Deana Chiusano was 39 years old when she was diagnosed with multiple myeloma in April 2011. She sought the most effective treatment for her specific type of cancer that led her to Winship Cancer Institute of Emory University - the state of Georgia's only National Cancer Institute (NCI) designated comprehensive cancer center.
A cancer discovery in Winship's multiple myeloma lab led to enrollment on a trial that has transformed Deana's battle with the disease. Deana lives in Pittsburgh but travels to Atlanta every three weeks for treatment. After years of treatments elsewhere with minimal response, Deana has seen dramatic improvement with this tailored therapy from compassionate nurses and staff.
Joining the show to discuss an innovative tailored therapy for multiple myeloma from a patients perspective, is Colleen Lewis, MSN, ANP-BC, AOCNP, and Deana Chiusano.
Selected Podcast
A Patient Perspective of Cancer Care at Winship Cancer Institute
Featuring:
A cancer discovery in Winship's multiple myeloma lab led to enrollment on a trial that has transformed Deana’s battle with the disease. Deana lives in Pittsburgh but travels to Atlanta every three weeks for treatment. After years of treatments elsewhere with minimal response, Deana has seen dramatic improvement with this tailored therapy from compassionate nurses and staff. Deana recently summited Japan’s Mt. Fuji as part of Multiple Myeloma Research Foundation - MMRF's Moving Mountains for Multiple Myeloma program.
Colleen Lewis, MSN is the Nurse Practitioner Lead for the Phase I Clinical Trial Program at Winship Cancer Institute of Emory University. She serves as a co-investigator on phase I trials and collaborates with physicians to care for patients in the Phase One Clinical Trial Unit.
Colleen Lewis, MSN earned her BSN from the University of Miami School of Nursing. She went on to complete her Adult Oncology Nurse Practitioner training and earn her MSN from Emory University School of Nursing. Prior to joining the Phase I Clinical Trial Program, she was a nurse with the Emory Bone Marrow Transplant Unit.
Winship Cancer Institute of Emory University, Nurse Practitioner Colleen Lewis says, “Deana has been an inspiration to me because she has dealt with a cancer diagnosis at such a young age and has shown great courage. She is a mother of 3 children, continues to work and flies out of state for cancer treatment every few weeks and finds time to support organizations like the MMRF. She is eager to support clinical research, she has always told me she wants to do what she can to help others since she has been so fortunate to have such a great response while on a clinical trial. Deana and her sister who lives in Atlanta and often accompanies her to clinic are great supporters of the Winship phase one trial nursing team and advocates for myeloma research.”
Deana Chiusano & Colleen Lewis, MSN
Deana Chiusano was 39 years old when she was diagnosed with multiple myeloma in April 2011. She sought the most effective treatment for her specific type of cancer that led her to Winship Cancer Institute of Emory University - the state of Georgia’s only National Cancer Institute (NCI) designated comprehensive cancer center.A cancer discovery in Winship's multiple myeloma lab led to enrollment on a trial that has transformed Deana’s battle with the disease. Deana lives in Pittsburgh but travels to Atlanta every three weeks for treatment. After years of treatments elsewhere with minimal response, Deana has seen dramatic improvement with this tailored therapy from compassionate nurses and staff. Deana recently summited Japan’s Mt. Fuji as part of Multiple Myeloma Research Foundation - MMRF's Moving Mountains for Multiple Myeloma program.
Colleen Lewis, MSN is the Nurse Practitioner Lead for the Phase I Clinical Trial Program at Winship Cancer Institute of Emory University. She serves as a co-investigator on phase I trials and collaborates with physicians to care for patients in the Phase One Clinical Trial Unit.
Colleen Lewis, MSN earned her BSN from the University of Miami School of Nursing. She went on to complete her Adult Oncology Nurse Practitioner training and earn her MSN from Emory University School of Nursing. Prior to joining the Phase I Clinical Trial Program, she was a nurse with the Emory Bone Marrow Transplant Unit.
Winship Cancer Institute of Emory University, Nurse Practitioner Colleen Lewis says, “Deana has been an inspiration to me because she has dealt with a cancer diagnosis at such a young age and has shown great courage. She is a mother of 3 children, continues to work and flies out of state for cancer treatment every few weeks and finds time to support organizations like the MMRF. She is eager to support clinical research, she has always told me she wants to do what she can to help others since she has been so fortunate to have such a great response while on a clinical trial. Deana and her sister who lives in Atlanta and often accompanies her to clinic are great supporters of the Winship phase one trial nursing team and advocates for myeloma research.”
