Myeloma Archives - Myeloma Patients Europe

IMS President Philippe Moreau previews this months IMS Annual Meeting

Adam Davenport — Wed, 02 Sep 2026 08:36:10 +0000

Myeloma Patients Europe (MPE) is attending and presenting at the International Myeloma Society (IMS) Annual Meeting taking place in Glasgow from 23–26 September 2026. The meeting, attended by over 3,000 delegates from around the world, features presentations on the most important data and topics in myeloma.

MPE recently interviewed IMS President and member of the MPE Medical Advisory Committee, Prof. Dr. Philippe Moreau, to understand his perspective on the importance of the meeting and patient advocacy involvement.

What do you most look forward to about attending IMS?

There is an extraordinary amount happening in myeloma today. New treatment approaches are producing deeper and more durable responses, and we are now having serious scientific conversations about cure that would have been difficult to imagine not long ago. Bringing more than 3,000 people together from around the world with a shared purpose of learning from one another and advancing the field is what makes the IMS Annual Meeting such an important gathering.

In your opinion, what are the key topics and data that will be presented at this year’s meeting?

The scientific programme reflects just how quickly myeloma research is advancing. We will see first findings from phase II and III studies, longer-term data from major clinical trials, and continued progress in immune-based therapies and treatment strategies. The plenary programme is especially exciting – it includes research that could inform frontline treatment, maintenance, relapsed and refractory disease and long-term outcomes. We will also continue the discussion around cure: how we define it, measure it and make it achievable for more patients.

Investigators increasingly view the IMS Annual Meeting as a key venue for presenting important new data. The meeting brings together experimental scientists, translational investigators and clinical physicians to discuss how important laboratory findings transition into next-generation clinical trials. The cutting-edge research presented represents the future of myeloma care. Ideas for clinical trials and new advancements in medicine are developed inside our meeting halls.

Our joint sessions with stakeholders including European Hematology Association (EHA) and patient organisations – including MPE, International Myeloma Foundation (IMF), Multiple Myeloma Research Foundation (MMRF), Myeloma UK and Myeloma Australia – also allow us to examine progress from different perspectives.

Why do you think having patient organisations on the agenda at IMS is important?

Patients are at the heart of everything IMS does. Scientific progress is most meaningful when it remains connected to the priorities, experiences and needs of the people we are trying to serve. As a global organisation, IMS brings together clinicians, researchers, regulatory experts, patient advocates and other stakeholders from around the world. Having patient organisations on the agenda ensures we hear firsthand about the priorities and challenges facing patients across different countries and health systems.

It also allows patient advocates to learn from one another and build stronger relationships across borders, helping ensure advances in research. Clinical care and policy remain connected to what matters most to patients.

What are the next steps for IMS working with patient organisations?

Patient organisations have long been partners to IMS, particularly in advocacy and consensus-building. As the field advances, we want to deepen those relationships and incorporate patient perspectives early when developing recommendations, considering policy priorities and defining outcomes that matter in patient care, including quality of life.

The next step is not simply to bring more patient organisations into the conversation, but to create more opportunities for meaningful collaboration. We want to strengthen connections among patient organisations, clinicians and researchers and ensure that progress in myeloma translates into progress patients can see and experience.

The 23rd Annual Meeting of the International Myeloma Society (IMS) takes place from 23-26 September, in Glasgow, Scotland.

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EMA committee recommends teclistamab plus daratumumab for relapsed or refractory multiple myeloma

Ana Vallejo — Fri, 03 Jul 2026 12:28:59 +0000

On 25 June 2026, the Committee for Medicinal Products for Human Use (CHMP) recommended extending the approved use of teclistamab (Tecvayli®) to include its use in combination with daratumumab for adults with relapsed or refractory myeloma who have received at least one prior therapy.

