AcroTales
AcroTales
Episode 23 - Jeremie
In Episode 23 of AcroTales we meet Jeremie from the Philippines.
Jeremie's story is one of challenges, resilience and hope. Diagnosed with a tumour at just 19 years old - and right in the middle of Covid - he explains his journey to diagnosis, the treatments he received and how - through strength and adversity - he is taking ownership of his condition and is now a leading advocate for Acromegaly in the Philippines.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And in each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. It's episode 23, and I am very pleased to welcome Jeremy from the Philippines. And Jeremy was diagnosed in 2021 at the age of only 23. Jeremy, welcome to AcroTales.
SPEAKER_00:Hi Dan. It's my pleasure to be here with you today. Again, my name is Jeremy, but just a clarification, I am now 23, but I was diagnosed when I was 19 years old.
SPEAKER_01:Oh, apologies, I got it wrong. You were 19 years old. Right, there you go. There's my first mistake of the day. Welcome to AcroTales. So at a very young age to be diagnosed, just tell us your story about how you reached your diagnosis. What were the signs? How did you end up finding out you had acromegaly?
SPEAKER_00:Um, at first, of course, um I'm really confused. I don't know what to do, I don't know how to feel. So it's like um a mixed emotion when when I um first heard the word acromegaly. I don't know what it means. I don't know um what to feel at that very moment when the doctor told me that, oh boy, you have acromegaly. And I asked the doctor, oh, um, what does that mean? What is that um disease? And the doctor said that, oh, because of your um large hands, large um feet, because of your um facial features, your jaw, and um because of your tall height. Because you're in the Philippines, where you are um 5'10, you're already tall, and um at my young age I was like six six feet tall. And it's it's it's it's really um not normal here in the Philippines because um it's like um genetic, or it's either you have a condition which is either gigantism or acronymally. So my symptoms started um during the pandemic, it was 2020. So I passed out during a family gathering, and they they they're all shocked. So after checking my vital science, it looks um it looks like my sugar went down, so I experienced hypoglycemia.
SPEAKER_01:Okay.
SPEAKER_00:So that that was the first symptom that I experienced. After that, I just disregarded um all of this because um the second symptom, so that was 2020, and then this the next um symptom started to show up in 2021. Um it's like September 2021. Um, the first symptom showed up like March of 2020, and then the second symptom showed up in um September 2021. In that specific moment, it was not hypoglycemia, but it's the other side. It's hyperglycemia. So I was rushed into the hospital because my blood glucose went up like 606.
SPEAKER_01:Okay.
SPEAKER_00:And um the doctor said, Oh, it's really high. The glucometer wasn't even able to read read the the glucose in my blood. So it's only say HI, which means high. Okay. Because when it's low, it's it's L O, which means low.
SPEAKER_02:Yeah.
SPEAKER_00:So at that specific moment, the doctor said, Oh, you need to be confined, you need to be admitted in the hospital so that we will be able to manage the glucose in your blood. So I stayed in the hospital alone because that was during the pandemic time. So no um companions are allowed. So my my diagnosis at that point was only type 2 diabetes or um hyperglycemia. There are no other um diagnoses yet, but just um that being hyperglycemic. So um the doctor um admitted me in the hospital for about three weeks up until they were able to manage the blood glucose in my in my blood, and then um, of course, there are a few, a lot, not few, but a lot of tests that that was done to me. So um it includes um city scan um and a lot a lot of blood tests. Upon the result of the city scan, it was found that there is a pituitary adenoma. So imagine then I was alone in the hospital with the doctor when he told me that I have this brain tumor, it's um pituitary tumor, whatever. I was all alone and at the age of 19. Yeah, that's it. I don't know what to do. Exactly. And you know, I am also alone in that room. I am alone in that room with the doctor. So when when when the doctor was reading the result, it was like I'm just looking at him in his eyes, and I don't know. I I I want to cry, I want to laugh, I don't know what to feel.
SPEAKER_01:So were they were they did they help you emotionally through that, knowing that you were on your own and you were so young? Or do you feel that it is very clinical and medical?
SPEAKER_00:The doctor, the doctor will will will help you ease the emotion that it's alright, you just need to undergo some surgery or some medication like that. But you know, being alone at that specific moment really, really breaks my heart. It's really, you know, it's really challenging on my part. And then once the doctor left the room, I called my family, called my relatives, and told them that oh, I diagnosed with this type of brain tumor, and um, you know, then my family is was um there to support me. They were um they were um giving me motivation because you know I'm all alone anytime I I can pass out again because um of what I've heard from the doctor, yeah. And from that moment, the doctor which announced the result, he told me that oh, I I recognized that your feet, your hands are are large, enlarged rather, and your jaws are you know, it looks like you have um the doctor said that he suspects some condition which I might have. And from that moment, the doctor said that once you discharge from this hospital, I want you to run some diagnostic procedures just to confirm what's in my mind. So from that moment the doctor suspected that I might have acromenoid, and that doctor is not an endocrinologist nor a neurosurgeon, he is just a general practitioner doctor.
SPEAKER_01:Wow.
SPEAKER_00:And um from that moment I I um I was discharged afterwards, and then um I I I run those specific um diagnostic procedures which the doctor ordered me to do, so and um these procedures are the insulin growth factor one, um IgF one, the um OGTT, oral glucose tolerance test, and of course, one of the most important is the growth hormones. Those three are um the primary tests which I am ordered to do. And upon the result of those tests, um the doctor ruled out that I truly have acromancle because my levels are truly high. It's really high. You know, my growth hormones prior surgery it was like 47, and the normal range here um is below one. My um my my IGF one is more than 600 plus, and um the the um some levels, hormone levels, are also abnormal during the time. So um from that moment I was diagnosed at an earlier stage of acro-necaly.
SPEAKER_01:Yes, they got it.
SPEAKER_00:And um exactly. That's why I'm also an advocate of early diagnosis of acrionectoly because I believe that nowadays there are still a lot of acriomegalo patients out there that are misdiagnosed or still undiagnosed due to um a lot of reasons, you know. Um, and I'm really thankful that my doctors were able to diagnose me at an earlier stage of 19. And from from that moment, um, it was followed by an MRI. So from the CD scan, when I was admitted, and then once I was discharged, I then again had an MRI procedure. And from that, um it was found out that it it it is not just a simple adenoma, but it was a pituitary macro adenoma. Okay, because it was like three centimeters big.
SPEAKER_01:That's quite big.
SPEAKER_00:Yeah, it's like um a coffee bean, or yeah, I I I I'm not sure what how big it is, but yeah, it's like three centimeters. And the doctor said, Oh, um, Jeremy, you need to undergo surgery as soon as possible because um the tumor is extending in your optic diasm. Okay, and that was um one of the symptoms back then that I am not aware of because I had this um blurry visions when I was in high school. So maybe that was the time that um it was already in there, but it was great, it was developing exactly just to just to go back a step if you wouldn't mind.
SPEAKER_01:What were the did you notice anything as you were growing up before you were diagnosed that that made you think, ah, something's not right? Or I I you know, I've you know, because I think all acromegalics sense that something is wrong, but of course they don't know it's acromegaly. So uh apart from the vision, was there anything else for you that was a a sign that something was not right?
SPEAKER_00:You know, Dan, um I myself wasn't able to recognize anything, but my friends, my peers, are the ones who always um telling me, Oh Jeremy, I noticed some changes in you. It's like um one of my friends used to um told me that my my knees are are like you know there's something in my knees, and that I'm not really um I'm just disregarding all what what they say.
SPEAKER_02:Yeah.
SPEAKER_00:But um, I always told them that no, I'm healthy, I'm good, I I don't feel anything else, um, I'm healthy, and yeah. Not until I I um I experienced the symptoms, especially the the um the sugar levels. That that was just the first symptom that really you know that topped my shoulder of oh you need to um check there's something wrong. It's like um there's something um there's something that you need to to check. And um I guess um that was just my vision back then. So I also had the peripheral um test. Yeah, I guess it was the visual perimetry test. Um exactly, the perimetry test because of my peripheral vision, yeah. And I guess um it was somehow also affected by the tumor. And um, upon the result of the MRI, it was like September of 2021. October, we October 2021, we um finished all the procedures, and I scheduled the um my family scheduled my surgery for me on um November.
SPEAKER_02:Okay.
SPEAKER_00:Um by that moment I was supposed to schedule my surgery in November 1st, 2021. And you know, then it's it's um I have this short story about this schedule of my surgery because you know November 1st is All Saints Day. And the doctor said, I don't want to to perform the surgery on All Saints Day. We might schedule, we might give you a new schedule, the doctor said, and then I asked him, when it when is it then? The doctor said it is November 2. Oh, I said, because November 2 is All Souls Day. Does it mean that I will be joining All Souls Day? And the doctor left. Because you know, here in the Philippines, it is um very superstitious. Okay, because um November 2nd is All Souls Day, and I I told the doctor, are you sure, doctor, that I will be scheduled for surgery on November 2nd? And it is all Souls Day, I might be joining them soon. And then the doctor said, Uh-huh. The the doctor said that um the doctor said, no, we need to do the surgery. And um 5 a.m. in the morning of November 2nd, I was brought to the operating room, to the surgery room. You know, then one of the one of the unforgettable moments for me is that when they put the the tube for me to breathe, um some patients, or most of the patients rather, are being put in anesthesia, right? They are being sedated. But in my case, I was not sedated. I am I am um I am punched when they put the tube.
SPEAKER_01:Really? Right, okay. Wow.
SPEAKER_00:Uh-huh. I can feel the tube going down on my throat, on my airway. So um, but right after I felt the tube here in my um in my throat, I I I am I'm felt asleep.
SPEAKER_01:Yeah. Microsoft.
SPEAKER_00:Exactly. And um the the next moment I wake up is that I am already in the recovery room. And I have this a lot of apparatus in my all over my body from head to toe, you know? I have this um oxygen, the um the for the nerves or for my my fingertips are um has something in it, my toes. It's like for the vital signs.
SPEAKER_02:Yeah.
SPEAKER_00:And at the at the same day, um, I was brought to the to the ward where I was um confined. So the the the nurses brought me back to my room, and my parents are waiting for me. Oh wow because um I'm with my mot my mom and dad when I had my surgery, and um they really hugged me when when when they um they saw me that the surgery was successful and I'm alive. I I I was not um I did not join all Souls Day on November 2nd. But um, by the way, November 1st is um November 1st is like um I remember, I just remembered. November 1st is Acromegaly Awareness. Yes, right? Exactly. So um it's it's really something special for me.
SPEAKER_01:Yeah, no, I totally I totally I totally get that. And yeah, that's uh you know, if you're gonna have your surgery done, have it done on Acromegaly Awareness Day or, you know, around about that time.
SPEAKER_00:I I wasn't thinking about that. I was thinking about the old souls day.
SPEAKER_01:Can I ask, were you scared going into surgery? Or were you looking forward to it and getting rid of this thing?
SPEAKER_00:Um, you know, that at first, of course, um I'm scared. But um at the back of my head, I I said, I need to deal with this, I need to face this. Because um a lot of people are um motivating me, and um they said, you're still young, you can endure this surgery. Yeah, you can pass you can pass through it, and I know that um I guess it's also a matter of faith that you will be healed, that you will be um that you will be going to be okay again. And because of that, um, you know, there it's only a short span of preparation from my diagnosis in September 2021 and then October 2021 are the procedures and November 2021.
SPEAKER_02:I had my surgery.
SPEAKER_00:It's it's it's really um if you will go into observe the the time time map, you it's really um you know fast-paced. But um after the surgery, I thought it will be the start of a healthier life, of a healthier, um of a healthier teenage of mine. But you know, um I'm wrong because uh right after we were discharged from the hospital, every month, November, it's like end week of November 2021, I was brought again to the hospital due to um due to hormonal imbalances and due to hyperglycemia again. This time it's not just a simple hyperglycemia, but I was being um I was experiencing DKA. Are you familiar with DKA? It's diabetes ketoacidosis. Okay, okay. It's um due to excessive um excessive acid in your blood. And um it was deadly. I can say I thought that was my final bug in this world. Exactly. It's it's it's really um horrible.
SPEAKER_01:Okay.
SPEAKER_00:Because at that moment um I was I was um I was given oxygen because I was um having difficulty of breathing. It's maybe because my blood is um full of acid, and the doctor said you're lucky to be alive. Because um patients experiencing those type of um attacks are already on a diabetic coma. They are being comatose because of super high blood glucose. But in my in my case, I was um still alive and I was able to tolerate how how high that um blood glucose is.
SPEAKER_01:So um and did I did they did they remove all of the tumor or get most of it, or was there any residual leftover?
SPEAKER_00:Good question, Dan. Of course, um because the tumor is extending to the optic gyasm, and some of it are um connected as well into the carotid artery, they wasn't able to remove all or most of the tumor itself. But the doctors said that um they were able to remove um what can be removed, and there are just some uh tumor that was um, you know, it's really attached to the carotid artery, and if they will be removing it, there is a high chance that you know they can they can um damage some of the nerves or maybe there can be an excessive bleeding if the carotid artery was cut, and because it is directly connected to the heart, so the doctor will not um you know no, they won't touch it.
SPEAKER_01:So, did that mean then radiation or um medication? Was there a a plan for that?
SPEAKER_00:Okay, so um on January 2022, I had my MRI to check the tumor, so we found out that um it's really not removed at all. I mean the doctor was wasn't able to remove the tumor. So um my neurosurgeon recommended um to undergo like gamma knife surgery or radiation therapy. So um the doctor gave me um choices to um to what will be the next step I will be um taking. So my family my family and I decided to undergo radiation therapy. So um from that moment, it was January of 2022, I scheduled my radiation therapy from February 2022. So I started my radiation on February 2022 and I completed 29 sessions of EBRT or external beam radiation therapy. So um from that moment um I was able to complete, but you know, then it's not um that's complete straightway because in between of the radiation therapy um I was then again hospitalized because my my body my body can take all the medicines or maybe effects of the radiation, so I was then again hospitalized for three weeks, and because of that, I need to stop going to the hospital for the radiation treatment. And my my oncologist said that you first need to um manage your blood sugar and your hormones before going back to radiation. So um after I was discharged from being hospitalized, it's like in March of 2022. So um I was able to finish my radiation in April 2022. So I started in February and I finished in April.
SPEAKER_01:That is a long session. Yeah. And did it make a difference? Was it worth it?
SPEAKER_00:It's worth it then. You know why? Because after a few months or maybe after a year of finishing or completing the radiation therapy, all my hormones went back to normal.
SPEAKER_01:Wow.
SPEAKER_00:You know, um, I was really amazed, I was really shocked, and I was really hopeful that I will be in remission in the future. You know, um my growth hormones before or prior surgery and radiation, it was like 47. But after the after the um the radiation therapy and the surgery, it was only two.
SPEAKER_01:Wow, that's amazing. And just just for anybody that's listening in that maybe has to have radiation treatment, is it painful? Is it uncomfortable? Is it scary? What's what's the experience like?
SPEAKER_00:In my experience then, um, I I didn't experience anything, you know, um, that's odd. But it's like I feel so um hot. Not that uh not that hot, but you know, it's really um you know, I feel all over my body, I can feel the radiation. It's like just I feel really hot um in my surroundings, and um radiation only takes place like 15 minutes when you are already in the machine. So the machine you will just hear some sounds, some noise, and it's the machine that's working on its own to um give you the radiation therapy. And um, you know, af each after session, um, I just want to drink a lot of water, I just want to eat, I just want to take some rest because each radiation session is really draining. It will truly drain your energy, it will truly, you know, it's it's really tiring. And you know, from those months, from February to April, that is what I exactly did on that year, 2022. And um, luckily I was able to finish my radiation therapy with the help of my doctors, my family, and my friends, for all the support that um I received from my loved ones, I was able to um to finish my radiation treatment. And you know, um like what I said after the radiation, it really gave me hope because my hormones went back to normal. You know, my IGF 1, aside from the growth hormones, my IGF 1 from about 600, it went down to 300 plus, and it is from the normal range of IGF 1 since I was diagnosed. And from that, amazing um also some of the hormones which is associated with my um acromagolike the um the what do you call that? The thyroid hormones. Uh-huh.
SPEAKER_01:Oh yes, yeah.
