Oxford Myeloma Workshop 2025 | Patient perspectives on living with myeloma and the unmet care needs that remain

Sarah Gooding:

My name is Sarah Gooding, I’m a consultant hematologist in Oxford. We’ve just been running the Oxford Myeloma Workshop in the last two days. I’m going to introduce my co-interviewees here. 

Louise Martinez:

Hi, I’m Louise and I’m a myeloma patient. I’ve had myeloma since 2018, still in remission. 

Meera Shah:

Hi there, I’m Meera. I’m a patient as well, initially diagnosed a few months after my baby was born 14 years ago, and had radiotherapy initially for a plasmacytoma and then myeloma treatment in 2019 and still on maintenance now. 

Sarah Gooding:

So we’ve just had a patient engagement session where we’ve trialled a new format which we’ve called Grill an Expert and we’ve had a panel of patient experts and a panel of myeloma experts, which is comprised of consultants and nurse specialists and our patient team have interviewed and grilled our experts on issues that they think were important. 

Louise Martinez:

And it was a lot of fun. I think it’s really important that patients get an opportunity to speak and to voice their concerns because some medical people, they don’t even deal with patients, so they never meet a patient and they never know what’s happening. So, yeah, it was a lot of fun. 

Meera Shah:

Absolutely, I think it’s really important to share our experiences, as you say, with researchers who may never see us because it could inform future research and make them think about what’s important to the patient. The other thing is, when we’re in the clinic, clinicians only see us one to five percent of our time and the rest of the time we’re self-managing at home, all the time. But your clinic appointment’s not enough time to tell you what our daily life is like, and there’s so many little tweaks that could be made to improve our daily lives.

Sarah Gooding:

So what parts of daily life do you think we in the medical and nursing professions are not so good at helping you with? 

Louise Martinez:

I feel very fortunate that I have a very very good medical team at Oxford, but I do know from other support groups that I’m part of that they aren’t so lucky and I think there’s always the risk that you’re just a name and a blood test result and you’re not being looked at as a person and how you’re managing on a day-to-day sort of basis. And I think that’s very different because, you know, I sort of have to manage my day around are there enough toilets in the vicinity and if I do this today will I have any energy tomorrow. Those things are really important and I think they can be missed. So I think having a voice and having the opportunity to speak about that is just really really important on behalf of the patients that aren’t maybe brave enough. 

Meera Shah:

Yeah absolutely, and I think also if you find out about what the patient wants, it might inform personalized care and treatment plans to tailor make it towards the patient. You may have younger patients like me who say that they want to be treated you know aggressively to stay alive for as long as possible to see their children grow up, whereas the average myeloma patient who’s older may choose quality of life over length of life to be able to enjoy their later years, and I think it’s very different depending on the patient that’s in front of you. 

Louise Martinez:

You know those are decisions we have to make every day. Do we want quality of life or do we want quantity, and nobody should be in a position where they have to make those decisions and I think it’s great that the myeloma sort of community medically and other is massively passionate and supportive about finding cures and better drugs but nobody can fight as hard as a patient for it. 

Sarah Gooding:

That’s a very good point. What do you think the issues… we’ve discussed a lot of issues in our Grill an Expert sessions over this conference. If you had to pick one or two that you think are really the most, from a patient point of view, the most pressing issues, what would you pick? 

Louise Martinez:

I thought it was really interesting when Eleanor talked about the psychology and her psychological needs not being met and the honesty of the experts that actually said, you know, that is an area that we aren’t great at in this country, in coordinating the emotional care along with the physical. I think that’s the one that stood out most for me. 

Sarah Gooding:

Okay, that’s very interesting. 

Meera Shah:

I think the question that you asked, Lou, was really interesting as to why some of the newer treatments are not being used as frontline, first-line treatments, and the answers were really honest again and I appreciate those answers that you have to look at safety profiles and weighing out risk and benefit, but if more patients can hear these things at conferences like this or even patient conferences we may understand a little bit more about the decision making that you guys make for us. So yeah it was really interesting. 

Louise Martinez:

You and I will always challenge the decision making. 

Sarah Gooding:

It’s important to have people who do!

Meera Shah:

Absolutely. And then I know I always highlight the point of the unusual younger myeloma patient. You know, we’re still quite few and far between. And services still need to catch up with the holistic care for us to keep us in the workplace, keep us progressing our careers, looking after our children. You know we’re really grateful for all the experts and all the work you do to keep us alive for as long as possible, but we want to live well as well. 

Sarah Gooding:

A lot of the questions and discussions we had were about the holistic care of people with myeloma, rather than just trying to kill all the myeloma cells in their body as well as we possibly can. So there were a lot of discussions about psychological wellbeing; particularly for the women issues around menopause and fertility and support with that; issues around family life and support of the whole family, no matter what that family looks like. And we’re all very busy and we’ve got a lot of work to do and we can do really badly at that stuff, and it’s been brilliant to have those things highlighted to the whole room. It was a very diverse room of myeloma clinicans and scientists and nurses and pharma, and it was great for us all to hear those messages.

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