A session with expert Mohamad Mohty, myeloma nurse Sarah Henshaw, and patient advocates Jack Aiello, Cindy Chmielewski and Jim Omel, who discuss myeloma from the patient’s perspective, highlighting challenges during the pandemic.

Welcome to The Myeloma Sessions brought to you by the Video Journal of Hematological Oncology (VJHemOnc)! This exclusive roundtable session features expert Mohamad Mohty, myeloma nurse Sarah Henshaw, and patient advocates Jack Aiello, Cindy Chmielewski and Jim Omel, who discuss myeloma from the patient’s perspective, highlighting challenges during the pandemic.

 

Experience during the pandemic

“I’m part of many online patient communities, so I felt the fear there and people were just locking themselves in the house, choosing to skip appointments, not knowing whether or not they should be even going into hospitals.”
– Cindy Chmielewski

“We very quickly had to adapt to our clinics so that patients didn’t come into hospital face-to-face consultations. So, we switched over to telephone virtual consultations and even video consultations in areas where technology was available to be able to do this.”
– Sarah Henshaw

 

COVID: Making lemonade out of lemons

“We’ve had experience that we know that microRNA works if we can find the tumor antigen that is really specific to what we’re trying to attack. We know that messenger RNA can be used to attack that antigen and form successful antibodies. All of the money that was spent in research in this COVID infection translates into effective research for tumor cancer vaccinations.”
– Jim Omel

“So, a lot of our patients, obviously, during the pandemic have been having their telephone reviews with the doctors and then, their drugs such as lenalidomide, pomalidomide, thalidomide have all been delivered at home from pharmacy through private courier systems and that’s had a massive change to quality of life for patients because they’re not having to sit and wait in pharmacy.”
– Sarah Henshaw

 

Role of the patient & research advocate

“All of us sit on advisory boards to pharmaceutical companies, we talk about their protocol and what we like, and what we don’t like, and why there needs to be so many bone marrow biopsies, or just like you said, does dexamethasone have to continue forever and ever and ever.”
– Cindy Chmielewski

“It’s imperative for us, even if we’re not being treated or on some type of maintenance, it’s imperative to keep up with the current research and being able to share those results with patients, but also, take those factors into consideration when looking at new concepts that might ultimately become trials from the beginning through that process of activating trials.”
– Jack Aiello

Watch the full session
Full Transcript

Mohamad Mohty:
Okay. Hi, everybody. My name is Mohamad Mohty. I’m a Professor of Hematology at the Sorbonne University and Saint-Antoine Hospital in Paris in France and it is my great pleasure to welcome you all to this wonderful broadcast, which we call like, sort of a post-COMy discussion. For this post-COMy, as you all know, this has been the 7th International Congress on Controversies in Multiple Myeloma, which has been really a fascinating, amazing event a few weeks ago. As part of this congress actually, the special awards went to patient advocates and we’re glad having Mrs Cindy Chmielewski, Mr Jack Aiello, Dr or Mr Jim Omel who are joining us on behalf of the patient advocates. I’m also very honored having Mrs Sarah Henshaw who got the nurse’s award on behalf of the nurses, and this is for the amazing and huge work that has been done for the benefit of multiple myeloma patients across the globe during this COVID-19 pandemic. So, thank you all for taking the time and for joining, and thank you for accepting to share your experience.

Mohamad Mohty:
My first question and we’ll do it in a very classical manner, so ladies first. And I’ll start with the most senior lady, Cindy. As a patient advocate, maybe you can share your experience with us during the COVID-19 pandemic.

Cindy Chmielewski:
It was really, really scary being a myeloma patient and a myeloma patient advocate during the pandemic. In the beginning, we really just didn’t know what to do. I’m part of many online patient communities, so I felt the fear there and people were just locking themselves in the house, choosing to skip appointments, not knowing whether or not they should be even going into hospitals. I remember particularly one of my friends who was enrolled in a clinical trial. She had to travel from North Carolina to New York, and she had this horrible decision to make: do you go on a plane in the middle of a pandemic into New York City where it was the height of the pandemic, or do you risk your spot in the clinical trial? And luckily, all the companies, the FDA, everyone worked very, very quickly to make those types of modifications.

