Advice for Newly Diagnosed Multiple Myeloma Patients

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Topics include: Living Well and Patient Stories

Jack Aiello, with Patient Power, interviews Joan, Greg, Frank and Sherry who are recently diagnosed multiple myeloma patients. They discuss how to advocate for yourself, how myeloma has changed them and what advice they would give to a newly diagnosed patient.

Produced by Patient Power. We thank Abbvie, Takeda and Amgen for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Jack Aiello:

Hi.  My name is Jack Aiello.  I would like to welcome you to this program sponsored by Patient Empowerment Network through educational grants from AbbVie, Amgen and Takeda Oncology.  And I also want to make you aware that this conversation is certainly not a substitute for medical advice.  You need to consult with your doctor to get the care that's right for you. 

And I'll quickly introduce myself, but I'm a long?term myeloma patient, and we wanted to talk to some more recently diagnosed patients.  For myself, I was diagnosed 22 years ago with myeloma.  I've of several transplants, a couple of autologous transplants using your own stem cells as well as an allogeneic transplant using my sister’s stem cells.  So I've been in the myeloma field, if you will, for a long time, and I know how important it is for patients to advocate for themselves, so that's really what this discussion is going to cover.  

So on the screen in front of me I have several patients.  I have Joan, so we'll start with Joan.  Maybe you could just say a bit about yourself, where you are in the myeloma world, and we'll stop there. 

Joan:

I was diagnosed with multiple myeloma in August of 2014, had a stem cell transplant in January of 2015, and thankfully have been in complete stringent remission since that time. 

Jack Aiello:

Good.  Greg, what about yourself? 

Greg:

I was diagnosed with smoldering myeloma in December of 2013, and then it progressed to full myeloma in April of this year, so 2016.  I went through seven cycles of chemo, and then I just completed my stem cell transplant.  I think I'm day 42 after my transplant right now.  So that's where I am and waiting to hear the results to see what kind of remission I get out of it. 

Jack Aiello:

Good.  Frank, how about a short background on your myeloma history? 

Frank:

I was diagnosed in December 2014.  I was put on a cure with lenalidomide (Revlimid) for a certain period.  After that I had to make a decision to either go for a transplant or go into a maintenance cure, that was the reason I went to the Mayo Clinic.  I got to there, and they recommended strongly due to my age to go for the maintenance cure, which I have done.  And since then I have basically been in the maintenance cure.  I came out of remission on the Revlimid and that's when I moved over in April of this year to carfilzomib (Kyprolis), so I've been on Kyprolis since April. 

Jack Aiello:

And for those that aren't familiar, Kyprolis is the same thing as carfilzomib.  And, Sherry, tell us about yourself. 

Sherry:

So I was diagnosed in October 2011 and went on bortezomib (Velcade) and then had my stem cell transplant in March 1st of 2012.  And then I was in a very good partial remission for two years, and then I had to start chemo again.  That was in 2014.  So this April I will have been on Velcade again for three years, but so far all my counts are very, very low, and the Velcade is working to keep me—as my maintenance right now. 

Jack Aiello:

So all of you have been diagnosed within the last three or four years, if I heard correctly…

Sherry:

…five years. 

Jack Aiello:

Five years, and let's start off with each of you thinking about one piece of advice you would give to that newly diagnosed patient.  We all remember what it was like when we were told we had cancer, which kind of knocks you off your feet, have something called myeloma, which likely we've never heard of, so what's the one piece of advice—Sherry, I'll start with you—in terms of you might give to a newly diagnosed patient? 

Sherry:

Looking back, I would probably say the one piece of advice I would give them would be to seek out a specialist from the very beginning.  There wasn't a specialist where I lived in the Boise, Idaho, area, and I thought that was okay for a while, and I still think it's okay, but it's good to have that other specialist coordinating care with your local oncologist.  And that would probably be the biggest thing I would change going back.  

Jack Aiello:

How did you find a specialist? 

Sherry:

Well, a lot of different—other myeloma patients, information, Gary Petersen's Myeloma Survival, Pat Killingsworth's website or blog, I looked at a lot of those.  Looked at the MMRF, and we kind of looked—my husband and I picked a specialist that we felt was one of the top specialists, and we went to see her at Duke University. 

Jack Aiello:

Good.  So you're really proactive in that. 

Sherry:

Yes. 

Jack Aiello:

What about yourself, Greg?  

Greg:

For me, I would probably—I spent a lot of time with a lot of anxiety when I first got it, and I look back and I think—having—know what I know now looking back three years when I was first diagnosed with smoldering, that anxiety was wasted.  You know, things are much better than I thought they were going to be, and my mind went to the very worst-case scenario, right? 

So I think I wish I would have probably tried to understand that there's a long term—a lot of the reading, like they tell you, a lot of the old reading that Frank was talking about is really scary stuff, right?  Getting up to date on the new stuff is what really helped bring the anxiety down for me. 

Jack Aiello:

Frank, what's the one piece of advice you might give a newly diagnosed patient?  

Frank:

The only thing I can say, I didn't look for a specialist, and I said last week to the specialist at the Mayo, I wish you had directed me directly to him.  The doctor who is treating me is doing a very good job, make no mistake, I'm very happy with it, but this guy, you know, sees in excess of between 50 and 100 patients a year.  The doctor who is treating me now, I don't know.  I haven't got a clue.  I'm basically—I was sent there on the advice of my primary physician and in conjunction with the pain specialist.  That's how I ended up there.  Since then I'm happy.  You know, I might have taken a different decision. 

Jack Aiello:

Joan?

