How can I use my clinic time effectively - what should I be discussing with my doctor?

[Music] how do I use my clinic time effectively I think it's really important for you to prepare for your doctor's appointment or your consultation with your myeloma specialist they have a limited time in the clinic might be 20-30 minutes to spend with you and if you go in asking your doctor's questions that you may be able to learn on your own that or maybe generic information about what is myeloma or what is an EM spike you're wasting that valuable time where you could be talking one-on-one about your disease and about your side effects and about ways that your disease can be monitored or a treatment plan what would your long-term goals what's your strategy so you don't want that focus to be on general information where you could give that information maybe through a support group maybe through a webinar maybe through health treatment university like this video is part of and you want to spend that time in the clinic talking about you and your specific situation so second opinions consultations will vary both in terms of cost and preparation some consultations might ask you to retake your medical tests at their facility so that there they have those lab results available within their systems but today more and more of those myeloma specialists are able to work with your local doctors and obtain your test results either from them or from you directly make sure you also prepare a list of questions to ask these may be questions that you've already asked your local oncologists and you just want to hear another response from a myeloma expert they may answer the same way your local oncologist did in which case you probably feel good about that they may have a different opinion in which case it's important to bring that back to your local oncologist and ask whether or not that second opinion should be considered so I think it's always valuable if you have another person with you that other person at a consultation will hear things that you don't necessarily hear they may ask questions that you don't think of that are important to get answers to I think it's also good to bring a tape recorder back in the 90s when I did this I would always write my set of questions on a piece of paper and I would write down the answers and I tell the doctor wait don't look at the next question and answer it until I'm done writing the answer to your to my last question so however you can get the information whether it's pencil and paper recorders or another person being with you I think all of that can be valuable you should write out your questions so that you don't forget them when you're in the doctor's office it's a good idea to take a friend or a caregiver with you to your appointments and it's also important even to record those interviews those office appointments if you don't understand something seek clarification and it's quite possible that your caregiver or your friend who accompanies you will help remember some of the things that you forget when you're at your appointment what questions should I ask my doctor 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 you're 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's 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 gonna 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 I think other questions you should ask your doctor are what are the available treatments for me and what are the risk and benefits of all those treatments and what side effects would they have another question that I think that probably has a newly diagnosed patient you might not think of but you might 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 may be getting a very active drug upfront where you might not have access to that drug outside of the clinical trial and as you learn more about this disease you might ask that myeloma specialists what about clinical trials they may not be available through your local doctors but they may be available at a facility where you're getting a second opinion or bottom line you might just ask that doctor hey Doc what questions should I be asking you well I think the most important thing if you already have some data you want to be able to take that data with you I think also if you you want to make sure that they're doing testing for fish for gene expression profiling and and you want to make sure that you have a baseline based on that information you want all the standard tests as well so you want to make sure that they are done and you also want to know whether or not they do MRD testing as you're going along to determine you know how your treatment is progressing I think that's quite important as well so if they don't answer those questions to your satisfaction then maybe it's another my loan specialist that you want to talk to one that's further along in their education process as to you know what the best way of controlling myeloma is 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 or thankfully not in the position where we were before where once somebody relapse 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 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's 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 you [Music]