[ Inglês] Advice for People Newly Diagnosed With Myeloma

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Topics include: Living With Multiple Myeloma

What do newly diagnosed multiple myeloma patients need to know? During this Patient Café highlight, the panel shares – from one patient to another – helpful advice for others on the start of their journey. Tune in to hear from patient advocates Cynthia Chmielewski, Jack Aiello, Eric Hansen, Matt Goldman, Reina Weiner and Jennifer Ahlstrom ways to live well with the condition, get educated and things to consider when making care decisions.

This is a Patient Empowerment Network (PEN) program produced by Patient Power. We thank AbbVie, Celgene, Sanofi and Amgen for their financial support through grants to PEN.These organizations have no editorial control. It is produced solely by Patient Power.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Cindy Chmielewski:

We have a bunch of leaders in the myeloma community right here.  If you had to give a newly diagnosed patient one piece of advice what would be the one thing you would tell them to do if they were newly diagnosed? Who wants to go first?  All right, Reina.  

Reina Weiner:

I would advise them to find a physician who only treats myeloma, and probably they would need to either get in touch with the IMF or MMRF to get some names in their home area. 

Cindy Chmielewski:

That was a very good piece of advice, Reina.  So besides finding a myeloma specialist, a doctor who only treats myeloma patients, what’s another important piece of advice to give a newly diagnosed patient? What do you think, Jack?  

Matt Goldman:

Well, I’ll jump in real quick. I think don’t Google too much. Stay off the internet when you’re first diagnosed.  It’s helpful but it can also...  

Cindy Chmielewski:

And why do you say that, don’t Google too much?  

Matt Goldman:

Because it can scare you. And information in there, I mean after a while you learn what the good sources are, you know, we talk about some of those, but at first you don’t know what’s accurate, what’s current, what’s good, what’s bad, and if you’re searching just myeloma in general you might come across some stuff that maybe is outdated or not quite accurate.  And while it’s important to do your research you can overdo it and not help yourself mentally.  

Cindy Chmielewski:

So don’t use Dr. Google until you really know where those trusted sources of information are.  

Matt Goldman:

Right.  And I think that’s where advocates and other patients who have lived with the disease really are extremely helpful.  You can’t always, as an advocate you can’t always give medical advice, but you can point people in the right direction and help them sort through things.  

Cindy Chmielewski:

Good, Matt.  Good piece of advice.  How about Jack?  

Jack Aiello:

Well, I would, number one thing I would say is get educated about your disease.  Ignore those bad sources that Matt referred to, but the good news is especially compared to when I was diagnosed in 1995, there’s an awful lot of good of sources out there, whether they are sites like MMRF or IMF or Crowd Care, whether there are—even the pharma companies at least on their products can be good references for information.  Many of the advocacy sites, LLS, for example, and IMF and such, have great videos to help explain, or maybe they have blogs to help explain.  

People learn different ways. Go to a support group.  There’s lots of support groups, 150 or so throughout the US, so there’s a good chance there’s something near you.  Just listen for a while.  I can remember when I didn’t want to go to my first support group. I thought there was too much touchy-feely stuff, and I wasn’t too interested in that.  

But when I met another patient and you find someone living and breathing with this same disease that you’ve never heard of, it can be really impactful.  And hopefully that other patients might lead you to some good resources as well.  So I say get educated and it’s all—and it can be so helpful to your prognosis.  

Cindy Chmielewski:

This retired teacher who says education is key, knowledge is power, but I think you also brought up another important piece of advice.  Find some type of support network, whether it is an in-person support group or an online support community or a family, a friend, friends or family.  You can’t just walk this journey alone.  You have to find some means of support.  

Any other words of wisdom for newly diagnosed patients?  

Jenny Ahlstrom:

I noticed that we had—our family had been through the cancer experience prior to my diagnosis.  About five years before I was diagnosed my brother-in-law was diagnosed with AML, which was a very aggressive form of leukemia, and as a family we went through that shock process I think most myeloma patients go through when they’re first diagnosed.  And so at some level you wonder, you know, well, I’m just going to trust the doctor and kind of move forward.  We lived that process for a year and saw that it didn’t have a great outcome to not become advocates for ourselves.  

When I was diagnosed we made a decision that we were going to do certain things, and so of the time it’s a decision that you make after you are diagnosed in how you’re going to respond to adversity.  So I have something that’s this life-threatening challenge.  How will I deal with it?  

And I’ve seen the gamut. I’ve seen really close friends who did not want to know anything about their disease, and it’s not good.  It doesn’t help them in the end because they do the research that needs to be done prior to the decisions that they need to make, but sometimes they come too late.  So the early decisions that you make in myeloma about who is treating you, how involved you’re going to be in your care and the decisions that you’re making from the get-go really impact the decisions you’re making later on in your care and may open doors or close doors to your treatment.  

So it’s really key that you get over that ostrich with your head in the sand at the get-go so that you can make good decisions as you go.  And funny enough, it makes you feel happier about your care, in my opinion.  

Cindy Chmielewski:

I agree.  You know, as Jack was saying, knowledge is power. It’s important to educate yourself. I too had friends who said, you know, I trust my doctor.  I feel good about what he’s going to do, and some of that stuff scares me.  And I truly believe if you feel that way and if you can’t educate and advocate for yourself you really need to appoint someone as your advocate, someone who will learn about your disease and advocate for you, whether it be a caregiver, a close friend, anyone.  But you can’t just, as Jenny said, keep your head in the sand.  

Any other words of advice for those newly diagnosed patients?  

Eric Hansen:

Cindy.  

Cindy Chmielewski:

Hi, Eric.  

Eric Hansen:

I had a couple other thoughts. I certainly, absolutely agree with everything everybody has said, but I think one other thing you can do would be to get people thinking not in terms of what am I going to do today and what’s going to happen tomorrow.  Start getting people thinking in terms of their strategy.  Where are they going to be in two or three years?  What do they want to do in the next two or three years in terms of their personal goals and medical goals, and so on?  

This is not a—for many of us, and for most of us now, this is not a sprint.  You don’t have to get your affairs in order in the next three or four days. There’s—I’ve noticed too that doctors have like 15 minutes with you usually when you go in.  And so they’re going to try to get closure on a decision. Let’s try this, let’s do this, and we’ll start you on this.  

My question at that point is always, okay, and then what?  What comes next?  If this doesn’t work, then what do we do?  How do we know it worked?  What are the tests?  What are the markers?  And start thinking strategically a little bit about your life because you’ve got a pretty good ways to go yet, and you have a lot to do with how well you do with it.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on September 9, 2019