You never want to hear the words “I don’t know what to do next”. Especially when it comes from one of the most talented doctors who has a literal hand in saving lives every day… including yours.
Even the best specialists can become perplexed when it comes to continuing to keeping me alive. It seems as though we have quite a few conversations that start like this.
It’s not as though there’s some magic potion, we know that already. The invasive surgeries, painful procedures, special radiotherapy, radiation, chemotherapy, heat, ice, targeted, un-targeted, regardless of all of the constant ‘treatment’ and ‘therapy’ – it is simply done to MANAGE the impact that the disease has on my body, and hopefully lower the danger level it is causing every day. So when we sat down with my surgeon (who is a part of my multi disciplinary team & tumor board for my case) this past March, after having had so many pieces of my body removed, having had SO much radiotherapy, and too many painful procedures to count, I thought just that… It would start being managed, and the danger level would start to be lowered.
I don’t know what to do next…
If this high dose radiotherapy that gets injected directly into your blood stream and goes right to the tumors isn’t working… What is our next step? My dose was on the high level of the scale, and it didn’t make the impact we had hoped. So again, what do we do next?
The now famous question.
The past few months I’ve had to wait for some of the final results from my last treatment in order to know how to move forward. In normal circumstances this would be the time where most would be able to enjoy their bit of peace they’ve earned from the recent treatment and plan the next stages based on how effective the last took. Sadly, this was not the how it worked out in my case.
During the waiting period I’ve actually been able to FEEL my disease progressing. I must remind you … with cancer, there’s one way to die, the tumor growth. Already this is enough to worry about, yes? With my cancer, there’s always a minimum of two ways it can kill the few of us who have it, the tumors constantly secreting their adrenaline, AND the tumor growth factor. Not to mention the hideous subsequent side effects of the treatments and other complications that I won’t get into because I’ll just scare everyone reading this. Ultimately there’s more than just one way to die and that’s what we mean by management in this disease – we have to be managing these two factors at all times, or trying to.
This managing factor has been somewhat of a challenge (to put it lightly) in my case. The output of adrenaline has been the most dangerous factor (and this is the most damaging part), and the tumor growth hasn’t been cooperating to be considered stable for any long term period of time. I can’t say I have been doing too well with side effects either now that I think about it.
The month it would all begin… I would meet with my pheo Doctor and make the official confirmation that the MIBG (although had worked) was somewhat ‘disappointing’, and something else would need to be done. At this point we would discuss having to combine other therapies, like traditional radiation, along WITH repeating another round of MIBG at the same time, because well, as horrifying as this all sounds… What choice do I have? Before anything is confirmed… you guessed it, time to do a whole lot of tests.
Testing month, although we had a pretty good idea that things were looking poor from the existing post treatment scans and biochemical results we already had, it was time to do the detailed six month overview. The exhausting continuous cycle of bad news would now recommence, my body would be put through what would seem like an endless trauma of treacherous procedures all to hear those same words over and over again…
little impact, disappointing, dangerously high levels, we need to do something quickly…
It was time to get the results of my latest scans, my urine analysis, my blood analysis, all of these will tell us the final detailed overview of what the situation is looking like. How bad it is, how good, any improvement…
I’d been so nervous I couldn’t even feel my nerves anymore.
You know, I always tell you all how I never have much expectations, how I go in with a blank slate so that I cannot be disappointed? Well, I’m not going to lie… I had a bit of expectations for this particular appointment. I expected a tiny bit of improvement. I thought to myself, “it at least can’t get worse”.
Until it did.
My body became still, my eyes so fixed on what my doctor is telling us but unable to listen to what he is saying.
“Need to start you on Sutent right away…”
Wait, chemo?! What?
“Need to set you up with an oncologist next as part of your team now… “
“What the f is happening here?!”
(I always knew it like this: surgery-> radiotherapy->maybe radiation-> and then chemo is the LAST LINE of defence, because it just doesn’t work for this disease, it isn’t curative, it’s HARDLY even manages, it’s just a horrible, side effect filled drug, that’s given at the end when there’s no other options left)
Ex-cuse me, am I really there???
When did THIS happen?
Shocked, is the understatement of the century. So, once I came back down to earth and slipped back into my own body again… I was able to ask some questions and reacquaint myself with this insanity blindside.
