The “A Day in the Life” podcast from the International Myeloma Foundation features messages of hope and resilience for myeloma patients, caregivers, and their loved ones. This episode features an interview with Jack Aiello, a 26-year multiple myeloma survivor, father of 3, and grandfather of four. Jack is also an active facilitator of the Multiple Myeloma Support Group for the San Francisco Bay Area, a Patient Advocate, and has served on many myeloma committees that focus on developing clinical trials, including for the National Cancer Institute, SWOG Cancer Research Institute, BMT Clinical Trials Network, and Stanford’s Scientific Review Committee.

Transcript

Host: You’re listening to a “A Day in the Life” podcast, brought to you by the International Myeloma Foundation. Today, we are talking to Jack Aiello, a 26-year multiple myeloma survivor, father of 3, and grandfather of four. Jack is also an active facilitator of the Multiple Myeloma Support Group for the San Francisco Bay Area, a Patient Advocate, and has served on many myeloma committees that focus on developing clinical trials, including for the National Cancer Institute, SWOG Cancer Research Institute, BMT Clinical Trials Network, and Stanford’s Scientific Review Committee. Jack is really an extraordinary patient, and we invited him on today to learn a little bit about what makes him tick.

To start Jack, for our listeners, could you tell us what it was like for you when you were first diagnosed with myeloma in 1995, and what kind of information was available to patients at that time?

Jack Aiello: It’s interesting to think back to 1995 when I was diagnosed, because the world of myeloma was certainly different then. The information that was available for patients was certainly limited. The IMF, International Myeloma Foundation, existed. It had a website, but it had limited pdfs. I did attend a Patient and Family Seminar late in ’95 or ’96. That was pretty enlightening. That’s for sure. Just to see the 150 myeloma patients existing in the Bay Area, that I had no idea.

But even before then, when I was diagnosed in ’95, and I had to go in a hospital and get a chemo infusion, a social worker walked into my hospital room and told me about actually a Leukemia Lymphoma Society support group in the hospital that night. I dragged my IV pole to that meeting, and I met first myeloma patient. And that was actually one of the most important introductions for me personally. I got to see someone living and breathing with the same disease that I had. 

But he also introduced me to the San Francisco Bay Area Myeloma Support Group that actually had started shortly after the IMF did, back in ’91. And I attended the meeting and it was really important again to see a group of myeloma patients there, asking questions, discussing treatments. 

Of course, treatments back then were very limited. You essentially had two treatment arms. One was called predinose and melphalan, which were just pills. Or if you were in better shape, you would strive to get a transplant. We didn’t have any myeloma specialists near that I could figure out in the Bay Area, even though I live close to Stanford and went up to interview them regarding their myeloma treatment.

But I found through our support groups, specialists located in Little Rock, Arkansas. And I went there and such, for their treatment arm. So you can tell it was a much different world back then, then it is today.

Host: Exactly, and I’m sure in support groups and how active you are in the myeloma community. You encountered lots of newly diagnosed patients. As a long-term survivor, what are some words of wisdom that you would have for someone who was newly diagnosed with myeloma?

Jack: The most important advice I can give is to get educated about myeloma because it’s always changing. The treatments seem to be coming fast and even the understanding of myeloma is increasing. 

And you can get educated by a number of different means. You can get second opinions from myeloma expert doctors. There are support groups. There are webinars to learn more about myeloma. I think there are webinars out there once a week. You can attend a live webinar, or you can go to the replay. And when we get back to visit with each other, you’ll find seminars there. There are websites full of information, like the IMF website which has video recordings, publications that can be downloaded, and such. 

The patient, the myeloma patient can get educated to learn more about your own myeloma markers. And you can follow your own lab results and find out for yourself how well treatments are working for you, and are your myeloma markers responding. 

I think it’s important that the patients learn the names and dosages of the drugs you are getting. And become familiar with questions that you should be asking your doctor. I think it boils down to however best you are able to educate yourself: Get educated about your myeloma.