Transcription:
Bill Klaproth (Host): Today we get a patient’s perspective on cancer. Joining me is Deana Chiusano. She was diagnosed with multiple myeloma in April 2011 and Colleen Lewis, lead nurse practitioner, Phase 1 unit at Winship Cancer Institute of Emory University.
Deana and Colleen, thank you for your time today. I appreciate it. Deana can you tell me about the day that you were diagnosed? What is the one thing that you recall from that appointment?
Deana Chiusano (Guest): Well actually it wasn’t an appointment. I was already in the hospital for a couple of days when they were running the tests. But so, the day that it was confirmed of the multiple myeloma diagnosis, it was April 27th. It was my son’s second birthday and all I kept thinking was I can’t die. I have to be around for him.
Bill Klaproth: Very scary. So, at that point on, obviously, you said I have to be around for my son. So, what was your next step in your care from that moment?
Deana: I live up in Pittsburgh and so first I was at the Cancer Institute up here in Pittsburgh and I did all the stem cell and all of that originally up here in Pittsburgh. So, I did basically what the normal protocol is, the Revlimid, Velcade and Dex, prepared for a stem cell transplant. And I had my transplant up here in November of 2011.
Bill: And what’s the one thing you learned about your multiple myeloma that you would share with others?
Deana: Well in this whole process, I have learned that mine is – well nobody – everyone’s myeloma is different. But mine is some sort of strain that doesn’t really answer to the normal drugs that a lot of people have success in. And so, everything was a little bit of a struggle for me. Like it took me longer for all of my numbers to go down.
Bill: And you are in remission now?
Deana: Yes, I am in what they call complete response.
Bill: Well that is great news and we are very happy to hear that. So, going back to your diagnosis and those days back then; how did you find Emory’s Winship Cancer Institute?
Deana: I found Winship because of my sister. She is in Georgia and once I was diagnosed, she got very involved and went to any kind of seminar or lecture that Emory had about multiple myeloma. And she actually met people who had multiple myeloma that went through Emory and once my cancer came out of remission twenty months later, so I think it was about September of 2013 and we started all the same protocols again and they weren’t working. My oncologist up here said I have nothing left for you. You are going to have to do another stem cell transplant. And I didn’t want to do that because to me that felt like that was my last defense if I couldn’t use medication and the stem cell that’s it. if this one didn’t work too then I would have nothing left. So, at that point, my sister said that’s it, we are going down to Emory. Send all of her files down there. And I had an appointment in June of 2014. I met Dr. Lonial and he took a bone marrow biopsy, asked if we would take – if I would be willing to take extra bone marrow for testing. I said sure. And it turned out that one of the drugs they were testing in the lab matched with my strain of myeloma perfectly. And so, I have been on the clinical trial ever since.
Bill: Do you feel that if you would have never gone to Winship things might have taken a turn for the worse?
Deana: Absolutely. Absolutely. Because I think the biggest thing I have learned in all of this, is you need to go see a specialist. I mean my oncologist up here, I love him. He’s great, but he was not a specialist. They didn’t have all of the science and the knowledge of what is going on in the myeloma world up here. So, if you go to someone that concentrates on it and they know what’s on the cusp and what’s going on they really can help you.
Bill: So, you were able to notice the difference in Winship right away. Is there something that stood out for you from the moment that you went there?
Deana: Well it’s having the specialist who knew exactly – in looking at my labwork, well this is why all of these drugs – drugs that have been approved by the FDA. He was like well that’s why this doesn’t work for you because your myeloma is this strain and this drug that you have taken isn’t going to work for you either. You need to look at I forgot what he even said, but whatever kind of strain of drugs I needed were not available up here for me. There was just more there at Winship.
Bill: So, the expertise then you received at Winship really tilted the tide in your favor. And you mentioned you were in clinical trials. Can you tell us about that?
Deana: I’m still in a clinical trial right now, actually. Originally, I can’t remember, I don’t know if Colleen can remember the drugs that Dr. Lonial thought that I should be trying and then when they studied my myeloma up in the lab and they found this – once that drug within – I mean for me, none of the normal drugs approved by the FDA were working for me and if they did, my numbers went down very, very slowly. So, I was told that I was a slow responder and it was actually a good thing. When I took this clinical trial drug, within one and a half cycles, I was in remission. And it was awesome because I didn’t think that was ever going to happen for me. I thought it was going to be a long drawn out process. But I’m still on the clinical drug. It was supposed to be a ten-cycle study but I was still doing well after the ten cycles so the drug company has kept me on it and I think on Sunday, or Monday, I start cycle 61. So, I have been on it for over three years.
Bill: Wow. So, it sounds like being on the clinical trial and that specific drug really saved you life.
