Melanoma Patient Allan Buium

In this episode of Spotcast, I’m joined by Allan Buium, who shares his personal melanoma journey. We talk about his diagnosis, the highs and lows of immunotherapy, managing its side effects, and his experience participating in clinical trials. Allan also discusses why talking openly, accepting support, and the outstanding care he has received from BC Cancer have been such important parts of his journey.

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Transcript

SPEAKER_00 0:02

Hello and welcome to the podcast. My name is Emer Hagen. I am the patient support manager at Melanoma Canada, and I will be the host of your podcast. In today's episode, I am joined by Alan Buen. Alan shares his melanoma journey with me from the highs of his top quality healthcare team to the lows of immunotherapy and its side effects. Alan is a regular tender of our monthly support group and believes it's very important for people to talk about their diagnosis. We hope you enjoy the episode. Okay. Hello, Alan, and you're very welcome to Spotcast. Thank you for joining me today. Alan, you finished your immunotherapy in July of last year, and you're going to talk us through a bit of your journey and your experience with melanoma today. So I'm wondering if you can just sort of take me back or give us a little bit of background about yourself and your life before your diagnosis.

SPEAKER_01 0:59

Okay. Well, excuse me, I'm 86 years old, and uh I was a secondary social studies teacher for 30 years or 31 years, and I took early retirement in 1997, and after seeing what happened to some friends and the like, so I thought, you know, life may be a bit too short. So I uh took early retirement and have had no regrets since then, and uh everything has been fine. Um I um I'm quite active. In 2000, I joined a cycling club, but uh and I have been involved with it since then, and including I coordinate a Sunday ride still, plus touring, and which I have done in BC for the most part, mainly camping, which is enjoyable to say the least. Uh I enjoy the gardening and uh part of a garden club uh with my wife. In addition to that, in our community, the Vancouver City Council created a number of regions within the city, and I've been involved with that community group as basically a watchdog since the year 2005 when council created it. So all is good in that regard. I I've been very healthy. I didn't really have any real problems at all. Until a few years ago, I had diverticulitis, and uh it sort of hit me, and it was quite bad. And uh, but I you know got over that, and there was no problems with that since. I also had a chronic case of perianal abscess, uh, which people may not want to talk about, but it was certainly an inconvenient item for uh many, many months, and then they finally, you know, solved the problem. We I changed from a touring bike to a recumbent, which I use, and I sort of uh, you know, it's a bit different, but it's all okay.

SPEAKER_00 3:00

Super Alan, I'm glad to hear you're still cycling. Um, and thank you for sharing that background with us. I was wondering if you could tell the listeners when you first discovered there was something wrong with your skin.

SPEAKER_01 3:12

Um it was two years ago in March that I I had no pain whatsoever. And uh, you know, sometimes you get up in the middle of the night, go to the washroom, and I was itchy and uh on sort of my right shoulder blade. And so, you know, I I couldn't reach it. So, of course, you rub it against the door frame or whatever, and uh the door frame is you know light color, it's whitish. And uh the next day my wife said, you know, how come there's blood on the doorframe? Oh, okay, and she looked at my back, and there was a bit of blood still there, and so I phoned the family doctor, got an appointment, and she uh looked at it, froze it, and uh took, cut out something that she was going to send to the lab and you know, stitched it all up, and um, that was it. I thought, oh, I'm I'm fine. So when I went back to have the stitches out, which is probably a couple of weeks later, um, and uh gave me the report that uh the biopsy showed that there's something malignant. So that meant that uh, and I had a dermatologist, you know, I had gone to, you know, for uh minor items on the skin, et cetera. And uh so I went and saw him very quickly, you know, within a couple of weeks after, and uh, and I'm mentioning timeline because things moved very quickly, fortunately. And he I said, Oh, I guess you're gonna solve the problem. He says, No, you're you're going. Um, I'm gonna send you to a surgeon oncologist. And I saw that that was so April, and I'm into the latter part of April now, and I did see her. She um sent me for a number of tests. I think I had an MRI, I had a PET scan, I had a CAT scan, a couple of other things. And um, then they set me up for early June to have it removed. And uh where it was, they could usually do it locally, but she wanted to uh check the lymph nodes on the right uh side. She asked if I would wanted to be involved in a study that she was involved with and a couple of other uh oncologists in British Columbia, where they talked about the size of the incision of one to one centimeter versus two centimeters. I said, sure, fine. So, excuse me, I had a one centimeter incision, and uh whatever was there was removed. Uh the lymph nodes were clean. She said that I had a stage two ulcerated melanoma, was approximately five to seven millimeters deep. And um so it was primary cutaneous melanoma. And then the study um would follow me for ten years. And I thought, oh, that's better than a car warranty.

