Hereditary Leiomyomatosis and Renal Cell Cancer

10 year survivor of metastatic kidney cancer

Listen to Alex Dinh’s story on the ‘Best Life after Cancer’ Podcast here. Transcript from the podcast is provided below. 

Dr. Deborah Bach (00:05):

Welcome to Best Life After Cancer. I’m so glad you’re here. This is the podcast where cancer survivors and caregivers can get solutions and support to overcome the life challenges brought by their cancer diagnosis. If you are ready to release your fear, regain your joy, and reduce your risk, you’re in the right place. I’m your host, Dr. Deborah Bach. My friends, I have an awesome guest for you today. His name is Alex. I know him through my husband and he has had quite the journey with a kidney cancer, and I am so excited for him to share his journey with you and give you some of his insights about this disease and how he’s dealt with it. Alex, I’m just gonna hand it over to you and tell us your story.

Alex Dinh (00:57):

Well, again, thanks for inviting me. My name is Alex. I was diagnosed with kidney cancer. Let me think back in November of 2011, before that I was born with Hepatitis B. So every year I would get an ultrasound of my liver just to make sure the liver’s okay. So in that fall, I had gotten an ultrasound and the liver was fine, but the result came back. There was this 15 centimeter mass on my kidney. So obviously that was a big shocker. Uh, we got that result on a Friday in the fall, a few years before that, one of the previous ultrasound showed that there was a cyst on my kidney. But cyst in normal people, as long as they don’t change, don’t do anything, they’re, they’re benign, nothing to do. So we kind of stopped following it <laugh>, uh, which, you know, obviously looking back was a mistake, but, so we got that result on a Friday in 2011, and then I reached out to your husband that very same day working with him. You know, I get the benefit of having access <laugh> Yes. To a great surgeon that, you know, otherwise I wouldn’t have. So I met him on a Friday. We, we got some more further testing and decided that we need to remove the mass and whirlwind 24 hours later I’m in the operating room on a Saturday.

Dr. Deborah Bach (02:22):

Yeah, I remember that. Because both of us had kids that were little at that point. Um, yeah.

Alex Dinh (02:30):

Uh, funny you mentioned I had, so 2011, I, um, my oldest would’ve been five and my middle one was three. And then that Friday, so the Monday of that week, we had just found out that Megan was pregnant with our third Oh

Dr. Deborah Bach (02:46):

My gosh.

Alex Dinh (02:47):

So we had this like jubilation excitement in the beginning of the week and then Friday this, this crushing devastating news. Yeah, exactly. So it was just a crazy week.

Dr. Deborah Bach (02:58):

I remember that as well because he came home and we had four littles at that time, <laugh>. And he says, I’m operating tomorrow, pretty much like a big all day thing. And I go, mm-hmm. <affirmative>, what the hell? You’re not even on call. Yeah. <laugh>.

Alex Dinh (03:17):

Right. Exactly. The life of a

Dr. Deborah Bach (03:19):

And he tells me this story and I was like, oh my gosh. Absolutely. You do what you need to do and you take care of him and yes, tomorrow is great. I’ll figure it out. Yeah. You know, I mean,

Alex Dinh (03:33):

It is such a, like, shocker cuz it, I mean, you know, I’m, I’m in my mid thirties. I was healthy before that and you know, no, no. And I didn’t even have any symptoms. So it wasn’t like I had back pain or blood in the urine or any symptom that would clue me into this kidney cancer diagnosis. And I probably wouldn’t have even found out if, like I said, I didn’t, wasn’t getting regular ultrasounds for my liver until it was even later than, than than what it was. So had the surgery on a Saturday, you removed the whole kidney and then just stayed in the hospital and recovered for a few days. And then once I went home, my wife and I, you know, again, we started thinking like, why did I get this diagnosis? So my uncle, my dad’s brother that July, 2011 had passed away from kidney cancer.