Insert: THESE ARE MY OWN PERSONAL OPINIONS
Number 1, Sutent isn’t my favorite drug. Just due to the side effects, for other types of NET tumors, sure, but not for pheo, I’m not too sure yet, like most pheo cases, there aren’t enough studies done yet.
So there’s other types available, we can get into that later.
Number 2, what happened to the idea of doing radiation? I thought we were doing traditional radiation and combining it with MIBG? Where did this plan go?
Well, upon further analysis, it wouldn’t be very smart to aggravate your very active tumors, and potentially spread the cells further with this approach.
OK, fair enough. Good answer
Number 3, I heard about this new type of scan called gallium 68 in Sherbrooke at a clinical trial level, perhaps I could be accepted into this trial, have this scan… and IF I am octreo positive we can see if I am eligible for the PRRT clinical trial and have an alternative treatment option other than MIBG??? For once… have a choice!?? Yes?? Maybe?? Let’s talk about THIS. This is more fun. I like this much better. 💡💡💡
Although the chances are slim to none, and we don’t have much time… maybe we can make it happen…….
(Serge’s hamster wheel starts turning)
Suffice to say this day took everything I had.
Everything we had just had to take in at that appointment was incredibly overwhelming, but there was not a moment to spare. The MIBG treatment was already being booked, the oncologist was being booked to discuss the chemo I didn’t want to take, everything was going full speed ahead whether we liked it or not.
This disease doesn’t slow down for anyone to process their emotions, so you don’t have the time to think, swallow, or take a breather. It’s all about being one, two, or preferably five steps ahead.
Now it was our turn to regain some of the control. I had done my part researching over the past few weeks, even months, previous to this appointment, knowing the information about the clinical trial and the new treatment options would come in handy one day. it was now time to let my amazing husband do his part, he was going to do what he does best, save his beloved wife.
Step 1: Clinical Trial Scan
There’s only 55 participants allowed to do this trial, each of which need to meet specific requirements. Apparently this hospital is the first in Canada to have access to this scan, step 1 of the trial in my specific case will determine wether my tumors are receptive to a certain type of hormone, if my tumors light up – it’s a good thing. It means they are octreo avid, which means they are able to have a special type of radiotherapy (similar to the radiotherapy I had back in January) but using a different type of receptor. This therapy is also still in clinical trial level, which means it’s a lot more difficult to be accepted, and again… it’s only offered in specific places in the world.
I’m getting ahead of myself, I need to get past all of the red tape and get accepted into the actual trial first and have the scan in Sherbrooke! Also…just one little thing, if they do accept me… it needs to be RIGHT AWAY because of my other treatment option kind of waiting for this answer…
Not hard at all right?
Doctor cupcakes to the rescue.
Would you believe me if I told you Serge got me accepted into the clinical trial within 48 hours?
Even more unbelievable, with the combined efforts of doctor cupcakes and doctor pheo – we would be travelling to Sherbrooke to physically have the scan 5 days after the appointment I just briefed you guys about.
Thank you so much to everyone at the CHUS research center, Hospital Fleurimont Sherbrooke for working with us to make this happen so quickly. We cannot express our gratitude towards your kindness and the work you are doing.
There wouldn’t be enough thank yous in the world to cover my gratitude towards my husband and my pheo doctor who works tirelessly to treat me and the care they consistently provide me.
The only downside? Once we travelled all the way to Sherbrooke to complete the scan – there was technical difficulties. See, with nuclear medicine… it literally is an exact science. The medicine that is injected into me to make my tumors light up or not, only has an hour shelf life. It is made especially for me upon arrival, when making it there was an issue with the equipment, and the injection was no longer usable.
I couldn’t participate in the study that time around, the trip was wasted.
We were absolutely devastated. I couldn’t take one more thing going wrong. I just couldn’t.
My name wouldn’t be fabulous if I didn’t eventually shake it off… and make it the most memorable trip we ever had, I think that’s the meaning of everything happens for a reason. Perhaps it was to give Serge and I some much needed alone time together, just him and I, for his birthday. We ended up loving Sherbrooke, and it’s our favourite place to be.
Back to reality …
We made our way home, no scan done, and worsening attacks. What now?
It looks like I may just have to take the treatments that are being offered to me, as much as I am traumatized by the thought of doing the previous treatment I had, and even more so by introducing in these chemotherapies that I swore I would never do, especially since I’m 25 and I feel like I’m now being given last line treatment… there’s no time to do anything else.
I’m just getting worse by the day, scratch that, the hour in some cases.