The CHMP is the European Medicines Agency’s (EMA) committee responsible for evaluating medicines and making recommendations on whether they should be approved for use in the European Union. A positive recommendation from the CHMP still requires formal approval by the European Commission before it can be implemented, a process that typically takes a few months.

Teclistamab is a bispecific antibody that helps the immune system recognise and destroy myeloma cells.

The CHMP recommendation is based on the results of the phase III MajesTEC-3 study, published in the New England Journal of Medicine. The study showed that patients treated with the combination of teclistamab and daratumumab lived longer without their myeloma getting worse compared with those receiving standard treatment. Watch below a patient-friendly video explaining the study, its results and its implications for clinical practice.

If approved, this would be the first authorised treatment combination in the European Union to combine a bispecific antibody with daratumumab for the treatment of myeloma.

Following any European Commission approval, availability will also depend on national assessment, pricing and reimbursement decisions in individual European countries.

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Myeloma EHA 2026 preview

Adam Davenport — Mon, 01 Jun 2026 14:27:54 +0000

The European Hematology Association (EHA) 2026 Annual Congress, the largest haematology event in Europe, will take place from 11–14 June in Stockholm, Sweden. The congress will bring together experts from across the globe to present the latest advances in haematological diseases, including myeloma and AL amyloidosis.

Myeloma Patients Europe (MPE) will be attending EHA to keep the patient community informed about key developments in treatment and care. Throughout the event, we will share real-time updates via our social media channels (LinkedIn, Facebook, Instagram, X and YouTube), including expert video interviews and key highlights from the scientific sessions.

MPE will also participate in various parts of the congress programme, including the satellite symposia, the EHA-Patient Joint Symposium and poster sessions. Make sure you are following us to receive real-time updates during the events.

Key research in myeloma and AL amyloidosis at EHA 2026

The EHA 2026 scientific programme includes many abstracts on myeloma and AL amyloidosis, covering both established and new treatment approaches. While this article won’t summarise all relevant research, these are the presentations which we believe will be of greatest interest to patients and the wider myeloma and AL amyloidosis community:

Many presentations will present positive results of bispecific antibodies in myeloma, including:

Teclistamab: results from the phase III MajesTEC-9 clinical trial show the benefits of teclistamab monotherapy compared with standard of care combinations in patients with relapsed or refractory myeloma.
Teclistamab and daratumumab: analyses from the phase III MajesTEC-3 clinical trial demonstrate the efficacy of teclistamab plus daratumumab across high-risk subgroups of patients with relapsed or refractory myeloma.
Talquetamab: results from the phase III MONUMENTAL-3 clinical trial show the benefits of talquetamab plus daratumumab with or without pomalidomide compared to a combination of daratumumab, pomalidomide, and dexamethasone in patients with relapsed or refractory myeloma.
Infection prevention with BCMA bispecific antibodies: results from a retrospective, real-world study show that primary prophylaxis (treatment before any infection occurs) with immunoglobulin-replacement therapy improves survival in patients with myeloma treated with BCMA bispecific antibodies.

There will be several presentations dedicated to CAR T-cell therapies for the treatment of myeloma, including:

CB-011: early results from the phase I CAMMOUFLAGE clinical trial show the safety and preliminary efficacy of the allogeneic anti-BCMA CAR T-cell therapy CB-011 in patients with relapsed or refractory myeloma.
Arlocabtagene autoleucel: an updated phase I clinical trial results show promising safety and efficacy of the GPRC5D-targeted CAR T-cell therapy arlocabtagene autoleucel in patients with relapsed or refractory myeloma who received 1 to 3 prior lines of treatment.
BMS-986453: preclinical and early clinical development data showing the potential of the dual-targeting BCMA andGPRC5D CAR T-cell therapy BMS-986453 in patients with relapsed or refractory myeloma.