(04:21):

He was in his fifties. So we thought, okay, fifties, that’s more I guess common to get kidney cancer. So we didn’t think anything of it. But thinking back now that since he passed away from that and I got this diagnosis, we said, well maybe we need to go get genetic testing to see if there’s something going on, something wrong. So went about doing that and then got the results back. I would say maybe December of that year, 2011. And it turns out I have this rare genetic defect. Um, it’s called H L R C C. So it stands for, um, hereditary lyo myoma renal cell carcinoma. So H L R C C. Pretty rare. It’s a little bit more prevalent now because people are just learning out that a lot more people have it Mm than they thought because they just, you know, passed away from kidney cancer and didn’t think anything of it.

(05:11):

But it affects obviously men and women. The women who have this disease, they end up getting a lot of, uh, uterine fibroids and end up needing hysterectomies in their twenties and thirties. And so it’s already a rare disease and men, only about 10, 15% of people who have the genetic defect move on to get kidney cancer. But once you get the kidney cancer, it’s supposed to be a pretty aggressive type of kidney cancer. So getting the diagnosis we’re, we were obviously devastated, uh, you know what this would mean. Uh, and then started looking for treatments options cuz once when we’d had the surgery, they obviously removed the kidney, but your husband also checked the lymph nodes and there were, I think two out of the seven lymph nodes were positive. Mm-hmm. <affirmative>. So it had gotten into the limb system. So looking at treatment options, there wasn’t any, um, approved treatment at that time.

(06:05):

There was no, no chemo, no radiation, no nothing just other than surveillance other than just watch it. And being young with two young kids with another kid on the way, uh, we said that’s, that’s not okay <laugh>. We just gotta sit back and not do anything at all. So started to do some research, looked around and there was a couple of clinical trials. We went to um, Sloan Kettering at first and then they had this trial to trial this drug called everolimus. And it was for people who had kidney cancer who had their kidney removed and had positive lymph nodes. So it fit me perfectly and I could get it locally back at, at Robert Wood Johnson where I worked. So Perfect. We signed up for the trial, you know, uh, obviously we don’t know if we’re gonna get the drug everolimus or placebo, but at least we’re doing something, anything. Mm-hmm <affirmative>. So part of the trial, and this is now January of 2012, part of the trial was to get baseline scans to know where you are before you start the trial. So got the baseline CAT scan and so there was obviously, you know, no kidney on the left where I had it. And but in the area where the kidney used to be, there’s this mass and they don’t know what it is. It could be just post-surgical changes or worse it could be, um, cancer coming back recurrence at that site. So, and this

Dr. Deborah Bach (07:29):

Was only like three months after your three months later initial surgery? Yeah.

Alex Dinh (07:33):

Yep. Mm-hmm. <affirmative>, and this is the story of my, of my whole journey. It’s this treatment and then a setback treatment, setback treatment. And it goes on for years because like I said, this, this kidney cancer is pretty aggressive so we had to be, you know, just as aggressive taking care of it. So, you know, we saw this mass. So I had follow up now with an oncologist. Oh no, no, no, no. I went back to Phil first and he said maybe we should get a biopsy just to see what this mass is, um, because it could be nothing. So got the biopsy at Robert Wood and it came back pathology, it was renal cell, so it was a recurrence. So now I don’t qualify for this trial. So again, we’re back to square one <laugh>, nothing again to do. So then I started to look into other treatments. Maybe now there’s some other chemo, another trial. So I went to an oncologist at Fox Chase. Now, I guess this is one of the benefits of living in this area because I always complain to my wife, we should move to Florida or something when it’s cold like this, <laugh>. But the benefit of living in the Northeast is you’re surrounded by all these great institutions. I mean, Sloan Kettering, Fox, chase, like all these awesome

Dr. Deborah Bach (08:40):

Pennsylvania. Yeah, there’s so many places.