Deana: It absolutely saved my life. Because I don’t think – to hear your oncologist say I have nothing left for you is not really a good thing to hear. It doesn’t make you feel good.
Bill: Not very comforting. Very scary.
Deana: Not at all and so I don’t think that I would be here right now if I didn’t go down to Winship. And I am thankful every single day for all the doctors and all the nurses at Winship.
Bill: We just heard about the care there at Emory and how pretty much it saved Deana’s life. Can you tell us about what’s unique about Winship from your point of view when it comes to treating someone like Deana?
Colleen Lewis, MSN, ANP-BC, AOCNP (Guest): Absolutely. We really put the patient at the center of everything we do. We surround the patient with a multidisciplinary team of exceptionally trained physicians and advanced practice providers, nurses and support staff to really focus on ways that we can treat the patient and advance science.
Bill: And as far as the medical staff there and the nursing staff; can you tell us about what’s unique about your staff and the alignment around multidiscipline?
Colleen: Absolutely. So, we are so fortunate here at Winship and especially in the Phase 1 clinical trial unit. We have phenomenal nurses. They are seasoned, well-trained, very well versed in the requirements of clinical trials and are some of the most caring individuals you can interact with. They treat the patients like family. So, not only are the patients in the best hands possible because they are so well-trained and meticulous with the way the clinical trials are conducted; but they do it in a manner that’s fun and they have fun with patients and treat everyone like they are part of the family. So, it really makes what is a very difficult time for patients a little bit better. At least that’s our goal when we are treating patients.
Bill: And Deana, you can speak directly to that then too, right that as Collen was saying kind of that treating patients like their family?
Deana: Yeah, I love going down there. I have a great time. Colleen knows, it’s a big party. And we have a lot of fun and you actually forget the actual reason why you’re there is to get treatment and to get medicine to make you feel better. I get there, and I feel better and I feel like there is nothing wrong with me.
Bill: And Colleen, can I talk to you about your work a little bit? What specifically drives your work in multiple myeloma?
Colleen: It’s patients like Deana to be honest that really motivate me to continue my work in myeloma. It’s such an exciting time to be in oncology clinical trial work, but specifically in multiple myeloma because there’s more new treatments today available to fight myeloma than we have ever had in the past. And that’s all been because of clinical trial work and the patients most importantly, who have stepped up and said yes, I do want to help advance science and all the clinicians and scientists working together to advance our treatment of this disease. So, it is exceptionally exciting for me to be a part of that mission. And the patients that we serve are truly at the heart of that for me.
Bill: And it has got to be a special feeling when you see the success with people like Deana.
Colleen: Absolutely. That is exactly what we are working so hard to see. To have someone like her who really struggled through other treatments, didn’t get the response you would hope for and then comes on a clinical trial and is now in a complete response is just phenomenal. And that’s really what we are all searching for, for all our patients. And unfortunately, we don’t always achieve those results, but we work harder every day so that we can attempt to get there for other patients.
Bill: And Colleen, I am sure that you have probably heard that before from a patient saying I was at my wits end, my other provider didn’t know what to do and thank God, I found you. You saved my life.
Colleen: We have and that’s our goal with our Phase 1 clinical trial program especially is to fill that niche for patients where we have enough clinical trial offerings that when patients are out of other standard options, the can look to us as a source of hope, that perhaps we have something to offer that other centers may not have had to offer them.
Bill: I love that line a source of hope. How important is that? That’s wonderful. And let me ask you this Colleen, so what does it mean to be part of a healthcare organization that is Magnet recognized and has an NCI designated comprehensive cancer center?
Colleen: That NCI designation really recognizes our center for scientific excellence. It demonstrates our commitment to really integrating research and patient care. That our goal is to care for patients and really advance the way we treat cancer in general. So, we are part of a network of centers and we collaborate across the country to really find novel ways to treat patients. And in several of our hospital entities in our healthcare organization, are Magnet recognized which means that we have a commitment and have demonstrated nursing excellence. And that is so important because I think we can all agree that excellent nursing care really is a huge component of excellence for a center.
Bill: And that’s something very important for patients too, when they learn that. That’s just another source of comfort for them, right?
Colleen: Absolutely.
Bill: Well that’s so good. Well thank you both for your time today. Deana, we are so happy that you are in remission and Colleen thank you for the wonderful work that you do there. We really appreciate it and thank you for spending some time with us today and Deana sharing your very important story. For more information please visit www.emoryhealthcare.org/cancer , that’s www.emoryhealthcare.org/cancer . You’re listening to Advancing Your Health with Emory Healthcare. I’m Bill Klaproth. Thanks for listening.