The treatment of newly diagnosed myeloma patients will also be addressed in several presentations, including:

Daratumumab + VRd: final analysis from the phase III CEPHEUS clinical trial confirms previously reported efficacy and safety results demonstrating the benefits of adding daratumumab to the bortezomib, lenalidomide, and dexamethasone treatment combination in transplant-ineligible patients with newly diagnosed myeloma.
Iberdomide + DVd: phase I/II results from the IDEAL clinical trial show the safety and efficacy of an iberdomide-based quadruplet regimen with daratumumab, bortezomib, and dexamethasone in patients with newly diagnosed myeloma.

Smouldering myeloma treatment will also be covered, with a few presentations, including:

Elranatamab: first results from the phase II EMN34/ERASMM clinical trial show the safety and efficacy of elranatamab as a promising early intervention strategy in patients with high-risk smouldering myeloma.

Several presentations will focus on AL amyloidosis treatment, including:

Anselamimab: results from the phase III CARES clinical trial show a survival benefit of adding the amyloid depleter anselamimab (also known as CAEL-101) to standard treatments in patients with newly diagnosed stage IIIa and IIIb AL amyloidosis.
Linvoseltamab: early efficacy and safety results from the phase I/II LINKER AL2 clinical trial show promising results for the BCMA bispecific antibody linvoseltamab in patients with relapsed or refractory AL amyloidosis.
Etentamig: safety and efficacy results from the phase I clinical trial confirm previously reported promising results for the BCMA bispecific antibody etentamig in patients with relapsed or refractory AL amyloidosis.

MPE at EHA 2026

MPE will attend EHA 2026 to gather the most important updates on myeloma and AL amyloidosis and other key advocacy topics such as access to treatment and quality of life for patients. In particular, MPE will participate in the following sessions:

MPE board member, Snežana Doder, will share patients’ perspectives on treatment access during the session “Inequalities in drug access in lymphoid malignancies (multiple myeloma)” co-chaired by MPE President, Barbara Leonardi on Sunday, 14 June.

MPE Head of Patient Research, Eilidh Duncan, will speak about shared decision-making and patients’ perspectives on treatment administration routes during the satellite symposium “Individualisation Requires Communication: Working With Our Patients With Newly-Diagnosed Multiple Myeloma (NDMM) to Optimise Treatment Outcomes”, which will take place on Saturday, 13 June.

MPE Head of Medical Education and Scientific Engagement, Solène Clavreul, along with Scientific and Data Strategy Lead at TriNetX, Zuzana Dostálová, will present the results of MPE and TriNetX’s collaborative research on real-world eligibility and treatment decision factors, alternative treatments and outcomes of myeloma patients considered for CAR T-cell therapy in Germany in the poster session on Friday, 12 June.

MPE Head of Patient Research, Eilidh Duncan, will present the results of MPE’s research on real-world experiences of family carers supporting people with myeloma in the poster session on Friday, 12 June.

With so much data being presented, EHA 2026 promises to be an exciting meeting for the myeloma and AL amyloidosis community. MPE looks forward to sharing insights and analysis throughout and in the weeks after the event, including our EHA highlights webinar.So, be sure to follow us on all our channels for full coverage and register for our upcoming webinar!

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Join our EHA 2026 highlights webinar

Adam Davenport — Fri, 08 May 2026 13:09:17 +0000

To help patients and advocates digest the most important myeloma news from the European Hematology Association (EHA) 2026 Annual Congress, the largest haematology event in Europe, Myeloma Patients Europe (MPE) will host a webinar on Tuesday, 30 June at 17:00 CET.

At this webinar you can expect clear explanations of the key research updates and what they could mean for patients. You’ll also hear expert insights and have the chance to ask any questions you may have using Zoom’s Q&A Function.

Whether you’re a patient, carer, or advocate, this webinar will help you stay informed and increase your understanding about the latest advances in myeloma treatment and research.

The session will be led by Sweden’s Dr. Johan Lund.