Alex Dinh (08:44):

So yeah, so many resources. So, so we went to Fox Chase and uh, got hooked up with a really good oncologist who brought my case up at the tumor board. And then I met with a surgical oncologist there and he, we decided let’s do a second surgery. Uh, this time not only remove this little mask that’s in the, um, kidney bed, but remove all of the lymph nodes in that area. I mean, dissect major dissection, remove everything. So hopefully we get everything this time. So now this is February of 2012, so this would be the second surgery. And I had this one at Fox Chase and this one was the big one. Like it’s the, I mean it was like an eight hour affair. It was a really big surgery. So he went in, dissected down, removed all of the lymph nodes and I recovered.

(09:37):

Okay. But then I went home and I got a bowel obstruction, so had to go back to the hospital and got a third surgery now for a partial colon resection because of the bowel obstruction. Um, so that’s the third surgery. And then recovered from that and then went back home. And then in, I guess now this would be April or yeah, April or May got my first set of follow up scans at uh, Robert Wood. And this was like the one scan where it was like, oh, everything looks great. There’s nothing there. We were so excited, we were so happy, you know, like, like the surgery worked, everything looked great. And then in July was when my third, uh, kid was born and then had my next set of scans, I think now this is September. And that one wasn’t so good, that one said, oh wait, there’s this, now it’s like four centimeter mass, same kidney bed area.

(10:37):

And then the, the radiologist looked back and said, oh, maybe back in April or whatever it was there. But it was just small, we didn’t see it. So I’m thinking to myself now after the, you know, going through everything that maybe there was something, you know, like, like God had did something there to say, you know, just relax, enjoy the birth of your son in July. Don’t worry about this cancer. You know, cuz it wasn’t on my mind, which was great. But obviously now September more setbacks that uh, that is back. So then we went back to my oncologist, Fox Chase and the surgeon and he said, you know, one option is to go back in and remove the mass or another option is to look for more trials. So my wife and I looked and this time there was a clinical trial for renal cell cancer for H L R C C specific to us at the N I H down in Maryland, Bethesda.

(11:36):

So we made an appointment, we went down there again, all kinds of scans, tests, stuff like that. And they said that I qualified for the trial. Um, the results of the trial at, you know, it was early in the trial, but the results did show some promise. Um, there were some side effects. Um, but he also said, you know, surgery is a, is is not a wrong option, but you know, he would recommend doing a trial. So my wife and I, we went home, we discussed it. I guess this is like being in anesthesia and, and the the surgical field, I always chose the surgical route if I could, if it was always an option, I always chose that route just to, you know, give that shot of just removing it and being good afterwards. So if you tell me that that’s an option where I can go in and and get it removed, then I, then I would pick it.

(12:27):

And so we did. So we, we picked that option to go in again to, to remove the mask. And the, the reason why he said that the, that was an option was because yes it was a recurrence but it was still all local localized. Mm-hmm <affirmative> like it was still just in that area on the left. Like it hadn’t traveled anywhere else. It didn’t metastasize anywhere remote. So he said it was still an option. So we went in, so this would be 1, 2, 3. This is the fourth surgery now. <laugh> <laugh>. Uh, so go in and this time with,

Dr. Deborah Bach (12:58):

With a tiny baby at home

Alex Dinh (13:00):

With a tiny baby at home. Exactly.

Dr. Deborah Bach (13:01):

And a and a wife who also works, the wife and two other children who

Alex Dinh (13:05):

Other young kids. I mean we had, it was, it was, it was uh, we needed a lot of help. So it was very good that my wife’s parents live close by a lot of praying obviously during these this time a lot of healing masses. That’s the other part of the journey that I’ll share after the whole surgical part that I think is just as important. So this is now the fourth surgery and this is I think in October of 2012. And we went in and removed this mask and it also removed my spleen cuz it had gotten involved and the so is muscle in my leg. I think that’s where the mask initially touched. And this was around the time of Sandy of 2012. So now I’m in the hospital post-surgery and I had no problems cuz obviously we had power and everything. But my wife was home with these three young kids with no power.

