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Diagnosed with Myeloma? An Advocate’s Key Advice

Diagnosed with Myeloma? An Advocate’s Key Advice from Patient Empowerment Network on Vimeo.

Where do you start after being diagnosed with a myeloma? Myeloma survivor and advocate, Jack Aiello, shares key advice on second opinions, keeping up with lab tests, and educating yourself about your myeloma.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Discussing Treatment with Your Doctor: Key Questions to Ask

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Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Transcript:

Jack:

So, I’m often contacted by either newly diagnosed patients or a friend of a newly diagnosed patient and asked to – by that patient, what should they be doing.

And I usually give several pieces of information. One is, as I previously mentioned, getting second opinions are important, but I’ll also talk about how important it is to understand your lab values. It’s not so important what a particular number is that month, but what is important is the tracking or trend of those lab numbers. You should be asking your doctors what myeloma markers are they looking at to determine if a treatment is working or not. You can become familiar with those markers as well and track them yourself.

There’s some tools out there; you can also just put them in a spreadsheet if you like. But it’s a good way to kind of stay on top of your own myeloma; it’s also helpful, if you do ever want to get a second opinion, to be able to share that information with others.

And I think that when talking with that newly diagnosed patient as well, I think it’s important to remind them that – there has been so much progress forward; they will hear that the good news is there are many, many more treatments out there for myeloma, certainly than when I was diagnosed 24 years ago.

But the negative side of that is, there are certainly many, many more treatments out there than when I was diagnosed 24 years ago, but you don’t necessarily know what the best treatment is for you. So, that goes back, again, to working closely with your oncologist, working with that second-opinion doctor, understanding your numbers, understanding what your myeloma stage was and maybe what your risk factors are that you can learn from myeloma tests that are being taken, and try to get as full

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate from Patient Empowerment Network on Vimeo.

Keeping up with all the changes in myeloma treatment and research can be daunting. Myeloma survivor and advocate, Jack Aiello, shares his tips for keeping up with the latest, including a list of myeloma educational resources.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Should You Consider a Second Opinion? Advice from a Myeloma Advocate

Office Visit Planner

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Transcript:

Jack:                           

So, it’s interesting. I’ve mentioned previously how much is changing in myeloma, and I’ve been asked a question of, “How do you stay abreast of all of those new changes?”

And there are several ways. There are some excellent organizations that focus on myeloma. The International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society, Myeloma CrowdCare are just four of them to mention. PEN is Patient Empowerment Network, Patient Power is another site that both offer expertise and help with myeloma. So, websites is a great tool. Many of those websites also offer both webinars and seminars and that can be an excellent resource to learn about myeloma or ask specific questions and get them answered during a live webinar.

And typically, all those webinars are recorded for later replays, so that you can listen to them if you weren’t available to listen to them live. I’m fortunate also that I’m able to attend several of the myeloma conferences. There’s a conference called ASH, the American Society of Hematology, that I’ve attended for the last 10 years. There’s a meeting of the International Myeloma Working Group that I’ve been fortunate to be invited to for the last six or seven years.

These are meetings that doctors meet at to determine best treatments for patients; they provide the latest on research of newer treatments for patients as well, and I get to hear it firsthand. And I think, as I said, the support groups are a good way to stay abreast of the information was well.

Most patients don’t want or need or are not going to get as deeply as involved as I am, but those support groups are a terrific resource for hearing what’s happened over the last month or two. There’s a drug just approved last month for myeloma, and there have been drugs approved previously in the years previous to 2019. So, I think that there are a number of ways to really become educated and more knowledgeable about myeloma.                            

Preparing for Your Office Visit

Preparing for Your Office Visit from Patient Empowerment Network on Vimeo.

Dr. Elizabeth Bowhay-Carnes shares specific tips and advice so that you can be prepared for your doctor’s appointments, including bringing along a support person.

Dr. Elizabeth Bowhay–Carnes is Director of the Adult Non-Malignant Hematology Program and Co-Director of the Adolescent/Young Adult Oncology Program at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center.  More about this expert.

See More From The Pro-Active Myeloma Patient Toolkit

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Should You Consider a Second Opinion? Advice from a Myeloma Advocate

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Transcript:

Dr. Bowhay-Carnes:   

When a patient comes to their office visit or hospital visit with their treating team, one recommendation I have is that patient has a support person with them. Four ears are better than two, and we all hear a little bit different parts of the conversation. So, having a support person with you to as many visits as possible is important. As a patient, if you’re undergoing treatment, you may be either overwhelmed or not feeling particularly good that day, and so having an advocate is something that we always encourage people to have, if possible.

