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A Stem Cell Transplant Story: Part 1

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Published on June 26, 2020

What is it really like to have a stem cell transplant? AML patient, Steve Buechler shares his experience with Patient Power co-founder, Esther Schorr. Part One of this series focuses on Steve's experience from checking into the hospital seven days before the transplant to his first biopsy at Day 21. 

This is Part 1 of a 5 part series, watch Part 2 A Stem Cell Transplant Story Part 2: The Importance of Care Partners. Part 3, 4, and 5 coming soon

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Transcript | A Stem Cell Transplant Story: Part 1

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.

Esther Schorr:

Welcome. This is Esther Schorr with Patient Power, and I'm glad to have you join us today for a very special discussion with a very special patient and survivor. Every cancer patient has a story, a very unique story, a personal journey that they go on, and that trip is not usually one that they choose, but one they have to make in order to get to better health. The trip is sometimes easier than expected, but often, it's much more difficult than one could imagine.

The story we're going to hear during this program is one that hopefully will provide some insights for those of you who are facing the prospect of a stem cell transplant. Though our guest has been on his journey for treatment of AML, or acute myeloid leukemia, the ups and downs, the ins and outs of his journey will shed light on what this most difficult journey in any transplant situation might be like, but it will definitely give some measure of hope along the way.

So I'd like to now introduce Steve Buechler. Welcome, Steve.

Steve Buechler:

Thank you.

Esther Schorr:

Good to have you here.

Steve Buechler:

Glad to be here.

Esther Schorr:

I'm going to tell our audience a little bit about you. Steve was diagnosed in June of 2016 with acute myeloid leukemia. His induction therapy worked and Steve went into remission. Then in October of 2016, Steve received a double cord blood stem cell transplant, and here he is today.

Since his transplant and after recovery, Steve has volunteered his time in person and by phone, and has counseled over 150 transplant patients. Steve, we're really glad to have you here and thank you for being willing to share your story with our Patient Power audience. I really appreciate it.

Steve Buechler:

Happy to do so.

Esther Schorr:

So let's do this. Let's start at what's really not the beginning of your journey with AML, but what happened when you knew that the transplant was your treatment path. You'd had your induction therapy and it worked, so you were getting ready for transplantation, and into the hospital you go. So I'm just curious, what were you hoping the transplant would accomplish?

Steve Buechler:

Well, I was hoping it would make this whirlwind storm of unfamiliar things get resolved once and for all and go away. That was the best case outcome. And we had explored some other options, including proceeding with just more chemotherapy treatments, but for my particular risk category, that didn't sound like a very promising road to go down. So the transplant held out its own risks, but also, the prospect of a much longer recovery and possible cure.

And so, I explored as many options as I could and got second and third opinions at the Mayo Clinic, and ultimately volunteered to be in a clinical trial where they would randomly assign me either to the cord blood wing of the trial or to my brother, who has a half match donor. So it was 50/50, and I ended up in the cord blood category. And it worked out and the rest is history. And my brother got off the hook, if that's what it would be to be a donor.

Esther Schorr:

Wow. It was very wonderful of him to offer to do that, even if he did get off the hook.

Steve Buechler:

Yeah. He was ready to go all the way.

Esther Schorr:

That's what brothers are for.

Steve Buechler:

Yeah.

Esther Schorr:

So if I understand it right, you were admitted about a week before the transplant into the hospital, and then it's a pretty long stay once you're in the hospital, is that correct? Three to five weeks?

Steve Buechler:

It can vary, but yeah, that's the range that they give you. It was actually a fairly inauspicious beginning because I flunked hospital admission the first time around.

Esther Schorr:

What do you mean?

Steve Buechler:

I went down there. I had my bags packed. I was all ready to go. I had the good wishes from everybody I knew. I checked into my room. The nurse came in and introduced herself and I felt obliged to tell her that my wife had had some common cold symptoms for the last week or so. And I thought maybe my throat was getting a little scratchy-

Esther Schorr:

Oh no.