(13:53):

I mean it was crazy. It was nuts. So the surgery went well except when I woke up, I guess part of the nerve in my left leg got damaged. So I couldn’t move my leg, I couldn’t walk, I couldn’t, I couldn’t lift my leg at all. So needed a lot of rehab afterwards just to start training the leg to move again and walk again. And so this was October. So, so in January now, this would be 2013, rehab, the leg, everything looks good, went back, got my first repeat of scans and more bad news <laugh>. So the no more masses on the left side where my kidney used to be. But now there’s something suspicious in the liver. So now that crossed over and went to the other side of the abdomen. So now surgery’s not an option anymore. So that was it. So now we reached back to N IH and said, okay, maybe I’ll go on that trial now <laugh>.

(14:49):

So went back to them and that’s when I started what’s called the avatar trial. It was a combination of Avastin and Tarceva. So Avastin was an IV drug that I would get once every four weeks. And the Tarceva was a pill that I took every day. So I was on that trial. So that started in February, 2013. And first set of scans in April, 2013 was amazing. Like everything got reduced by 50, 60%. All the masses that were in the liver, the lymph nodes, like everything. So it looked like the trial was working, thank God. So everything looked great. Um, and I continued on that trial for a long time. I mean I met a lot of great people at the N I H uh, that was going through the same thing, same H L R C C stuff going through the same treatments. And we found, uh, there was this group on Facebook that was called H L R C C.

(15:44):

Um, and that’s how I connected with some of these people at the nih. And we just started supporting each other and talking about like side, how to take care of the side effects of the treatment and, and just giving each other support like when we get good scans or not so good scans or anything. And then meeting each other. When we went to N nih, I would meet these people, we’d go out to dinner and it was great. It was like this great support system cuz there was other people who knew what you were going through and, and know, knew the implication of this diagnosis and how aggressive everything was and, and and stuff. So fast forward now, I was on this trial for a good five years and it was a treatment every four weeks. At first I could get it locally, but then you’d have to go back to the N I H to get follow-up scans every 12 weeks.

(16:32):

So every 12 weeks I would drive down to the N I H and get all scans, uh, drugs, everything and every scan looked great. Everything looked stable every time. Everything dep it got to a point where like they really couldn’t see anything, which was phenomenal. But there was no end point. There wasn’t like, okay, you don’t see anything, we’ll stop you off the trial, let’s just, you know, go on your way. So, but, which was fine because I think my wife and I just, you know, said if things were working, don’t stop. Like, don’t. Right. Why take a chance? Why? You know? Yeah. The side effects were sometimes it got a little rough. Uh, mostly it was fatigued. There was some GI issues with, uh, with diarrhea and stuff like that. And then high blood pressure. I need to be on at 1.3 different high blood pressure meds.

(17:21):

Uh, my skin was really dry from Tarceva, so I needed like a lot of, um, a lot of, uh, moisturizing and stuff. I mean it was just like a, it was a routine every day to to to get myself ready. But whatever it took, whatever you needed to do to keep moving. Cause you know, you got these young family, you got this young kid, you gotta, you gotta do what whatever it took. So, so that was five years. So now we’re like 20, 20 18, yeah, 2018. And the other side effect of the drugs was that it started to cause some, um, protein to leak into the, the urine. So, and at one point it had gotten too bad, uh, too much proteinuria that we had to take a break from the trial. So I had to stop devastating news obviously because didn’t ever wanna stop these, this drug that was working so well.

(18:17):

So we stopped and just kept following with the scans and it still looked stable, everything still looked good. Um, and there was still something now that they see in that liver area, but it wasn’t like growing. It wasn’t anything that was like getting bigger or anything like that, even without the, the drugs. Uh, one of the other side effects of the drug was poor wound healing. So you couldn’t do any kind of surgery, any kind of operation, anything like that while you’re on the drug, you gotta let it wash out your system. So now we’re into the fall of 2018, something like that. And everything had washed out for a while now and still just this little area in the liver, but was very stable, didn’t do anything. So, you know, again, me being in that surgical field, I got the idea, well why don’t we go in and just take that little thing out of the liver?

