In this episode, we chat with JR Brandt of Montana, an acute lymphocytic leukemia (ALL) survivor, about his journey through diagnosis, treatment, and living with chronic graft-versus-host disease (cGVHD). JR shares his initial diagnosis story, describing how what he thought was a minor infection led to a leukemia diagnosis complicated by the Philadelphia Positive chromosome. He underwent 26 days of chemotherapy and was eventually cleared for a bone marrow stem cell transplant at Stanford University in March 2017.
JR discusses the onset of chronic GVHD symptoms about a year after his transplant, beginning with skin changes. He was treated with Rituxan infusions, which provided temporary relief. Over the years, as symptoms re-emerged, JR continued Rituxan treatments and adjusted his care plan, even after moving from California to Montana. He highlights the importance of finding and continuing care with familiar healthcare professionals, like his physician who (fortunately) moved to Billings Clinic.
Beyond skin issues, JR describes experiencing joint tightness, dry eyes, dysphagia, and dry mouth. He mentions practical solutions like using Biotene toothpaste for dry mouth and preservative-free Refresh Plus eyedrops for dry eyes. JR also shares the importance of physical and occupational therapy, which helped him develop a personalized exercise routine. Over time, he transitioned to aquatic aerobics and massage therapy, finding these methods more effective for managing his symptoms.
JR emphasizes the significance of staying active, despite physical limitations, by adapting activities like biking with an e-bike and engaging in water aerobics. He also discusses the importance of sun protection and practical tips for managing GVHD symptoms, like using a sun hat and sunblock.
JR addresses the mental health challenges of living with chronic illness, equating his experiences to PTSD and stressing the importance of setting goals and making plans to stay motivated. He shares how maintaining an active lifestyle and staying connected with his family helps him manage anxiety and stress.
When discussing his career, JR explains how his background in healthcare was both a benefit and a challenge. He advises others with disabilities to utilize vocational rehabilitation services to explore new career paths. JR also encourages being your own patient advocate, ensuring all medical information is shared among healthcare providers to provide comprehensive care.
JR concludes with the importance of using available resources, like the Americans with Disabilities Act, for mobility aids and other accommodations (link below). He highlights the need for continuous learning and resourcefulness in managing chronic GVHD and living life to the fullest.
Products mentioned by JR in this episode:
Refresh Eye Drops: https://www.refresheyedrops.com/
Biotene for Dry Mouth: https://www.biotene.com/
DaBrim Helmet/SunShade: https://dabrim.com/
Oofos shoes: https://www.oofos.com/
Mechanix Gloves: https://www.mechanix.com/
Dycem Non-Slip tape: https://www.dycem-ns.com/
Tryvaya (Prescription) Nasal Spray for Dry Eye: https://www.tyrvaya.com/
Full list of Vocational Rehabilitation Agencies for all 50 states: https://rsa.ed.gov/about/states
Americans With Disabilities Act (ADA) Requirements for Power-Driven Mobility Devices: https://www.ada.gov/resources/opdmds/
This season is made possible thanks to donations from Syndax and Incyte.
JR Brandt Interview
Speakers: JR Brandt & Peggy Burkhard
Peggy Burkhard:
Hello everyone. So, today we have with us JR Brandt, an acute lymphocytic leukemia- also known as ALL- survivor, who is going to share his transplant story and personal journey with chronic graft-versus-host disease.
JR Brandt:
Well, thank you Peggy. Happy to be here today. I hope that the things that we discuss today can help some other survivors. It's a very unusual diagnosis to deal with and has many facets and I can speak to my experience.
Peggy Burkhard:
Sounds good. So, let's start with your transplant itself. Tell us about that part of your story.
JR Brandt:
Sure. I was originally diagnosed September 4th of 2016, had a fever and a little upper left abdominal pain, and went to the hospital and thought I had maybe a little small gut infection, something along those lines.
And after they dug around and did a bone marrow biopsy and came back, they diagnosed me with acute lymphoblastic leukemia. Along with that leukemia I had the Philadelphia Positive chromosome, which is like the turbocharger for the leukemia.