Host: Especially with treatments, your somebody who's familiar with many different types of treatment. I’ve read a little bit about your journey and you have gone through stem cell transplant, clinical trials, and what brought you into long-term remission, I understand, was an allogeneic stem cell transplant, or rather a transplant using a donor’s stem cells. A lot of people may not be familiar with this type of transplant. How would you briefly explain allogeneic transplants and their potential benefits?

Jack: So, we have to first make sure that you understand what an autologous transplant is. It begins with a high-dose of chemotherapy. It kills as much of your myeloma as possible. And then uses your own stem cells which were previously harvested to give back to you in order to rebuild your immune system that that high-dose of chemotherapy has also killed. However, usually, it may several years down the road, your myeloma comes back. Because ultimately it is that same immune system that you have gotten back through that transplant, that caused the myeloma to grow in the first place. 

An allogeneic transplant starts with the same high-dose of chemotherapy given to you. But instead of getting your own stem cells back, you get the stem cells from someone else, whose hopefully a fully compatible donor. And that ends up rebuilding a different immune system in you as the patient, which is hopefully more effective at killing any residual myeloma left from that initial chemotherapy.

So, why doesn’t every patient do an allo transplant? Well, allo transplants are used for other types of blood cancers, but for myeloma even today, the mortality rate from a full allo transplant is about 40 percent. 

Plus, there are issues, which I had, called graft-versus-host syndrome. And it is a difficult procedure to go through. Given that we have so many more different treatments today than back when we did, when it was the only treatment left for me, you won’t find allo transplants being done very much for myeloma today. 

I think it’s going to be really interesting and informative to a lot of people who are just learning about the different treatments out there, and just kind of the history of where myeloma was as far as treatments and where it is now. 

Host: Just wanted to change gears a little bit. The IMF is of course, incredibly grateful to you for all you do. There are just so many ways you are involved with us and support us. And I’ll start with what you mentioned earlier, the Multiple Myeloma Support Group of the San Francisco Bay Area. How long have you been involved with this support group?

Jack: Well, I went to that group first in 1995, when I was initially diagnosed. I was lucky to have found out about it, and that group had a big impact on my subsequent treatment decisions and such. And once I went through my initial treatment, and I was pretty heavily treated for the first seven years or so, that they diagnosed it, I knew enough about myeloma by then, and I offered to help facilitate the group. We were expanding to another city And so I’ve been facilitating our myeloma support group now probably for the last 18 years.

Host: What would you say to the patients who maybe come to the support group who are little reluctant to participate, or people who are even reluctant to join a support group, who have myeloma.  What would you say to those patients as a reason to be part of it?

Jack: You know it’s funny, the first time a person told me, and suggested I got to that Leukemia Lymphoma Society support group, I said to her I didn’t want to. And in my head, I was thinking, I don’t want to go to any touchy-feely group. That’s just not for me. I can understand that kind of reaction to a patient maybe not wanting to go to a support group. I can also understand the reaction of patients not wanting to learn or hear anything more about their disease than is necessary. The interesting thing today, we’ve been doing virtual meetings now for almost a year. It’s very easy to attend a support group and still stay very shy about it all. You can turn off your camera and not ask any questions. And you can just listen. 

On the other hand, experienced patients in that meeting, just want to help. Because we all remember what it felt like when we were told we had a cancer with a name called myeloma that we had never heard of. I can remember at my first myeloma support group meeting, folks asking me things like, “Do you have IgG or IgA? Do you have kappa or lambda? ”And I had no idea what they were talking about.  They were rattling off some names of medicines, all which had two names each—their generic name and their brand name. And it was pretty overwhelming.

But you can trust me that if you hear this often enough, you will learn. And you’ll feel a little more comfortable asking questions. And I think, it can be awfully important. And you can get an awful lot out of attending a support group.

Host: Another way you’ve been a great asset to the IMF is that you are also active with our member fundraiser program. You’ve done letter-writing campaigns, as well as for several year, the Texas Hold ‘Em Poker Tournaments. Can you talk a little more about these campaigns? What drives you to do them, and what they are like?

