointment. (I am not allowed to make the appointment myself!)
I have asked the hospital to make a complaint but apparently this is the only company that can organise the tests on behalf of the drug company. It would be really interesting to know if anyone else has to go through this company.

[mayflyParticipant]

Hi Pedro,
I started Belantamab mefodin in mid November as my 2ndline of treatment. I’m the first patient in Gloucestershire.I’ve had eye tests every 3 weeks and had problems with my corneas so 2nd treatment was delayed and having seen consultant today it’s now delayed for at least another 3 weeks possibly more until my eyes improve. Still have weekly velcade and dexamethasone (which I hate) but my paraproteins had reduced a little bit today so I’ll take that as a positive.

[Author]

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