What questions should I ask my doctor at diagnosis?

What questions should I ask my doctor at diagnosis?

I think the diagnosis of any malignancy and especially multiple myeloma is very hard to hear. And there's a lot of information that gets thrown at patients just at the get go. And it's sometimes so overwhelming that the important questions get buried under just a barrage of information and data. I think the most important questions are important things arise and to reassure the patient that, you know, this is very treatable.

And these patients who have multiple myeloma that live here for years and years and we're inching ever so closely to the cure, hopefully, I believe from a patient perspective, they need to ask how does this fit in their regular life? Because the goal of treating multiple myeloma is for patients to get a treatment that is not only effective, but extremely palatable.

So first things first. What does a disease mean? What does that look? What is my next six months look like? What does my next year look like? How often do I need to come in for a treatment?

What is my staging? What are the cytogenetic abnormalities that are seen within my disease? What are the risk factors that could have helped that happen?

And then obviously, when we look at treatments, I'm a big proponent of clinical trials, so I always try to discuss any clinical trials that are coming or available to patients because I believe that that's how we do move the science forward.

And I think it's it's very easy for doctors just to write off the protocol. But for patients, those are the drugs that they're going to be taking and they need to know what is the  benefit, what are the side effects, what to expect, what not to expect.

And more importantly, now in terms of side effects, we live in a post-COVID world, but that is not totally free of COVID yet. And there's also a lot of other infections going around. So what is infectious risk for them? What can they take to mitigate those risk, both in terms of medications but also in terms of precautions that can they do?

And more importantly, it is also important to ask how long is the treatment going to last?

There always has to be, I think, a good discussion about the role of stem cell transplant, whether that's in the future or not. And why not? And also, importantly, to talk about what to expect in terms of just how you're going to do and how you're going to feel, but also, more importantly, what is the disease doing to the patient.

So I feel like one one thing that myeloma specialists are doing more and more now is getting a better grasp of symptom management because it's not just treating the disease, but you treat the patients. We don't treat numbers in a computer. We treat patients in front of us. So is there pain well controlled? Are they eating and drinking okay? Is the nutrition up to mark? Do they need to see a heart doctor? Do they need to see a nerve doctor? Who else needs to be involved? You know, this is truly a team practice, so making sure you get the best players on your team from the get go. I believe is probably more important a decision that a patient can ever make.

I think any myeloma patient diagnosed nowadays should the first question that they should ask. Have you done all the evaluation for my disease that needs to be done? We still see patients, for example, get skeletal survey X-rays on the bones. I don't think that's enough nowadays for diagnosis of myeloma or even diagnosis of MGUS, of smoldering myeloma.

So I think patients should ask for more imaging that we can include a PET-CT scan. At our center here, we are doing more bone marrow MRI, whole body bone marrow MRI, which I think is the more sensitive method actually to detect plasmacytomas.

And we think at least I think that should be part of the routine workup.

I think every patient should have a bone marrow examination and every patient should have cytogenetics and fish. Every patient should have the bloodwork we talked about, including albumin the beta two microglobulin, the LDH, the hemoglobin, the creatinine.

These are routine lab work that are done in any setting. And then you come to the sophisticated settings which is happening nowadays.

If you get the diagnosis, should you send your bone marrow for what's called MRD testing or minimal residual disease, Meaning should we get a small piece and send it to that lab to get the signature of the myeloma cells? So if you go into remission, we can monitor your MRD testing later on. That's still experimental. We do it in our center on clinical trials, but in the community, when patients ask for it, usually the answer is I'm not going to do it because insurance doesn't pay for it.

The second question you should ask is, So what's my treatment plan? Am I a candidate for transplant or I am not a candidate for transplant? And if you're a candidate for transplant, then you probably should see a transplant physician or a transplant center referral before you start treatment. Treatment, they change. And the question is going to be, will I be on three drugs or four drugs?

How many cycles will I get? I think these are questions that patients should be asking.

Then if you go for transplant after transplant, will I get maintenance? Was one drug or two drugs? How about the new drugs that are out there and if the patient is not a transplant candidate? So how would you want to treat me and what's the plan?

And there is multiple opinions on what's the best approach, whether to go for transplant or no transplant and the role of immunotherapy. And these are all evolving areas. So I think myeloma patients, unfortunately with more options are getting more opinions as the joke goes. If you see three myeloma doctors, you get five opinions because each one has his own approach.

Should I consult with a myeloma specialist?

In our center here, you probably know we have four physicians seeing myeloma patients.

I see about three newly diagnosed patients every week. So that's my consult, I see about 3 to 4 a week.

My junior colleague, seems the same number, maybe a little less, but he sees all the inpatient consults.

And we're in, as you know, seeing fewer but not a lot. So in our center here we see somewhere between six and seven myeloma a week. We follow at least maybe 1500 patients in our system. We have about 2 to 300 patients. So I'm aware of the data that say if you see a myeloma specialist, your outcome will be better than if you don't see a myeloma specialist.

And I think most of our people and most of our oncologists in the area refer patients to us, whether it's a transplant or even not transplant, they come to us for what should I do?