Meet the speaker

Dr. Johan Lund is a senior consultant and affiliated researcher at the Department of Medicine at Karolinska Institutet in Stockholm, Sweden. His publications focus on hematology, particularly multiple myeloma, stem cell transplantation, cellular therapies and immunotherapy. He is affiliated with both the Hematological and Solid Tumors research group and the Cell and Gene Therapy research group at Karolinska Institutet. He obtained a PhD from the Department of Medicine, Huddinge, Karolinska Institutet, in 2016.

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Highlights from the Myeloma Cure Summit

Adam Davenport — Wed, 25 Feb 2026 15:52:45 +0000

Myeloma has always been an incurable cancer which is becoming increasingly chronic with treatment advances and access. Whilst the community remains cautious talking about myeloma as a curable cancer there is optimism amongst industry experts.
The Myeloma Cure Summit was an event organised by the International Myeloma Society in Miami, Florida, USA from 20 – 21 February 2026. The meeting was attended by myeloma specialists from around the world, as well as more than 1,000 online attendees, to discuss, debate and begin to reach consensus on defining a cure in myeloma. The meeting included sessions on long-term follow-up studies, where some patients had very long remissions, patients who might be curable, lessons from other cancer areas, the potential therapies that might lead to a cure, and more. 

Why are we talking about a cure in myeloma? 

Dr. Sagar Lonial, Emory University Cancer Center said: “We have never been in a better position to talk about the topic today, than we are right now. There is a fundamental difference in our field now than 10 years ago, 20 years ago.” 

The myeloma treatment landscape has changed dramatically over the last 20–25 years leading to improved survival rates. Targeted therapies like proteasome inhibitors (like bortezomib and carfilzomib), immunomodulatory drugs (like lenalidomide and pomalidomide) and monoclonal antibodies (like daratumumab and isatuximab) have transformed care. More recently, immunotherapies like CAR T-cell therapies and bispecific antibodies have shown unprecedented response rates, including in heavily pretreated patients. Today, for many patients myeloma is a long-term manageable condition, and some patients are living so long without relapse that talking about cure becomes possible.

Can we currently cure myeloma?

It depends on how we define cure. Myeloma is a cancer that evolves over time and can develop treatment resistance. Whilst patients have long remissions, even if myeloma cells are undetectable (with sensitive tests such as minimal residual disease [MRD] testing), it does not mean they have been completely eradicated and that myeloma will never come back. Very late relapses can still occur. There are documented cases of relapse after long remissions (after 10 or even 20 years). Moreover, many patients will remain on continued treatment, which often comes with side-effects and impacts on quality of life. If disease control depends on treatment, can this be defined as a cure? Some physicians also prefer using the term “functional cure” with the disease being still biologically present at some microscopic level, but no longer causing symptoms or disease progression, nor impacting life expectancy. They consider the patient to be in a prolonged remission.

Currently, if some patients might be cured and survival keeps improving, it is not the case for many patients. Talking about cure might raise false hopes and physicians are very cautious about using the term “cure”. Additionally, even “cured” patients might remain at high risk from infection and therefore need long-term supportive care to manage it.

How are the experts potentially defining a cure in myeloma?

During the meeting, a consensus was reached and a definition of a myeloma cure was proposed. It was defined as patients who are in complete and sustained remission and are MRD negative (meaning no myeloma cell is detected in a sample of 1 million cells), confirmed by functional imaging like PET/CT scans or MRI, for a continuous period of 5 years, without any treatment.

Which patients could potentially be cured?

Considering the proposed definition of a cure, experts think a fraction (i.e. proportion) of patients (5 to 30%) are currently cured. This “cure fraction” varies depending on the type of treatment, patients’ age (advancing age was associated with lower cure fraction) and disease risk (higher risk disease might be associated with lower cure fraction). These numbers are obtained with treatments used 10 years ago. Experts predict higher numbers with current treatments.

What treatments might help a cure? 