SPEAKER_00 6:13

Absolutely, Alan. Sounds like a fantastic warranty. By this stage, then you've had your surgery. What is the discussion you had with your medical team in terms of next steps for you at this point?

SPEAKER_01 6:24

I asked her if uh she said, you know, we should maybe, you know, is this a good chance of returning or whatever? She says yes, it could be returned and recommended immunotherapy because the the percentages were the percentage was quite high, actually. And so I thought, no, I can't take a chance with that. And then I was I had an appointment with a my a surgeon oncologist at VC Cancer, and I saw her, and we started the immunotherapy in July of 2024. She also asked, and um, she had her a nurse researcher with her, and they asked if I would volunteer, if I would like to be involved in a study. And there were only, I think, six other candidates. If I would qualify, they didn't know. What they did was take my biopsy and they would create a vaccine based on the mRNA platform. And that in turn uh would be created to see if they could do it. And eventually we found out that yes, they could create the vaccine. I didn't find out immediately, but took quite a few weeks. And it in fact, after I had actually started the immunotherapy with uh Pembrolucemab, and we were also, I was also told that it would be a double-blind study. There would be two out of three of us would get, I will call the real thing, and uh one placebo. And so you you I guess you just hope. And uh I uh, you know, I used to get a sore arm and things like that after the vaccine. And so one of the doctors said, uh, you know, I think you may have had the real, it wasn't a placebo, it's not going to give you do that to you. Anyway, so that and that finished before my immunotherapy. I think there were six or seven uh sessions on that, but the immunotherapy uh would continue right through until the following year, which would put me into, as I said, you know, late June, early July of 2025.

SPEAKER_00 8:41

Before we talk a wee bit more in depth about your your journey, Alan, I was wondering, you know, you've had your diagnosis, you've had your surgery, you've been involved in two studies. You know, could you tell us why you chose to participate in both studies?

SPEAKER_01 8:55

A, it's gonna help me, but also it's gonna help others as well, and uh in the future. And so, you know, and I said, you know, my my, you know, I can I can afford, I've got the time, so why not try to help others as well? And just as a sideline, uh Merck is the sponsor of the uh test, which they in that sense they went ahead and I think I for the while I was doing every three weeks, you know, you do the blood tests, etc., the urine sample and the like, and uh event, you know, and um I forget how often, but quite often CT scans as well. And also um I've had a couple of MRIs.

SPEAKER_00 9:40

Okay.

SPEAKER_01 9:41

And so everything seems to be good in in that regard. So I'm I'm quite happy with that.

SPEAKER_00 9:48

Fantastic, Alan. It sounds like you've been really well looked after. I know, Alan, from our previous conversations, when you received your melanoma diagnosis, you were informed of another situation going on within your body. I was wondering if you could talk a little bit about that.