(19:08):

You know, if, if, if that’s the only thing that’s there, there’s nothing anywhere else and hasn’t been stable, even off the drugs for a while, why not give it a shot? So now, and I got a recommendation to go to a liver sky at Fox Chase. Uh, met up with him and he agreed. He said, now I can do a partial liver resection and take that little mass out cuz everything didn’t show any activity, any concerning errors anywhere else. So was that area hot on the PET scan? It was. And so yeah, it was cancerous. So now this is I guess the fifth surgery now. Yeah, fifth surgery, <laugh>, if we lose track, it’s so crazy. So, uh, partial liver resection now. So this is the end of 2018. We had the partial liver resection and recover from that and everything still look good afterwards for a little bit.

(19:57):

But like I said, like with this surgery, every time you feel good, it’s like a whack-a-mole. I, I said it <laugh>, you see this cancer, you stomp it and then it comes up somewhere else and you stomp it again. And so you thought you were good for a while and then one more follows can and it’s back. And now it’s like a little bit outside the liver, but it’s still there. It came back again. Ah, so more devastating news. So again, went back, uh, and said what’s what’s the options now? What you know now that I’m not on the avatar trial anymore and I can’t have surgery where the options, uh, did some more research again asked around in this group that I had. And it seemed like at that time there were two main other treatments that people found a lot of success in.

(20:41):

One was called Cabo and then one was an immunotherapy drug called Opdivo. And we started researching that, the Opdivo one because it sounded really good. And the whole point of that drug was to turn off all of these regulators in your immune system so that your immune system can go about attacking anything that doesn’t look like it should be there at all anywhere in the system. And the people who were on it didn’t really have much side effects. So we met up with my oncologist here now locally and started to get on Opdivo. So that’s once every two weeks an IV infusion. So now this is the fall of 2018. So my first set of repeat scans in January now of 2019. It was very mixed. It’s like the masses around the liver had all decreased or disappeared. But now there was all these new lymph nodes everywhere and it was very concerning to my oncology cuz he thought, you know, there was just this, this spread of the cancer and to the lymph everywhere else.

(21:44):

But my wife and I, there was this little thought in the back of our head, like, shouldn’t this be what should be happening to your immune system if you’re like revving up your immune system to go fight this, this cancer everywhere, you’ll see that in in, in the lymph system. We looked around and, and there was this phenomenon that we read, it’s called Pseudoprogression where, you know, at, at first it does look like that, it does look like everything is is getting worse. But then if you continue on, everything’s gets better. So my local oncologist had, had suggested that we switched from the Opdivo to Cabo. Okay. But I had a friend in Canada and she’s like my, now I think back, she’s like my angel. She, she, for four years while I was on the avatar trial, she started after me and she would always get her scan a week after I get my scans.

(22:37):

So every time I posted to the group that I had stable scans, good results, it would give her so much hope knowing that her scans was coming up the week after mine that she could do the same thing. And for four years we were like that. And then, um, she had more side of it and she had stopped before me and then she got on the Opdivo before me. And the Opdivo like was amazing for her. It it, it cured her, it made her to, to the point where she was no evidence of disease and she in her heart thought that it would be due the same for me because our reaction to the treatments was so similar throughout this whole ordeal that she was always like pushing for it. Like, stay on it, it’s gonna work for you. I, I know it. I can just feel it, feel it, feel it.

(23:21):

Like don’t give up on it, don’t stop it. Just keep going. And so we really didn’t wanna stop. So I reached out to my original, uh, medical oncologist in Fox Chase just to say, Hey, you know, this is what we were, this is the treatment we were on. This is the follow scan. What do you think? Could it be pseudoprogression? Should we give it more time? Should we try? She’s got an appointment with me. And this was like February of 2019 now we um, got some PET scans, some more follow scans, and she came in with like this huge grin on her face and she said, I don’t even think this is suitable ion, you know, the, when she’s treating people with Optivo at her place in fluctuation, they don’t even get PET scans. Mm-hmm. Because all of these little areas that light up could be just like, it just gives them false readings.

