Alan Holtzman felt that an angel was on his shoulder when a chance meeting with another CLL patient directed him to a leading specialist. Watch his story.
Why do I have lung cancer if I’ve never smoked? Dianne Stewart, a stage IV cancer patient, asked herself this question following her diagnosis. Hear about her initial stage of shock and denial and her advice for others.
January 24, 2014
Diagnosed with myeloma in 2008, retired teacher Cynthia Chmielewski has moved on to a new group of students: myeloma patients and their caregivers. Working with myeloma patient advocacy groups to mentor and educate other patients, Cynthia has earned the nickname the "myeloma teacher." Keeping up with developing research is key for Cynthia in this role, and she joins us to share her thoughts on the evolving myeloma landscape. She discusses progress in the study of new therapies, strides in managing quality of life and the potential road to a cure for some people with myeloma. With science quickly moving forward, she stresses the importance of patients teaming with a specialist and staying educated to ensure they receive the best--and most current--care.
Made possible through an educational grant from the Patient Empowerment Network, which received support from Onyx Pharmaceuticals, Inc.
View more programs featuring
Produced in association with
International Myeloma Foundation
Be the first to know about new programs and information with email alerts.
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.
Hello and welcome to Patient Power on location in New Orleans
where people gather for the American Society of Hematology meeting. It is really the world series of discussions
about blood-related cancers including multiple myeloma. And you have patient activists here,
advocates, activists, whatever you want to say, bloggers, people who influence
all the rest of us.
Here is one of my favorites, Cynthia or Cindy Chmielewski—--did
I say it right?
Chmielewski is good enough.
I always get it right.
And she is just a darling woman who is so devoted to anybody with
myeloma anywhere in the world. And you
tweet, and you’re on Facebook. You have
how many followers now?
I have 1,500 followers on Twitter.
All right. And more on
Patient Power, of course, here, too. So
you’ve been at this meeting, and the IMF has helped make that possible, the
International Myeloma Foundation. What’s
your impression of what’s going on for our audience of patients?
Well, I think it’s a very exciting time. There are things that I’m hearing that I’m
pretty excited about. I’m hearing the
word “cure” for the first time.
I’m hearing that, that some of the doctors feel that there
might be a small portion of patients that they could actually cure. And if they
start treatment early enough and if they develop some new types of drugs and
then if they are able to get the sensitive type of tests to measure what they’re
calling minimal residual disease, so this is something I hadn’t heard of
probably four or five years ago. So that
What was exciting here too is I’m hearing more doctors, maybe
they have in the past.
But I wasn’t tuned into it, but they’re thinking about the
quality of life for the patients. When
they’re doing their treatments, they’re talking about redefining their types of
treatment so that the quality of life for patients is better. Last night, I heard one of the doctors talk
about that when we look at treatments for our patients we’re not only looking
at quantity of life, but we want also to look at the patient’s quality of
life. So that was pretty nice, as a
patient seeing from that perspective.
I’m hearing that there are ‘new classes of drugs being
investigated. The monoclonal antibodies
are seeming to have some effect on myeloma, and some of the HDAC inhibitors,
and I think there’s a KSY…--
Yeah, it’s hard to keep it all straight.
Yeah, I’m not the scientist, so I just get the overall view,
but the passion I’ve seen in the doctors is just wonderful. Their passion for curing myeloma and finding
best treatment lets me pursue my passions, and that’s pretty neat.
So, Cindy, do you feel hopeful?
I mean, look, you’re in active treatment, and you know I look at you on
Facebook, Oh, I went for treatment today, or I’m a little tired today. I mean it’s a rough go, and you keep on
keeping on. But do you have positive
feelings from all this?
I do. I am in active
treatment, but thankfully with the new targeted therapies the side effects are
very minimal. So I could, for the most part, move on with my life. There are’ some days where I’m a little bit
tired, and there are’ some days I’m full of energy. But I feel very positive,
because I feel what I’m using now is going to keep me alive long enough to use
next best drug.