Cindy Chmielewski:
But, we were scared, you know. We just didn’t want to go out of the house. But we were very thankful, too, because from the very, very beginning, the doctors, the myeloma doctors would come and advise us almost on a weekly basis on what was happening. What should we be doing? Is it okay to eat groceries that we bring in from the outside? Shall we- just everything. So, we were thankful to have those updates from the various organizations: The Myeloma Crowd, the MMRF, Patient Power, the IMF. Everyone chipped in and, you know, tried to keep us as up to date as possible.

Mohamad Mohty:
Jack, do you share the same experience? Any thoughts on the last few months?

Jack Aiello:
I do. I think we all went through the kind of the same thing that Cindy mentioned. One of the things I do is facilitate our large San Francisco Bay Area Myeloma Support Group meeting where we meet monthly. We would have typically 50 or 60 folks, myeloma patients and caregivers, attend our meetings. But through the International Myeloma Foundation, the IMF, they were quick to provide us with resources to be able to conduct these meetings virtually, whether the resource is something called GoTo meeting and subsequently became Zoom. And so, we never missed a beat. Since March of 2020, we’ve been conducting our meetings virtually. We just had one this past Saturday, 14 months later. We had 70 folks attend our meeting virtually this past Saturday and we had a great speaker.

Jack Aiello:
And one of the things I find with the virtual meetings is that I’ve invited doctor, myeloma specialist from different states – New York, Arizona, Florida – have all been accommodating and able to speak to our groups on a Saturday morning, our time. And it’s worked out well to a point where I pooled our group, and I said, “If you only could do one, which would you continue to do? Virtual meetings or go back to person-to-person meetings?” And about two-thirds of them selected virtual meetings. So, we’ll probably do a combination of those going forward. So COVID has certainly had an impact on our support group meetings.

Mohamad Mohty:
Well, yeah. I think this is really amazing. You’re highlighting something which is really important. And one may wonder how could we have done it 20 years ago or 25 years ago without all of these IT, digital tools. Because, obviously, we’re all missing the in-person contact, but actually the interaction, the connection went rather well and the communication continued despite the hard time and I believe that has been really crucial to all patient.

Mohamad Mohty:
Jim, what’s your perspective and your experience over the last few months?

Jim Omel:
Thank you, Mohamad. My experience is certainly very similar to Cindy’s and Jack’s. My reaction to COVID was just like Cindy, it was fear. Just total fear that this virus, which was so unknown to humans, could infect all of us so silently and quickly. Most of my support group felt the same thing. We have been meeting monthly for many, many years. We had to go to a virtual meeting, as Jack has explained, and it was certainly new to us. We had a lot of help from the IMF to run those meetings.

Jim Omel:
But back to the fear factor, COVID is especially bad for hematologic patients. Our immune systems are at risk anyway and then this horrible disease is just frightening. Vaccination in the United Sates has certainly helped us a lot. Unfortunately, heme patients don’t always mount a good antibody response, but still many of us do, we’re feeling better than we felt many months ago. Personally, I had to literally give up Christmas. We didn’t even meet as a family, and I had to experience my father dying in a nursing home and I couldn’t get in to see him. So, COVID was real, it was frightening. And finally, the weight of this horrible infection is starting to lift from the United States and hopefully the rest of the world.

Mohamad Mohty:
Yeah. Thank you, Jim. I’m really very grateful and we feel privileged having this discussion because you’re tackling really the most difficult part of this pandemic where, about fear, about losing the loved ones. I really feel sorry for what you have to go through, and many patients and colleagues, and friends, and unknown people went across the globe.

Mohamad Mohty:
And I think you’re highlighting something which is about the immunosuppressed myeloma patient. Unfortunately, intrinsically the disease is characterized by a status of immunosuppression. And I think everybody would agree that we teach medical students every day that multiple myeloma increases the risk of opportunistic infections and so on. But then also, all our therapeutic interventions, especially the use of dexamethasone, are increasing this immunosuppression. This is why we have to admit that multiple myeloma patients have paid the high price of this pandemic. And when we look through the scientific literature, whether you consider publications from the United States, from the UK, from Italy, from Spain, from France, well, the numbers were roughly the same. Exactly the same, plus or minus 1%. The numbers were exactly the same, and this has been really very sad.