(24:09):

Right? So they don’t follow, just get MRIs and just follow the actual like masses itself. Yes. And she said if you just look at the masses, the liver, the little area, they decrease or disappear. So she thinks, you know, you’re getting a good response from it. It’s not even pseudoprogression like, and you know, you’re feeling good on it. All of the side effects that I had on the avatar disappeared. I was feeling great and not to you. I had all this energy back, my skin looked great, hair came back, like everything. Like it was amazing. And so she said, you need to stick on it, stay on it and, and I think it’s gonna work for you. So I, I went back to my local oncologist and we agreed. We said, all right, let’s stay on it. Get another set of scans in 12 weeks and you know, if something showed worse then we’ll talk about switching to Cabo, but let’s give it a little bit more time.

(24:58):

And then on the follow up scan. Now this was, I guess April of 2019 was great. I mean all this lymph node disappeared. The masses like bear was barely there anymore. Everything looked like it was supposed to work. Thank God. So, and like I said, now it’s feeling great enough, TiVo, no issues, no autoimmune side effects, nothing, no problems. And then in July of 2019 was the first set of scans where I showed, there was like no evidence of disease. Like it got me to that point that like everything was gone. I mean it was amazing. It was such an amazing, amazing time. That

Dr. Deborah Bach (25:35):

Is amazing.

Alex Dinh (25:36):

And and it’s been like that since July now of 2019. So we’re all, we’re going on two years now, two and a half years. And

Dr. Deborah Bach (25:43):

You’re still on the Opdivo, right?

Alex Dinh (25:44):

So that’s the thing, I’m still on the Opdivo because we keep talking with my oncologist and it’s such a new treatment for kidney cancer that there’s no, um, no data, no endpoint. And I wasn’t in any rush to stop because I had no side effects. I had no, I mean, yeah, if I was ha feeling bad or something, maybe I’ll stop. But I was feeling great. I was working full-time, we didn’t wanna mess with it. And I’m still on and it’s such a great blessing that I could get the drug right next door to where I work. So every two weeks I run over there, all the people over there know me. It’s like Jiffy Lube. Like I go in <laugh>, I get my iv, I get this infusion for 30 minutes and I’m out of there in like 45 minutes. It’s great. So

Dr. Deborah Bach (26:31):

I have never heard cancer treatment compared to Jiffy Lube before. That is such a funny analogy. You know, you just come in, get your little like tune up and on your way

Alex Dinh (26:44):

And then you’re on your way. You’re good to go for the next 3000 miles or whatever. <laugh>. And I’ve been doing that, I’ve been doing that every two weeks now for this Opdivo for two years. You know, God willing, every, every scan so far still shows no evidence of disease and no signs of when to stop. So yeah, I don’t, I dunno when we’re gonna, what we’re gonna do, but for now, I may just got my infusion yesterday. <laugh> Yeah. Every, every two weeks go over and get in.

Dr. Deborah Bach (27:12):

I have to say, as a, as a medical person, I agree with you, I’d be afraid to stop. Yeah. You know, I mean because what are the odds that every single cell is gone? Exactly. Yeah. I don’t think I would have faith that it had killed off every single cell. I think I’d be afraid to roll the dice

Alex Dinh (27:31):

And like I said, with no side effects, no need to stop right now. Right.

Dr. Deborah Bach (27:35):

So for sure. So you said there was another part of this that you wanted to touch on as well?

Alex Dinh (27:41):

Yeah. So that was, that was all of the medical stuff, you know, mean, the, the, the surgery, the treatments, the, everything like that. But throughout this whole journeys that we’re like, you know, going on almost this November, it’ll be 10 years now since I was diagnosed.