So, physicians were pretty concerned, as of course I was. They put me in an induction round of therapy for 26 days of chemo. And they told me if they could get me cleaned during that process, then they could start working on looking for a donor for a bone marrow stem cell transplant.
So, I was fortunate enough to get that way on, eight months later was shipped over to Stanford University in Palo Alto, California where I started preparation for that transplant which happened on March 30th, 2017.
And of course, anybody that's gone through these knows it's a little bit of a rough journey but came out of it okay. And I'm here to talk to you today.
Peggy Burkhard:
That's great. So glad that everything went pretty well for you. So, this season is about chronic graft-versus-host disease, and you’re several years out from transplant, which is going to give us a really good feel for what it's like for the chronic part. So, walk us through your first signs and everything about your GVHD if you could.
JR Brandt:
I was fortunate to not have any acute GVHD and got through that process. And probably about a year out, maybe it was a little less than a year, I started to notice some skin dimpling, or some people were referred to it as “orange peel” on the insides of my upper arms.
And when I went back to Stanford, talked to them about it, they were like, “Yeah, sure enough, you're experiencing some chronic graft-versus-host disease.”
I originally got my treatment at Kaiser Hospital over in Roseville, California. And so, I was sent back there to start a round of Rituxan to help to tamp down the graft-versus-host symptoms. I went through the infusion. It was four weeks, once a week. They start out a little bit longer, about six to eight hours, and then they can taper it down to four or five hours once your body's accustomed to that Rituxan, after the first round.
I would call it a slow burn before you notice any improvement for me. I mean, it took three or four months before I saw some of that skin tissue starting to normalize. And then it helped.
And then lo and behold, a year later, a year and a half later it started to come back. And in that interim, my family and I moved from California to Bozeman, Montana. And at that point, I was needing to find care there.
And fortunately for me, my physician, who was a fellow at the time, who actually hung my stem cells, took a position at Billings Clinic in Billings, so it’s a couple hours away. So, I was able to go over there and continue care with that particular physician, and he agreed as well, it's time to start Rituxan again.
So, that was my second round of Rituxan. Got some relief again for about a year. And then it popped up again. I had another round of it. And then again, got another year out of the way. And this past August was what I hope to be, maybe the final round.
From what I understand, at some point things start to burn out a little bit and you will find some improvement as you move forward from there hopefully.
Peggy Burkhard:
That is true. Has it mostly been skin issues? Has there been any other GVHD issues?
JR Brandt:
Yeah, thanks for asking Peggy. The skin issues were the obvious outward signs. Internally you feel joint tightness. I have dry eyes anyway from other eye issues. I’ve had glaucoma since my early 20s, and so I had dry eye anyway, but it’d gotten increasingly worse. Part of it was moving to a more arid climate.
The other part was the GVHD, and so also a little bit of dysplasia, I think they call it, a little trouble swallowing, some dry mouth issues as well. And I've been able to remedy some of those things by adding products like a toothpaste called Biotene, which helps with dry mouth.
I use the little eyedrop vials that are preservative free and that's what my physicians prefer that I use in the eyes- as opposed to things that are just bottled that you keep around in your pocket.
Peggy Burkhard:
Do you know the name of the eyedrops?
JR Brandt:
The eyedrop names are Refresh Plus, those are the current ones that I use. You may find that you try many different ones that are out there. I think they'll work differently for different people. So, try different brands and see what works best for you.
Peggy Burkhard:
Sounds good. Thank you for that. So, JR we talked about some joint tightness. Is there any physical therapy that you incorporated into your regimen?
JR Brandt:
I did. When I moved here to Montana, after I saw my doc, they had suggested trying some physical therapy and occupational therapy. And so, I went and started that process, and I was the only one with chronic graft-versus-host that anybody had ever seen in this part of the country.
And they were working in trying to also connect with their colleagues to see if there was anything different. So, yeah, I did PT and OT for almost two years, stretching and learning different exercises. The big benefit for me was just that learning process.