Steve Buechler:

And I just thought I'd better mention it just so they know. And she looked at me for a second and said, "Okay, I'm going to get a doctor in to talk with you." And the doctor that came in was one of the longtime veterans there and he spoke to me about my symptoms. And then much to my surprise, he said, "I'm canceling your admission and sending you back home because I want you to get over this."

And I'm sure the shock registered in my face because I was so ready to go. And so he told this story. He said about many, many years ago when he was early on in his practice, they admitted someone with my cold symptoms, administered chemotherapy. The patient became immunosuppressed, developed pneumonia, and they died.

Esther Schorr:

Oh.

Steve Buechler:

At which point, I said, "You had me at pneumonia, but you really had me with the end of that story."

So I went home. A week later, everything cleared up. So I was fully admitted just a week later than I expected, but that's how it started. And then you're right, they said, "Now, for the first week, we're going to do conditioning," which involved a classic old chemotherapy agent called cyclophosphamide (Cytoxin) and one dose of full body radiation about two days before transplant.

Esther Schorr:

Wow.

Steve Buechler:

So at that point, they're setting you on a path where your potentially still disease-ridden immune system will gradually die off and it sort of clears the way for the transplant. And I've sort of compared it to jumping out of an airplane and then hoping your parachute will open because you're down that path with the conditioning one way or another-

Esther Schorr:

Right.

Steve Buechler:

So you'd have to hope for the best possible outcome. So it's a pretty spooky thing to do, but it was also at a point where that was, I don't say necessarily my best option, but it was my least bad option.

Esther Schorr:

Right. Gotcha. So let me roll back for just a second. This wasn't your first time checking into a hospital for a long stay, right? Does induction-

Steve Buechler:

Right.

Esther Schorr:

When the induction happens, you have to be in hospital then as well. So what did you learn from that hospital stay that you brought with you for this one?

Steve Buechler:

Yeah.

Esther Schorr:

Not so much about the details of the induction-

Steve Buechler:

Right.

Esther Schorr:

But about being in the hospital like that.

Steve Buechler:

The induction hospital was five and a half weeks. And in that case, the first week was what they call a standard 7+3, two chemotherapy agents. And they said, "We're going to keep you around probably for at least another month because we know when you're immunosuppressed, you're going to get sick. You're going to get sick enough that we want you to be in a hospital for immediate treatment." And that was pretty shocking, but the whole thing was shocking because I was asymptomatic when I was diagnosed. It was just a routine blood test at a physical.

So I was trying to grasp that. And I get into the hospital, and within two days, I went from the biopsy results to admission to chemotherapy. And then they tell me, "Now, plan to stick around here for another four or five weeks." And I was dumbfounded. So I quickly realized I needed some strategies to cope with this confinement, and my world just suddenly got really, really, really small.

Esther Schorr:

Yeah. And that's why I was asking. So there must've been some lessons learned the first time.

Steve Buechler:

Yeah.

Esther Schorr:

So what did you bring with you?

Steve Buechler:

Just in a quick nutshell, I brought with me some practice with mindfulness, meditation and yoga. I was determined to do as much physical activity as I possibly could. I wanted to be a proactive patient and get good communication going with my doctors and nurses. I wanted to retain my somewhat bizarre sense of humor, no matter what, and I did. And it really broke the ice and greased the wheels of conversations, both with the medical people and the people I was corresponding with. If I could crack a joke with my friends and family, they knew I was still the person they knew all along and not just a patient in a bed.

I was trained as a social scientist, as a sociologist, so I was sort of innately curious about my disease, and I think I brought kind of a practical problem-solving orientation. "Tell me what's going on, tell me what I can do to help. What's the plan? How do we go forward?"

But probably the most important thing was I did a lot of writing of my story. I sent a lot of reports out by email to people, and the writing process required me to understand what was going on as completely as possible so I could spell it out for the people who were reading my story. That really became therapy for me. That was like a psychic survival mechanism. And I continued it all throughout for at least 18 months. Some of that writing eventually became a memoir, although that wasn't my plan in the beginning. And to this day, I still send out reports about four times a year when I have my blood draws, just to keep people abreast of what's going on. I can't quite stop telling the story, but-

Esther Schorr:

Yeah, but if it's cathartic for you and therapeutic and there are other people that are benefiting from it, it's a great way to go. So what did the first few days look like in the hospital when you were getting ready for the transplant?