SPEAKER_01 10:06

When they did my original, you know, testing, the surgeon did, and with the one pet a scan showed up, a spot on my lung, you know, in that lung area. She then wanted to pursue it. And what they did was she sent me to a um thoracic specialist uh at Vancouver General. He looked at the x-ray, you know, at the scans, etc., and he explained to me what he it may be, and uh they had to decide then what are they gonna do. And so he gave me, I guess the worst-case scenario would be uh well, a an operation, and b, hopefully he didn't have to cut the breastbone. Now that would have been the worst, and and he didn't, fortunately. And so we had to fit the operation in between my immunotherapy treatments, and so the oncologist said, okay, here's the small window, you will have to, and he had to sort of he fit me in in that, and it was the uh couple of days before Thanksgiving in 2024. And so, yeah, it was laparoscopic surgery, and uh that was fine. You know, I was out in a couple of days from that point. You know, you feel, of course, weak, what have you. Then I saw him, I can't recall exactly, you know, within two to three weeks after the operation, and he said, what we took out was malignant. Yeah, a squamous cell anyway. And uh, and it's not common, not common at all for this to happen. And um he said, okay, we have they've had a conference, the few oncologists, and what are they gonna do? And they said, Well, I'm gonna send you to radiology and uh see what they will do. I saw the radiologist, oncologist there at BC cancer, and he said, Look, you are getting immunotherapy, you're having uh the vaccine, let's take a chance, you know, and gamble on the in a way, and he did not recommend radiation immediately, and hoping that the immunotherapy would take care of it. And so over the next short while, you know, a few months, every time I would see the thoracic specialist, he said, you know, it's shrinking, you know, whatever was there was down. And the last time there may be in a small spot still, but he said it could be scar tissue. So nothing to be concerned with, which was very fortunate. And uh, but you know, I'm watched. Um, and then every time I have my CT scan, of course, they show up on the it's they can see the chest. And so I'm fortunate in that regard. That's it, you know. And a thymoma, for those that are not familiar, and most of us aren't, uh, it happens to be a uh a gland between the lung and the heart, and it's usually quite, you know, a sizable item as we were born and we grow with it. As you get older, it shrinks. Anyway, mine didn't shrink the way it's but I had absolutely no symptom whatsoever of being tired, nothing what at all. But it did do one thing. I don't have acid reflux anymore. Nobody could figure out. But anyway, you don't want to go through that just to get rid of acid reflux. Okay.

SPEAKER_00 13:31

Absolutely not, Alan. Um thank you for sharing that. I know it's not easy to receive one diagnosis, but you got two at at the one time. So thanks for sharing your experience with that. Uh I wonder now if we can just touch on uh the immunotherapy that you did receive um for your melanoma and potentially some of the side effects that you experienced.

SPEAKER_01 13:53

Uh I would say um about six months into the uh journey that is the journey of immunotherapy, I started to get side effects. And uh to be you know very blunt about it, it it affected my bowels and it wasn't comfortable and uh it didn't get better, you know. It just was there and it became I I felt you know, I guess the term chronic would be a way to put it. And um, you know, my blood tests were generally okay, maybe a little on phosphate or whatever, so they'd give me some supplement there. And then as time progressed, and we're now into um 2025, I um still didn't get rid of this, you know, uh discomfort and emergency situation of running, you know, to the facilities. And um, you know, I talked with the doctor all the time, you know, and with the nurse, we talked about, you know, we're very frank about the whole thing. I thought, okay, this is not new for them. It is new for me, but not them at all. And uh they put me on some a FODMAP diet, uh, came out of Melbourne, Australia. And um so it was quite rigorous to start with. No lack, no dairy products, and um, unless it was, you know, sort of seasoned, like you know, harder cheese texture-wise, uh, no milk. So oat milk is actually quite nice. And uh found that out. And then in in addition to that, I was taken off of all kinds of uh fiber stuff material as well, I'll call it that. Uh, lentils were out, this was out, that was out. Uh I was nearly on a celiac diet as well. And so that wasn't strange because I have a granddaughter that's celiac. So I could, you know, Maya and myself would talk about it at times. Yeah. So in our support group, you know, people ask, you know, side effects, etc. So you, you know, I sometimes say you don't want to really scare somebody with this kind of thing, but I have found it very helpful that others have had something similar. And especially, you know, somebody had mentioned uh I forget how many months ago, but they said they're on Pentassa. So I said, Oh yeah, good, so am I, in the sense that I'm not the only person in town with it.

SPEAKER_00 16:14

Yeah. So Alan, can you tell me, are you so you're still you're still on Pentassa?

SPEAKER_01 16:18

This is Yes, I am. So what happened was when I had, you know, quite a few months of really major discomfort with the bubbles. Okay. And then my oncologist got uh a colleague of hers, uh gastroenterologist, and and I checked, and she specializes in sort of side effects from immunotherapy in that uh part of the anatomy. I said, okay, so anyway, we had a conference, you know, consultation there because it was not getting better, okay, and FODMAP hadn't helped as much as you know we thought it would. And so you're, you know, you're not eating certain things. Yeah, you know, I wasn't even allowed ice cream. So that became a joke, but I found some uh gluten-free one. But anyway, I ended up with a colonoscopy in August of last year, and sort of, and it was I didn't have to wait very long. It was done very, very quickly. Basically, I had colitis, and that's one of the side effects of immunotherapy. And so, you know, I had prior to that for a couple of months, I was on prednisone, started with a very high dose, and they and you know weaned me off of that. And then I was put on pentassa and um and some more prednisone, and then pentassa, and uh, I just did my income tax and realized pentassa is a is a pricey item, it's not like all the others. And anyway, I have a plan, and it regardless, it has helped. All right. And so my GI she put me on pantassa for six months, and I will conc hopefully and I'll have to then have a test and to see where I'm at. But at this moment, in the past quite a few months, I have been good. I don't have to run on no emergencies. I, you know, have basically a normal uh bowel system now.