I created a whole notebook of exercises and stretches to do. And then at some point towards the end, we just kind of reached a plateau where I was conducting the exercise at home. We really weren't getting any more. And then my physical therapist suggested that I try aquatic aerobics as well as massage therapy.
And so, I got connected with a therapy pool here. We're fortunate in our community to have a facility like that that helps to work with people with disabilities. She also suggested massage. So, I had started originally with a lymph drainage type massage.
And then that massage therapist suggested that maybe more hands-on would be beneficial, using the type of tools that they use in PT and OT for scraping the skin because the GVHD seems to, for me, populate in the fascial layers between the skin and the muscles.
And so, I found a massage therapist that specializes in Abhyanga, which is an Eastern type massage therapy along with a- it's called SMRT, or Spontaneous Muscle Release Technique. And those massage therapies really helped in combination with the water aerobic programs that I participate in.
I do that three times a week, the water aerobics for an hour each, and the pool is a nice 90-degree pool, which is really helpful and makes it easier to move the massage therapy I do for two hours every other week. And that really has been helping as well, more than the PT and the OT.
So, I stopped the PT and the OT and then I just have continued with that, and I felt like that has provided enough stretching and contracture management to keep me from getting any worse.
Peggy Burkhard:
Yeah. I really like how you just figured out what you needed, and you made it happen. I've got to imagine that this has made a difference in how you feel. I'm very impressed.
JR, you stay active. You live in an area that's just probably so beautiful to be outdoors. Tell us about how important that is to you.
JR Brandt:
It's extremely important, not only the water aerobics and the massage therapy help, but also keeping moving. Anybody that's got any skin or contracture issues with chronic graft-versus-host will understand that you can only sit for so long, you can only stand for so long. A lot of times just laying down flat in the bed will give you some relief.
But I found that, especially in the summertime getting out, I can't walk huge distances anymore, but I can get on a bike, and I have an e-bike, which I feel is really beneficial because you can get the exercise, you get a little bit of help.
If you get to some point where it's difficult to get back, then you can just use the throttle and work your way back that way, which it's been really helpful to use that.
Wintertime, I used to ski a lot. I don't ski anymore because the knees don't want to participate as well. But there's lots of other things you can do outside. I still hunt and fish. I just don't hike quite as far when I hunt.
And there's a multitude of options depending on where you live that you can get involved in to stay exercised. And you don't have to be a gym rat. You can just … the water aerobics provides a lot of resistance because you use these foam dumbbells and pool noodles that we all think are for kids. Well, you
can get them in larger sizes, and they do provide quite a workout in the water.
Peggy Burkhard:
Yes. I actually love water aerobics when I go to visit my mother-in-Law in Florida, they call it Mermaids. And I am there every other day they have it because I love it so much. So, I can picture how much you love it, because I do too when I get the chance to do it. It's really important.
I love how creative you are. How do you deal with the fatigue? Like a day that you wake up and you just don't feel like exercising?
JR Brandt:
Yeah, I mean, I think you have to listen to your body and realize that it's definitely a marathon. It's not a sprint. So, some days you're going to just be like, “I don't feel like doing anything. I'm just going to hang out, watch TV, whatever, maybe walk the dog and skip.”
I rarely skip aerobics, but if I don't feel good, we all have compromised immune systems. So, you're going to get the occasional cold, probably more than occasional, and not feel like going there. Plus, you don't want to spread it around.
The group that I swim with is a cancer survivor group that's sponsored by an organization here locally. You may find some of those activities available if you have those type of cancer support things in your community.
Peggy Burkhard:
Well, that's a great idea. So, what else can we talk about here? I'm just so impressed with everything you're doing in your survivorship. What about the sun?
JR Brandt:
I was introduced to sun protection when I went through the training before my stem cell transplant. They talked about how extremely important it was to make sure that you're protected when you're out in the sun.
I'll use sunblock. I really hate it just because I don't like the way it feels. So, typically, I'll wear a shirt and a sun hat if I'm out and about.
