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Multiple Myeloma Support and Treatment Options

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Published on July 21, 2020

Myeloma Patients Discuss New Treatments, Support Groups and Clinical Trials

In this People are Talking episode, Patient Power host and Myeloma advocate, Cindy Chmielewski, sits down with three multiple myeloma support group leaders: Cindy Ralston, Josine Young and Bonnie Falbo, to discuss the important issues myeloma patients are talking about. The panel share experiences people in their groups have had with new clinical trials and new drug therapies for myeloma.

These myeloma advocates share why they are hopeful for people who have been newly diagnosed with multiple myeloma. They also discuss the benefits of joining a myeloma support group and accessing one-on-one myeloma coaching.

This program is sponsored by Karyopharm Therapeutics. This organization has no editorial control, and Patient Power is solely responsible for program content.

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Transcript | Multiple Myeloma Support and Treatment Options

Cindy Chmielewski:
Hello, everyone. My name is Cindy Chmielewski and I'm part of the Patient Power's Patient Engagement team. I live in Lawrenceville, New Jersey, and I've been living with multiple myeloma since 2008. My journey has had its ups and downs, but, right now, I'm doing pretty well. Today, we will chat with other individuals who are living with myeloma and who are actively involved in the myeloma communities. We're going to be having a roundtable discussion on topics that people are talking about in their communities. But before I begin, I would like to thank our sponsor, Karyopharm.

And now, with us today, we're going to learn a little bit about Cindy, Bonnie and Josine. Let's start with Bonnie. Bonnie, can you take a few minutes to introduce yourself and explain how you are involved in the myeloma community?

Bonnie Falbo:
Okay. I'd be happy to. Thank you for having me, Cindy. My journey in the myeloma community began when my husband was diagnosed with high-risk smoldering myeloma back in March of 2016, and then he became active in September of 2018. During that time, being a research person and having a science background, I was constantly on the internet. I joined multiple Facebook groups. I joined an IMF support group, well, we both did, and I just got very active and very involved in that way. My background, before myeloma, was that I was trained as a physician's assistant and also as a wellness coach. In March of 2019, when Myeloma Crowd created a volunteer myeloma coaching program, I thought that that was the perfect fit for me, and that's the space that I really volunteer in the most at this time.

Cindy Chmielewski:
You're a myeloma coach, Coach Bonnie?

Bonnie Falbo:
The coaching is really about offering a very private, safe space for people to process having cancer and to also identify, for themselves, what it is that they need to know at any given time and to sort through the choices available to them, as opposed to getting advice and being told what they ought to do.

Cindy Chmielewski:
Great. And maybe, later on in the program, you could talk a little bit about how, if someone would like to become a myeloma coach or like to have a coach, how that could be done. I think, later on, we're going to talk about some resources, so that would be a great time to bring that up. Cindy, why don't you introduce yourself and about your involvement in the myeloma community?

Cindy Ralston:
Okay. Back in 1997, I was diagnosed with smoldering myeloma, and I had never heard of the word myeloma, knew nothing about it, and I came across the International Myeloma Foundation online and, back then, the internet was fairly new. And I went to a patient-family seminar down in Florida, and that was the first time that I met actual myeloma patients. And at that point, what you'd find on the internet was five years and you're going to be gone, and so I came back to Kansas City and I said, "I need to start a support group so that I can find other myeloma patients to learn, to share and to grow on this journey together," and so I did. And so I have been facilitating this group since 1997...

Cindy Chmielewski:
Wow.

Cindy Ralston:
... and we have a wonderful group. Last month, we are now having our meetings virtually, but I had 41 people attend our virtual meeting, which was wonderful. The group has continued to grow and I'm growing along with it. That's been my experience. And, not only that, but I have never progressed beyond smoldering, so I think sometimes we are put in the space that we need to be put in, and I enjoy this. Since I retired, it's like a second job for me. It's kept me active. My myeloma family is very near and dear to my heart.

Cindy Chmielewski:
Right. You have a wonderful group. I got a chance to meet them a few years ago and you do a great job with that group. And, Josine-

Josine Young:
Hi.

Cindy Chmielewski:
... can we talk a little bit about your connection to the myeloma community?

