Category Archives: Mibg

Just because I have a terminal illness…

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, Mibg, Montreal, MUHC, net cancer, palliative, pheochromocytoma, PRRT, rare disease, Rare disease day, surviving cancer, Survivor, terminal illness by

Doesn’t mean I’m terminally ill, confused? I was too.

I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.

With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.

When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.

It didn’t have to be this way…

Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.

Just because I’m terminally ill doesn’t mean I have to die…

It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.

Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.

I’m still living, and should be treated that way.

Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.

It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.

Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.

It just looks and feels different than yours, but it’s still worth living.

When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.

Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment

Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.

Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.

It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.

Just because I’m terminally ill doesn’t mean I should have no dignity…

When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.

I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.

I consider myself someone who will eventually succumb to this disease, but not for a very long time.

I consider myself someone who’s fought hard and long enough to share this information with you all.

I consider myself someone who can help change the way terminal illness is perceived.

If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.

There IS a way to be stable.

Quality of life CAN be different.

You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.

Happy rare disease day my fellow warriors,

It’s been a hell of a ride.

Pheo VS Fabulous

I have news …

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, Mibg, Montreal, MRI, MUHC, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, World cancer day by

Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.

If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.

I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.

I would be heard.

For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.

Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.

We didn’t give up.

I have news …

 

Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.

It’s always bad news …

 

Not this time.

Today, for the first time since my diagnosis, I was told I was stable.

Stable …

There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.

I didn’t accept that, I fought. Hard.

Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?

Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.

It means hope...

I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.

Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.

If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.

Now I’m here.

It’s an amazing thing.

My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.

If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.

Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.

Never, ever, give up.

Hope is the hardest thing to have, but it’s worth it.

Pheo VS Fabulous 💖

Facebook & instagram: @pheovsfabulous

Beating the odds

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, birthday, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, Clinical trial, Endocrinology, Health, Mibg, Montreal, palliative, pheochromocytoma, PRRT, surviving cancer, terminal illness, young cancer by
  • Five years ago, October 10th, I was told I had 1-5 years to live.

I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”

It took me a long time to push past this, and focus on what’s important. Living

We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.

I’ll never forget anymore, what I’m fighting for.

I beat the odds, I am a miracle.

It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.

I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.

Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.

I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.

Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.

I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.

But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.

We have to take these small victories and celebrate them!

I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.

I’m here to tell you that I’m still fabulous, despite the odds.

Pheo VS Fabulous

A zebra can be a unicorn

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, health monitor, information, inspirational, Interview, Love, Mibg, Montreal, MRI, MUHC, net cancer, Octreotide, palliative, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, Survivor, Vlog, young cancer by

Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥

It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.

Such as, did I just type a sentence?

Or spell revelation without going into one of my “coma like states”?

Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!

Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️

Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …

I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous”

….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.

Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?

You’re telling me.

I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!

This isn’t Just MY disease anymore.

This can’t be happening.

This can’t be happening.

This can’t be happening.

This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.

But before I get into any of that..

I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.

It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.

I would never distance myself like this by choice.

So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.

Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.

Hope is something no one can take away from you. Not even cancer.

This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.

That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.

Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.

I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.

Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?

*insert laughter attempt here*

I thought I had enough as well.

WELL Apparently not.

This is what I’ve been getting at.

Some may be thinking, how come no one helped sooner?

WELCOME TO THE DANGERS OF BEING RARE

I have never been sent home so many times to die in my life.

That part was a little depressing.

One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..

…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩

Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.

If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.

Through my suffering I’ve been able to reach out into so many people’s hearts and lives:

Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.

Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.

https://youtu.be/9LJGcxTB4u0

I love all of you more than I could ever describe my beautiful zebra unicorns 🦄✨

Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates 💋

📸 @pheovsfabulous

THE Unicorn 🦄

I said I would never do that again 😭

Posted in adrenal cancer, adrenal insufficiency, Bone marrow, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, health monitor, Immunotherapy, information, inspirational, Love, malignant, Mibg, Montreal, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, young cancer, zebra by

But I learned something new again yesterday

these bodies we think are ours?

They’re not.

We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?

Cancer: you get to kill me.

Doctors: you get to save me by any means necessary

Me: I TECHNICALLY have a say… but…

Believe me, there is ALWAYS a but

If you start saying no to things, how can they save you by any means necessary?

Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:

your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for. 

Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

this is why. 

It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself.. because you know that you’re damned if you do and you’re damned if you don’t. 

Facetune

Part 1: 05/23/2017 – PRRT treatment prep

jugular insertion 

Facetune

But I’m tired now

Facetune

I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.

(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.

The treatment itself was a bit improved VS the last few times.

More on that later once I’m not so traumatized from the morning, and tired & in pain.

FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

more fun trial stuff soon, byeeeeee

#pheovsfabulous

4th..5th time? I’ve lost count! IS a charm 💛✨

Posted in adrenal cancer, adrenal insufficiency, advocate, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, Endocrinology, Health, health advice, health monitor, information, inspirational, Love, Mibg, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, the mighty, young cancer, zebra by

There are two things this disease has made me become an expert with:

learning how to be okay with never leaving your little comfy space (or rather being confined to it). 

or

constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable. 

Luckily I’ve acquired the most important lesson of my own, & that was to stay fabulous no matter what. Have YOU guys figured out the meaning of ‘Staying Fabulous’ yet?

This past year my health has declined significantly despite doing the most treatments packed into one time frame ever. 

With that said, my wardrobe mostly consists of comfy pyjamas, my hair is done by my husband (bless his heart). Speaking of hair, let’s be real… I can’t even wash my own hair, there I go again painting a whole different picture for you guys. I have care almost every day, and a lot of things I’m unable to do. Fabulous means SO many different things, but I still haven’t lost my fabulous, even if I’ve lost my ability to do all of these things by myself.

When I choose to do my makeup it takes me sometimes close to 5 hours or more, but I don’t mind because it’s every couple of months or so – and it makes me SO happy! Despite what I share in photos, we create a picture to make others happy as well.

What matters is the love, the laughter, the same outlook I’ve promised to have from the beginning hasn’t changed.

My message is being delivered with the same sparkle (most days)  ☺️✨ because that’s what PHEO VS FABULOUS is all about.

Regardless of everything that we have been going through to make it here, we’re here, and we feel just as grateful as ever.

When we were challenged, we leaned on each other for the support we so badly needed.

We felt so blessed for the support we constantly receive.

It isn’t in me to give up, the only thing to do now is move forward. To unfortunately just keep receiving another treatment and see what’s next.

What IS next you ask? 

Remember option 1 or 2? Well, today is # 2. Actually this week is a bit of both… except today is …

leaving the spot I’m most comfortable in. (You know, normally I’m confined to my house)

AND, this week is being confined to a space … but unfortunately not the space I’m most comfortable in, quite the opposite actually – I wouldn’t call the hospital or a radiation room my comfort zone. 🏥☠️

BUT that’s the life of being terminally ill 😷 treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! ✌🏼🏥👸🏻

After all that jazz I will be laying in the big spaceship scans later in the week… pretending I’m getting a facial in my Dream bungalow house in the trees that has NO stairs, one of those swim spa pools where my poor body can float all year round, and a little all year round sunroom for my puppies & me to relax when I’m feeling down  🏡 sounds wonderful right? My mind is escaping there already. 

Dreaming, dreaming, dreaming ✨✨✨

Ok, time to glow friends 👋🏽😄

Tuesday is the actual day for treatment, PS 🏥☢️ In case you guys forgot what treatment it is, it’s the PRRT clinical trial  – this will be my fourth round.

(Which also happens to be serge and my 7 year anniversary 😑, which also happens to somehow ALWAYS be spent in the hospital 😪😭)

Bye everybody!