Bill Klaproth (Host): Today we get a patient’s perspective on cancer. Joining me is Deana Chiusano. She was diagnosed with multiple myeloma in April 2011 and Colleen Lewis, lead nurse practitioner, Phase 1 unit at Winship Cancer Institute of Emory University.
Deana and Colleen, thank you for your time today. I appreciate it. Deana can you tell me about the day that you were diagnosed? What is the one thing that you recall from that appointment?
Deana Chiusano (Guest): Well actually it wasn’t an appointment. I was already in the hospital for a couple of days when they were running the tests. But so, the day that it was confirmed of the multiple myeloma diagnosis, it was April 27th. It was my son’s second birthday and all I kept thinking was I can’t die. I have to be around for him.
Bill Klaproth: Very scary. So, at that point on, obviously, you said I have to be around for my son. So, what was your next step in your care from that moment?
Deana: I live up in Pittsburgh and so first I was at the Cancer Institute up here in Pittsburgh and I did all the stem cell and all of that originally up here in Pittsburgh. So, I did basically what the normal protocol is, the Revlimid, Velcade and Dex, prepared for a stem cell transplant. And I had my transplant up here in November of 2011.
Bill: And what’s the one thing you learned about your multiple myeloma that you would share with others?
Deana: Well in this whole process, I have learned that mine is – well nobody – everyone’s myeloma is different. But mine is some sort of strain that doesn’t really answer to the normal drugs that a lot of people have success in. And so, everything was a little bit of a struggle for me. Like it took me longer for all of my numbers to go down.
Bill: And you are in remission now?
Deana: Yes, I am in what they call complete response.
Bill: Well that is great news and we are very happy to hear that. So, going back to your diagnosis and those days back then; how did you find Emory’s Winship Cancer Institute?
Deana: I found Winship because of my sister. She is in Georgia and once I was diagnosed, she got very involved and went to any kind of seminar or lecture that Emory had about multiple myeloma. And she actually met people who had multiple myeloma that went through Emory and once my cancer came out of remission twenty months later, so I think it was about September of 2013 and we started all the same protocols again and they weren’t working. My oncologist up here said I have nothing left for you. You are going to have to do another stem cell transplant. And I didn’t want to do that because to me that felt like that was my last defense if I couldn’t use medication and the stem cell that’s it. if this one didn’t work too then I would have nothing left. So, at that point, my sister said that’s it, we are going down to Emory. Send all of her files down there. And I had an appointment in June of 2014. I met Dr. Lonial and he took a bone marrow biopsy, asked if we would take – if I would be willing to take extra bone marrow for testing. I said sure. And it turned out that one of the drugs they were testing in the lab matched with my strain of myeloma perfectly. And so, I have been on the clinical trial ever since.
Bill: Do you feel that if you would have never gone to Winship things might have taken a turn for the worse?
Deana: Absolutely. Absolutely. Because I think the biggest thing I have learned in all of this, is you need to go see a specialist. I mean my oncologist up here, I love him. He’s great, but he was not a specialist. They didn’t have all of the science and the knowledge of what is going on in the myeloma world up here. So, if you go to someone that concentrates on it and they know what’s on the cusp and what’s going on they really can help you.
Bill: So, you were able to notice the difference in Winship right away. Is there something that stood out for you from the moment that you went there?
Deana: Well it’s having the specialist who knew exactly – in looking at my labwork, well this is why all of these drugs – drugs that have been approved by the FDA. He was like well that’s why this doesn’t work for you because your myeloma is this strain and this drug that you have taken isn’t going to work for you either. You need to look at I forgot what he even said, but whatever kind of strain of drugs I needed were not available up here for me. There was just more there at Winship.
Bill: So, the expertise then you received at Winship really tilted the tide in your favor. And you mentioned you were in clinical trials. Can you tell us about that?
Deana: I’m still in a clinical trial right now, actually. Originally, I can’t remember, I don’t know if Colleen can remember the drugs that Dr. Lonial thought that I should be trying and then when they studied my myeloma up in the lab and they found this – once that drug within – I mean for me, none of the normal drugs approved by the FDA were working for me and if they did, my numbers went down very, very slowly. So, I was told that I was a slow responder and it was actually a good thing. When I took this clinical trial drug, within one and a half cycles, I was in remission. And it was awesome because I didn’t think that was ever going to happen for me. I thought it was going to be a long drawn out process. But I’m still on the clinical drug. It was supposed to be a ten-cycle study but I was still doing well after the ten cycles so the drug company has kept me on it and I think on Sunday, or Monday, I start cycle 61. So, I have been on it for over three years.
Bill: Wow. So, it sounds like being on the clinical trial and that specific drug really saved you life.