Josine Young:
Oh, sure. I was diagnosed October 2014, living with myeloma and living day by day. I am one of the support group moderators for a Facebook group that has almost 10,000 people on it and I was a co-leader for a group, an IMF-supported group, three years ago when it started, but for the last few months, I became the leader. And, also, I'm affiliated with Columbia/Presbyterian in New York City and I am referred to by the social workers to talk to people going through a stem cell transplant and help them through that. I'm in touch with a lot of people.

Cindy Chmielewski:
Collectively, we reach lots of people here, lots of stories, and have probably deep roots in the myeloma community. Suppose someone who's newly diagnosed, they're like the deer in headlights, and they really don't know what to do, they're scared, they're anxious. What do you tell them? What is your advice? What would you tell someone who was just diagnosed about myeloma and about what they should be doing? And, Bonnie, why don't we start with you?

Bonnie Falbo:
I think the first thing I would tell them is that I'm sorry that they're a member of the club, and yet I have very good news for them, that this is becoming, through the magic of science, this is becoming a chronic disease. We're constantly coming out with new drugs, new treatments, and this can be managed and you can have a lot of life ahead of you or something like that. And the most important thing I would tell them is that they do need to find a myeloma specialist, that to get the best care possible and the greatest longevity, they need to see a specialist, and then I'd offer them resources for how to do that. And then I would just ask them what is it that they need right now and then address that.

Cindy Chmielewski:
Good, good, so the need for a myeloma specialist. And, Bonnie, what's your definition of what is a myeloma specialist?

Bonnie Falbo:
Well, you asked the gal who has a very strict definition of one. For me, it is someone who eats, sleeps, lives, researches, writes and deals with only myeloma because the field is constantly exploding. Daily, we get new information. It's quite a strict definition, it's someone who self-identifies as a myeloma specialist, and I know that one resource for finding doctors who are considered myeloma specialists is on MyelomaCrowd.org. They have a link to myeloma specialists. I'm sure the other big foundations do as well, but that is my personal definition.

And I can tell you that, when my husband was first diagnosed, he was diagnosed incorrectly as intermediate-risk smoldering myeloma, and I had stayed up and read enough for long enough that I didn't think he was right, and I said, "We need to go to a myeloma specialist." And we traveled and we did and he was correctly diagnosed as high-risk smoldering. It would have been a very different game had we not done that.

Cindy Chmielewski:
So a myeloma specialist is a doctor who only treats myeloma patients. In the very beginning, I thought the myeloma specialist was the doctor in my local oncology practice that saw all the myeloma patients. I was wrong because that doctor also saw all other kinds of cancer patients. It's a doctor, like Bonnie said, who lives, eats, drinks sleeps myeloma. Okay. Josine, gave you some time to think. What would you tell that newly diagnosed patient?

Josine Young:
Well, I'm remembering we had a gentleman being wheeled into our support group about a year ago, his wife, his children, everyone crying because he was newly diagnosed. And we went around the room and we gave him so much love and support that, a few months later, he had a stem cell transplant, and he comes to our meetings now and he just laughs about it because he really couldn't imagine where he was and where he is. It was pretty awesome to be part of that. It was a miracle, really, watching that.

Cindy Chmielewski:
Good, good. And, Cindy, any words of advice to someone who's newly diagnosed? What would you tell them?

Cindy Ralston:
Well, I get calls all the time, and the first thing I say is, "You're not alone." And I would invite them to come to our support group because I have people who have been living successful lives for the last 20-plus years with multiple myeloma, which is totally different than when I first heard the word multiple myeloma. There is hope. I tell them about the novel therapies that are out there, and I also mention I'm diabetic and, quite frankly, myeloma is going to be just like diabetes in a few years because the researchers, the dedication of these doctors, I know there's a cure right around the corner. It's not an end-of-the-life issue anymore.

Cindy Chmielewski:
Exactly. And I am glad that you mentioned it's important to find support. I think you need to find what is your best type of support, whether it's one-on-one support, a group, maybe a friend or a family member, but support is important, and giving hope, that there is a future. There are just so many more drugs available now than when I was newly diagnosed and there are so many more in clinical trials. That hope is what is really important.

I know, when I attended my first support group, I thought I was going to go into a room where I was going to see all old people with no hair walking with canes and in walkers and just crying on each other's shoulders. That's what I was imagining because this is what a cancer support group looks like. And when I went it, I saw a room full of laughing people, 90% of them had their hair unless they were just now in the stem cell transplant, and they were encouraging me, being able to see that person who was living a good life five years later or 10 years later. And then I remembered listening that it's important to educate yourself because the educated patients have the best outcomes and being part of a support community, or any which other way where you can get that education, will lead you to that point where you could have that best possible outcome.

There's been a lot of new drug approvals in the last couple of, I guess, months or whatever. We now have Darzalex Faspro (daratumumab and hyaluronidase-fihj), a subcutaneous infusion, new monoclonal antibody. I'm not sure how to say it, isatuximab (Scarlisa), is it?

Bonnie Falbo:
Oh, Sarclisa.

Cindy Chmielewski:
Sarclisa.

Bonnie Falbo:
Isatuximab.

Cindy Chmielewski:
Yeah. And Selinexor (Xpovio) and is there anything else I'm missing that was newly approved?

Josine Young:
I have somebody in our support group who started selinexor as part of the BOSTON trial, with bortezomib (Velcade) and dexamethasone (Decadron), April of 2018. He's in stringent complete remission after the first year. He said the side effects were pretty bad, he had to lower his dosage, but he's doing well, thank God. It was his miracle drug.

Cindy Chmielewski:
And, yeah, and selinexor is an oral drug, so that is an advantage there, that people who are having a hard time, especially during the COVID, where you might want to stay out of the hospital as much as you can, to have that as an option. Any other interesting ... even older drugs, anything that's being talked about?

Josine Young:
Well, actually, I'm the only one in our whole support group, we have 25 people meeting regularly, that is on ixazomib (Ninlaro). To me, that was my miracle drug and no one else is on that, so I have no one to share that with.

Cindy Chmielewski:
Yeah. How about clinical trials? Cindy, do you know of anybody in your support group that's been on a clinical trial or-

Cindy Ralston:
Yes. As a matter of fact, we're really excited, one of the gals in our support group, after having two transplants, went into the CAR T-cell clinical trial at KU Cancer Center. And that was in May of 2019, and she's doing fantastic, absolutely fantastic, and so we're excited for her. In fact, we also have a Facebook page for our group that's restricted, and she's doing so well, she's taken over the administration of that for us, and I'm thrilled to death that this is an option that has been so successful at this point. It's a game-changer, I think.

Cindy Chmielewski:
During your support group meetings, is there a lot of discussion as to clinical trials that are available at your medical center or some or ...

Cindy Ralston:
Other than the CAR T-cell, and then there's another one at KU that is for smoldering myeloma patients and, oh, gosh, I can't think of the name of it. I'm sorry. It's escaped me.

Cindy Chmielewski:
That's okay.

Cindy Ralston:
But, anyway, we've got another gal in our support group that is in that clinical trial and she's doing very well as well.

Cindy Chmielewski:
Good. Yeah. I know clinical trials come up quite often in my support group because we're based in Philadelphia and the University of Pennsylvania runs lots of trials. I know that's something that comes up, and we try to help people think about different things they need to consider before they enter a trial, if this trial is right for them. Bonnie, have you coached anyone who was considering a clinical trial?

Bonnie Falbo:
Yes. I've had lots of conversations with people about clinical trials, if they express an interest in it, and there's a lot of myth dispelling to do, a lot of stuff around people thinking there might be an arm with a placebo, which really is not the case with cancer trials, not realizing that they can opt out at any time and not really being clear about what the benefits of it are versus being a guinea pig for the drug company. Sometimes they only see that that might be the benefit, for the pharmaceutical company. My personal bias is that I think it gives you access to the newest drugs sooner than the standard of care, and we know what the standard of care does. It just maintains, at best, at this point, myeloma status. We don't have a cure yet.

My newest coaching client, a sweet young woman and her husband, a young couple in New York City, and she was considering treatment, and we talked about trials and she decided to check it out and then she said, "Wow, I think I'm going to get better care in a clinical trial," right? She's like, "I think I'm going to get more attention paid to me," which I confirmed, since my husband was in a clinical trial. I said, "Yeah, you'll be under a microscope, everything, they will examine about you." And she said, "And I think we'll get more guidance too," which I thought was great. And so she went ahead and joined, so that clinical trial is up and running in New York City, which is exciting.

And I think you all probably know about SparkCures. I am a big fan and, in the interest of full disclosure, I'm on the patient advisory board for that. But I recommend that patients with myeloma go there since it's exclusively for myeloma patients, and you can really learn a lot about clinical trials there, and call them and talk to them and find out what's possible for you and get a deeper understanding of it. That's an area that excites me.

Cindy Chmielewski:
Right. I think the myth dispelling is really important, that in cancer trials, there really isn't a placebo. The other arm is always the standard of care. The only time you're not going to get anything is if the standard care was watch and wait. Otherwise, you would be getting that standard of care drug, and you can drop out at any time and nothing is going to happen to you for doing that. You could still get your cancer care.

Now, since we're all a bunch of support group leaders or coaches or that, why do you think being part of a support community in any way is important? And, Bonnie, let's start with you. Why, since you're a coach, why do you think providing support or reaching out for support is important?

Bonnie Falbo:
Well, I knew we were going to talk about this, so I thought about it, and the two main reasons I thought were, one, and I think you'll all agree, at its best, myeloma is a marathon, right, not a sprint, right? If you do well, and like you've done, Cynthia, you get a long lifespan with it, but you're still living with cancer and there's always that unknown, there's that element. And the other is that myeloma is so heterogeneous. Everybody's myeloma is a little different flavor of ice cream and so you can't usually extrapolate from other people's experience. And I think that, if you're a patient, it's wonderful to have an opportunity to talk to other people about what you're going through, rather than just your partner or your caregiver or whoever that person is for you, and vice versa. If you're the caregiver, it's wonderful to have a place where you can vent what life is like for you without having to put that on the patient. I think there's a lot of support needed, emotionally and informationally, for myeloma patients.

Cindy Chmielewski:
Good. And, Cindy, obviously, you think support was important. You started a support group almost, what, over 20 years ago?

Cindy Ralston:
Yeah.

Cindy Chmielewski:
Why did you think it was so important, at that point, to go out and start your own group?

Cindy Ralston:
Well, number one, it felt so good to see people who really looked wonderful, but were living with multiple myeloma, and that encouraged me. I didn't expect that when I first went to that IMF patient-family seminar for myeloma patients because, when I read about it, I thought, "Oh, this is not going to be good." But I remember sitting at the dinner table and the question was, "Who is the one with myeloma?" because we all looked good. And so that was probably the main reason was it felt good to be with other people that understood what you were diagnosed with, and it also was good to learn and to support each other. I call my members my myeloma family because we really are a family.

And we set up a Facebook page, restricted, of course, for our group, I guess probably four or five years ago, and just the other day, we had a young couple who he has recently been diagnosed with myeloma, they had never had a chance to attend one of our meetings, but, right away, we got her on our Facebook page and she started posting, "This is where we're at. Here's a picture of the room that my husband will be in. Have I got everything? And another thing, did you," for an example, "go with your husband or your wife to their appointments when they were having their transplant?" And the different ones feeding back and talking, giving her advice and giving her comfort to know, "You're not alone. We are with you and, whatever you need, we're here to support you."

And so it took a while for that Facebook page to really click in, but, boy, recently, I just thank the Lord for it because we've got more and more people signing up and, especially when we're not meeting together, it's a wonderful way to keep in touch in between and, if they have a problem ... I had another lady call me recently, and her mother-in-law is a patient of Dr. Abdallah at KU and she lived down in Branson, Missouri. And, in February, she and her husband were driving up to Kansas City to see Dr. Abdallah and they were involved in a very terrible accident. Her husband was killed and she has been, from February up until three weeks ago, she's been in the hospital recovering. And so she can no longer live by herself, so her daughter-in-law has brought her here, and she said to her, "What can I do to make your way a little easier?" And she said, "I just want to talk to somebody who knows what I'm dealing with."

I hooked her up with another patient in our group. She's now on our Facebook page. She's now getting all of our emails. And so that's the benefit of the support. You may never have met these people, but you can reach out through technology, through the phone, through your computer, and you can be there for them, and that's the strongest thing I can say, is you can be there. They're not alone.

Cindy Chmielewski:
Right. And someone who's walked in your shoes and I think that was, when I first joined the support group, that was the benefit. The people there were my people. They were my tribe. They knew what I was going through because they went through it themselves and I thought that was important.

Let's talk just a little bit about, if someone out there is listening to this show and wants to find a support community and they really haven't found one, Josine, can you talk a little bit about maybe some of the Facebook communities, how you go about finding a myeloma community on Facebook, are they public, or anything about Facebook and support communities?