Joan:

I guess once I got over my complete shock and fear—there had never been anyone in my family diagnosed with cancer, nobody, as far back as I can tell, and my parents both lived into their 90s.  So once I got over that this can't be happening to me, I have good genes feeling, I would say the more I informed myself and the more actively engaged in my healthcare I became the more optimistic and positive I became.  So I think involve yourself and inform yourself, engage in your healthcare. 

Jack Aiello:

So that's your best advice, learn as much about your disease and your treatment as possible so that you along with your doctor can make good decisions.  

Joan:

Yeah, just get to work, get to work on it. 

Jack Aiello:

Frank, your story brought me back to when I was diagnosed in '95.  I was assigned an oncologist, and I've never been shy, so I asked him how many myeloma patients he was seeing, and he said two.  And when he said that, I started looking for another myeloma specialist.  I found one that said he's a—he was seeing 12, and I said, heck, that's an order of magnitude better than the first guy.  I'm switching.  

I did interview him kind of because he had gray hair, and I wanted to make sure he was going to be around, because I figured I was going to be around, and he turned out to be a real good guy.  He was one that was very open to me checking out other myeloma specialists as well.  So I think you find doctors in different ways, but you can't be shy about hurting a doctor's feelings if you somehow don't think he's the right doctor for you. 

Frank:

I agree as the doctor and I were saying, my wife and myself, as I said before, we're originally from Europe, and we moved to ’62 from South Africa, and we moved in '86 due to the political situation from South Africa to the United States.  We decided to move back to South Africa.  So I made contact through the family in South Africa and with a doctor over there which is handling patients with multiple myeloma, and on the 27th of March we are going back to South Africa, and I will carry on my treatment over there.  He will also treat me with Kyprolis.  This is technically what is happening with myself. 

Jack Aiello:

So you bring up a good point.  Do any of the others of you travel abroad and such, and what do you do if you do that with respect to losing contact for a short time with your own myeloma doctor?  Just raise your hand if you're got something.  Good.  Sherry.  

Sherry:

So the longest that I have traveled away, and I usually schedule my travel around my treatments, but the longest, my husband and I went to Europe almost a year ago, this past January, and we were gone for two-and-a-half weeks, and, you know, I just coordinated it with my oncologist.  I had to miss one treatment, but I got one right before I left and right when I got back, and I just coordinate that with him. 

And I've always done that since I was diagnosed.  I've never let it stop me.  I was on dialysis for the first two years, because my myeloma affected by kidneys, and we still traveled.  We didn't let it stop us.  And, of course, Velcade is a sub?Q injection, so it's not an oral pill I can just take with me.  When I have to get to that stage I guess that is the convenience of an oral pill. 

Jack Aiello:

And, Joan, you mentioned that you had to travel while on treatment? 

Joan:

Well, I housesat in Mexico three times during this last year, ranging from eight days to a month.  I made sure I had enough medication with me.  I'm on oral Revlimid therapy.  I was in touch with my local oncologist by email and scheduled it around my MD Anderson appointments.  So I had no problem with that at all.  It worked out really well. 

Jack Aiello:

I remember the first time I traveled I went to Italy while my myeloma was fairly active, and I asked my doctor to get me a contact in Italy with respect to an expert there in myeloma.  And I took that contact information.  I never had to reach him, but I still felt good having that in my pocket, just knowing that I wasn't too far from where I had to go and find someone if I need to. 

Greg, you said you had a lot of anxiety when you were first diagnosed, and I wonder was some of that anxiety tied to the fact that you were diagnosed with smoldering myeloma and you probably were told to watch and wait, which is sometimes analogous to watch and worry, and I think that can be really, really worrisome.  So what was your—did you continue to monitor the disease before it progressed, or what did you do to kind of get through that anxiety? 

Greg:

Yeah, I think for me was just to get educated and come to the terms with the fact that it wasn't a death sentence like I was putting in my mind, right?  So I was 49 when I was diagnosed, and I still had kids in the house, so I probably put more anxiety on myself with that.  But once I got past the fact that hey, you know, there's a lot of good treatments out there, a person can live a good long time, then to me that's what the anxiety went down. 

I was actually MGUS before, for five years before it, so I know the watch and wait thing for five years and then another two years smoldering, so I've been watching for a long time. 

Jack Aiello:

Most people don't know that they went through an MGUS or smoldering phase.  You're one of those that has been with it for a while then.  

Greg:

Mm?hmm. 

Jack Aiello:

Frank, I think you had mentioned before we got on this call that you are—have moved from Revlimid to carfilzomib or Kyprolis it's called, and you're now having some back pain. 

Frank:

Yeah, back pain. 

Jack Aiello:

What do you do about that? 

Frank:

Pain pills.  I'm on—I take morphine, 30 milligrams morphine in the morning and 45 milligrams in the evening when I go to bed.  And during the day I take oxycodone (Oxycontin). 

Jack Aiello:

So you're on pain relievers. 

Frank:

Pain relievers. 

Jack Aiello:

Are you also seeing a specialist to figure out what is causing this back pain?  

Frank:

That has started now, so basically tomorrow I'm hoping to get, you know, what they did see or didn't see on the PET scan. 

Jack Aiello:

Good.  Good. 

Frank:

The doctor at the Mayo thought that there might be some activity, what you don't see in the blood tests, so this is why we took the next step.  

Jack Aiello:

You could have what's called an extramedullary plasmacytoma there, which is like a tumor of cells, and they can radiate.  That can certainly provide relief, or it could be something else, so it's really important to follow up with that specialist.

Frank:

Yes, I'm doing so. 

Jack Aiello:

Joan, tell me about where you are today with respect to your myeloma.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on January 8, 2018