Patient-Doctor Communication: Managing Side Effects and Expectations of Melanoma Treatment

Published on

Topics include: Understanding

Should patients communicate with their doctor about side effects and expectations? Dr. Michael Wong emphasizes complete communication between doctor and patient in order to ensure optimal treatment and to avoid complications. 

This in-person town meeting was sponsored by the Patient Empowerment Network through educational grants from Genentech and Novartis. It was produced in partnership with Banner MD Anderson Cancer Center, and the Melanoma Research Alliance.

View more programs featuring

Produced in association with , and

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. 

Andrew Schorr:

Okay. We’re going to run through the things on the slides pretty quickly here because I want to have plenty of time for questions, and that is related to a treatment plan. Dr. Wong, how do you form a treatment plan and also, along the way, be mindful of side effects as well, because you want to fight the cancer, but you don’t want to be terribly sick?

You want to live your life along the way. So tell me about the communication with patients to form a plan and have a backup plan as well. 

Dr. Wong:

Correct. So I tell folks that what we’re trying to do here is look at long-term survival. I want to get to the cure if I can. So that’s a kind of overarching theme that drives our decision-making. I want to know what’s important to them as well, be it a wedding they have to go to, be it watching their daughter go down the aisle at a certain time, be it their son’s wedding. Those are things that are very personal. So I build from that. And then I’m not going to go into details of how to build a plan because that talks about BRAF inhibitors, velocity of disease, all of which you’ve heard of. 

But I want to talk about the second part, which is management of side effects because, right now, a lot of drugs, especially BRAF inhibitors, or oral therapy.  You’re taking it at home. 

IV goes in. I know exactly X number of milligrams at what time and then what happens.  You’re doing it at home. That gives me a sense of discomfort as a doctor, because I don’t know what happens out there. But I do know that even when my father was sick, and we had a doctor, a pharmacist and a nurse in the family, we sometimes didn’t get the drugs right, if you can believe that.. So one of the strategies I use is I say, “Listen, this is your therapy, XYZ, whatever it is. Here’s what I expect to happen. Here are the major side effects.  Here are the common ones. Here are the dangerous ones.”  

If you’re on track, you should be XYZ. For instance, you get this infusion. You should be feeling as well tomorrow as you do today. You shouldn’t be curled up in a ball in the corner. If my patients are watching, these are exact words I use, curled up, throwing up in a corner, sick and staying indoors.  If that’s the case, I want a phone call.  So I think it’s important to have a clear idea of what my expectations are, because they don’t know.

Okay, Dr. Wong said this is not supposed to happen. That’s a phone call, because they don’t know. So I’ll lay a very broad expectation. And if they deviate from that path, I say that’s the phone call. And then we will adjust accordingly, because sometimes, it’s not always a thing that you can predict. And, of course, I want to spend some time on the rarer and less common but dangerous side effects.

Those are ones we spend—so for Yervoy or ipilimumab, for those who have been on it, you have a conversation about poop very frequently. And these guys are laughing, very frequently. We just had lunch. We’re not going to go into it. But it’s a detailed, very concise description of your No. 2 function, because that’s one of the things we worry about and so on and so forth. So there are things to build on like that. But the No. 1 thing is the second bullet point, communication.

So having family in the room, being able to approach people in such a way that they feel they’re able to communicate with you, whatever is happening, what they’re doing, and so on and so forth, that’s the number 1 thing.  I don’t think the drugs got safer, by the way. But I think people are now communicating better around the side effects, which is why I think a lot of the side-effect profile numbers are getting better. 

Andrew Schorr:

And this doesn’t only relate to you being on an immunotherapy. It relates to surgery, recovery from surgery, worries about infection, side effects of medicines, remembering to take the medicines.

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. 

Related Programs

Communicating With Children After a Melanoma Diagnosis

Is communication with one’s children, family, and even community important when going through cancer? Dr. Rena Szabo emphasizes the importance of communication.

Published:

How One Melanoma Survivor Lives Each Day to the Fullest

T.J. Sharpe discusses how he dealt with living life after being diagnosed with cancer. He explains how there were good days and bad days, but he found hope in each day that allowed him to be with his family.

Published:

Understanding the Biology of My Melanoma

Patient Power founder Andrew Schorr and online host Carol Preston talk about understanding cancer within the body and making informed decisions in order to proceed with the best care options.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on July 17, 2017