In December 2015, after one and half years of being in remission from acute myeloid leukemia (AML), Roman had a relapse. In January 2016, he was told that his best chance of long-term survival was to get a stem cell transplant, also known as blood and marrow transplant, or BMT.
In this segment of Roswell Park Cancer Talk, Roman Molodynia, BMT survivor, shares his story and experience and his question: how do I find the words to thank someone who saved my life?
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Blood Marrow Transplant Survivor: Roman Molodynia's Story
Featured Speaker:
Roman Molodynia
Roman Molodynia is a blood marrow transplant survivor. Transcription:
Blood Marrow Transplant Survivor: Roman Molodynia's Story
Bill Klaproth (Host): Today we're talking with, Roman Molodynia, a BMT survivor, BMT stands for blood marrow transplant. Roman has been battling acute myeloid leukemia, or AML, and he is here today to tell us about his story and experience at Roswell Park Comprehensive Cancer Center. Roman, thanks for your time. So, first off tell us what led you to Roswell Park Comprehensive Cancer Center.
Roman Molodynia (Guest): Well what it led me to Roswell Cancer Park Institute was the fact that, I was diagnosed, and as people may know or may not know I'm in Canada, and unfortunately, I needed a bone marrow transplant because it was the second time I relapsed with AML, and all the sites in Ontario, all the beds were booked, and my doctor felt that it was urgent that I get a blood marrow transplant as soon as possible. So, the condition that we had was that I would have to go to the States. He named a few states. I picked Buffalo because I was from Niagara Falls and born and raised. So, I was very close to Buffalo, my family was there. And also, because once I looked up Buffalo and the Roswell Cancer Institute, they had a very high successful rate in bone marrow transplant. So, for me it was a simple decision and it was a very good decision, and I highly recommend them.
Bill: So, what is a blood marrow transplant if you could briefly tell us that?
Roman: Well it sounds a lot scarier than it is. Basically, what they do is they inject you with chemo for I think it's seven days, and in those seven days, that basically kills your immune system. So, on day eight, which is the day of rest, you have no immune system, and your bone marrow is no longer producing blood cells. So, the following day they inject you from a matching donor or from my case it was someone unfamiliar who had a match of 10 out of 10, which is a very good match for blood typing, and that has… So, then the following day they inject you with it. It's basically a blood transfusion, but they monitor you and they have a full staff on the go, ready in case something goes wrong. It takes about two hours to transfer it over, and basically that's it. There's not much to it even though it’s still highly dangerous, and a lot of issues can go wrong, but the performance or the act itself is very simple.
Bill: And Roswell Park Cancer Institute found you that donor?
Roman: Yes, they do a search before they allow you to come, actually Roswell’s very well organized, and they have a whole set of set-ups as you go through. So, first thing they do is they bring you over for an interview, they give you the full lesson on what's going to happen and what stages you're going to be going through and what they're going to be doing with you. Then they send you for your blood test, which is a number of vials. I think it's about 18 vials of blood that they take for testing the different tests that they go through to match your donor. So, for me, I think it took about a week or two before they found the donor. And once they find it, they ask the donor if he's still willing to be a donor, and if that is approved then you move forward, and they enter you into the hospital and away you go.
Bill: And that communication that Roswell Park Cancer Institute provided, sounds like that was key.
Roman: Yes, that's very key and without it. And they actually go the extra step. I think Dr. McCarthy said to me that they actually test two other keys or whatever they're called out of the 10. So, there's actually 12 parameters that they look into. And so, the more the parameters, the more the match, the better the match…your, let's say, the safer the transfusion and the transplant.
Bill: So, after the BMT, what is the main concern? In your blogs, you talk about graft versus host disease can you tell us more about that.
Roman: Well graft versus host disease is basically your immune system defending itself against the new host that’s inside you. Now they want you to have a little bit of it because what that does is that the host bone marrow blood cells, now are attacking any residual cancer cells that are still left in your blood. So, a little sign of graft versus host is a positive thing versus a negative thing. They monitor you, basically, to make sure you don't go to the extreme side, which then can have severe side effects, and can actually bring on mortality.