Josine Young:
Yeah. Oh, definitely. On Facebook, there's about a dozen, more than a dozen, different support groups. You just have to go to the search engine and Google it. Start with multiple myeloma, whatever. There's groups under 50, there's groups that are caregivers, there's all kinds of groups.

Cindy Ralston:
I might also add, Cindy, Smart Patients is a wonderful site for people to get support.

Cindy Chmielewski:
Right. And most of these groups are private groups or groups that are not public, so people don't know that you're a part of the group. Many times, there are screening questions that need to be asked so that the people that are part of these online communities feel comfortable talking to each other and, if there's people in the community that is there just to sell their t-shirts or whatever, they quickly get kicked out of those communities because they're there to support each other.

Bonnie, can you talk a little bit about if someone wants to find a coach, if they don't feel comfortable. I know there's still people who do not feel comfortable on social media, my husband being one. He's social media agnostic. He doesn't belong to anything. How can you find a coach then, if you want to be a more one-on-one situation?

Bonnie Falbo:
Okay. Well, first, I want to say I think it's wonderful if people take advantage of all these opportunities, if you're in a Facebook group and you have a myeloma support group and you have a coach. You don't have to choose, unless you're so inclined. To me, the more, the better. But if you're interested in learning about coaching and finding a myeloma coach, just go to MyelomaCoach, all one word, dot org. And that is the website and you will see the banner across the top. You can go find a coach, become a coach, and just select that from the dropdown menu and proceed from there. And there are people looking for coaches every day and there are a lot of us with different areas of expertise.

Some people offer financial information support. There's a lot of need for that. Some people focus on clinical trials. Some people focus on relapsed to refractory. I tend to work more in the smoldering and newly diagnosed and maintenance space because that's where we are. It's really easy. It's really easy to find a coach. And the thing is, you also don't have to select one person. You can have multiple coaches and have a number of relationships. I coach somebody who really enjoyed talking to me and I thought it was going really well and, at the end of it, she goes, "Yeah, but you don't have myeloma," right? She goes, "I think I want to talk to somebody who has myeloma," and I said, "I think you should. I think that makes perfect sense," and so just to let people know that that's available to you.

Cindy Chmielewski:
Great. And besides the myeloma coaching program, there are other ways of reaching out, getting that one-on-one help. I know that the LLS, the Leukemia and Lymphoma Society offers its First Connection program, which is a one-on-one mentoring program. 4th Angel is another mentoring program, where there's mentoring not only for patients, but there's caregiver mentoring in the 4th Angel program. And Emily's Angels also offers a mentoring program. With those, you call up the organization and they seem to match you up with a mentor instead of you choosing one, but that's another option.

Bonnie Falbo:
Yeah. And there's another new, I'll say newer, one. The Multiple Myeloma Research Foundation has Myeloma Mentors. That’s through their website and sign up. I don't know the exact process of how you get matched with someone, but that's another avenue for having one-on-one support and connection.

Cindy Chmielewski:
There's lots of ways of getting that one-to-one support. This is something we'd like to talk about a little bit today, the virtual meetings, not only with our support groups, but maybe the virtual meetings that we're having with our doctors, and maybe there are some advantages to them, some disadvantages to them. Cindy, since you mentioned that to begin with, why don't you talk a little bit about how that came about and how it's working?

Cindy Ralston:
Well, the IMF contacted me and presented this option to keep our support group healthy during this time of COVID-19, and, at first, I was like, "Oh, boy. Technology, that's just not my bag." But they have been wonderful in educating myself and my co-leader, and so we've become quite proficient at GoToMeeting and I'm really proud. We are just getting ready for our fourth virtual meeting, and I think it's growing each time. Like I mentioned, last month, we had 41 people. Now I will also add to that, we had the myeloma specialist from the University of Kansas Cancer Center speak, and one of the questions that came up was, "What do you think about telemedicine?"

And Dr. Abdallah said, "I think it's okay for somebody that maybe is living in western Kansas and has to come in. I would much rather talk to them via telemedicine than have them drive all the way in and possibly subject themself to being exposed along the way. But, normally, for people close by, I prefer to see them. I want to look them in the eyes. Sometimes I see things that you don't always see." And he said, "Many times, people on telemedicine will say, 'Oh, I'm doing fine," and in reality, if I look them in the eye, I can tell that they're not doing fine." That was his opinion.