Experts presented different strategies that may lead to a cure. For example, using different existing treatments in a sequential manner to attack myeloma in different ways without causing drug resistance, using T-cell engaging therapies (or optimized version of them) like CAR T-cell therapies or bispecific antibody combinations, and using most efficient treatments as early as possible.

How is the patient voice being considered in the definition of cure?

A session of the meeting was dedicated to hearing patient voices. Dr. Vania Hungria, who works with the International Myeloma Foundation (IMF) in Latin America, stressed that the patient definition of a cure is not the same as the physician’s. She insisted that patients value being able to return to normal life, free from constant uncertainty, and able to move forward without the disease dominating their daily thoughts. She presented the results from a survey conducted on behalf of the IMF and the Grupo Brasileiro de Mieloma (myeloma patient group in Brazil) online from 11-15 February 2026. 267 Brazilian myeloma patients answered the survey which confirmed the importance of stopping treatment and not worrying about relapse. Two US patients now in long-term remission and considering themselves cured also shared on stage their diagnosis and treatment stories and answered questions from physicians. They presented their own definition of a cure: being well, having a normal life again, without treatment, and not dealing with side-effects.

What are the next steps?

Increasing the cure fraction will rely on improving access to novel therapies and their availability to large numbers of patients, optimising efficacy and safety (especially related to infection risk) of existing and new treatments and establishing fixed treatment durations. The definition of cure is expected to evolve.

The full content of the consensus will be soon published by the organisers of the meeting in a peer-reviewed article.

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#FacesOfMyeloma: Zvika’s story of living well with myeloma

Adam Davenport — Tue, 24 Feb 2026 16:24:23 +0000

Zvika’s journey with myeloma began sixteen years ago with monoclonal gammopathy of undetermined significance (MGUS). Over time, it progressed to smouldering myeloma, and eventually to myeloma. He’s experienced a wide variety of treatments from clinical trials to a stem cell transplant and emerged with unexpected insights about what truly matters.

The internet doesn’t tell the whole story, use trusted sources

When first diagnosed, Zvika turned to the internet for answers.
“At first, the information online was discouraging. But today I have a much better understanding of advanced treatment and how to manage side effects, gained through experience.”
His treatment journey is a long one and has included VRd treatment (a mixture of bortezomib, revlimid, and dexamethasone), a daratumumab clinical trial, some experimental treatment with mezigdomide, a stem cell transplant and now a dual bispecific antibody therapy.
The gap between those early internet searches and his current reality taught him an important lesson: statistics don’t capture individual experiences or the rapid advancement in myeloma treatments. Zvika finds it important to stay up to date.

Discovering community

One of Zvika’s most significant discoveries was the myeloma patient community.
“I didn’t know about the incredible community. I discovered this warm, loving community of patients who have become true partners in this journey. They make the difficult moments much lighter.”
He now volunteers at AMEN, the Israel Multiple Myeloma Association, supporting other patients and using his Research & Development background to help with technical projects.

Caring for body and soul

Through his journey, Zvika learned that fighting myeloma isn’t just about medical treatment.
“I wish I had realised the importance of giving myself space. I learned that to help my body fight, I need to care for my soul by reducing stress, staying positive, and maintaining moderate physical activity.”
This led to a job change, with Zvika leaving his high-stress role as a Vice President.
“I didn’t know that leaving my high-stress role would lead me to a path of giving and helping others. Today, I feel a sense of fulfilment I never expected.”
By reducing stress and redirecting his energy toward helping others in the myeloma community, Zvika found deeper purpose and a more positive outlook.

Words of wisdom

Looking back at sixteen years—from MGUS to active disease, through clinical trials, transplant, and now bispecific therapy—Zvika’s message is clear:
“You are not alone and there is a meaningful life beyond the diagnosis. Care for your soul, not just your body—reduce stress, stay positive, stay active – trust your medical team as genuine partners.”
For Zvika, myeloma led him away from high-stress work and toward a life of giving and supporting others. It’s a path he never expected, but one that has brought profound fulfilment.

