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Our Multiple Myeloma: Patient-Physician Relationship Goals

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Published on August 9, 2021

Strong Patient-Physician Relationships Lead to Better Outcomes

Decision fatigue can take a toll on patients with multiple myeloma. In this segment, multiple myeloma patient advocate Regina Weiner and her doctor, Peter Voorhees, MD, Hematologist and Medical Oncologist at Levine Cancer Institute, talk about their patient-physician relationship and how they navigate shared decision-making through cycles of relapse and remission. Keep watching to learn how patients and doctors can build strong communication and trust over the long haul, often leading to better outcomes.

Support for this series has been provided by Oncopeptides. Patient Power maintains complete editorial control and is solely responsible for program content

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Transcript | Our Multiple Myeloma: Patient-Physician Relationship Goals

Reina Weiner: Hi. I'm Reina Weiner. I was diagnosed with multiple myeloma in 2012, and my first treatment was a clinical trial at the National Cancer Institute. Why did I choose that instead of standard of care? For a couple of reasons. First of all, I worked in oncology for years and had a lot of experience with clinical trials. I had some knowledge. I was very comfortable in there. And so, I chose that because I thought it would be an opportunity for me to get the latest and greatest. And I was in that trial for several years, for four years, as a matter of fact, until my relapse. And at that time, they told me that it was time for me to start a new regimen.

What Should Multiple Myeloma Patients Know About Patient-Physician Relationships?

Dr. Voorhees: I think that the first thing that a patient needs to understand when they're diagnosed with myeloma for the first time is that treatment for multiple myeloma is a marathon. It's not a sprint and it's something that's going to take place over years, as opposed to weeks versus months. People always talk about that myeloma is not curable — what I tell patients is that there are in fact myeloma patients who achieve excellent remissions with treatment and remain in remission for many, many years and wind up passing away later in life of completely unrelated causes. From my perspective, there is a subset of patients who are effectively cured, if you will. We hope that that will improve over the course of time but the vast majority of patients who live long enough with myeloma will experience a relapse down the road.

Reina Weiner: So at the end of 2016, still being followed on the clinical trial at the National Cancer Institute, I had a call from the physician there saying that I was relapsed. So that was four years into the trial. And so, at that point, then I had moved, and I was living in North Carolina, and I had gotten in touch with Dr. Voorhees. And there was a short-term regimen that they put me on at Dr. Voorhees's suggestion, and he wanted me to then move on to an autologous stem cell transplant. So, I had some concerns about that because my physicians who initially treated me at the National Cancer Institute were okay with transplants, but not big fans.

So Dr. Voorhees and I talked about it and really it was definitely a shared decision because he thought that this was a time that I could tolerate it. My general health was good. And as most of us, we're not getting any younger, so this might be the time to do it considering that [it] hopefully was the best option for me. And I thought about it, I talked to my family, I talked to Dr. Voorhees several times. And initially he said, well you remain unconvinced. And I said, you're right. I'm not convinced yet. And through continued discussion with him, doing my own research, talking to my family and basically talking to myself thinking, “Is this the path forward?” And “Is this the right time?” And finally with Dr. Voorhees's support and patience and great listening skills, I had decided to do it. And so, I did.

How Can Teamwork Improve Outcomes in Multiple Myeloma?

Dr. Voorhees: I think when you're making difficult decisions, say for example, high-dose melphalan (Alkeran) chemotherapy and autologous stem cell transplantation, having the patient reach out to a patient advocate, who's been through it before, I think is important. I think it's important that we not just give them the patient advocate who's breezed through it and has had the easiest course, I think you need to match them with someone who's had kind of a typical course, so they have a realistic understanding of what to expect, and try and match someone of a similar age, for example, who's been through the process. But I think when patients recognize that there are people out there who've done these things it provides a tremendous amount of reassurance.

On the medical provider side of things it also requires a team in many instances. The patient may have other medical conditions that may impact the safety of particular therapies. If we have a patient with significant part disease, we may have concerns about the use of say, for example, carfilzomib-based therapy, or Kyprolis-based therapy. In that circumstance, we would enlist the help of a cardio-oncologist. A patient's myeloma may impact their kidney function, in which case we would have a kidney specialist or nephrologist involved. A patient may have neuropathy related to their myeloma which may impact the safety of drugs that we use to treat myeloma, some of which can exacerbate neuropathy. Having the neurologist involved can be very important and, obviously, a new cancer diagnosis of any kind, including myeloma, can be highly distressing and can lead to significant symptoms of depression, anxiety — and these things can have a negative impact on a patient's ability to make decisions about their care. Having a psychologist, or psychiatrist, who's well versed in the challenges that cancer patients face is incredibly important.

Reina Weiner: My results from the autologous transplant, the stem cell transplant I should say, were great. No, it is not like a walk in the park, and it does have side effects and a recovery period. I had about three months when I was home and very quiet. Had a lot of support from my husband and family, but anyway the time passes. Fortunately for me, and everybody's so different, I've had a four-year remission on maintenance because that's generally what happens to most patients. Even though there are a few lucky ones that get cures, most of us kind of keep on keeping on. And I go every two weeks, sit in the chemo chair, have my treatment. I know how to manage it. And I feel looking back, it was a good decision for me. Absolutely. And as far as the future goes as far as everybody, it’s pretty much an unknown.

Dr. Voorhees: I think as patients make decisions about their care, it's important for them to recognize that one, they've got lots of different options available to them and we can certainly find a regimen that fits their needs, with regards to their preference, what their underlying other medical conditions may be, whether they've got newly diagnosed or relapsed disease, for example, what prior side effects, if they had two particular therapies. We have an embarrassment of riches in the myeloma world, which is a great problem to have, but getting to your point about all of the developments in myeloma, I think it's important that we choose a regimen that, one, is well tolerated, absolutely, and doesn't negatively impact quality of life, but provides the patient with the best chance of a long remission, because the longer the remission, the more new opportunities for treatment there will be at the time of relapse.

What Advice Would You Give to Fellow Myeloma Patients?

Reina Weiner: Dr. Voorhees and I have really worked together. No, I'm not a physician. No, I don't know what he knows. But I do know myself and we have established a great rapport and really a significant trust. And he listens to me, he doesn't kind of blow me off as if I don't know what I'm talking about, and I so appreciate that. And so for the road ahead, wherever it's going to lead, and yeah, whoever or whatever happens, I know that basically my hematology-oncology physician is going to be there for me and we will move forward as we need to, as the time goes by and as, possibly, things change.

And I really can't emphasize enough how essential it is to your care to believe that you have somebody that you can really trust their expertise, their knowledge and their, basically, essential qualities as a human being, as a caring human being. And I really do feel that with Dr. Voorhees. It's comforting to me. It gives me the emotional comfort that I need to say, he's going to be there for me. Whatever happens. I don't think he's a miracle worker, nobody is, but he will be there with all the knowledge that is presently available. So, I'm very grateful for that.

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