🛣🚘

IMG_5823

Leaving today…

Posted in adrenal cancer, adrenal insufficiency, advocate, Bone marrow, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, Clinical trial, Endocrinology, Health, health advice, information, Mibg, MUHC, net cancer, nuclear medicine, Octreotide, pheo mets, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, young cancer, zebra by

Oh hey guys 👋🏼

You may have to do a slight refresher from my last post, but otherwise I’m going to keep it short. I will definitely go more in detail about what’s to come soon…

I’m just so exhausted and can barely keep my eyes open while I’m typing and covered in my favorite fuzzy blankets and every pink and purple unicorn pillow/stuffed animal I own

🦄✨💜

You guessed it…… LONG DISTANCE ROAD TRIP!

To where you ask? To do what you might be wondering? We will get to all of that!

First off, I’m kind of sorry and not sorry for dropping off the planet for a little while. Since I’ve started at home chemo that is EVERYDAY, twice a day, it’s a bit hard to want to then blog about cancer when you have very little left to give. What I did have left, I ended up having to use to prepare for the upcoming cancer CLINICAL TRIAL 👏🏼  Yes, that’s a whole lot of cancer. Which we will get more into when I have more time/energy. So you can see why I am sooooo sleepy 😴😷😪

Remember back when we discussed doing the first clinical trial? The very exclusive nuclear scan that was only being done on a limited group of people to see if their tumors would light up and be eligible for ANOTHER clinical trial?

Basically, it was a special scan to see if you could participate in another form of radiation type therapy. Well… Here’s a recap of everything.

So I did that, and passed the test! My tumors lit up, lots of them, so… That means I can have the special radiation called PRRT radiotherapy. (Similar to what I did back in January, the MIBG radiotherapy) but still different.

Don’t worry, I’ll be writing all about this when I’m not so depleted.

I just wanted everyone to know what was happening so far. This week has been very overwhelming, everything has been so last minute, we were informed of my acceptance within a few days of admittance, and all I can say is how grateful I am to not be a beginner at this whole treatment thing. This last minute…. We would be FREAKING out way more, but we’re veterans, so we’re only freaking out on the inside….. A little…. Ha

-This morning we left, today is a hours and hours full of travel where we will eventually make it to our hotel and check in, and spend our last night together  😰😝

– Tomorrow (Monday) I unfortunately get checked into the hospital, alone. A new unknown hospital….! 😳🏥

(I have to start getting prepped with special meds, since the treatment will make my pheo tumors angry. Hopefully by being admitted into the hospital and being prepped with special medications, this will lessen my chances of complications)

– Tuesday @ 7:30am I begin to get prepped for treatment ⚗☠

-Tuesday @ 9am treatment commence! 🎉✨☠

The rest of the week is unknown, I do know I will be less radioactive this time in comparison to last time’s treatment. Which means I shouldn’t be isolated as long.

That’s all for now.

Will share more about our previous trip to Quebec City to prep for the trial, acceptance, and WHAT IS PRRT?

Until then…

Stay fab

💖

image

So many images!

Posted in Brain, cancer, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, Endocrinology, Health, Mibg, Montreal, MRI, net cancer, nuclear medicine, pheochromocytoma, positivity, Radiation, rare disease, surviving cancer by

Now that my MIBG scan is over, thank goodness, I’m onto more conventional imaging now.

What are you doing on YOUR Saturday? I’m having my beautiful brains photographed, jealous?! 📸

That’s right, it’s MRI time!

Today will be my brain, because who doesn’t want to see inside this fabulous mind? 😉 Ha!

Tuesday will be back to the normal abdomen scan, to see the good old tumors we know and love, (wait, just kidding, we hate you!) multiple imaging types allows the medical team to compare each type of scan to one another and get different views of the tumors.

Example: MIBG relies on radioactive uptake in order to visualize the tumors, if my tumor cells do not absorb the radioactive iodine – there will not be a clear picture as to where my tumors are or where they have progressed.

MRI is a great scan for most people, but not all – not all pheochromocytomas clearly show up on conventional imaging such as MRI, or CT. Sometimes it’s done with contrast, sometimes it’s done without.

SO MANY OPTIONS!

So this is why we must do multiple types of scans, imaging types, and so on, in order to make sure we have a clear view of what we are working with – to see if there are any tumors hiding in spots we didn’t see before, spreading in other areas, and just maintaining a clear view so we can properly manage the disease with the best possible options.