Check out our Faces of myeloma series to read more stories from patients and carers around Europe.

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#FacesOfMyeloma: Kayleigh’s story of living well with myeloma, as a carer

Adam Davenport — Tue, 24 Feb 2026 16:10:20 +0000

When Kayleigh’s husband was diagnosed with myeloma in October 2020, everything changed overnight.

The couple are from Basingstoke, UK, about an hour from London. They both worked together in a shopping centre, meaning they are on their feet all day interacting with the general public. Martin’s symptoms began as a bad back—something Kayleigh initially dismissed—and spiraled into a life-changing diagnosis.

“He had a bad back for about four to six weeks. I thought, you know, you’ve probably just seized up. You’ve not been moving—carry on.”

But it escalated quickly. During COVID-19 lockdown, what seemed like a simple long-term back problem revealed itself as a collapsed vertebrae and four other spinal fractures. He was almost paralysed.

Their diagnosis experience

“We’d gone out for his birthday and his legs kept giving way, which he later admitted had been happening for a while. He couldn’t feel anything from his waist down.”
An emergency MRI and several consultations revealed the myeloma diagnosis. Kayleigh already had some knowledge of myeloma—as unfortunately her aunty had passed away from it a couple of years earlier. Because of this unfortunate experience, she immediately feared the worst. “I went into a bit of a meltdown after.”
In those early days, her aunt’s short experience with myeloma weighed heavily. “My mind went straight to that place—this is not a good place to be. I would never have connected a bad back to blood cancer.”
But this became her most important lesson: “Part of me wishes I didn’t know about myeloma from my aunty’s experience, but it did make me very much understand that every patient is different and everyone responds to treatment differently. It takes a while to accept that, but it’s crucial.”

Overnight transformation

After three weeks apart, Martin in hospital and her at home, discharge defined her new reality.
“I drove to hospital as his partner and left as much more—doctor, nurse, carer, cook, partner and much more. They wheeled him out, we wedged him in the car with his back brace. The nurse gave me carrier bags of medication.” The medication covered their kitchen counter. “I was so worried I would give him the wrong thing.”

Learning and living

They kept the diagnosis private initially. She spent early weeks reading everything on the Myeloma UK and Blood Cancer UK websites. “I wanted all the information I could get hold of to make the best decisions for us as a couple. I didn’t want to leave all the decisions in the hands of someone else.”
Treatment went well, mentally we broke it down week by week. “If you think it’s six months, to me, that feels overwhelming. But if you just focus on the next two weeks you are living more in the moment and appreciate the little wins much more.”
COVID meant she couldn’t visit during long hospital stays. “This may sound selfish, but that was good for me. It would have affected me more had I seen him as poorly as he was. So I would say it’s good to spend time away from hospitals and think of your own wellbeing, at times”
He achieved remission and returned to work in April 2022. “That first day back to normal, I felt like I’d let my child go to school. Prior to that, I had control over everything. Now he was in a shopping centre with thousands of people daily. I’d lost control, which was hard initially.”

The carer’s reality

After 12 months, she sought counselling. “I was really struggling with anxiety, mainly around infection risks. The trauma runs deep.”
Now she runs a support group for carers. “When people come in, they say, ‘I thought I was the only person that felt like this.’ But we are all have much in common.”
One reflection that probably affects all carers: “People would always ask how Martin was. But I’d think to myself, no one ever asks how I am? We’re going through this as a couple, in completely different ways.”
She quotes Jamie Theakston, a famous radio presenter in the UK, who said: “’I wasn’t diagnosed with cancer. My family was diagnosed.’ That is so right. You do get diagnosed as a family. You are all affected.”

Words of wisdom

Five and a half years in, her main reflection: “Everyone is so different. Don’t focus on the negatives or the issues that other people went through. Just because something happened to one person doesn’t mean it will happen to you. I wish I’d believed that as much at the beginning and just realised that this is your own individual journey.”
And crucially her key advice for a carer is to take time to look after your own well-being: “If I’m not in a good place, I’m no good to Martin. You have to take time out for yourself.”