If you're biking, there's a product that's called Da Brim, D-A-B-R-I-M. And it's a kind of a halo long hat, big brim that sits over top and connects to your bike helmet and you can get it in Chartreuse Green, which is what I have, because people see you two miles away and it's helpful for your safety, but it's also helpful for that sun protection.
So, it's definitely important. In that same vein, you're probably taking vitamin D anyway, so make sure you're taking some supplement vitamin D and getting that level check so you know that you have enough and not too much.
The dry eye we talked about already and the different drops. There's also a prescription nasal spray, believe it or not, that helps with dry eye. It's called Tyrvaya and it's T-Y-R-V-A-Y-A. Sometimes the insurance companies like to fight with you a little bit, but if you've tried a bunch of other options like I have, your doc will definitely go to bat for you to get that.
I've tried the serum tears where they will take a couple vials of your blood and they spin it out and you send it off to a lab and they make those, those didn't work for me. All different drops, I kind of was failing on it. But the combination of everything and then adding this Tyrvaya has really helped with the dry eye.
Peggy Burkhard:
So, JR, we all know how important our mental health is, especially you get through the cancer and then you got this rare disease that just won't quit. Although I'm so happy to hear that it seems to be burning out for you. Tell us about how you've dealt with the mental health aspect of it all.
JR Brandt:
Mental health, for me, I equate it to, and I don't know if it's formally diagnosable as PTSD, but it certainly has acted that way for my family and I, and it's made us aware of trying to stay connected with talking things out if you're having a rough day as far as feeling like we're waiting for the other shoe to drop, so to speak.
But what I try to do is you have to do blood tests, every time you have a blood test — I do them every six months now, but you have to kind of prepare yourself a little bit because a couple weeks leading to it, it's like, “Oh my God, what is it now,” kind of thing.
I'll give you an example. I went in and had a … they always check my IGG level to make sure that … I’m making antibodies and all that kind of stuff. Well, it was really high, but I've been dealing with kind of a chronic bronchitis, and I was suspicious that might've been it. But the doctor was like, “Well, let's check and just make sure it's not multiple myeloma.”
And so, they do all these other blood tests. Well man, you're like walking on glass for a couple of days until you get your results back. And it wasn't that, it was a chronic infection that they were able to clear up.
So, what I try to do is just, I don't know, I try to stay focused on lots of different things, different hobbies, and also, I think making plans to do things, make a plan for a vacation. When I first was diagnosed, I just wanted to make it to my 25th wedding anniversary and see my kid, one of them graduate college and one of them graduate high school.
Well now I got, my son's a mechanical engineer, my daughter just graduated high school and I'm pushing 32 years of marriage now. So, I gotta come up with other goals.
So, you just start picking things, and maybe it's a trip, maybe it's a wedding or something, but always have a goal and a trip planned. And then when you're done with it, make sure you have another one. Because that gives you these things to look forward to and plan to and takes your mind off of that.
And before you know it, you're out not really worrying, stressing over the small things, as long as you can keep things planned out.
Peggy Burkhard:
I absolutely love that. I think it's so true. Everyone should do that. All of us have things to look forward to and you're going to blink and you're going to have a wedding. We just had our son get married, so it comes up real fast.
JR Brandt:
Mine's next June 21st, so, it happens really quick.
Peggy Burkhard:
Well, that's great. So, JR let's talk about your work, your career. How is that all affected by your diagnosis and your cancer?
JR Brandt:
For me it's good and bad because I worked in healthcare almost my entire career. And I have brother-in-laws and sister-in-laws who- they're nurses and I have an orthopedic surgeon. It's good to have all these medical people, but then it's not because then they're like, “Oh my God, he's got leukemia. This is what's going to happen,” kind of thing. And I was able to prove everybody wrong because everybody was preparing for the worst.
The work aspect for me, as I did orthotic and prosthetic work my entire career, so I was familiar with some of the terminology. I was familiar with the hospital environment, that made me feel a little bit more comfortable.
