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Attitude Is Everything: Moving Past a Myeloma Diagnosis

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Published on February 7, 2018

Many myeloma patients have similar experiences and features of their disease, but how each person chooses to live with their condition makes all the difference in their journey.Learn to live life to the fullest with our panel of myeloma experts, including Dr. Robert Orlowski, Dr. Noopur Raje and Tiffany Richards, as they discuss ways to take charge, stay informed and enjoy life. Patient advocates, Jay Lopiccolo and Karen Fore, also share what they’ve learned since diagnosis and things they would do differently. Watch now to find out more.

Produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center. We thank AbbVie Inc. and Takeda Oncology for their support.

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Transcript | Attitude Is Everything: Moving Past a Myeloma Diagnosis

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.

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:

"What do you recommend best for patients to really—how they should really move forward in dealing with their myeloma?" What helped you the most or what can you recommend?

Jay Lopiccolo:   

The first thing I would say is be very honest and open with your care team as well as ask lots of questions. That's probably the one regret I have. I didn't ask enough questions. I just kind of took what they said and then made decisions or moved forward. In terms of your life away from the medical clinic, for me, the big thing is just do what you can. 

Yeah, there are going to be times when your back hurts or you have physical problems. But if you try and stay as involved as you can with your family—if you have a church community or a social community outside of the house, try and stay as involved as you can. Try and find ways to get out of the house. If you can't drive yourself, if you have friends, or family, or in this day and age, Uber or one of the car services that you can use to go be in social environments. Just that interaction can really liven your spirit, make you much more positive. And that helps stave off that depression. That helps stave off that lethargy that sets in if you're sitting in a recliner for 10 or 12 hours a day.

Jack Aiello:         

Karen? 

Karen Fore:         

When I talk to my patients—the people that they connect me with—I tell them that attitude is everything. That a positive attitude through your treatment and after is most important. 

I used to call it putting on my warrior armor every day. And I still do it to this day. Being engaged. When you have questions, ask questions. No question is stupid. The only stupid question is the one you don't ask. And ask so you can advocate for yourself. And engage. Support groups are great, especially in the beginning. I went to one here in town for a while. And I reached out to Live Strong at one point. Because after my stem cell recovery, I hit that depressive point. And I couldn't afford a psychiatrist. So I got a social worker through Live Strong for free. And we talked by phone a lot and emailed a lot. And it helped a lot.

Jack Aiello:         

So don't be shy about asking for help.

Karen Fore:         

Don't be shy about asking for help. Because I am one of those that is so guilty of not wanting to ask for help, but you finally have to do it. And give yourself permission to take care of you for a change. 

That was another mindset I had to change. Because I raised kids. I had a husband. I had a job. And I was so used to putting myself second. This time, I gave myself permission to take care of me. And it was important to listen to my body and take care of me.

Jack Aiello:         

Thank you. Tiffany, what types of patients do you see that are most effective or most successful in dealing with this disease? 

Tiffany Richards:              

I think it's important to have what Jay was saying, living your life and enjoying your life, and doing the things that you found enjoyable before you had cancer and engaging with others. I think the other important thing is also to remember that cancer is not the only thing that can go wrong with your body. So making sure that you're staying up to date with all of your health maintenance and taking care of the rest of you. So staying up to date on your mammograms and pap smears and colonoscopies and prostate exams. And all those things.

And having a primary care doctor is so, so important. And a lot of times, I find that patients just think about just the myeloma and they forget about everything else. And all that other stuff is just as important. So I think the healthier you are, the better you're going to tolerate treatment.

Jack Aiello:         

I do remember well the day my oncologist and my nurse practitioner told me that, "Okay. You're ready to go to a regular doctor and go do your colonoscopy, and get your physical, and all those kinds of things in terms of dealing with other things in your life." Yeah. That's very good. Dr. Raje?

Dr. Raje:                

I would say know that you're not alone in this. Know that you have a whole team behind you. And also know that—I think we are in such a hopeful time in myeloma. It's an incredible time. And you have to learn to live with this disease. And don't make myeloma front and center.

It's just part of what you're going to have to go through. And our job is to try and make it as easy as possible. And we're working towards it. 

Jack Aiello:         

Good. Thank you. Dr. Orlowski?

Dr. Orlowski:     

I really feel that with the tools that we've talked about today, we have a great chance of being able to cure myeloma in the next five years. Especially in people who have "good risk disease." But even potentially in the high-risk patient population and as we've focused on earlier, the best thing to do is to get involved in clinical trials. Because if we could even double the number of people who enroll onto studies, we would get to that point much more quickly. Right now, somewhere between 5 and 7 percent of patients participate in trials.

And everybody wants new things to be developed as quickly as possible. And the best way that they can do that is to be part of a trial. And I sometimes give people the analogy of shopping for a car. When you need a car, if you live nearby somebody who has a car dealership, you know them well. You're comfortable with home. And sure, sometimes it's easy to go to their dealership. And if they have one car on the lot, you buy it. But most of the time, you'd want to shop around and have more of a variety. And that's where it helps to go to a myeloma specialist and to think of a clinical trial as like a test drive. Because if the therapy works for you, then you keep going with it.

If it doesn't work for you, then you come off the trial, and you do something else. And that's really the best way to get to the point that we can cure this disease.

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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