Check out our Faces of myeloma series to read more stories from patients and carers around Europe.

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#FacesOfMyeloma: Maria’s story of living well with myeloma

Adam Davenport — Tue, 24 Feb 2026 15:03:43 +0000

Maria is Greek-Australian and moved from Sydney to London with her adult daughter. A former research centre director, she had always lived an active, independent life. Three years ago, at the age of 64, Maria began experiencing lower back pain. It wasn’t until she went on holiday and was forced to return home in a wheelchair that X-rays revealed a substantial lesion in her pelvis, along with multiple other lesions. She was diagnosed with high-risk myeloma. “I’d never even heard of myeloma before,” she admits. “But once I started researching, I felt hopeful,” Maria says “There were options. There was a way forward.”

Project Maria: taking control

Maria and her daughter quickly encountered a challenge familiar to many people diagnosed with myeloma: the emotional and physical exhaustion of constantly updating friends and family, while trying to preserve energy for treatment and everyday life. Her daughter created Project Maria, a WhatsApp community group. “My daughter would send weekly updates to our family and friends around the world. It removed that burden from me and allowed me to focus on living my life, rather than constantly talking about my illness.”

Taking ownership through health and nutrition

Following a stem cell transplant and further treatment, Maria went into remission. Three years on, she continues monthly treatment and takes an active role in supporting her health, especially through nutrition, movement, and self-awareness.

Each month, Maria carefully reviews her blood results and responds to what her body needs. “If something shifts, I adjust my diet with more nourishing foods, more support,” she explains. “Do I know exactly how much difference it makes? Maybe not. But what I do know is that it gives me back a sense of control and that’s empowering.”
This proactive mindset also extends to movement. At her weakest, Maria could barely manage 500 steps a day and relied on a walking stick. Today, she regularly walks 10,000 steps along the river. “To me, that feels miraculous.” She’s adapted her movement practices too choosing gentle qigong and tai chi over more demanding yoga. “I listen to my body now. I choose what supports me and what brings me joy.”

And joy remains non-negotiable. Maria still plays the piano, meets friends for lunch, attends the theatre, galleries and travels across Europe, while taking sensible precautions to protect her health. “I wear a mask. I avoid crowded pubs. But I won’t stop doing the things that make life meaningful.”

Mental wellbeing and self-compassion

Mental wellbeing is just as important to Maria as physical health. Meditation and journaling, habits she’s practised for decades, help her manage the mental and emotional aspects of living with myeloma. “I allow myself to feel anxious the night before treatment,” she says. “The rest of the month, I don’t think about it and live my life. Anything can happen at any time and I’m not going to live in fear.”
She has also learned the value of self-compassion. “Everything doesn’t have to be perfect every day. It’s okay to rest. It’s okay to say no.”

Words of wisdom

“I know it might sound strange, but in some ways this has been a blessing. I’m more empathetic, more positive, and I worry less.” She reflects.

“Taking ownership of your health through small, manageable changes gives you back control. And that’s empowering. And don’t forget to look forward. Instead of focusing on relapse, I focus on my next trip, enjoying time with loved ones, the next outing. Every day is a gift and I’m living with a deeper appreciation for life.”

Check out our Faces of myeloma series to read more stories from patients and carers around Europe.

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#FacesOfMyeloma: Sandra’s story of living well with myeloma

Adam Davenport — Tue, 24 Feb 2026 13:59:41 +0000

Sandra, 50, lives in Belgrade, Serbia. She’s a mother to two teenagers and worked as an interpreter until recently.

“I worked long hours,” she recalls. “Sometimes ten, twelve hours on my computer. Sometimes sleepless nights.”

Listening to your body: the diagnosis journey

At 48, Sandra developed fatigue, headaches, and anaemia. Like many women approaching fifty, she dismissed these as perimenopause.