I guess we have to talk about the chemotherapies today, or at least learn about them, and an oncologist is the doctor to do that. I always thought I would be able to get away with having an endocrinologist forever, my “pheo doctor”, and he would just consult the others when needed. I don’t like this new idea of having to have separate doctors, unless it’s for pain, or surgery, or eyes, or sleep, or specific things that don’t have to do with cancer.
Oncology is intimidating… although HE was super nice, his title makes me nervous.
This would be the first time I would hear about immunotherapy treatment clinical trials, and would learn about the different TK inhibitor chemos. I already went in with an understanding of Sutent, and left with a confirmation that I didn’t want to do that in my specific situaiton, and that different one’s if I HAD to do it may be a better fit for me.
I got home that night depleted, confused, cold, shaking, exhausted, nauseous, hot, oh yeah… this might be lack of cortisol, that would make sense.
This life gets tiring, even writing about it is draining.
Clinical Trial Scan PT 2: August 5th
You didn’t think my husband would give up that easily now did you? Two weeks later we were back on our way to Sherbrooke for attempt #2 at the Gallium 68 scan, hopeful we would get to complete the whole trial from the injection to the entire scanning process. Giving my pheo doctor the valuable information he would need to determine whether or not I would be eligible for the special clinical trial using a different method, which would give me another option than MIBG, and hopefully other treatment options down the road. OPTIONS being the key word!
So there we were, we passed the point of where we were the previous time, it was looking good! I got the injection (woo!!!) I drank some awful iodine poison drink, sat in a room for an hour and let my tumors drink up all the radioactive juices, and away we went! I laid down in the scan for about an hour doing pictures, and then went to sit and wait for the go ahead to leave or do more. The doctor came back and told me I would need to get injected with lasiks to flush my kidneys and bladder, and retake the pictures, (this is a good sign I figured), if I wasn’t lighting up I wouldn’t have to re-do the pictures.
PAUSE for where we are supposed to be celebrating the success of the scan having gone well this time, instead my left leg had been swollen since waking up that morning. Since I am susceptible to blood clots, and since throughout the day my leg had doubled in size, we would have to rush to the Montreal ER on the way home to get my leg checked out. (This would then turn into a 3 day ordeal)
Good news is, I don’t have a clot… bad news is, still have no idea what happened to my leg lol, #overit.
A gallium 68 scan is designed to be highly sensitive IF your tumors are receptive to somatostatin, it can pick up things that other scans like CT, MRI, even MIBG wouldn’t be able to necessarily see. This is a good thing, and a bad thing. It’s a good thing because it gives you a FULL picture as to what we are dealing with, it’s a bad thing because… well, I literally thought that as I mentioned before, it CANNOT get any worse.
Since the scan picked them up, it means my tumors (although lots of them) are eligible to be treated in the clinical trial with a different form of radiotherapy.
So now we are actively working on getting me accepted into THAT trial as fast as possible, since I’m suffering more than I ever have before currently.
I sincerely apologize to everyone who has been reaching out for being MIA, this is why. This is why I am taking the time to do this now, and update you all and let you know what’s happening, and what’s next.
What’s happening right now?
Since my disease output and symptom management has been out of control, (the adrenaline my tumors are producing is too much for my organs to handle) and it’s now at a more dangerous level than ever, some pretty drastic measures have been taken in the last little while. As in the last few days…
I had my scariest pheo attack to date at home last week, ….
After that, my pheo doctor made an emergency chemo regimen right away to try and get this under control.
The chemo is an injection form of the octreotide, which I am now able to get because of the gallium 68 scan I JUST told you about, neat right? (this is another treatment available to me because of the clinical trial scan I just did!) if my tumors were not positvie for octreo uptake, this chemo wouldn’t work for me.
Right now I am sitting here writing this from my hotel room in Montreal, if nothing changes again, I will be getting my first injections of chemotherapy tomorrow at the hospital. It should be a three a day injection regimen to start, probably that we will then have to do at home :(… and closely monitor, as usual, we don’t know much more than that at this point, all we know is that we’re terrified, and feeling a bit tough lately.
There’s not a whole lot holding us together other than our love and laughs and smiles, but if I can say one thing it would be the very special people who have taken the time to stick around and be there for us throughout this time – it’s meant everything. I haven’t been able to share anything because of my condition I’ve been in, I’ve been writing little bits and pieces over the past few weeks in anticipation of eventually sharing something with everyone when I knew more. