Myeloma Treatment Discussion Tool for Patients

How Myeloma Patients Can Communicate Better With Their Healthcare Team

Amy Pierre, Memorial Sloan Kettering Cancer Center, discusses how to use the Myeloma Treatment Discussion tool developed by the NLB and IMF to create better communication between you and your healthcare team. 

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I'm going to demonstrate or introduce the tool for effective communication. This tool was designed to keep the patient in the forefront, understand the patient's preference, and allow the patient to be an active participant in their care plan.

This tool was created in collaboration with myeloma patients, caregivers, myeloma support group leaders, and of course, my colleagues on the Nurse Leadership Board at the IMF. It's important to utilize this tool during various conversations. When you think about using this tool, it's not just a one-time tool. You're going to be using this tool throughout your treatment journey.

When do you think you should use the Tool? Well, whenever your treatment is not as efficacious as it used to be, and you're about to switch to a new treatment, whenever there's been a change in your life priorities or your goals of care, or whenever you have a question or concern about your myeloma treatment or your myeloma side effects, it's important to go through this tool.

The first part about the tool is what to consider before your appointment with your team. These are a bunch of yes or no questions that you can go through, and it helps you understand what your patient preference are in making decisions regarding your treatment. For example, I need to understand my treatment plan, or I prefer the most aggressive approach to treat my cancer. Or maybe you're saying, I just want to get all my treatment in the clinic in an outpatient setting. I don't want to take a lot of pills at home. Or maybe you're one of those people who do want to take all your medications at home and minimize clinic visits. Or maybe you're one of those people who really want to minimize the pill burden as much as possible and that is really a goal for you.

Other questions include how are you willing to endure the side effects, right? Are you someone who will deal with these side effects as much as possible - whatever it takes to control your disease? Or is your quality of life more in the forefront in terms of goals for you?

And clinical trials - So important. We want to know how you feel about clinical trials because as your health care team, we're going to be thinking about it each step of the way, anytime there's treatment decision-making, and what your out-of-pocket expense is. We want to know if you're concerned about financials because there are so many financial resources available for patients, either through grants or non-profit Organizations, and a lot of pharmaceutical companies do also have programs that patients can participate in to reduce their financial burden.

It's important to stay active, and it's good for us to know that - staying active during our cancer treatment. Also, we want to know how you feel about your current treatment and how it may affect your future treatment options. That's important to discuss with us because we're always thinking about sequencing, and I'll talk to you a little bit about that later as I show different parts of this tool.

The second part of the tool really is looking at the types of therapy and regimens patients have been on to understand what they've been exposed to and what treatments have been tried. The care team and the patient need to review what the goal of the therapy is. Is it to do an induction therapy with plans to undergo high stem high dose stem cell transplant and achieve a remission? Or is it to reduce the myeloid burden in the absence of a stem cell transplant and achieve the deepest remission possible that way? Or maybe you're just trying to stabilize your disease.

An example might be stabilizing bone disease with surgical intervention or palliative radiotherapy. It's important to know what kind of the goals are. It's really important to know how your treatment is working. it's this important section to review with your care team so you understand what medical information that we're looking at to understand how you're responding to treatment.

For example, is it your laboratory studies? If so, what parts of your labs are we looking at? Maybe the type of myeloma that you have doesn't necessarily manifest in your blood work. Then, how do we monitor your response? Is it by imaging? Is it by bone marrow biopsy? Is it by both?

So, you can see it's essential to understand how you're improving, not just by how you're feeling, but the objective information that your healthcare team is using as well.

And when changing to a new treatment, it's good to know how your laboratory studies and other specific tests may or may not change. Maybe a new treatment may cause a more pronounced lowering of your blood counts or not. Or maybe just specifically one part of your blood counts may be affected. Understanding side effects is important. We need to know how to anticipate particular side effects and what could happen with your treatment plan, so you know what to expect and how your team will manage it.

I did discuss earlier a lot of different side effects patients can experience on therapy so you know what some side effects could be. It's important to discuss management strategies that your team will review with you because there may be things that you can do pretty easily to control these side effects like oral hydration, or over-the-counter medications we may recommend. Or, maybe there are side effects that require more fine-tuning management such as prescription medications, physical therapy, or even a visit to your doctor's office. Understanding these possible side effects and management strategies helps you know what to expect and what to do if they occur, and we'll always talk to you about when your symptoms warrant urgent medical attention.

As I talked about earlier, there are some situations such as fever or symptoms of a blood clot that shouldn't wait until your next appointment or the next business day. Knowing what these critical symptoms are will help better prepare you as a patient. Myeloma has come a long way. We have so many new therapies approved in the last 10 to 15 years, which is extraordinary, and exciting, and there's more in the pipeline, and there's always clinical trials.

As future treatment options- knowing what is available is important and it's important to know what's appropriate for you. Even each care plan is individualized. Even though there's a therapy that is approved for myeloma and has been prescribed to you, there usually is a good reason why and your team can explain that to you. Reviewing the sequencing of these therapies and why they are in a particular order. It's usually based on previous therapy you've received or how many lines the therapy you've been on. It's a great discussion, and also discussing what you've had before that could potentially be recycled again. Maybe in combination with a new therapy - is really good to know. As I said before, clinical trials are an option every step of the way during decision-making regarding treatment choices.

Knowing what trials are available and are good options can give patients a chance to be on promising agents that are being utilized in new and exciting ways and sometimes in combination with standard therapies. The last part really drills down to comparing different treatment options and how the side effects may or may not differ between them. This tool is comprehensive, but it's a fantastic way to keep track of your care and understand your individual disease thoroughly.

More importantly, it's an effective way to have a dynamic conversation with your health care team. We always urge our patients and our caregivers to discuss all medical issues with your doctor or your health care provider. You can even contact the IMF with your myeloma questions and concerns. At the bottom of the tool is the contact information for the IMF including our phone number and the website.

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