Jack: Sure. I think there are lots of types of advocacy that patients can do. I talked about support groups. That’s a way of really giving back to patients one-on-one, or one in a group. There are public policy advocacy work that’s being done by many patients. As was mentioned earlier in the introduction, I’m involved in research advocacy, helping critique clinical trials. But another form of advocacy is called fundraising. It is fairly easy to raise dollars for research and education, which is so important to improve myeloma, make more treatments available, and help patients better understand the disease.  You mentioned the Poker fundraiser. That was always a fun event for me. I haven’t done it about four years because I don’t walk too well anymore. That required me to kind of --- get around to different tables.

This was a Texas Hold ‘Em event, and I would have 30-35 people at my house, and three large tables of you know, players, and we would feed them dinner and other things. And then we’d play two hours of Texas Hold ‘Em, which was an easy thing to do for a large group of people. There would be a buy-in, of typically $75, all of which would go to the, in this case, the International Myeloma Foundation. 

And it was fun. We would have people year after year. If I were late in sending out invitations, I’d have people asking me if I was going to hold the event again and what was the date so they  could put it on their calendar. And we would typically raise about $5000 for one-night event. It was just enjoyable thing to do.

Every year, for the past 15 or 20 years, I’ve been doing a letter-writing campaign. It used to be real letters and I’d put self-addressed stamped envelopes in there, asking for donations, that would again go to a myeloma organization. And these days I do it all by email, my list of folks that I ask, has grown. Because those folks are really good at expanding my lists. They start off with friends and business associates, and now I have grown to be people I don’t know anymore, but I make sure that I ask them. And I typically raise in the neighborhood of $45,000 or $60,000 each year.

It’s a lot of work. The IMF is really helpful to make a website for me for people to make donations. And it’s quite successful, I think.

So those have been my different fundraising efforts for me.

 Host: We definitely appreciate it, and I think other patients hearing about it, might be inspired to do something similar. Another way that you’ve been involved with the IMF, is for every year for the past several years, you’ve attended the American Society of or ASH annual conference, which is an international conference that brings together leading researchers of hematological malignancies. That’s hard to say. Say that in one take: hematological malignancies. And while you’re there, you blog, and you tweet, and you share the patient perspective on the latest research on myeloma that comes out of this conference. So we invite, and you come back every year, and so what excites you about attending ASH every year? Why is it that you like to go? And what do you get out of the conference?

Jack: I always leave this four-day ASH meeting incredibly inspired by all of the new treatment being tested. When I was diagnosed, as I mentioned, there was only two treatment options. The good news today, in just the last 10 or 15 years, there’ve been a dozen new treatments. The bad news though is there’s lots of treatments, but how do I know which is best for me? So from ASH I always gain a better understanding of the newest treatments that are out there, how patients are responding to them in clinical trials. And what side effects there are from those treatments because there seems to be no free drug out there. It comes with different side effects that vary from patient to patient. But the benefits of doing these trials is the doctors also come away with how to understand the side-effects profiles of those treatments. 

I also thoroughly enjoy seeing some of my other patient friends that the IMF brings to ASH. Some of us have none each other now for 15 or 20 years. 

It’s just good seeing those folks as well as the doctors that I met. Both doctors I’ve gotten to interview over different times and I get to renew a friendship with them at ASH when I see them face-to-face. 

This year was done virtually. And it still worked out pretty well. I mean one of the nice things about ASH is it can be awfully difficult to understand some of the presentations. But with it being virtually, they were typically recorded, and you could repeat them and play them again to better understand it.

I always create a five-page document, essentially my takeaways from ASH. And these are takeaways with a patient perspective. And what’s coming around the corner for patients. As opposed to stuff that’s still in the lab in the test tube. I try to present that to my own support group, and share that write-up with other support group leaders around the country. So ASH, is a really wonderful event for me, and I look forward to it every year. I hope I continue to be invited.

Host: I know a lot of people get a lot out of your blogs. We get a lot of traffic on the website, specifically to your blogs and also people commenting and engaging with you there. On a little different note, in your 26 years of living with myeloma, what would you say is some of the most surprising things you’ve learned about yourself or others in your life?