After all… how can you control something if you’re not aware it’s there❔

So, a friendly reminder if you are a patient with metastatic disease: it is important to have a multi disciplinary team with a great endocrinologist who understands this complicated disease, and have everyone working at full throttle in order to help manage these little grenades. It is VERY quick to become out of control, we already don’t have a cure, so we need to do our best to work with ‘managing’ it, yes⁉️

I have been presenting with some pretty different symptoms in the past few weeks, so to be on the safe side – I must have my brain scanned to see if there’s anything in there 👀

Be on the lookout for part 2 of my MIBG scan breakdown, it was a particularly hard day for me and I have been too tired to post a proper detailed post to explain to my fellow pheo friends how an MIBG scan works, what to expect, etc 🤓

Alright, off to the scanner I go! ✌🏼️✨💋

Pheo VS Fabulous

image

MIBG & Iodine Allergy

Posted in adrenal cancer, adrenal insufficiency, advocate, cancer, cancer blogger, cancer scan, Cancer treatment, Chronic illness, Endocrinology, Health, health advice, information, Mibg, net cancer, nuclear medicine, pheochromocytoma, Radiation, rare disease, surviving cancer, terminal illness, young cancer by

You can kind of call me a pro scanner by now, I’ve only done like a thousand. (Okay, maybe not 1000, but A LOT)

My insides like taking pictures just as much as my outside.

It’s that time again, MIBG time! An MIBG is specifically designed to visualize certain types of neuroendocrine tumors like mine, pheochromocytoma being the focus of my discussion as this is the cancer I have.

As many of you know – MIBG is also used as a therapeutic agent as well, I just had my radioactive treatment in January, and this scan is just another segment of my follow up protocol before we dive into the next steps of my treatment.

For those of you who are about to have an MIBG scan and are wondering what it’s all about, I figured I would give you the deets! I even make it more fun and complicates as always as I have an allergy to iodine & contrast – so I’ll explain what the protocol is when this is the case.

MIBG Scan 

Alright pheo friends, your nuclear medical centre or cancer centre should call you and book a date for your injection, and then you will have your scan date booked anywhere from 2-3 days later.

Example:

Monday – Injection     Thursday – MIBG Scan

Why?

The MIBG product takes time to attach to the tumor cells.

BEFORE you go in for your injection they will need to send a prescription of thyroid blocker to your local pharmacy.

The protocol for the thyroid blocker varies depending on the type given, for example – because I have an allergy to iodine – I am given potassium perchlorate and so the timing and protocol differs for this product from Lugol’s iodine. Please refer to your doctor’s instruction when taking your thyroid blocker, but ALWAYS ensure you take your thyroid blocker before your scan!!!  

NO EXCEPTIONS! 

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Day 1: Go into receive your dose of radioactive “glow” as I like to call it, ha! We have to think positive now don’t we?  I have to start taking Benadryl early in the morning (around 6am) for a 10pm injection, and then continue taking 50mg doses every 6hours for 24-48hours. I have to stay and be monitored after receiving my injection for at least an hour and make sure I don’t have any initial reaction while at the hospital, and if I am okay, I can go home and continue with my allergy protocol.

You won’t be scanned on this day, just poked and injected with some good old radioactive mixtures, it will do it’s magic and hopefully find it’s way to your tumor cells… and then you will go back in 2-3 days (whenever your appt is) and complete your actual scanning portion!

(Edit- Question answered: This portion isn’t like a PET scan where you will spend at least an hour with a warm blanket in that beautiful reclining chair, it is a very quick injection of radioactive material, (in a comfy recliner though!) 😜

There is no fasting required for an MIBG scan, or injection, neither part 1 or 2 requires fasting protocol unless your doctor instructs otherwise, but out of the 5+ times, I have never.

There are SOME medications they may require you stop taking before your scan, the nuclear medicine team will discuss this with your endocrinologist, surgeon, oncologist, whoever ordered the scan for you. Some medications can interfere with the result of the scan, it can lead to false results as the test relies on norepinephrine uptake and some medications can interfere with this pathway. They will inform you if you need to or not.