Deana: It absolutely saved my life. Because I don’t think – to hear your oncologist say I have nothing left for you is not really a good thing to hear. It doesn’t make you feel good.
Bill: Not very comforting. Very scary.
Deana: Not at all and so I don’t think that I would be here right now if I didn’t go down to Winship. And I am thankful every single day for all the doctors and all the nurses at Winship.
Bill: We just heard about the care there at Emory and how pretty much it saved Deana’s life. Can you tell us about what’s unique about Winship from your point of view when it comes to treating someone like Deana?
Colleen Lewis, MSN, ANP-BC, AOCNP (Guest): Absolutely. We really put the patient at the center of everything we do. We surround the patient with a multidisciplinary team of exceptionally trained physicians and advanced practice providers, nurses and support staff to really focus on ways that we can treat the patient and advance science.
Bill: And as far as the medical staff there and the nursing staff; can you tell us about what’s unique about your staff and the alignment around multidiscipline?
Colleen: Absolutely. So, we are so fortunate here at Winship and especially in the Phase 1 clinical trial unit. We have phenomenal nurses. They are seasoned, well-trained, very well versed in the requirements of clinical trials and are some of the most caring individuals you can interact with. They treat the patients like family. So, not only are the patients in the best hands possible because they are so well-trained and meticulous with the way the clinical trials are conducted; but they do it in a manner that’s fun and they have fun with patients and treat everyone like they are part of the family. So, it really makes what is a very difficult time for patients a little bit better. At least that’s our goal when we are treating patients.
Bill: And Deana, you can speak directly to that then too, right that as Collen was saying kind of that treating patients like their family?
Deana: Yeah, I love going down there. I have a great time. Colleen knows, it’s a big party. And we have a lot of fun and you actually forget the actual reason why you’re there is to get treatment and to get medicine to make you feel better. I get there, and I feel better and I feel like there is nothing wrong with me.
Bill: And Colleen, can I talk to you about your work a little bit? What specifically drives your work in multiple myeloma?
Colleen: It’s patients like Deana to be honest that really motivate me to continue my work in myeloma. It’s such an exciting time to be in oncology clinical trial work, but specifically in multiple myeloma because there’s more new treatments today available to fight myeloma than we have ever had in the past. And that’s all been because of clinical trial work and the patients most importantly, who have stepped up and said yes, I do want to help advance science and all the clinicians and scientists working together to advance our treatment of this disease. So, it is exceptionally exciting for me to be a part of that mission. And the patients that we serve are truly at the heart of that for me.
Bill: And it has got to be a special feeling when you see the success with people like Deana.
Colleen: Absolutely. That is exactly what we are working so hard to see. To have someone like her who really struggled through other treatments, didn’t get the response you would hope for and then comes on a clinical trial and is now in a complete response is just phenomenal. And that’s really what we are all searching for, for all our patients. And unfortunately, we don’t always achieve those results, but we work harder every day so that we can attempt to get there for other patients.
Bill: And Colleen, I am sure that you have probably heard that before from a patient saying I was at my wits end, my other provider didn’t know what to do and thank God, I found you. You saved my life.
Colleen: We have and that’s our goal with our Phase 1 clinical trial program especially is to fill that niche for patients where we have enough clinical trial offerings that when patients are out of other standard options, the can look to us as a source of hope, that perhaps we have something to offer that other centers may not have had to offer them.
Bill: I love that line a source of hope. How important is that? That’s wonderful. And let me ask you this Colleen, so what does it mean to be part of a healthcare organization that is Magnet recognized and has an NCI designated comprehensive cancer center?
Colleen: That NCI designation really recognizes our center for scientific excellence. It demonstrates our commitment to really integrating research and patient care. That our goal is to care for patients and really advance the way we treat cancer in general. So, we are part of a network of centers and we collaborate across the country to really find novel ways to treat patients. And in several of our hospital entities in our healthcare organization, are Magnet recognized which means that we have a commitment and have demonstrated nursing excellence. And that is so important because I think we can all agree that excellent nursing care really is a huge component of excellence for a center.
Bill: And that’s something very important for patients too, when they learn that. That’s just another source of comfort for them, right?
Colleen: Absolutely.
Bill: Well that’s so good. Well thank you both for your time today. Deana, we are so happy that you are in remission and Colleen thank you for the wonderful work that you do there. We really appreciate it and thank you for spending some time with us today and Deana sharing your very important story. For more information please visit www.emoryhealthcare.org/cancer , that’s www.emoryhealthcare.org/cancer . You’re listening to Advancing Your Health with Emory Healthcare. I’m Bill Klaproth. Thanks for listening.