We see a lot of patients you mentioned about multifocal disease, and we just actually saw a patient to there is a multifocal disease is refresh in my mind. I just saw a 42 year old was multifocal myeloma and this patient was just walking around with no issue except some pain in the back and a PET scan showed multiple areas.

So I think, as I said, we are redefining everything with the new technology we're using with the imaging. More patients are coming to the forefront more frequently and there is a lot of initiatives to get patients to centers like ours. African American Initiative and disparity is a huge issue for IMF as you might know.

So whenever a patient is newly diagnosed with myeloma or any other health condition, there are lots of questions that come about. Lots of concerns and considerations and things. And so one of the most important things is to ask your physician is who's the team who is there to help take care of you? Are there nurses, are there nurse practitioners, Are there pharmacists?

What are the other resources that are available to help provide information and education on the disease? I think it's important for people to understand as much as they can about their disease and the overall treatment plan, but not try to absorb all of it at the very beginning, to take it a step at a time. We tend to schedule frequent appointments in the newly diagnosed setting weekly or every other week to try to work on helping patients gain all the information that they need.

And we have a multidisciplinary team with a pharmacist, a nurse practitioner, a clinical nurse who are available to answer questions sometimes faster than the physicians are because they're dedicated to taking care of our myeloma patients. And so it's often critical to know who the team is and know how best to get the information from there. But would want to make sure that people understand their diagnosis, understand the treatment plan, the expectations, and also the social supports that are available, as well as contact with assistance programs because the cost of therapy is expensive.

And so we make sure that our patients are plugged in and have access to all of the available resources that they might be able to qualify for.

I believe all patients should be actively engaged in their care. And to be able to do that, you need to be informed. And the best way to be informed to begin with is to ask your doctors questions. And I think if you're newly diagnosed or at any point of your care. There are certain things you need to know.

First of all, you need to know what type of myeloma do you have? How is your disease going to be measured? Do you have any risk factors that's going to make your disease easier or harder to treat? So I think those are questions you want to know. What type of myeloma I have. How are you going to be monitoring my response?

And where do I fit genetically? Did I have genetic testing done? If I did, what kind of genetic testing. Then I think other questions you should ask your doctor, are what are the available treatments for me and what are the risks and benefits of all those treatments? And what side effects would they have? Another question that I think that probably as a newly diagnosed patient you might not think of, but you may also want to ask, are there any clinical trials that I should be considering?

Because sometimes clinical trials may be your best option and just because you're considering a clinical trial doesn't mean the drug was not approved for another stage of myeloma. So you might be getting a very active drug upfront where you might not have access to that drug outside of the clinical trial.

For sure, you want to be talking to your doctor about any potential clinical trials, whether you're a newly diagnosed patient, whether you're going through transplant or on maintenance, whether you're relapsing, you definitely want to know whether there's any options outside of the currently FDA approved options. I think it's always really important that you ask your doctor what they think about your cytogenetic risk.

Make sure that you've had the appropriate tests done and that they're taking that into account when making treatment recommendations. And then I think it's also really important to talk to your doctor about, aside from clinical trial, all the options that are out there and then how those various options might alter your quality of life because we now have so many different drugs and so many different combinations, we're thankfully not in the position where we were before, where when somebody relapsed, there was maybe one option.

You just had to do it. Now, with all of these new options, you really have to take into account the patient you should have been anyways. But now that we kind of have the luxury of doing that in terms of saying, well, you have to be honest with your doctor, if you really want an all oral regimen, let them know that. They might tell you that we have one.

It's not in your best interest, but at least ask those questions. Ask about side effects and how that might impact you. Let them know that you are working or not working or working part time and what works with your life. Let them know about important life events so that they can really tailor a treatment decision for you.

Whenever we see patients and their family members, it's really important to have this as dynamic a relationship as possible, because we all make sure patients and their caregivers have the best possible experience. And we realize that the treatment itself is complicated and there are so many layers to the treatment.

So I think questions that, you know, we think patients and caregivers should think about asking their provider would be, you know, in terms of the treatment, you know, terms of when should they call their provider, you know, in terms of what symptoms or side effects, They should call the provider or just simple things like when they need a refill, the medication, who they should call, what are the mechanics of that.

I think things to know about in terms of, you know, the schedule of the treatment and things to also appreciate would be like what's involved with the treatment, How long is the treatment? Because the regimens are also so different and at the end it is really customized per patient. So, those are would be some initial questions to ask along with, you know, what are the expected you know, what the expected side effects of the treatment.

What do you expect? You know during the first week of treatment, a month in the treatment, three months in the treatment, I think other practical things that come up would be, you know, patients and always patients ask me would be, you know, if they're going on a trip or they're going in a wedding or on a vacation. How do you incorporate that into the schedule of the treatment?

Or what happens if they have to have a procedure? You know, you know, life goes on with our patients, right? So some patients, they had to have cataract procedures or colonoscopies or they have an elective surgery. So I think it's always important for us to know when those happens. So that way we can work with our schedule to make it work with the patient's schedule.