So, they're very careful and due diligent, and they monitor you. So, the first 30 days you're in the hospital they monitor you for five times a day, they take blood tests every day, they make sure that you're… You’re basically like a bubble boy almost, and they watch over it. Then following the 30 days, they release you, but you have to stay close to the hospital for the next 90 days, in that time range. And again, the same thing, you go in on weekly visits, and if there's anything that you go wrong especially if you get a fever of 38 degrees Celsius. They want you to come right into the hospital as soon as possible.
Bill: So, you basically stayed onsite at Roswell Park Cancer Institute?
Roman: In the area, correct.
Bill: So Roman, let me ask you this, when do you know the BMT is a success?
Roman: The first critical time is the first 100 days, I know for us when we were finally released from Roswell to go home, there was a lot of anxiety on my side and my wife because it was sort of cutting the umbilical cord from Roswell and coming home, and missing that security and safety net that Roswell provides while you're there recovering. So, that that is kind of a major hump, and we've talked to other bone marrow transplant survivors, and we've all had the same kind of issue with that, that when we have to go home it's, “Oh, we're going to miss Roswell and what are we going to do if something goes wrong because we're not that close to Roswell.”
Bill: So, how do you manage this then on a day to day basis?
Roman: I’m back here in London, Ontario, so my hematologist takes care, and he monitors very closely with Roswell, Roswell still keeps track of me. We go through visits every three months with Roswell for I think my last visit is the end of this month, which will make it a year and almost six months from my transplant. After that, they'll be checking up on me on a yearly basis. And again, there's a tight relationship between my hematologist and Roswell Cancer Institute.
Bill: So, Roman you are currently in remission then?
Roman: Correct.
Bill: Well congratulations on that, very happy to hear that, and overall, can you tell us more about the care you received at Roswell Park Cancer Institute?
Roman: Well, so how do you put it? You're internally grateful for great staff, like I said, one of the things that impresses me with Roswell is, one that they're very well organized, two, they very much work as a team. One of the things that always impresses me was everyone that walked into my room knew my case inside, there were no mistakes made, they knew my history, they knew my drugs, they coached me all the time, they made you exercise every single day. If you missed a meal, the kitchen actually calls you and reminds you that you have missed the meal, even though you weren't even hungry, they followed up. So, from that standpoint, the care is extremely well done. And also, with the follow up, you couldn't ask for better health care, it was awesome.
Bill: Well Roman, again, we're very happy that you're doing well, and thank you for your time today. And you can read more about Roman and his blogs at, RoswellPark.org, that's, RoswellPark.org. You're listening to Cancer Talk with Roswell Park Comprehensive Cancer Center. I'm Bill Klaproth, thanks for
Blood Marrow Transplant Survivor: Roman Molodynia's Story
Bill Klaproth (Host): Today we're talking with, Roman Molodynia, a BMT survivor, BMT stands for blood marrow transplant. Roman has been battling acute myeloid leukemia, or AML, and he is here today to tell us about his story and experience at Roswell Park Comprehensive Cancer Center. Roman, thanks for your time. So, first off tell us what led you to Roswell Park Comprehensive Cancer Center.
Roman Molodynia (Guest): Well what it led me to Roswell Cancer Park Institute was the fact that, I was diagnosed, and as people may know or may not know I'm in Canada, and unfortunately, I needed a bone marrow transplant because it was the second time I relapsed with AML, and all the sites in Ontario, all the beds were booked, and my doctor felt that it was urgent that I get a blood marrow transplant as soon as possible. So, the condition that we had was that I would have to go to the States. He named a few states. I picked Buffalo because I was from Niagara Falls and born and raised. So, I was very close to Buffalo, my family was there. And also, because once I looked up Buffalo and the Roswell Cancer Institute, they had a very high successful rate in bone marrow transplant. So, for me it was a simple decision and it was a very good decision, and I highly recommend them.
Bill: So, what is a blood marrow transplant if you could briefly tell us that?
Roman: Well it sounds a lot scarier than it is. Basically, what they do is they inject you with chemo for I think it's seven days, and in those seven days, that basically kills your immune system. So, on day eight, which is the day of rest, you have no immune system, and your bone marrow is no longer producing blood cells. So, the following day they inject you from a matching donor or from my case it was someone unfamiliar who had a match of 10 out of 10, which is a very good match for blood typing, and that has… So, then the following day they inject you with it. It's basically a blood transfusion, but they monitor you and they have a full staff on the go, ready in case something goes wrong. It takes about two hours to transfer it over, and basically that's it. There's not much to it even though it’s still highly dangerous, and a lot of issues can go wrong, but the performance or the act itself is very simple.