SPEAKER_00 18:15

I'm delighted, Alan, to hear that you're on the road to recovery. Um, because I know from speaking to other patients that you know the bile side effects of immunotherapy can be one of the most debilitating uh side effects. And you've talked there around, I suppose, the physical side effects of immunotherapy. And I'm wondering if you could touch on you know how did it impact you emotionally and and mentally.

SPEAKER_01 18:38

So last spring, I guess it was March of last year, I was starting to get down, you know, um mentally. You know, I don't feel great. And so I talked to the oncologist and the nurse, and you know, they have been very, very supportive. You know, all of the medical people that I've dealt with, very, very I can't emphasize how supportive they have actually been. And you know, when I talk to them and I'm in the office, you know, some it sort of gets me at times, you know, that you know, you get emo I get emotional with it as well. But they have been very supportive, as my family has, my kids, uh I have two children, and uh um my wife, and she, you know, all very, very supportive. So it's great, you know, I've got that help. Um, but I ended up getting a session with a counselor at BC Cancer Agency, and she was very good. And we spent an hour. She suggested, you know, is there anything else? Support group, I thought. So anyway, they she put me on to, you know, contact your group. And so since then, I have been involved and very appreciative of every session, um, you know, of learning something, hearing other stories. And, you know, and some of the sessions actually tire after an hour and a half. They're tiring, but it's it's interesting to hear, and you're not the only one. And uh I guess we can say, you know, we're all in the same journey, you know, patience. We're we're all on a journey in one form or another, you know, be you know, something very positive that had come out of it. And not hesitating to talk. And um you gotta laugh a little bit. You sort of cry, you laugh, whatever. I've talked about it. You know, people ask, and I say, I don't dwell on it. I say, look, I can't do this. Um, I just had an operation, and you know, and I I didn't cycle for quite a while. And I would say, you know, and um that was it. You know, I can't do certain things, and you do lose a little bit of energy. And uh, I guess, you know, as you age, you also lose a little bit. I realize that. So um, but I don't hesitate to talk about it. And uh, if I can help somebody, and I have friends who've both gone through some form of cancer, and uh, you know, we've talked. Yeah, I think talking is important. I think the support group is very, very important as well.

SPEAKER_00 21:02

Fantastic. Thanks, thank you, Alan. Um, if you had one piece of advice for somebody newly diagnosed today, what would it be?

SPEAKER_01 21:11

Well, I would always um if I'd go in going to the doctor, either take somebody with you, because you don't hear it all, or take notes, which I did. Sherry stayed at home, you know, and I said, no, I'm okay, you know. And she did come and meet my uh uh uh oncologist, and we had a good laugh. And uh, but um no, I uh I think take notes, be aware, and say everything that bothers you. You know, if something's urge, my shoulder's bad, my this, my that, tell them. I think it's very, very important. Because if you don't tell the doctor, they're not gonna know. Yeah. So when I have had problems and that bothered me, I have I phoned the nurse on the nurse who works with my oncologist, and she answers me right away. It's either an email or she'll phone me and we have a conversation. And it's just so open and so very, very helpful. I I've been very lucky in that regard. But I think one has to say something. I had uh I fulled up my left shoulder last year, and uh I thought, you know, what did I, you know, it was my fault. I carried something on that tripped. And I thought, oh, and I was going for physio, you know, quite often, and uh, because I was already under treatment. And I then realized I went back to the literature and realized some of the side effects can be muscular as well from immunotherapy. And I thought, you know what? I don't think this the physio is helping any longer. But anyway, I continued to do the exercises, but that, you know, that's just one other little thing that I think you you want to sort of keep in mind. But they follow me regularly, and I, you know, very fortunate with that. And I'd recommend a support group. Yeah. Um, and I think, you know, all very beneficial. And um, yeah, and just hope for the best and follow the instructions that they give you.

SPEAKER_00 23:04

You see, you seem to have had a really um, I suppose, uh good, uh positive, if I can use them two terms, experience, Alan. And you keep put that back to the the healthcare team that have supported you. They've been they've been very good. Do you think that is maybe added to that is the fact that you have been involved in in the studies on the clinical trial? Do you think that has made your experience that bit better?

SPEAKER_01 23:26

I may have, yes. Because they're following me more, I think, more often than um than if I wasn't on a trial. You know, if it wasn't every three weeks, it may be every six weeks or something along those lines. But I don't think that um if I wasn't on the trial, I don't think I'd be shortchanged in treatment. I think I'd be getting it still, you know, all the the uh the follow-up. Follow-up. Yeah. And everything seems to be, you know, good.

SPEAKER_00 23:56

I suppose you've been very good at looking after yourself throughout this, reporting any side effects, you know, getting the emotional support from the support group and and so on, and and physically trying to stay active. What does life look like now? Are you still have you continued to cycle? Are you back on the bike?

SPEAKER_01 24:15

I cycle. I have through my cycling club, since I sort of it's hard to get volunteers to do things. So I still coordinate a Sunday ride because we only do one a week and I try to get out, you know, a little more often. But yeah, I do the Sunday ride. Um, I do the gardening, you know, I'm active there. I I had a greenhouse for a long time, so I continue to do all of that. I my community group, yeah, I'm active there. And you know, if you got a we're sort of um watchdogs, so if it's a thorn in the side to city council, too bad. They can smarten up and so yeah, I'm active. Yeah, yeah. I don't think there's enough time sometime to do things, you know, which I feel that's good. You know, I'm not sitting around and uh and I'm not on the screen all the time. Yeah, you've you've kept yourself definitely kept yourself busy and you you took early retirement on, as you say, there's maybe not uh enough hours to well I know what can you know this gets you down, you know, and uh and I think you know when I listen in our support group and listen to others, I feel that I'm very fortunate. Mine is not as serious as some of the others. And um I've gone through, yeah, the treatments and what have you, and you know, the other problems that I've had internally have been resolved. And um it can be discomfort, you know, there as well. But and I think it's important to talk about things. I don't wanna, you know, st I don't store it, you know. Um Sherry'll listen to me, which is good, and uh I have, you know, my kids, yeah, they're they're good.

SPEAKER_00 25:46

And you're you're a big believer in in talking and um how important would you say it is to to talk to people that get it so in in the likes of the support group where other people are in the similar situations to yourself? Do you think that's that's really important for somebody going through this journey?

SPEAKER_01 26:02

I think so, yeah. Because you're sharing, and I've learned a lot, you know. As I said earlier, uh I somebody in the group was taking pantassa for some similar symptoms. Oh, okay, fine. Some of them had joint pain or whatever. Okay, I'm not alone in this. And uh yeah, I I think those are very important items. And you and we're there. I mean, we have it. It's not you you don't get rid of it. I think it's I I th I find it very valuable, and I will continue. I'm not uh packing it in. No.

SPEAKER_00 26:34

No, that that's great, and it's it's it's a great great piece of advice, I suppose. Um especially in a society where men don't often feel comfortable talking about things.

SPEAKER_01 26:45

Yeah, yeah. And um you're right. I never thought of yeah, you know, my wife tells me that. You guys never talk about anyway. Yeah, absolutely. And um I I think it's important.

unknown 26:57

Yeah.

SPEAKER_01 26:57

And I know in our support group, I mean, I think uh the men are in the minority, but there are men there and they do talk. I learned some and you learn something from it.

SPEAKER_00 27:07

Well you're you're a great you're a great promoter for the the support group, so thank you for that, Alan. Say a big thank you to to you, Alan, um, for sharing your your story and and your lived experience um with with me and the listeners today. Um I know your experience will will resonate with with many patients, and I hope many patients listening will take heed of your advice to talk to others, to join a support group to seek uh that support that they need. Um so thank you for for sharing with us today.

SPEAKER_01 27:37

You're very welcome. I appreciate it everything the group has done and appreciate you know what you're doing as well, Emer. Thank you.

SPEAKER_00 27:45

Thanks, Alan. Thank you for listening to the podcast. We will be sharing new episodes every month. So please be sure to like and subscribe wherever you get your podcasts. And for more information and support from Melanoma Canada, you can visit our website at melanoma canada.ca.