Cindy Chmielewski:
Okay. Good. Josine, I know that you had some reservation in the beginning about doing a virtual support group. Has your group gone virtual at all and how did that work out?

Josine Young:
Yeah, yeah. In a couple weeks, we'll have our fourth meeting virtually. The IMF was wonderful because, like Cindy was saying, I was so confused. I said, "I can't do this," but it really worked out well, and a nurse educator from Janssen is going to be our next speaker. I'm excited about that.

Cindy Chmielewski:
And what platforms are you using for your virtual support group meetings?

Josine Young:
It's called GoToMeeting. The IMF pays for that.

Cindy Chmielewski:
And it sounds like the support groups are pretty into joining in those meetings. I know we've been having virtual meetings too. Do you think that, when we are back to our new normal and that maybe we can meet in person again, I don't know when that will be, but I'm sure that will be some time, do you think that there'll be the GoToMeeting option available to people that may not be able to go to meetings?

Cindy Ralston:
I would really hope that, through this experience, we would be able to combine the in-person meetings along with the virtual meetings. I don't know how that's going to look, but I have people that live way out in middle in Kansas, they can't come to our meetings, or they may live in southern Missouri, they can't come. And so if we could somehow or other continue part of that relationship, it would enhance our meetings, especially if we're having a special speaker because, to me, education is paramount with these groups. People are hungry for it.

Cindy Chmielewski:
Right. Josine, how about-

Josine Young:
I would tend to agree. A combination would be awesome for people who can't come in for whatever reason.

Cindy Chmielewski:
Yeah, that was always one of my passions is to find a way to create support groups for people in geographically isolated areas, so maybe this has helped us move forward in that idea. Now, Bonnie, you don't lead a support group but have you had virtual meetings with the people that you've coached or with doctors or ...

Bonnie Falbo:
Yes. That is how I do all of my coaching is either by phone or video. I just wanted to go back to the support group thing for a moment because I did lead a small IMF support group a while back and, in our area, it is very, very small, and very few people could attend in person and it ended up petering out. And I think, if we had used video meetings at that time or if we started it up again, I think we could get that up and going again because sometimes people were just too sick or it was too far to travel in this rural area. Yeah. But, back then, we didn't think of that really as an option.

Now as far as the coaching goes, I think there are some coaches who coach in person if they happen to live in the same town as the coachee, but I'm out in Afton, Virginia, outside of Charlottesville, so I'm pretty rural. And what I find is that, since everybody lives by Zoom or Skype or FaceTime now, people are more comfortable with it. It's more abnormal to see somebody in person now. It's like, "Look! You're three-dimensional." We're all just so used to seeing each other on these screens. That hasn't really changed, I think, except for the comfort level. And then Dan and I have a few myeloma specialists. None of them live near us. They're all at least a day's journey away.

Cindy Ralston:
Oh, wow.

Bonnie Falbo:
Oh, yeah. Not having to drive, not having to pay for lodging, not having to pay for pet-sitting, and not having to wait in a waiting room for hours for your appointment, which you know is going to be hours late, and just being in the comfort of our own home, we love it. Now we wouldn't want to do it every single appointment, we'd love to meet with them in person periodically, but it's a real gift to us to be able to connect with them virtually and we find it works well.

Cindy Chmielewski:
Great. Yeah. I know I had a meeting with my myeloma specialist right at the end of March, and I was just so hesitant because I didn't want to have to travel into Philadelphia not knowing what situation I was in, and I was so thankful that I didn't have that choice. They made it a virtual meeting and, at that time, I think everything that I needed to discuss was fine doing it via the camera. I was stable. It was just a consultation. It was just a follow-up. I had my blood work and labs done ahead of time, so the numbers were there to be reviewed.

Yeah, I would like to have that option in the future, if it was just a consult, to be able to schedule a virtual meeting, but I do agree there probably are times where you really do need to see the doctor or, Cindy, like your doctor said, even though you don't think you need to see the doctor, the doctor wants to see you, because you might be saying, "Oh, I'm doing fine, no problem," and they look down at your ankles and they're swollen with edema, and you have a rash on your arm, but you're doing fine, and those are things that may not be able to be detected when we see each other from the chest up. Josine, have you had any virtual meetings?

Josine Young:
Yes, I've had four telemedicine's and I've been loving it too. Staying out of New York City is what I want to do. And I go the week before for my blood labs and, so far, so good, it's working well.