SPEAKER_00:And um some other hormones that is important for our um body, in our body. And you know, it's it's really amazing that um I I was able to finish my radiation. And um now, because um, so from 2022, 2023, um, I didn't have anything, but just a bit of normality. Exactly. It's it's all normal. At that, um, from 2023 and up until 2024, I feel good. I feel really great. You know, um, for me that was that was the um normal years of my acrobagal injury.
SPEAKER_01:You're allowed that. You should you should be entitled to have that because you know, having this at such a young age and having to go through it for three, four intense years, you know, to be fair, most people get no, it's not necessarily a lot of people get diagnosed, have their treatment, and life is sort of generally stable. There may be some complications, but it sounds like yours was quite a journey and and quite a complicated one as well.
SPEAKER_00:Exactly. And you know what I did because 2023 was my 21st birthday, um, my family gifted me a trip to Singapore. So I went to Singapore all alone just to uh see the beauty of Singapore and uh just to celebrate my 21st birthday and celebrate some small wins that I've already um conquered in the past few years since I was diagnosed with acromancula. And you know that um just last year, 2024, my doctor recommended me to um take um cabergoline. It's um it's a medication to also help suppress the size of the um the tumor in in some cases and um it also helped to manage IgF 1. Because you know that one of the problems that we're currently facing here in the Philippines, acromegal patients are facing here in our country is that we don't have access to um to acromegal medications, we don't have access to you know a lot of health care um to a better healthcare system like in the US yeah and um yeah yeah if you if you would like to buy medicines you will need to order them abroad like in um nearby countries in India and Korea Japan or whatsoever country where the medicine is available and um because of that my doctor said that whatever is um convenient so um he asked me to take kabergalin and um I'm taking it twice a week um since last year and just recently we found out that my IgF1 was then again um increasing it's again spiking you know it's it's it's um spiking and I was really shocked because it was higher than my prior diagnosis it was like 700 plus and you know my my my IGF1 levels before surgery and radiation is 600 plus and now it's it's 700 and I'm sure it's because of the Cabergoline that I'm currently taking. So um okay I I still have my appointment in the few weeks with my doctor and we need to check my IGF1 levels if it went down it went high or it's still the same and um for now um I'm still taking the Cabergoline for um IGF1 it was supposed to I know that it it it's supposed to to lower the IGF 1 right not to to um to increase the IGF 1 level and um because it is one of the only medicines that I can avail for now because all of those injectables medication in the US it's not available here in the Philippines. Okay okay so um that is what I currently take and um still taking as of the moment and you know because of my my um journey in acromegaly I I truly found my purpose in in this um journey because um when I was diagnosed in 2021 I was all alone I thought I was alone not until I found the the group of Jill Cisco the Acromagalic Community US where I joined the group and um I was accepted um I I researched about acromegalic by myself alone because I was really curious what acromegalic really is so when I found out the the symptoms and it's like I I I did some checklist and um oh okay blaria vision um the the enlargement of hands and feet the jaws the change in facial features all the symptoms are present in me and I guess um it it's truly acromedal and from then from um from being alone now we have our own organization here in the Philippines Acro Megaly Philippines which I started a few years ago after my diagnosis so now we're currently 23 in our group amazing we have 23 Filipino acromegali patients in our group and we are supported by um an endocrinologist and a neurosurgeon in our group because for me um acromegaly is um is is um a journey and you need to be alone in this journey you have your family you have your friends and you have um the people around you which will support you which will give you support because for me one of the challenges in being diagnosed with acromegaly is emotional and psychological um problems first of all is the acceptance because we all know that being diagnosed with acromegaly has something to do with our physical appearance especially if you if your levels are high sometimes um I can hear that we are being related or compared to the cartoon character Shrek are you familiar with Shrek so um exactly we are being compared to Shrek but sometimes I I can truly um see some similarity with the the image of Shrek but you know you do know you do know Shrek is based on a French wrestler oh Maurice Tillé I guess that's you had Acromegaly. What what's the name again of that wrestler?