Steve Buechler:

I think the biggest thing that surprised me was they would not let me leave my room-

Esther Schorr:

Wow.

Steve Buechler:

To really, really seriously control any chance of infection. In my induction hospital, I was routinely walking five miles a day in the hallways, morning, afternoon, and evening, and I was confined to my room for the transplant. They did bring in a treadmill, and so I hopped on that a couple of times a day.

It was a nice big room thankfully. I actually had a big set of windows overlooking the Mississippi River. I could see the sunset as I did my yoga in the evening. So it was about as hospitable a jail cell as you could have, really. The nurses were excellent. Everyone there was just superb. The less said about the hospital food, the better. We'll just set that one aside.

Esther Schorr:

Okay.

Steve Buechler:

But I was made to feel very comfortable and very safe and very secure. And at that point, yeah, they're administering chemotherapy and you go down for radiation, but nothing's really happening at that point to your body. And it's just like, "It's kind of boring sitting here. I don't feel bad really at all, but there's not much I can do except my exercise and my meditation."

So I set up these routines that would get me through the day, morning stretching and late morning exercises, meditation, and just trying to set up a set of routines, almost like prisoners do when they're confined to a jail cell, to get you through the day, but to give you some structure and to kind of keep your hopes up that if you can create that structure and pass the time and pass the days, things will work out.

Esther Schorr:

I'm just curious, this isolation that you had during this time, was that different than what you had been told would happen during that first month? I mean, was that a surprise to you?

Steve Buechler:

No, they warned me-

Esther Schorr:

Oh okay.

Steve Buechler:

But when it really hit me... Like by the afternoon of the first day, it's like my body wanted to get up and walk the halls because that's what I did in my previous hospital. And blessedly, I felt good enough to want to do that kind of stuff. And I sort of got to the door and went, "Oh, I can't do that, so back off and jump on the treadmill." It was a decent substitute. Some people get bicycle machines and rowing machines in their rooms if they have them, but I think anything that can give you something to do with your body, other than lay around in a bed, is a good thing.

Esther Schorr:

Right. So come toward the end of this period of time. And I understand then you get discharged when that first set of work is done. Is that correct?

Steve Buechler:

Mm-hmm.

Esther Schorr:

Day 21, you had a biopsy. What happened? Was it good news?

Steve Buechler:

It was good news. And that was the standard timeframe. They typically do a biopsy about three weeks after transplant. What actually caught me was, I was already out of the hospital by then. That really surprised me. They told me to expect another three to five weeks. At the end of the first week, I was doing so well. One doctor came in on day eight, I think it was, and said, "We're thinking of you as the Rockstar on the unit here because you're doing better than anyone here in their second week post-transplant, and we might even send you home in a couple of days." And that was so quick, it was almost unnerving to be cut loose so quickly. So maybe it was a psychosomatic reaction, but within a couple of days, I developed a pretty nasty fever from an infection.

Esther Schorr:

Oh.

Steve Buechler:

And it spiked twice a day. It spiked at 3:00 in the morning and 3:00 in the afternoon for about five days running. They treated it with antibiotics. They got rid of it, but that delayed my departure. So it was actually, it was day 19 post-transplant that this hospitalization story came to an end, but I was quickly back there two days later for the biopsy.

And that was the first effort to see has this succeeded. And the news that came back was very good. It was that one of my two donors was 99% engrafted-

Esther Schorr:

Wow.

Steve Buechler:

Which is really early for a cord blood transplant. Sometimes they take a little longer, and to have that degree of full engraftment at that point is quite unusual. So even then I was aware that this is not how it works out for all patients.

Stay tuned for upcoming Part 2:  First Month Home: Day 21-50.

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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