Nurse Describes his Journey with MDS

Leigh Clark:    00:03    Hi, everyone. This is Leigh Clark, Senior Director of Patient Programs with the Aplastic Anemia Aplastic Anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… and MDS International Foundation. And welcome to Podcast for Patients. Thank you so much for joining us, and I'm going to have the pleasure today of speaking with Barry Parnas. But before we get started, I'd like to thank our Diamond Level sponsors, Alexion, Apellis and Novartis, and the generosity of our patients, families and caregivers who, without everyone's support, our podcast series would not be possible.
    00:44    Welcome, Barry. It's So great to be able to talk with you today.

Barry Parnas:    00:48    Hi, Leigh. It's great to be here, and thank you so much. And I've known you off-and-on at a distance for years.

Leigh Clark:    00:57    Absolutely.

Barry Parnas:    00:58    And now I finally kind of get to meet you.

Leigh Clark:    01:01    Absolutely. Well, thank you so much for agreeing to be on the podcast, and tell me a little bit about yourself.

Barry Parnas:    01:08    Okay. So right now, I'm 62 years old. It's been 15 and a half years of a journey for me. And I grew up in St. Louis, Missouri. I moved up to Minnesota. Right now, I just try to take as good a care of myself as I can, enjoy my family as much as I can. And I feel like I'm very lucky. I'm doing very well. I'm able to get out and exercise. Um, I've been working up until August and I'll start working again probably in the springtime. 

Leigh Clark:    02:10    Barry, what inspired you to attend nursing school? I know that you're a healthcare professional and while you were in nursing school, did they teach you anything about MDS?

Barry Parnas:    02:23    Well, so nursing school was almost a given for me after got laid off. I had been a research chemist in drug discovery for years and years. And I don't know, I've always been interested in, in health. And kind of going to nursing school turned out to be a very natural thing. And, um, I guess finally doing clinicals with patients and seeing, just seeing how patients had to deal with life as well as their illness really made a big impact on me. And it kind of changed my mind from being more of a scientist to being a partner with people, and kind of coaching them, listening to them, doing all my nursing interventions, helping the doctors. I don't know. It's really been a great part of my life.

Leigh Clark:    03:46    Did you study MDS or did you learn about it in nursing school?

Barry Parnas:    03:51    Oh, not at all. Things were very general. We learned very basics,  because there's always things that are very basic regardless of what a person's diagnosis is. There's just always things we all have to do in our lives, and actually, the technical language for it is when became a nursing assistant while I was going to nursing school that actually taught me the most about people. And, just the activities of daily living, ADLs, feeding yourself, swallowing, being able to cook, being able to do hygiene. If you don't mind me getting into it, being able to go to the toilet on your own, being able to get yourself to a doctor's appointment, being able to communicate. I mean, regardless of your diagnosis, um, you wanna be able to do all of these things. 

Leigh Clark:    05:14 How was your MDS discovered?

Barry Parnas:    05:19    So I got laid off in 2010, and I decided, "Well, maybe I should get a physical." Hadn't had a physical in a while. Went and got a physical and my routine lab, blood results showed my platelets were below 100K. So got retested, everybody started getting anxious. I was like, "What's the big deal?" Didn't know that much about it. Got sent to a hematologist hematologist: (hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs. -oncologist. Eventually, I let her do a bone marrow biopsy bone marrow biopsy: A medical procedure to remove a small piece of solid bone marrow using a needle that goes into the marrow of the hip bone. The solid bone marrow is examined for cell abnormalities, the number of different cells and checked for scarring of the bone marrow. on me, and that was diagnostic for MDS. The acronyms have changed. Anyway, all three of my blood lineages, red blood cells, white blood cells, and platelets were affected. 

Barry Parnas:    06:20    But I was still living a normal life.

Leigh Clark:    06:25    ... And what were the treatment options that were offered to you, and what led to your decision for a transplant?

Barry Parnas:    06:34    Okay, so this is in 2010. A lot of things have changed since then. So the way I would think people's hem-oncs are talking to them now is gonna be different from what it was like when I was first diagnosed because I wasn't given a lot of information. I was mostly just given anxiety, and this is a pet peeve of mine with the healthcare industry. So I really wasn't given any options. It's like, "Well, we're just gonna follow you." What is given the name, wait-and-watch, or whatever it is, monitor-and-watch, which left me with a ton of anxiety. And of course, as a researcher, I started going to the medical literature and learning myself.
    07:38    I was in St. Louis at the time. This is the way my doctors treated me. I moved up to Minnesota in 2011 and right away, I was happier with my hematologist-oncologist, as well as other medical people. And yeah, we were still doing the watching-and-waiting, and the hematologist and oncologist oncologist: (on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer. here in Minnesota explained to me, I love the guy,  "We have to balance benefit with toxicity. And right now, I don't have anything that would make your life better. I want you to live the best life you can right now. I'll take care of all this other stuff." And I said to him, "Well, I'm not really gonna let you just take care of it and ignore it because I'm gonna do my research, but I understand."
    08:42    And I would have lab blood draws every three months. And of course, the week or two before my three-month blood draw, I would be flipped out. And then my results showed I was stable. I had some decreases in my blood counts, but I went for eight years before I felt anything in my body that needed to be taken care of, that now there were options.

Leigh Clark:    09:23    And how did you decide transplant was right for you and how was the timing of your transplant?

Barry Parnas:    09:35    Okay. So, the short answer is in October of 2018, my wonderful transplant doctor who worked closely with my outpatient hem-oncologist, but who I was now seeing, I was now seeing the transplant doc, she said, "Well, it's time for a transplant." And I said, "Well, what if I don't have a transplant? I hear they're really nasty." And she said, "Well, I'll give you six months."

Leigh Clark:    10:08    Oh, wow.

Barry Parnas:    10:10    And I liked her, I liked her and I trusted her. She and I, our communication was great. I gave her a hard time, she gave me a hard time, and we both laughed. And at that appointment, I said to her, "Well, I don't know. I still don't know. Maybe I should just go on hospice because I've done the research. This isn't an easy thing to go through and even then, the outcomes." And she said, "Well..." And, and I, and, and we just kind of both sighed and I said to her, "What's gonna happen? I'm gonna get pushed out of the hospital in a wheelchair. I'm gonna spend the rest of my life in a wheelchair." She goes, "No, you're gonna walk out of here." And I said, "Well, how can you be so sure?" And she said, "Because I'm gonna tell Physical Therapy to kick your ass." And I said, "Okay, I'll do it." It was that quick. Once she said I was gonna have a life, I decided I would do it. I also trusted her. 

Leigh Clark:    11:28    It sounds like you guys, it sounded like the two of you had a really good rapport and you were really good at communicating with each other, and she listened to you. It sounds like she really listened to your concerns.

Barry Parnas:    11:44    Absolutely. Now, the prior seven months before that, I was crawling up the steps in my apartment building while I was on Vidaza or azacitidine azacitidine: It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Azacitidine is approved by the U… treatment to try to work with me rather than go directly to a transplant because it came down to the point where I was having a lot of shortness of breath, and eventually that did get better. And then when, at the, like, six or seven-month mark, that's when the doctor said, "Well, we're ready for a transplant," and she said it with a smile. (laughs)

Leigh Clark:    12:31    (laughs) Have you experienced any challenges since your transplant?

Barry Parnas:    12:38    I have. I spent seven weeks in the hospital. Normally, if everything goes right, you spend like five, but I had severe acute GVHD while my blood counts were increasing after the radiation and chemotherapy chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… prior to the actual stem cells stem cells: Cells in the body that develop into other cells. There are two main sources of stem cells. Embryonic stem cells come from human embryos and are used in medical research. Adult stem cells in the body repair and maintain the organ or tissue in which they are found. Blood-forming (hemapoietic) stem… . I also had a latent viral infection that was reactivated. Okay. Given all of that and given the treatment for those things, I now have chronic kidney disease, and I now go to Mayo in Rochester, which is very convenient for me, for my kidney work. I had a little bit of skin GVHD, and the topical triamcinolone steroid cream cleared that up, and I have not had any problem with that.
    13:55    If I want to right now, I can go out and walk four or five miles. I exercise every day. I do a lot of internal Asian work, breathing exercises, stuff like that. And I worked. I was on disability for a few years. I went back to work as a triage nurse on the telephone, felt good enough to look for another job and for, and luckily got hired in Rehabilitation Medicine working with spines and brain-injured people, and I've been doing that. But I have since had to cut it down because, my energy has decreased.

Leigh Clark:    14:48    And what have you learned about yourself since your MDS journey started?

Barry Parnas:    14:58    Gosh, honestly, this will sound weird, but I'd say these past 15 years, in spite of the anxiety and the challenges, have been the best of my life. Um, I have made myself just do, go out and do things that I would hesitate to do previously. I enjoy life more. And I don't know, nursing school made a huge difference and I kind of owe that to that outpatient hematologist-oncologist who said, "You know, you need to just live your life." And I listened to him. It's like, you just never know what's gonna be in the next moment or the next day or the next three-month visit. I don't know what tomorrow's gonna be like. I might be short of breath, so I wanna work hard, I wanna work hard the rest of my life to have a good life 'cause I don't know what tomorrow's gonna be like.

Leigh Clark:    16:33    And Barry, do you have any advice for other MDS patients?

Barry Parnas:    16:40    Yeah. Keep yourself physically healthy and emotionally healthy as much as you can. Just do what you need to do. Don't worry about what other people are gonna think of you. Try to surround yourself with good people. I mean, I was so lucky I've had good people, and that's so important. And be thankful for what you have because you have an awful lot, and I know that kinda sounds trite, but, it's a good place to start from. Rather than starting from, "I'm ill," start from, "I can do all of these things, and I wanna do more, and we'll just see how it goes."

Leigh Clark:    17:38    Thank you so much, Barry, for sharing your amazing 15-year journey with all of us.
    17:47    And if you like to learn more about MDS, or transplant, please visit our website, which is aamds.org. If you'd like to speak with Barry or other patients through our peer support network, please shoot us an e-mail at help@aamds.org or give us a call at 800-747-2820 and we can get you connected for support. And there's also our virtual support groups where you can get connected with others as well. So lots of supports happening for, um, the MDS community.
    18:29    Thank you so much for joining us, and this is going to end our podcast.