Cindy Chmielewski:
Great. Okay. Let's move on to a different topic of what people are talking about.Information overload, is there any such thing as having too much information? Is there too much Googling? Are there too many second opinions? Are there too many webinars you're watching? I know, right now during COVID-19, it seems like I could be watching a webinar about COVID-19, about multiple myeloma, about anything, two or three times a day. All the annual meetings, the ASCO meeting, ASH, not ASH, but AACR, and EHA, they're all doing virtual meetings and they're dividing them up a long time. I could be sitting here at my computer all day long learning.

Josine Young:
Yeah, this is true.

Cindy Chmielewski:
I know I just have to stop after a while. It was just, for me, an overload. I had to take a step back and sort out what it is that I wanted to hear at the time, and I knew many of those things were being recorded and that, when I was ready, I could listen to it. How about you guys? Do you feel there's such a thing as information overload or second and third opinion overload? Bonnie, can we start with you?

Bonnie Falbo:
Well, I'm guilty. I'm a research freak, so it's hard for me to stop, but my husband was really helpful with that actually. He was a great coach for me, because I'm always the queen of, "Let's get another opinion. Let's get a second opinion. Let's get a third opinion." And he said, "Well, what's going to make it a special opinion as opposed to just another opinion? What's going to make it the opinion?" And I, really, I had to stop. I was like, "Okay. That's a really good question." When do we have enough information? When do you just say, "I'm where I need to be?"

I just want to tell a little anecdote with that. I have a coaching client and she just came through one of the hardest decisions of whether or not to do a stem cell transplant, and I'm sure you've all talked with people about that. And she had an appointment for a second opinion, but she finally made the decision, with her first specialist, that she was going to do it. And she called me and she said, "I am so at peace for the first time in months because I've made a decision and now I'm just going through my checklist and moving forward." And she said, "But I talked to my girlfriend and she said I should keep that second opinion appointment because it's going to create cognitive dissonance for me and that's going to help me question my assumptions."

Josine Young:
Woo! Look at these words.

Bonnie Falbo:
I listened and I said, "When we started the conversation, you said that you are at peace."

Cindy Ralston:
At peace.

Bonnie Falbo:
I said, "Do you want cognitive dissonance?" And she went, "No! Hell, no. I'm canceling that appointment." I think it's great when you have somebody that knows the disease and understands the vastness and the heterogeneity of it, who can help you realize when you've gathered as much information as there is. You need to know yourself, how much more can you listen to, what are you going to make your decision based on, what is it about yourself that is going to be a deciding factor for you and what exactly is it that you're looking for out of more information? Do you want to hear the same thing again and again? Are you looking for a new nugget? What would you do with it if you got one?

I love this whole question, but I definitely think that we can wear ourselves down, run ourselves in circles and just end up missing life by constantly seeking out the information instead of enjoying the moment and all the good stuff that we have in the day.

Cindy Chmielewski:
So it was okay that I didn't listen to all those annual meetings live for 24/7?

Bonnie Falbo:
No, there's nothing you can't hear again.

Cindy Chmielewski:
That's what I thought. I wanted to enjoy life at that point. But, Josine, how about you? Do you think there's such thing as information overload, too much information, too many opinions?

Josine Young:
Oh, totally. Coming from where I was, I was in crisis mode at diagnosis, so I never even heard a doctor tell me that I had cancer. We didn't seek a second opinion. I didn't have a choice of a stem cell transplant. Overload is overload. I know what you mean because, every time I would get an email, I'd send it on to my support group just to say, "This is being offered. You could watch this. You could do that," but I'd say, "I would just watch it minimally or when I was ready to watch things like that."

Cindy Chmielewski:
And, Cindy, can you weigh in on this information overload, opinion overload?

Cindy Ralston:
Well, at times, if I'm listening to a webinar, I can be on overload because the names of the drugs, the tests, it's more than my little unscientific brain can handle. And what I like, though, is you can go back and replay them, and then maybe the more you hear things, the more it sets in. And, Bonnie, I love what you said about that woman being at peace. Once you reach that point of being comfortable with your decision, then just know, go with your gut and go with it. We all have our limits.

Cindy Chmielewski:
And I think we should end with that, being at peace. I think that's what we all want to do is be at peace with our decisions so we would need to know when we have enough to reach that point where we're happy with what we've decided and we know that we made a knowledgeable decision.


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