And I think you know some of the survival statistics they have,
and they say, you know, an average survival of seven to 10 years, but that’s
with the drugs we have now. We don’t
know what’s going to be happening in the future, so those statistics are
probably old by the time they’re published.
So I’m feeling very, very hopeful.
Now, the reality, of course, is any of us who have known people
over time in myeloma, we’ve lost some friends too.
So it’s—--we have our individual journeys. I don’t have myeloma. I have other cancers. But we all know people we’ve lost, but we
have other people who have been living well for a long time. So it sounds like it’s important that people
connect with myeloma specialists. And with this landscape of treatments and
working on it and improving it, they need to be educated and to have an ongoing
discussion with a provider that they trust, right?
Exactly. I just, you
know, I was sitting at the satellite session on Friday afternoon, and I always
love the satellite sessions because they do, --the point/counterpoint. Doctors take different points of view, and
they debate each other and challenge each other. And I’m thinking there are’
all these treatment options out there.
There’s not just one book that you open and say you have myeloma, you’ve
had it for this many years, and this is what you should be doing.
And when I was thinking about that, I was thinking how
important it is for me to educate myself so that when I go to my doctor I could
ask questions and ask him why he’s choosing a particular type of
treatment. And I believe with everything
that’s coming up that you really need to see a specialist to guide your
treatment. I just can’t imagine a
general oncologist being able to keep track of everything new in
And they’re talking about different types of myeloma now. It’s not just one. They’re breaking them into different
categories. So depending on your genetics and how you respond and all these
factors, your treatment may change.
Sometimes you might need maintenance treatment, sometimes you may
not. So I just think there’s just way
too much for a general oncologist to really be confident, especially in the
relapsed/refractory setting—maybe a newly diagnosed patient, maybe, but I still
think you should have someone guide that treatment.
I couldn’t agree more.
Now, you are not alone.
You have Cindy. You have a lot of
other leaders who are online, and you also have our friends at the
International Myeloma Foundation, one-to-one resource of support helping to
direct you. There are groups around the
U.S. and many around the world also so that you are not alone with maybe a
diagnosis of something you never heard of.
And also one other point, wouldn’t you say, many people, not
everybody, but many people are truly senior citizens who are diagnosed with
this, and there may be that first doctor saying, well, you’re older, and we’ll
just help you feel better. They deserve
Yeah, and it was so exciting because a lot of the presentations
I’ve seen so far they’ve targeted just that group of senior citizens, patients
over 65 who are not eligible for transplant. And they found that some of these
novel therapies are working so much better than some of the older combination
therapies in that these people are living much longer. They’re seeing the overall survival of that
elderly group of myeloma patients has increased maybe by 25 or 30 percent in
the last 10 years. The statistics I’m
saying may be a little bit off, but it was just.--
You don’t have to be the scientist. I think people look to you as sort of their
barometer. Here you are, you’ve been
living with it. You’ve chosen as --myeloma
teacher, that’s your Twitter name, right?
That’s it, right.
A--nd as a former school teacher to teach us all and really to
help give us a window into this. And I want to thank you so much for what you do.
Well, we’re all very devoted to you, a patient or a family
living with multiple myeloma, so you get the best, have the hope for a long
life and certainly the news here is things are changing. But again, get informed, marshal the
resources that exist and make sure you’re getting the best for you.
On location in New Orleans at the American Society of
Hematology with my dear friend Cindy, I’m Andrew Schorr. Remember, knowledge can be the best medicine
Dr. María-Victoria Mateos, a leading myeloma researcher, explores the excitement surrounding the management of newly diagnosed elderly patients and the hope for a new standard of care.
Published: January 15, 2014
Jack Aiello joins us to share the roots of his commitment to advocacy and key steps that patients can take to become their own best advocate.
Published: January 9, 2014
Dr. Edward Libby of Seattle Cancer Care Alliance, broadens our understanding of the role of genetics in myeloma and what tools we have available to help guide treatment.
Published: December 18, 2013
By Andrew Schorr