Mohamad Mohty:
So, from the nurse’s perspective, Sarah, I think you’ve been extremely active. You’re based in the UK. You’re very active with Myeloma UK, but also in general and you’ve been active for many years. And I think your reaction after the first days of the pandemic has been announced have been quite amazing to try to protect and defend the patients. So maybe you can give us a sort of a summary of how did you handle this, Sarah?

Sarah Henshaw:
So, I think my presentation when I was accepting the award, I included the slide that showed the increase in activity of nurse specialists generally with email contact, telephone contact of the patients. And it went through the roof within the UK during our three lockdowns. Also in the UK, our government had this habit of changing criteria. And then getting that information out to the patients and making sure they understood what they were meant to be doing from the point of view. Should they be isolated? Should they be going to work? Were they advised to work from home and making sure that we would keep you up to date with the information to be able to give that to the patients was very difficult within the first few months of the pandemic?

Sarah Henshaw:
And I think Myeloma UK within the UK, which is the equivalent of the IMF, were absolutely brilliant. They very, very quickly updated an area of their website that was specifically generated for COVID information for UK patients to access, to keep up to date with all this information. As healthcare professionals we did that too. I think one of the things that we very quickly had to adapt to was we had a group of vulnerable patients, as all of my patient colleagues here have just explained, that we’re frightened of coming to the hospital because of the infections. So, we very quickly have to adapt to our clinics so that patients didn’t come into hospital face-to-face consultations.

Sarah Henshaw:
So, we switched over to telephone virtual consultations and even video consultations in areas where technology was available to be able to do this. That was quite difficult to start off with because historically in myeloma – I’m sure Mohamad will agree with me here – clinicians and nurses have been very much in the habit of seeing people face-to-face to be able to assess symptoms and they feel more accurately assess symptoms face-to-face. So, we had to adapt the way that we assess patients, particularly from the pain assessment point of view.

Sarah Henshaw:
One of the things that we started to use a little bit more heavily is something called MyPOS Questionnaire, which is a myeloma-specific patient outcome score. So, it’s self-reported by patients and they can report all their symptoms and they can think before the telephone appointment with the consultant or with the nurse or the pharmacists or whoever was calling them about their symptoms over the last few weeks leading up to that appointment. So, it helped people to actually group together how they were feeling before their telephone appointment because we all know what it’s like. You go to clinic. You see your doctor. As you’re walking out the room, there’s usually something that you go, “Didn’t mention that”. And so, you turn around, you go to sit back down in the chair and talk to the doctor about that’s hard to do over the telephone, so it’s nice to have that structure beforehand. So that’s some of the things that we developed quite quickly and changed.

Sarah Henshaw:
The other thing, as my patient colleagues have mentioned, is the support group. The support group was a massive thing during the pandemic and the patients really relished that and needed the support of the healthcare professionals at the hospital. So, we also quickly switched over to virtual Zoom support groups so that we could still have face-to-face contact in the virtual setting to be able to offer support. And I must admit, the attendance of the support group went up because of the virtual consultation rather than the face-to-face that we had in one of our Maggie’s centers, which is a cancer center that we have in the UK where you could go for free for a cup of tea, and things like that.

Sarah Henshaw:
So yeah, there was quite a few things that we changed at the beginning of the pandemic and it was a massive learning curve. The only way I can describe it is back when I first started in my post as myeloma nurse specialist 14 years ago, that was a huge learning curve, and it was the exact same learning curve at the start of the pandemic for us to get to the stage that we’re at now where patients are feeling more comfortable and confident about their reviews, their treatments, whether they’re having treatment, whether it’s being paused, et cetera.