Secondly, we recommend that, as a patient, you sit down before your office visit and make a list of questions or concerns or just general thoughts that you have.

We do not want people to feel rushed during their office visit, but sometimes we get talking about one particular topic of conversation, and that may not be what is particularly important to the patient that day.

So, coming prepared to your office visit with a list of questions, concerns, or general thoughts really goes a long way in making sure that your voice is heard and that this is your time during your office visit.

The Benefits of Seeking a Second Opinion in Myeloma

The Benefits of Seeking a Second Opinion in Myeloma from Patient Empowerment Network on Vimeo.

Dr. Cristina Gasparetto provides advice for patients seeking a second opinion following a myeloma diagnosis. Dr. Gasparetto outlines the benefits of a second opinion and shares how she collaborates with a patient’s local doctor from afar.

Dr. Cristina Gasparetto is Professor of Medicine at Duke University Medical Center and Director of the Multiple Myeloma Program at Duke Cancer Institute. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Should You Consider a Second Opinion? Advice from a Myeloma Advocate

  

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Discussing Treatment with Your Doctor: Key Questions to Ask

Transcript:

If patients are concerned about hurting a doctor’s feelings, I guess, with a second opinion, I think that they have to understand this is their life, and we physicians, we understand the complexity of the disease, and that it’s necessary to seek a second opinion.

And we can guide their treatment, sometimes in a different way. And I don’t think patients need to receive direct treatment in the major hospital, where they have their expert. I think it is a team effort, and I do have that collaboration with my fellow physicians over time, so I don’t directly treat the patients, here at Duke, and this is sadly. But I maintain a communications with their physician, so we can work together, and I can provide guidance, recommendations. So it’s very important, and I think a lot of the community physicians feel comfortable having that type of collaboration on this, so it’s a team effort.

And don’t be afraid to relay the expectations to the physicians. We need to know. We need to know how important a certain aspects of their life, quality of life. There are patients who want to continue to work, and bringing them twice a week in our clinic is not really helpful. Put them through a very aggressive chemotherapy regime may not be ideal for certain patients that want to stay home or be treated by their local physicians.

That’s another thing, my collaboration with the community physician is very important, because, if a patient lives 3 hours from me, I don’t expect the patient to come to my clinic every week to receive the same treatment that can be delivered locally, five minutes from their house. And that’s the reason why it’s important to maintain collaboration, a team effort between the expert and the community physician, so the treatment can be delivered when it’s more convenient.

I never exclude the physician, the referral physician, the referring physician. So, because ultimately, we want the best for the patient, and at the end of the day, they are actually, the physician start to feel more comfortable, like I do have a lot of referring physicians calling me continuously, updating me on a patient’s status, so we can work together. We can change treatment, adjusting the dosage, and so, it’s truly a collaboration.

Discussing Treatment with Your Doctor: Key Questions to Ask

Discussing Treatment with Your Doctor: Key Questions to Ask from Patient Empowerment Network on Vimeo.

Dr. Elizabeth Bowhay-Carnes discusses essential questions to ask your physician when discussing treatment during an appointment, including the need to plan and educate yourself about your options.

Dr. Elizabeth Bowhay–Carnes is Director of the Adult Non-Malignant Hematology Program and Co-Director of the Adolescent/Young Adult Oncology Program at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. More about this expert.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

The Benefits of Seeking a Second Opinion in Myeloma

Office Visit Planner

Preparing for Your Office Visit

Transcript:

Dr. Bowhay-Carnes:  

As a cancer doctor working with patients and families day-to-day, I notice that both physicians and patients are scared to talk about worst-case-scenarios.

I’m guilty of this, and I know a lot of my colleagues, we go through our visit with patients, outlining treatment plans and with the assumption that everything is going to go perfectly as planned, and there’s not going to be any surprises. I think it’s very important that patients and family, friends, sit down with their treating physician and ask them directly, “What happens if things do not go as planned?” Other ways to word this would be, “What if this particular step in treatment does not work? What are some complications that are possibilities,” and if the treatment does not work or a patient has complications, everybody needs to ask, and at least be on the lookout for, “What are the next steps? What are different options?”

It’s always important to hope for the best, plan for the best, but it’s important for a patient and family to be educated about different possibilities and what if things do not go as planned.

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Hesitant to Join a Support Group? Encouraging Advice from an Advocate from Patient Empowerment Network on Vimeo.