Dr. Deborah Bach (27:55):

So amazing. I mean

Alex Dinh (27:56):

This whole journey, it opened up my whole other side of me to prayer and faith and, and support and stuff like that. I mean, I was born in Vietnam. Okay. And my parents, um, are um, are Buddhist, but they weren’t like, you know, they didn’t go to the temple every day or anything. But when we were, um, sponsored here to come to America after escaping from Vietnam, um, as an immigrant, we were sponsored by a Methodist church. So I was seven when I came to America. So I grew up Methodist. I was baptized, I went to church. And then when I met my wife in med school, I started to go to mass with her cuz she’s Catholic. I just tell people I’m methodic, <laugh>, <laugh>. Cause I have all three. I didn’t know what I was, I started going to masses with her. So after we got married I decided to convert.

(28:47):

So went through the whole thing and then, uh, I became Catholic once I got this diagnosis. That was the other really important part. I, I prayed a lot, went to a ton of healing masses cuz I had all this support system at church. There was these two, again, these are my other guardian angels. They, they were always, they were reaching out to, they heard about this amazing healing or that amazing healing. There was this priest who had this special touch or whatever, and they would drag me to this priest and he would pray over me. And, um, there was this other healing mass with this relic from Padre Pio who’s known to heal people during his time when he, so we would go drive down to South J, wherever and so that we could touch that relic and um, and like all these, whatever it took. At one point I even went on like a little pilgrimage. I went to Portugal and went to Fatima and prayed there. And, and I really believe like throughout all this stuff that the prayers helped and the prayers got me to the right place and, and moving forward because there was, like I said, there was so many ups and downs, there was so many, like everything looked great. And then, oh my God, everything is back. Like it’s worse again.

Dr. Deborah Bach (30:02):

It’s, it’s like the, the high of the highest of highs and the lowest of lows in your, all the time in your journey up and down all the time. Up and down time.

Alex Dinh (30:10):

You know, the other thing we decided when I was going through my journey was we, we wanted to travel all the time. So whenever I felt good, whenever I was on day, like a week off, didn’t matter. Um, where, but we were going somewhere. We were gonna, we would travel to the Caribbean, to Hawaii, whatever, because we just didn’t know. You just didn’t know, like when was the last time you could travel. So you wanted to soak up all this experience and travel with the kids and, and enjoyed life while you could and, and looking back, like I said, I mean it was, it was hard, but we had a lot of good experiences from it too, you know? Sure. A lot of wonderful memories from it too. I

Dr. Deborah Bach (30:53):

Think you lived your life a lot more intentionally because of this diagnosis mm-hmm. <affirmative> than you might have otherwise. Because, you know, I know it was a physician in your thirties with little children. So many of us just end up sort of slogging through mm-hmm. <affirmative>, you know, just trying to just go to work, get to work, get home, take care of the kids, you know, veg on the couch with some mindless tv.

Alex Dinh (31:23):

Exactly. And you know, obviously we, I still do that obviously, but you, you also appreciate that moment, that time when you could enjoy, uh, uh, enjoy what life has to offer.

Dr. Deborah Bach (31:35):

Right.

Alex Dinh (31:36):

The beauty of other, other, other stuff. Not just your daily routines.

Dr. Deborah Bach (31:40):

Right. One of the things I think is so interesting in your story is that you’ve really managed to merge the two ends of the spectrum. So you have taken the most aggressive medical approach mm-hmm. <affirmative> and sort of the most aggressive religious approach. Yeah. And so many people I think stray one way or the other and don’t have both. And I think that maybe that’s one of the things that has made your your care so successful.

Alex Dinh (32:11):

Yeah. It doesn’t have to be exclusive. I think it’s very powerful together. You can’t just say, I’m gonna just depend on my faith and ignore science or medicine. Right. Help you. But it, it is faith and, and healing and pr and, and prayers are very powerful too. So you need to have a balance to get some kind of support system out there. Whether, you know, something else other than just going to get medicine is so important because while you’re going the treatment, it’s rough. It is really, you know, side definitely effects and, and, and, and healing from surgery and everything. It’s, it’s a long haul. It’s a long road. So having that other, um, system that you can turn to, to help you get through it is so important. Very important.