Mohamad Mohty:
No. This is really amazing. Thank you so much for these great efforts and for developing these tools. Obviously, you mentioned the great work of Myeloma UK. We mentioned the IMF. But I’m aware that many other myeloma advocacy groups, whether in France, the AF3M in Belgium, MIMU in Finland, in Croatia, in Saudi Arabia, in Israel, we have also the MMRF in the US, many state-based support group, a group in Lebanon. I had a huge list of contacts, and everybody did really an amazing job translating documents, sharing, you know, some advice, sharing the right advice, or I would say a reasonable advice. Because as you mentioned, all of you in the beginning, we didn’t know anything. We had to just dive in this pandemic like sort of in a blinded fashion and try to empirically guess how to behave, and so on.

Mohamad Mohty:
So Cindy, from a practical point of view, maybe you can share with us today after 14 months or 15 months of the pandemic, what are your, you know, what are the good and bad things, I would say? Any message here? Any project you would like to set up based on the learnings from the pandemic?

Cindy Chmielewski:
Yeah. You know, you always have to make lemonade out of lemons. In the beginning, it was hard to do. It was hard to see anything good about the pandemic. But as time went on, I really think we have some learnings that we can do. Just like Jack said, you know, having that virtual option for support groups is a wonderful thing. Now that we have that structure in because even post-pandemic, if we return or when we return to in-person groups, I’m sure all of us will have virtual options for those patients who can’t travel, who are too sick to travel, or just don’t have the transportation.

Cindy Chmielewski:
I also think, you know, some of the safety protocols that hospitals have instituted, and everyone has instituted, you know, sanitizing, even on the airplanes, I think some of those protocols are going to continue into the future. I was amazed at how quickly we were able to give out important information. Like, you know in this age of technology, it was important. I still worry about the patients who have myeloma who are not technologically savvy. Those are the patients that are really isolated and by themselves, and maybe didn’t benefit from some of the things that were happening. That’s always been my goal, and the future is to build on what we have, but to try to reach those populations that are hard to reach, these hard-to-reach populations because they were hard to reach during COVID too.

Mohamad Mohty:
Isolation and feeling lonely and abandoned is really a terrible feeling. And I think, Jack, you alluded to this, to the important impact of support group and staying together. What kind of request would you receive, or you have received? What are the things that you know, people, fellow patients shared with you and how did you react to this?

Jack Aiello:
So, one of the things that’s occurring here in the States, and maybe in Europe as well, is that several organizations are doing antibody tests for cancer patients, specifically myeloma patients to see whether the vaccine is effective or not. And so, I know I’ve gone through those tests and a number of my friends in the support group have gone through the test and one of the requests I get is, “What the heck do these results mean?” that they’re getting. They get a number or not a number, and, or just a negative or a positive and what to do with the results? And I don’t think doctors, let alone patients, know what to do with the results these days.

Jack Aiello:
So I’m looking forward to getting a better understanding of the efficacy of the vaccine. I’m fully expecting there to be booster shots, not only for the general population, but especially for cancer patients so that we need to keep our eye on the ball in terms of when these become available, and to make certain that we put as much priority in getting those as we have in getting the vaccine. So, I think it’s a continuing thing. I thought what was fascinating when Cindy talked about- we’ve learned to be a little bit more careful about washing hands and even wearing masks that the cases of flu went way down this year as a result of that. And I think as a society, we’ve learned more about how important it is to keep our hands clean and washing, and such. So, I think there will be lasting effects from this whole episode with the vaccine, er, with COVID.

Mohamad Mohty:
So I think, of course, it can take us hours and hours to discuss the vaccination issues, the implications, how does it work and how can we make it better? I think my message as a physician is definitely all patients need to get vaccinated. That is the general recommendation. I do not have any preference for this vaccine or this other vaccine, or this brand. Just take whatever vaccine is available. Obviously, there is some uncertainty about how a myeloma immune system would react because we know the immunosuppressive status of multiple myeloma. Nevertheless, there can be only benefit, I think, of the vaccine.

Mohamad Mohty:
And here I think Jack, you alluded to this positive aspect. We learned that by just following some cleaning, washing-hands rules, we can decrease the incidence of the classical annual flu. And I think we had also other learnings and I’d like to hear from you Jim, whether you share the same experience. We have, for instance, decreased the dosage, or even discontinued dexamethasone for many patients. We have even extended the delay between two infusions of antibodies. And actually, we didn’t see dramatic or bad reactions. I know you are also a physician. So, is this something positive we should take from COVID and rethink our therapeutic strategies? And maybe, for instance, when it comes to dexamethasone, try to get rid of this high dosage, which is a source of many side effects and patients are really struggling with these side effects?