And also, it kind of broke the ice a little bit with my caregivers too. They're like, “You're kind of one of us.” Not that I got any better care than the others, but it was fun to be able to just communicate with them on that level.
Going back to work for me, it was a period in time where I was thinking I don't know if I could do this anymore. It's hard working my hands. I don't want to be involved or be in places where there's potential to catch other viruses or disease, that kind of thing.
So, I started looking at other avenues. There are vocational rehabilitation departments in every state in the country, and they work in conjunction with the federal government to provide funding to help people with disabilities either retrain or train from the get-go.
If you're born with a disability, they help you in that process. I would highly recommend if you're thinking about going back to work and you can't do what you did before, to touch base with them. My wife actually works for the department here in Montana.
They will provide funding for schooling, for job coaching, you name it. It's definitely a valuable resource they'll provide you with. If you need computers or whatever, these things are available to you. So, I think it's important to exercise those resources that are available to you.
And along those lines, a couple little tiny tidbits. Don't be embarrassed to ask your physician for a handicap placard, especially if you had joint and mobility issues. Don't feel like those are only for people with wheelchairs, and we have an invisible disability.
Most of us look pretty good. And if our skin's not looking good, if you throw a long sleeve shirt on, you really don't notice. So, I think I would go for that. I've had them for several years. It's definitely beneficial. If I see somebody that's worse off than me, I'll gladly give up my spot.
But when I'm going grocery shopping, then there's a foot of snow on the ground it certainly is a big, huge help for me.
One other thing in that same vein is if you touch base online with the American with Disabilities Act, there's a section in there that's called other power-driven mobility devices. And if you are at a point where you need something to get around a little bit, like I have an electric scooter with a seat on it.
It's just a regular scooter. It's made for adults, but it's not necessarily a handicap type scooter and it folds up, I throw it in the back of the car. So, if we go on someplace where it's a long walk or you're going to be on your feet a lot, I'll take
that and then I'll use it for- a lot of people call it the last mile transportation kind of thing.
But it's definitely fun to have one of those and not feel like you're on the grandma scooter with the orange flag on the back. The reason that the ADA came up with these new guidelines was to inform people, cities, municipalities, that hey, people with disabilities are going to be operating different things than they've done in the past because of technology and a lot of the electronic driven devices. So, look into it, it's fun and it's helpful.
Peggy Burkhard:
Wow. We'll definitely include information on that in the show notes. Thank you, JR. So, let's talk about a multidisciplinary approach to overall wellness and pain.
JR Brandt:
So, I worked in a hospital- Shriners Hospital for Children, just to offer the plug- for 16 years. And so, operating in a multidisciplinary environment, it taught me the benefits of sharing your information across disciplines of the medical field.
And what I've found is that I have a PCP or my regular provider, and then I have an orthopedic person I go to. I have a joint person to look and see if there's any type of arthritis going on. And along with your physical therapy, occupational therapy.
Make sure everybody's connected. Where we're at here in Montana, we have a couple different healthcare operations. And what I'll do is if I see one, I'll get X-rays. I make sure that all of my information is getting collected to my PCP. She's the one that is providing the pain management for me.
So, whenever I go to my oncology physician's assistant, and get checked out, I'll send all the labs over to her. So, that way when I see her every six months or so, I'm not paying for labs four or five times a year. I'll get them and I'll share them, get X-rays and I share them.
And then when I sit down and talk to her about pain management, she knows that I've gone to these other providers, provided that information so that we can have a nice, well-rounded discussion about what can we do? I have a little bit of neuropathy in my feet, probably from the eight rounds of chemo, or could be from the GVHD.
And so, I treat that with Gabapentin. I also have a prescription for a mild amount of hydrocodone that I can use for kind of the day-to-day kind of pain that you would get in your feet or your knees, et cetera.
I also utilize a little bit of THC on occasion that helps with mood, but it also kind of connects in and it helps with the pain as well. It helps me with sleep. There are gummies that you can get that have THC, they have melatonin. I don't know if CBD is helpful or not. Some people will say yes, some people will say no, I'll just take it because it's not going to hurt me. I don't think. So, I'm giving it a go.