I’m sure you can ask for a blanket if you’re cold, they’re always such sweethearts. The only “waiting period” is for when you have an allergy, they typically ask you to wait to be monitored, because my nuclear medicine team is amazing, I get a comfy stretcher and a warm blanket 😉 I hope this answers your questions Cathy!  💛

Tomorrow (or today rather, as I have to be up in a couple of hours to go…!) I will be doing part 2 of my MIBG scan, I will update you on the exciting details of the scanning portion.

If you have questions, leave them down below!

I forgot the most important part… don’t forget to smile, laugh, and stay fab!

❤

MIBG - Injection

Dear husband…

Posted in adrenal insufficiency, cancer, cancer fabulous, Cancer treatment, Caregiver, Chronic illness, Endocrinology, Health, inspirational, Love, Mibg, net cancer, pheochromocytoma, positivity, Radiation, rare disease, surviving cancer, terminal illness, young cancer, zebra by

My husband made me cry today. Not intentionally, in a beautiful way that just can’t be controlled no matter how hard you try, the last 4 months of emotions came pouring out of me, just by sharing my post I had written yesterday about my experience with MIBG. He never leaves my side, he takes care of me 24hours a day, meanwhile balancing his worsening illness and doctors as well. We are making it work, but we certainly appreciate each moment. We love each other so much it’s impossible to describe, but he does a pretty good job at it in his super adorable French way:

Wow baby.
This took a long time to be able to write this post. Finaly you where able too. You are so strong Miranda I hope that you can help others with this post. Butt I hope it helped you by writing what was in your heart. I know how hard this was I was next to you while you where writing this story. How tired and all the attacks you had while doing it. God I’m lucky to have you near me.
Thank you lord to give her the streingth to do so. You inspire me to be a better person and I pray for allot of years with you. We don’t know how many we have butt let’s make them the best we can.
I love you so so Mutch. Please stay with me for ever and ever. I could not imagine not taking care of you. It would kill me. You are so amaysing. And a joy to be with and to love. I have to stop or I’ll cry like a baby.
Love you baby.
God your special. 💋💋💋💋💋💋💗💋💋💋💋💗

Serge said to me despite the adversity of what we have experience, what we get to experience together is the most beautiful thing anyone will ever get to share, and we are so blessed we are able to go through something not many people will ever get to feel in their lifetime. So we should enjoy every moment of it together, and be grateful for our amazing connection we’ve always shared.

I am thankful I have such an incredible husband who looks at life and our love in the same positive manner that I do.

I know it’s hard sometimes that even YOU don’t get to know deep within what’s inside of me, until I write and process everything. I have to relive the trauma in order to help others, and that’s okay.

Sometimes I’m tired and scared and disappointed but I have you constantly here to keep the smile that never leaves my heart even when the pain takes it away from my face.

I recently wrote about not having a decent choice when it comes to treatment, what choice do we have anyways? When you’re constantly suffering through surgery, procedures, and now invasive treatments – and it doesn’t work… You just keep feeling worse, and it keeps taking it’s course, you might start to think, well do I even do the next treatment?

I was discussing the fact that with everything my body has suffered through since my diagnosis October 10, 2014, my metastatic pheochromocytoma still stubbornly proves disappointing results despite constant aggressive efforts to remove and radiate, still damages me with it’s overbearing symptoms, still hasn’t slowed down or given us even a glimpse of a stable point, but even with all of this pain and suffering…

The choice is simple

The question is not  “Should I do this treatment?”

The question is, “Should I do everything I can to stay with you?”

I’ll always choose you, I will always choose us.

The choice is simple, yes, we choose to have hope. We choose to try. We choose to do everything we can. We choose to say we did.

We choose to do everything we can to stay together, even if twenty things don’t work, I’m willing to suffer through them to see if one will.

I think that is what it means to be fabulous ‘Fabulous despite the odds’

Your loving wife,

Mrs.Simard 💋💋

Pheo VS Fabulous 💖