Dr. Deborah Bach (32:56):

So one of the things that I have always sort of thought when I thought about you over the years is that in the grand scheme of things, everything happened at the best possible time that it could have is if your cancer had been diagnosed five years before when some of these targeted treatments weren’t yet available, it would’ve been a very different story.

Alex Dinh (33:24):

Yeah, definitely. I mean, I agree with you. It’s everything looking back happened at the right way. It was, I mean, even getting diagnosed with the cancer happened just like it’s supposed to. I mean, if, if I’d never gotten the ultrasound or if I waited until I got symptoms, it might have been too late. Right. Or, or if I had gotten the ultrasound even a little earlier, maybe it didn’t show the mass yet because the mask grew so, so aggressively. Yeah. And then we’d have to wait a year following, you know, to get the next ultrasound. So that, and then the, the avatar trial being available when it was, that kept me stable for so long because when I started the avatar trial, like you said this, this, uh, targeted immunotherapy, uh, or the immunotherapy stuff wasn’t even on the radar. I’ve never even heard of it before.

(34:09):

Right. But five years after I was on the avatar trial, that’s when they started getting success. So everything happened like, just amazingly, uh, according to the whatever, you know, plan that it was supposed to, that led me down to this, this, this right path. And, and, um, I have some friends now, uh, at work who, who have also been diagnosed with cancer and they’re going through treatments and I, you know, I keep telling them every day that you just gotta plug along because you don’t know what is out there next year or the following year that could

Dr. Deborah Bach (34:44):

One day you gotta hang in there as long as you can because you knows when that amazing breakthrough is gonna come. Mm-hmm. <affirmative> that’s gonna,

Alex Dinh (34:51):

And all you need is turn things around. We need is one thing that works. Right. That’s it. Just one thing.

Dr. Deborah Bach (34:58):

Yeah. So,

Alex Dinh (34:59):

And you don’t know what, so

Dr. Deborah Bach (35:00):

Do you have any words of advice for people who are sort of starting out in this arena?

Alex Dinh (35:07):

Um, I would say just, it’s, it’s gonna be highs and lows. That you’re gonna have very good moments and bad moves and it’s gonna be rough, but plug along, keep going, keep going. Um, don’t give up. You try one treatment. Maybe you get some good success for a little bit and doesn’t look good. Look for another form of treatment because you don’t know, like I said, if this treatment is the one that’s gonna cure you, or this treatment is the one that will buy you some time for another year where another treatment might come up, um, that, that will cure you. So don’t get discouraged. Just, just keep plugging along and then be your own self-advocate. Like, don’t just sit back and accept everything that comes at you. Do your own research. Look into it. Kind of like what happened with my opto treatment. Like if we had switched from it after that first set of scans, I mean, oh my gosh.

(36:06):

Right? Yeah. So you, you do your own research. You, you question, you ask, you know, uh, go get another opinion. What do you think about this? What do you think about that? Like, like be your own self-advocate. Right. And, and, and, and get yourself to, you know, to, to the point where you’re comfortable with whatever it is that you decide, whatever it is you end up doing. And don’t give up. Uh, surround yourself with people who love you and support you. And you have to just take one step and keep going and keep going every day and enjoy your life around you while you’re doing this, while you’re, while you’re going through this hard time.

Dr. Deborah Bach (36:44):

Ugh. So, so good. Such good advice. I love it. Well, thank you so much for being here with us today and sharing your story. You are such an inspiration to me and it was so nice to get to see your face.

Alex Dinh (36:58):

Uh, thank you so much for having me on here. I mean, I, I, it’s been a while since I’ve seen you and I’m, I’m very happy for you that you got this, this new endeavor and I’m sure it’s gonna help so many people. You know what you’re doing. So continue what you’re doing.

Dr. Deborah Bach (37:12):

Thank you. Thanks for listening to Best Life After Cancer. Did you know you can get more information on my website? Best life after cancer.com. There is also a Facebook page, best Life After Cancer MD where there is a group just for survivors. Here you are able to interact with me, ask questions, and get more help. I’d love to see you there. Have a great week and I’ll speak with you soon.

 

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