On top of that, there's things that you can utilize if you have foot pain. I've gone through, I think every shoe manufacturer there is. And I'm kind of at the point now where I wear, I think they're called Oofos. They're kind of a recovery shoe for working out, but I just wear them every day.
They're nice and soft. It takes a little bit of getting used to as far as they give you a little bit more motion moving around. But they definitely have helped. There's also, if you're having trouble, like I do, I have a limited range of motion in my joints, in my hands, especially and I can't make a full fist. And so, it's hard to open jars and it's hard to do some of these things.
So, there's a company called Mechanics. They make gloves for mechanics. They've been around for years and years. They actually have a glove; it's called the Grip. And it uses a material that my occupational therapist gave me some and recommended me to use it.
It's called dycem, D-Y-C-E-M comes in a sheet. You can cut it in little pieces, but between that and those gloves, they provide lots of grip, which will help you to access what strength you have in your arms to open those jars. So, I think those are pretty helpful tools to have around.
Peggy Burkhard:
Great. We will also include that in the show notes. I think I need to get myself some of that silicon for the kitchen.
JR Brandt:
Yeah, it's great in the kitchen and it's really easy to use. You cut a couple five-inch square pieces and throw them in the drawer, and you can hold onto a jar and a lid and open pretty easily.
Peggy Burkhard:
Wow. This is wonderful. Alright, JR we've covered a lot today. We're going to wrap things up with any closing thoughts that you have on all of this.
JR Brandt:
Sure. I would say, unless you're fortunate enough to have your care at a transplant center, you probably need to become your own patient advocate. Bring information like we talked about in the section of multidisciplinary approach, bring that with you.
And then also information that you gain from these podcasts and webinars that were put on by the National Bone Marrow Transplant Link. Your local oncology provider would appreciate you bringing them some of that information because you know as a blood cancer survivor that there's a lot of blood cancers and there's a lot of other …
If you're in an area like I am where you're not close to a transplant center, your oncologist isn't going to have the information. I think that you're going to be able to pull together yourself from all these resources and share with them.
I know that when I went to my physician assistant, the last time I presented to her, the handful of pharmaceuticals that were talked about on the National Bone Marrow Link webinar is when they were talking about those.
So, I brought those to my physician, said, “Hey, you ever heard of these?” Some of them I have. Some of them she didn't have. She was going to run it past her pharmacist that specializes in chemotherapy drugs, et cetera. So, that pharmacist was going to look into it, and then on my next visit, we were going to talk about it.
Those are things that are helpful for the oncologist to help you move forward. And sometimes you just have to go back to your transplant center if you're having really some severe difficulties or maybe even a telemedicine visit, just so they can weigh in on what's going on.
Peggy Burkhard:
Absolutely. We talk about this all the time. I have survivors that will tell me that they know more about GVHD than their doctor in their community. And it's understandable. That's not their expertise.
But when they meet people like you and some of our other survivors, they get a quick lesson. And it seems to me they're appreciative to have you be so resourceful and if they are a great doctor, they want you to advocate for yourself.
So, I applaud you for everything you do, and it sure seems like you are living life to the fullest and you're not letting any GVHD take away from you this great life that you've built.
JR Brandt:
No, I appreciate that. I think the one thing to remember too, your physicians have probably already told you that that's a little bit of GVHD is not a bad thing. It lets them know that your stem cells are in there doing their thing. And I think you just have to take on the attitude that you won the war. The rest is just maintenance.
So, you just got to kind of fill in those gaps that were created by all of this trauma in your life with the fun things to go on into the future.
Peggy Burkhard:
Absolutely. Well, thank you JR for sharing so much information with us today. And just been a pleasure. Thank you.
JR Brandt:
Well, thank you, Peggy. I'd also like to thank the National Bone Marrow Transplant Link for the opportunity to share my story today. I hope that I've inspired others. And just start working on the little tools that you can find that make your life more comfortable.
Peggy Burkhard:
Absolutely. Thank you.