SPEAKER_01:Maurice Tilley and he he had Acromegaly. So that's why we are being related to Shrek yeah yeah yeah yeah and um I think it's great that Shrek one of our heroes has got a rare condition you know I I you know the general public won't ever think about that but for those of us who know I think it's a really heartwarming idea and I'd love them to to explore that more and you know celebrate it but you know it probably won't sell many tickets at the cinema exactly and you know um one of the crucial things um for us acromed patients in dealing with this disease is acceptance you know that it's one of the one of the um one of the hardest things that we need to conquer because first of all we need to accept ourselves we need to accept that we have this condition that we are diagnosed with this condition and when we were able to accept ourselves then we will have um a meaningful and a happy life because the day that I accepted myself as an Acrimegaly patient I I became um more hopeful motivational and inspirational to other people especially my fellow Filipino Acromegali patient they truly um see me as one of the um image of um acromegali patient and I was I am really thankful about um that because um you know then the patients here in the Philippines I am the youngest one of our eldest patients is 70 plus years old and I want to know her secret of how to how to to reach age of 70 while being diagnosed with acromangal and um it's really important that um we deal with the emotional distress the psychological distress and the role of the family the the the peers the friends the relatives in battling this um disease and as like what I always say in my previous interview I see I don't see acriomegaly as an illness or sickness rather I see it as an opportunity an opportunity to become an opportunity to become an advocate an opportunity to promote awareness to the entire globe that we have this type of disease that we have this type of illness and it really does exist and it's called acrove it's it's really um existing yeah Jeremy Jeremy I think you know I'm I'm hugely impressed with your attitude and your and your approach to this I I very much sing from the same hymn sheet as you um you know it it's a challenge to live with this condition but you have to make the most of it and if you are in a in a position where you can help others and be an advocate then you know I it's it's almost like you were given this condition in order to then use it to help other people. It has to be remembered that not everybody can see the condition like that. And for some it's you know a challenge and uh and a horrible experience and they don't want to talk about it and they and they don't want to celebrate it in inverted commas. But there are a handful of us and there needs to be otherwise everyone would be in a very depressed state there are a handful of us that really are able to make the most of it and to champion it and to help other people and you're definitely one of those Jeremy and it's been absolutely fascinating talking to you today uh and and hearing your story and and hearing how you've come through it. I'll ask you just one more question and then we'll and then we'll finish um if you were to give advice to somebody who's just been diagnosed with the condition uh what would you say to them? Of course um to those acromegaly patients which are just recently diagnosed and um currently battling with this um disease um with acromegaly I would um say that first thing is acceptance I know it's really hard to accept this um this disease but acceptance is a key to happiness if you accept yourself with um this disease that is the start of being becoming more happy and becoming more um hopeful for what life awaits and you know um it's really important that um you must always be ready to whatever um the world will um throw at you whatever the challenges await in the future you must be always ready to conquer and to face those challenges because acro megaly um will make you strong acromegali will teach you life lessons like what it did to me at this young age i i really learned a lot of life lessons experiences I met a lot of people um many friendships was built and of course the organization which I'm currently building here in the Philippines was built because of acromatically and maybe that's one of the reasons that's given you a purpose isn't it it's given you a purpose exactly maybe one of the reasons why I wasn't able to join all Souls Day is because of this there's a purpose why I I I I did not die at young age maybe this is the purpose that I need to fulfill this is um the purpose which I need to to um to make in this world and maybe someday it will just be our legacy Jeremy thank you so much as I said it's been absolutely fascinating talking to you good luck with your advocacy good luck with your Philippines group I I hate to say I don't want it to grow because we've got to I'm I'm sure it will grow and uh I'm I'm sure you'll do amazing things and and support people over there. And hopefully I'll see you at another um academically event uh around the world at some point uh but you're truly an inspiration and uh you speak very eloquently and very confidently about what was clearly a difficult period of your life so thank you so much for sharing your story.
SPEAKER_00:Thank you so much then also for your time and um I can remember our times during our conference back in Arizona last year.
SPEAKER_01:Yeah yeah yeah good good times although I was really ill but anyway let's not worry about that so look if you found Jeremy's story interesting and want to hear other AcroTales head over to acrotales.com where you can find the always expanding library of interviews and of course you can subscribe to the podcast to receive the latest updates you can do that on iTunes Spotify or wherever you get your podcasts Jeremy thank you so much once again and thank you everybody for listening and we'll see you next time for another acro