Jack Aiello, diagnosed with multiple myeloma in 1995, provides his perspective on the benefits of joining a support group when faced with a serious diagnosis. He provides encouragement to those that may be hesitant to join and shares his own experience as a first-time support group attendee.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Should You Consider a Second Opinion? Advice From a Myeloma Advocate

Office Visit Planner

Discussing Treatment with Your Doctor: Key Questions to Ask

Transcript:

Jack:                           

So, I’m fortunate enough to have led our Bay Area Myeloma Support Group now for about 15 years. I originally went to the Myeloma Support Group when I was first diagnosed in 1995, and I can remember it being fairly overwhelming. People would ask me questions like, “What’s your IGG level?” or “What’s your M spike?” or – “Are you thinking about doing a transplant?” and you find out there is lots to learn with Multiple Myeloma – but it comes with time.

So, in terms of being a participant in a support group, I think the great advantage you have – two advantages really, one, you get to hear experiences of other patients, as caregivers get to hear experience of caregivers as well, an, two, if it’s a good myeloma support group, like ours, we will bring in expert speakers.

They could be doctors, they could be nurse practitioners, we’ll bring sometimes people in from pharma companies to talk about to certain subjects as it relates to myeloma. So, it’s a great learning vehicle, it’s a great sharing vehicle, and I heartily recommend support groups.

So, how do I encourage folks to join a support group? I will share my own experience there. When I was diagnosed in 1995 and I was in a hospital getting chemotherapy, my first chemotherapy at that time, I remember a social worker walking into my room and she said, “I think you really should go to the Leukemia Society Support Group that meets in the hospital tonight.”

And between you and me, I really didn’t want to go. I felt like this was gonna be some type of touchy feely type meeting and I didn’t want to be involved in that, so I told her, “I don’t have leukemia, I have myeloma, so off you go.” And she persisted, and said that the Leukemia Society [The Leukemia & Lymphoma Society] was really involved in supporting all blood cancers including myeloma. And I still fought a little bit, but ultimately, I dragged my IV pole to this meeting and listened to folks. And then, it came around to one individual, a guy named Jim, who was a myeloma patient; and it was the first time I got to see someone living and breathing with the same disease that I had, and that was really important to me.

Jim introduced me to a variety of resources, which was quite limited back in 1995, but it got me on the right track to understand more about this disease, meet more patients and ultimately doctors associated with myeloma. And I don’t think a patient can go wrong going to a myeloma group, whether you are newly diagnosed or whether you’ve been in remission for several years. Share that experience of your own with a newly diagnosed patient because remember what it was like when you were diagnosed, and how overwhelming it was to be told, one,  that you have a cancer, and  two of something called myeloma which you probably never heard of.

So, I encourage all patients to go to support group meetings, if they’re available, and you’d be surprised. There are 150 in the U.S., there are online support groups as well, there are support groups via Facebook and other Internet sites; so, I encourage you to participate as much as you can.

Should You Consider a Second Opinion? Advice from a Myeloma Advocate

Should You Consider a Second Opinion? Advice from a Myeloma Advocate from Patient Empowerment Network on Vimeo.

Jack Aiello, myeloma survivor and advocate, shares his knowledge on the importance and value of a second opinion when diagnosed with myeloma. Download the Find Your Voice Resource Guide here.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

 

The Benefits of Seeking a Second Opinion in Myeloma

 

Office Visit Planner

 

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Transcript:

So, I’m often asked by a patient whether or not they should get a second opinion – and I’m asked in several different ways: One, they love their doctor, they don’t want to change doctors; Two, they believe that their doctor is really knowledgeable in myeloma, and they may very well be. So, what I like to let the patient know is that second opinions can be extremely valuable for a couple of reasons: One by going to a doctor who really specializes in myeloma, you might hear that that doctor agrees exactly with how your own oncologist is treating you.

And, to me, that makes me feel good. Secondly, that second-opinion doctor becomes part of your medical team; they will work with your local oncologist and offer suggestions. And I think you have the best of both worlds. You can continue to go to your oncologist and get treated, but you have that myeloma expert on your side as well. And I know that sometimes patients are worried, “Well, will it offend my local oncologist who I really like and I don’t want to hurt their feelings?” Any doctor worth their salt will really encourage you to get second opinions. They want to deal with educated patients.

If, for some reason, your doctor decided, “No, you don’t need a second opinion, it’s not worth it,” I honestly would consider changing doctors. Because I think there is so much new happening with myeloma that it’s impossible that the general oncologist or even general hematologist to keep abreast of all of the new information out there for myeloma, and I think that that second opinion would be a – offer the patient a great advantage.