Jack: You know, I think for me the 26 years of living with myeloma and what I’ve learned about myself, are really kind of dependent on the stage of diagnosis in my life. When I was newly diagnosed, one of the most important things I learned, was that I wasn’t alone. That other people had this disease. I certainly had never heard of it when I was diagnosed. I think as I became more involved and learned all the work that goes into completing clinical trials and such, just everything that’s behind getting more treatments out there.

I’ve also learned, as a result of having this disease for many years, how many kind myeloma expert doctors are out there. And as I mentioned earlier, how many close myeloma friends I’ve made throughout the U.S. and the world. But sadly, I’ve lost a lot of those friends as well. Of course, I’ve, I think like every other patient will say, I’ve been reminded, maybe that’s best phrase, of how important family and friends are to me. When I was originally diagnosed in ’95, I remember thinking that I hope to survive five years. Because then I would at least double amount of time that doctors told me I would survive. I would live to the year 2000 and see my daughter graduate from high school. And I would see if the world really would crash in the year 2000, as we entered the new millennium and apparently everything was going to go haywire. It fortunately didn’t. 

As I live longer, I set new goals for myself. You know, of being able to walk those daughters down the wedding aisle and see my son graduate from college. He’s in high school orchestras and such. I’ve gotten to bounce those grandkids on my lap. You set those longer goals that are hopefully important for me to be able to get through, as I’ve had this disease for a long time. 

Host: It sounds like a lot of adaptability. And as you know March is Myeloma Action Month, and once again, for Myeloma Action Month, the IMF is focusing on the theme of resilience. It’s also about adaptability, or the capacity to adapt to challenges. And just talking to you, seeing how much of an advocate you’ve been, a fundraiser, and educator…You’re obviously very resilient person and resilient patient. What do you think you can offer to someone who may not have that same inner fortitude to be resilient on a daily basis, who may struggle to find hope, especially during these times, when we’re in the pandemic, who may be struggling a little bit and are having a little hard time of being as resilient as you might be?

Jack: Well resilience for me means encouragement with hope. And hope for me comes with knowledge, and knowledge is from education. 

I remember one of the first myeloma patients I ever met. He told me that having myeloma was like being a frog on a lily pad, and some point you knew the lily pad was going to give out. But the frog had already eyed the next lily pad to which it then jumps to. For myeloma patients, treatments are like lily pads. They don’t work forever, and they typically give out. But given that there are so many new medications out there and combinations of medications gives us a better chance to manage our disease for a long time.

I sincerely believe when one of my friends always says that knowledge might be the best medicine of all. So that advice for me really comes down to learn all you can about myeloma. 

I know the IMF has the 31 days of Myeloma Action Month. It has easy things you can do during those 31 days, but it also has myeloma facts you can learn — one new fact each of those 31 days. And I would encourage myeloma patients to do both of those.

Host: Well, thank you Jack, and one final question I have for you. Is how are you handling the pandemic. How’s it been for you? I mean, just on a human level, everybody out there coping in a different way. How are things for you?

Jack: I think like most we’ve certainly been homebound. I’m in Sante Fe, California. We don’t get out much. In particular, we miss seeing the grandkids who live typically flights away from us, up in Seattle, Virginia, and down in LA, your way.

We’ve just gotten our first shots. We’re scheduled to get our second shots. And we hope to be able to resume some of the travel, both for my advocacy work as well as to visit those grandkids in the next few months.

When my wife asked me when do you think we can go visit, I said, “Well, summer should be okay.”

I think her response was, “April sounds better.” 

So we’ll have discussions on that and we’ll cherish everyone when we get back together. One thing that we had always done well before this virus started, for many years, every Sunday morning, we’ve been doing Zoom with our grandkids, and their parents, and have continued to do that. We get to see them virtually every weekend. But it will be fun to give the kids a hug again.

Host: That sounds wonderful. And we wish you the best of luck. And maybe with being vaccinated, that will be just right around the corner for you. So thank you so much, Jack, today for participating in this interview, and we really hope it inspires our listeners as well.

Jack: Thank you, Sapna!