Her GP prescribed supplements, but symptoms worsened. “Every day I woke up more tired. I couldn’t focus or be as active as I was used to.”

After visiting multiple specialists, a nephrologist told her there was something serious and she needed professional medical care.

More than a year later, a haematologist diagnosed stage three myeloma in late 2023.

“After a year of searching, it was a relief to know,” she says. “My doctor called a spade a spade. I appreciated that honesty.”

A mother’s lesson in mental resilience

Despite intensive treatment, the first two lines of therapy showed zero improvement. High-dose melphalan and a tandem stem cell transplant finally worked.

Sandra’s approach to mental wellbeing is deeply influenced by her mother, who lived with a heart condition for thirty years, going to emergency departments at night then continuing with life the next morning.

“I treat it as just another event in my life. It’s your life—live it to the fullest.”

Adapting and staying active

Sandra is now retired. Managing infection risk is her biggest challenge.

“I travel by car with my family to Serbia, Montenegro or Croatia for my holidays—not by plane or a train with too many people.”

She exercises at home and outdoors along the Danube River. She’s taken up new hobbies, like knitting and gained new perspective.

“Life is even better now in some ways. You start appreciating every day, every breath. Your priorities change—the essential things become important. Little things we deemed important before no longer matter.”

Advice for wellbeing

For women approaching fifty, Sandra’s message is clear: “Try to listen to your body. Don’t dismiss persistent symptoms.”

Her final thoughts turn to gratitude: “I’m amazed and grateful for the scientists and medical experts who developed these treatments. They are saving my life and the life of so many others. Thank God for them.”

Check out our Faces of myeloma series to read more stories from patients and carers around Europe.

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MPE response to EMA consultation on their “Reflection paper on patient experience data (PED)”

Ana Vallejo — Tue, 03 Feb 2026 14:55:41 +0000

Last week Myeloma Patients Europe (MPE) submitted a response to the European Medicines Agency (EMA) open consultation on their “Reflection paper on patient experience data (PED)”. PED refers to data from patients that includes their perspectives, preferences and experiences with different aspects of their disease and treatments, such as quality of life and risk tolerability,

You can read the MPE full response to the consultation here.

MPE, as a member of the EMA Patient and Consumers Working Party (PCWP) and as an organisation regularly involved in EMA activities and assessments, welcomed the opportunity to comment on this paper. The declared purpose of the document is to “encourage systematic consideration of PED in medicine development programmes and regulatory submissions” by setting up general principles on the use of PED, as well as main types and main sources of such data.

While MPE appreciated the paper for bringing PED into focus as part of a wider effort to have patient involvement in medicine regulation as an active, meaningful, and holistic process, it also identified a series of recommendations to strengthen these efforts:

More clarity is needed on how PED can and should be used in EMA decision making.
A stronger emphasis is needed on the importance of PED to EMA decision-making and stronger language incentivising industry to generate and utilise this data.
The reflection paper should better address the challenges brought by the new EMA and EUHTA approaches to conflicts of interest (CoI).
We would like to see clearer avenues set out on how patient groups seek advice from EMA on PED, how we submit it, what the EMA want to see from patient organisations and how it could be taken into account.
Specific guidance is needed on how carers are and should be included in PED.
Clearer examples and best practice case studies are missing from the text and should be highlighted.

The comments received during this public consultation will be reviewed by the EMA and the final version will be adopted by the Pharmacovigilance Risk Assessment Committee (PRAC) and the Committee for Medicinal Products for Human Use (CHMP).

Another consultation currently open at the EMA concerns Patient Preference Studies (PPS) and the value that patients place on characteristics of drugs. The consultation will be open until 12 April 2026. MPE intends to respond to this as well.

Please see the full text of the comments submitted by the MPE on the PED guidelines.

If you have any comments please message info@mpeurope.org.

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