Bill: And Roswell Park Cancer Institute found you that donor?
Roman: Yes, they do a search before they allow you to come, actually Roswell’s very well organized, and they have a whole set of set-ups as you go through. So, first thing they do is they bring you over for an interview, they give you the full lesson on what's going to happen and what stages you're going to be going through and what they're going to be doing with you. Then they send you for your blood test, which is a number of vials. I think it's about 18 vials of blood that they take for testing the different tests that they go through to match your donor. So, for me, I think it took about a week or two before they found the donor. And once they find it, they ask the donor if he's still willing to be a donor, and if that is approved then you move forward, and they enter you into the hospital and away you go.
Bill: And that communication that Roswell Park Cancer Institute provided, sounds like that was key.
Roman: Yes, that's very key and without it. And they actually go the extra step. I think Dr. McCarthy said to me that they actually test two other keys or whatever they're called out of the 10. So, there's actually 12 parameters that they look into. And so, the more the parameters, the more the match, the better the match…your, let's say, the safer the transfusion and the transplant.
Bill: So, after the BMT, what is the main concern? In your blogs, you talk about graft versus host disease can you tell us more about that.
Roman: Well graft versus host disease is basically your immune system defending itself against the new host that’s inside you. Now they want you to have a little bit of it because what that does is that the host bone marrow blood cells, now are attacking any residual cancer cells that are still left in your blood. So, a little sign of graft versus host is a positive thing versus a negative thing. They monitor you, basically, to make sure you don't go to the extreme side, which then can have severe side effects, and can actually bring on mortality.
So, they're very careful and due diligent, and they monitor you. So, the first 30 days you're in the hospital they monitor you for five times a day, they take blood tests every day, they make sure that you're… You’re basically like a bubble boy almost, and they watch over it. Then following the 30 days, they release you, but you have to stay close to the hospital for the next 90 days, in that time range. And again, the same thing, you go in on weekly visits, and if there's anything that you go wrong especially if you get a fever of 38 degrees Celsius. They want you to come right into the hospital as soon as possible.
Bill: So, you basically stayed onsite at Roswell Park Cancer Institute?
Roman: In the area, correct.
Bill: So Roman, let me ask you this, when do you know the BMT is a success?
Roman: The first critical time is the first 100 days, I know for us when we were finally released from Roswell to go home, there was a lot of anxiety on my side and my wife because it was sort of cutting the umbilical cord from Roswell and coming home, and missing that security and safety net that Roswell provides while you're there recovering. So, that that is kind of a major hump, and we've talked to other bone marrow transplant survivors, and we've all had the same kind of issue with that, that when we have to go home it's, “Oh, we're going to miss Roswell and what are we going to do if something goes wrong because we're not that close to Roswell.”
Bill: So, how do you manage this then on a day to day basis?
Roman: I’m back here in London, Ontario, so my hematologist takes care, and he monitors very closely with Roswell, Roswell still keeps track of me. We go through visits every three months with Roswell for I think my last visit is the end of this month, which will make it a year and almost six months from my transplant. After that, they'll be checking up on me on a yearly basis. And again, there's a tight relationship between my hematologist and Roswell Cancer Institute.
Bill: So, Roman you are currently in remission then?
Roman: Correct.
Bill: Well congratulations on that, very happy to hear that, and overall, can you tell us more about the care you received at Roswell Park Cancer Institute?
Roman: Well, so how do you put it? You're internally grateful for great staff, like I said, one of the things that impresses me with Roswell is, one that they're very well organized, two, they very much work as a team. One of the things that always impresses me was everyone that walked into my room knew my case inside, there were no mistakes made, they knew my history, they knew my drugs, they coached me all the time, they made you exercise every single day. If you missed a meal, the kitchen actually calls you and reminds you that you have missed the meal, even though you weren't even hungry, they followed up. So, from that standpoint, the care is extremely well done. And also, with the follow up, you couldn't ask for better health care, it was awesome.
Bill: Well Roman, again, we're very happy that you're doing well, and thank you for your time today. And you can read more about Roman and his blogs at, RoswellPark.org, that's, RoswellPark.org. You're listening to Cancer Talk with Roswell Park Comprehensive Cancer Center. I'm Bill Klaproth, thanks for