Jim Omel:
I don’t think you’ll find too many patients that will be against lowering their dexamethasone dosage schedule. I am going to add on to your question, or respond to your question to Cindy, about the good and bad things that have come through the pandemic. And one of them that is extremely exciting is that RNA technology can now be used in cancer treatment. We’ve had experience that we know that microRNA works if we can find the tumor antigen that is really specific to what we’re trying to attack. We know that messenger RNA can be used to attack that antigen and form successful antibodies. All of the money that was spent in research in this COVID infection translates into effective research for tumor cancer vaccinations.

Jim Omel:
We know, for instance, that as we have new products that come forward, they will be tested as vaccinations instead of gene therapy evaluations, which is a huge thing with the FDA. We’re much more like to get approvals for vaccination testing than gene-therapy type testing. So, that’s a big outcome of the COVID. MicroRNA technology has, for cancer, has really been going on since the 1990s. The biggest problem is how do we get that antigen into the body without it immediately being killed, because microRNA is very fragile. But the lipidization of these small little proteins have really revolutionized protein injection therapy or vaccination therapy. That’s going to work with cancer vaccines. So, I have a lot of optimism about new immunization for cancer as a result of this horrible COVID.

Jim Omel:
As Cindy said, it’s turning lemons into lemonade and the future is quite bright. As you said, Mohamad, unfortunately myeloma patients don’t always mount a good immune response. If you think about it, myeloma is technically a cancer of the immune system itself. We’ve talked about it being a blood cancer and a bone marrow cancer, but it’s also a cancer of our immune system. We’re not out of the woods with COVID, especially myeloma patients. Things are better, but we can look at things optimistically, not only for COVID, but also for cancer treatment in general because of immunization therapy.

Mohamad Mohty:
I fully share your optimism message and feeling, Jim, and I think what’s really fantastic about this pandemic, let me use the word fantastic, is that it has shown all of us that we are able to react very quickly and find solutions. And actually, all the research efforts and I have heard – I don’t know if it’s true or not – that every eight minutes there is a new COVID-19 paper being submitted. So, this is really fantastic. Then, this is allowing to accumulate a body of knowledge that maybe and hopefully we would not needed for COVID because hopefully we’ll get rid of it at some point, but all of this accumulated knowledge actually will serve as a basis to build the future generations of immune therapies and vaccinations. And this is really amazing.

Mohamad Mohty:
So, I believe we have the short, the mid and the long-term. But for the mid-term, Sarah, for instance, from a practical point of view with your patient, what are the things that now – and I think the UK is doing rather well in terms of vaccination and in terms of easening the lockdown, which is great news and hopefully, this will happen across the globe – so what are the things that actually you will not do anymore as before because actually COVID proved to you that you can do it differently, and this is better?

Sarah Henshaw:
I could be really funny here and say actually come to work. I’d like to work from home more because that’s one of the positives to me, isn’t it? Coming out of the pandemic, we’ve realized, and I think in a lot of professions, that actually home working is possible. You don’t have to be going into the office all the time. So, I think that is something that many areas will take forward from the pandemic. Personally, from within myeloma, the clinic setting is going to change massively. We would definitely not go back to 100% face-to-face consultations where it was before. Our clinics that we have twice a week had 60, 70 patients in one clinic and 40 patients in another clinic and that will not happen again. It will keep, we will keep patients on telephone review that are suitable for telephone review.

Sarah Henshaw:
The downside of complete telephone review and virtual and keeping people away from the hospital I feel is the actual face-to-face contact that all human beings actually crave and need to be able to live. I think there will have to be a really fine balance between just because you’re at that stage of your myeloma, you’re having a telephone consultation against actually I want to come to the hospital, I want to see my doctor, I want to see my nurse, for that to be able to carry on.

Sarah Henshaw:
Another thing that I would hope will carry on into the future, and this will depend on finances of it, will be medicine delivery at home. So, a lot of our patients, obviously, during the pandemic have been having their telephone reviews with the doctors and then, their drugs such as lenalidomide, pomalidomide, thalidomide have all been delivered at home from pharmacy through private courier systems and that’s had a massive change to quality of life for patients because they’re not having to sit and wait in pharmacy. So, they’re the two main things I hope goes forward, that’s positive from the pandemic.

Mohamad Mohty:
Fantastic. Thank you so much. I can share the same feeling, for instance, when it comes to telemedicine and phone consultation. There are many patients, at least for me, in Paris where, you know I would say, “Well, okay. If you don’t really need to see me, I don’t want to spend three hours in the traffic jams coming to the hospital” and this is huge in the quality of life. Spending two hours with your grandchildren rather than struggling with the traffic jam. It has no price. I think it would be very difficult to assess the value of this.

Sarah Henshaw:
Absolutely.

Mohamad Mohty:
So, I’d like to spend the last few minutes on talking about something where I know you are all very active. It’s not only about patient advocacy group, but you are research advocates. And I would like to hear from all of you, to explain to everybody because I’m not sure everybody is familiar with the concept of being a research advocate for patient. To try to define, to explain this, and to highlight your actions to the wider myeloma community and patients. Cindy?

Cindy Chmielewski:
Well, I have to give Jim credit because he was the one who told me that I wasn’t just a patient advocate, that I was a research advocate and he told me to make sure that whenever I introduce myself, I introduce myself as a research advocate. And to me, a research advocate is that group of patients who enjoy learning the science. They enjoy sitting in the scientific meetings and learning what is happening, even though we’re not scientists. I’m a 5th grade teacher, but I was always a science geek.

Cindy Chmielewski:
So, now that I have this understanding of the science and the classes of drugs, and how things work, not just for me, but for most patients in general. Now, I can provide that patient perspective when it comes to developing clinical trials. When it comes to looking at an informed consent form, I sit on IRB, I read the informed consent forms and I say, “This is not in patient language”, or “This is not what a patient will understand”, or “Put a chart in here”. Or when we sometimes, all of us sit on advisory boards to pharmaceutical companies, we talk about their protocol and what we like, and what we don’t like, and why there needs to be so many bone marrow biopsies, or just like you said, does dexamethasone have to continue forever and ever and ever. All of us sit on some of the steering committees for the NCI or groups where we look at the research, but we look at it from a patient perspective. And we have to be able to be willing to speak out loud, even maybe when our ideas might not go over so well with the group of doctors there. Yeah.

Cindy Chmielewski:
So, I think a research advocate first needs to know basic science, what’s available, but then live and be part of that patient experience. And one last thing is, as a research advocate, you have to present the global patient perspective. I can’t just go in and talk about things that I think are good for me. I have to go in and realize what’s happening in the myeloma community and where the unmet needs are, and advocate for that group of myeloma patients who may be out of options, or who are, what’s the word, not allowed in clinical trials because they don’t meet eligibility criteria that maybe could be changed. So, I speak for those people who can’t be there to speak for themselves.

Mohamad Mohty:
Fantastic. Jack, your take home message?

Jack Aiello:
Well, Cindy certainly provided a very thorough, complete answer to your question. I guess what I would add for me personally, I got involved – Jim helped get involved as well – but so did the IMF when they were supported for the first time, I think 15 years ago, to bring some patients to ASH, American Society of Hematology Conference. And I was selected to go, and I was blown away by the presentation of these clinical trial results and all that went into it. Fortunately, I was asked to then join SWOG, and I became part of NCI. I’m part of CIBMTR in Stanford. All have given opportunities to, again, provide that patient perspective that Cindy referred to. It’s imperative for us, even if we’re not being treated or on some type of maintenance, it’s imperative to keep up with the current research and being able to share those results with patients, but also, take those factors into consideration when looking at new concepts that might ultimately become trials from the beginning through that process of activating trials and such. So, I cherish my role as a patient research advocate and really appreciate the opportunity to be one.

Mohamad Mohty:
So Jim, now I know that you are the father of this concept of patient research advocate, and we owe you this because this is really amazing. So, where do you want to take this concept further, actually?

Jim Omel:
Thank you, Mohamad. I’m extremely proud of Jack and Cindy, and also Yelak, the other award winner who couldn’t be with us today. All of us really-

Mohamad Mohty:
Do we say hello to Yalek? We are missing him.

Jim Omel:
Hi, Yalek. We’ve all put in so many hours in this and really are committed to it. I don’t have a lot to add to what Cindy and Jack have already mentioned. But I will say that we do act as intermediaries. We represent patients, but we also represent the research. And we try to explain to both of these entities the thoughts of the other entity. As Cindy said, there are things that our research might want such as an extra bone marrow. But we have to tell them that patients will not accept that. Jack’s comment and Cindy’s about are input into clinical trials, as I, as Jack has been on the SWOG, I’ve been on the Alliance Committee, Myeloma Committee, and my goodness, I’ve watched clinical trial development take two to three years before a trial ever becomes real. Patients don’t realize the amount of time and effort that goes into research, that they’re not even, they’re not even a part of it, they don’t even see. They just see the tip of the iceberg of here’s a clinical trial, but they have no concept of how much that researchers and cancer research advocates have put into the development of that iceberg.

Jim Omel:
One thing that Cindy also mentioned is that we are committed to keeping up. We stay current and it’s a job of ours. I’ll bet you every day, there’s not a day that all of us don’t think or do something related to myeloma research and increasing our knowledge base. We are committed to doing that. Unlike other advocates, we don’t fundraise. We don’t do some of the community involvement that maybe other advocates do. Cancer research advocates really are committed to the science of cancer.

Mohamad Mohty:
Yeah, and this is about dissemination and spreading knowledge. So, Sarah, from a nursing perspective, how do you view this active role of the patient when it comes to research? Because it’s not only about the research performed by physicians and doctors, but there is also a very important nursing science and research.

Sarah Henshaw:
I think patient input at any trial setting, whether it be a trial setting at looking at drugs and how effective drugs are, or whether it be a qualitative piece of research that it’s looking at how patients feel during the pandemic, or how patients feel during end of life, care things like that, it’s really important to have patient input at the start of the setting of the trial. As Cindy and Jack have said, they’ve been advocates. They’re involved in the setup of trials. They talk to the clinicians. They actually say to the clinicians, “That’s a silly idea”.

Sarah Henshaw:
And Jim’s right. Sometimes, some of the trials when they setup they do ask for a lot of bone marrows. And sometimes, it needs somebody in the trial set up phase to actually go, “Why do we need that bone marrow just there. They’ll have only had one 6 months prior, is it really important to be doing all that frequently?” And that is really important. And I think one thing that’s important about research is also real-world data that’s coming out after drugs have actually been approved and are being used. And I think then patients should be involved as local hospitals started to look at the real-world data of drugs, efficacy of them, and how they impact on quality of life. Because I think Cindy alluded to it, not every patient is eligible to go into a clinical trial because sometimes it could be something like their renal function is too poor for them to be able to go on to a trial study and that’s a big group of patients that’s being excluded from these drugs. And then all of a sudden, they get approved for use in general practice, and then they can have those drugs. You know, how does that then impact on that patient? This is really important. I think they need to be involved in the setting of qualitative, quantitative and real-world data.

Mohamad Mohty:
Well, thank you very much. I really personally feel blessed today having this discussion with all of you. I believe, I mean, while listening to what has been said, it’s like actually an orchestra. Every member of the orchestra needs to play the instrument, the right instrument in the right way. And putting all these together will allow to deliver this fabulous symphony. And this is about improving the outcome, improving the survival and hopefully curing the majority of the multiple myeloma patient. And I think I would to thank you all for participating, for sharing your experience, your thoughts for the future, your current perspectives, and future perspectives. But also, I’d like to say a word to think that we think about all the patient and their families who suffered, and maybe are continuing to suffer during this COVID-19 pandemic. We think of you. We feel with you. And hopefully things will improve, and we can be reunited all together. Wherever you are, please stay safe and keep well. Thank you very much.

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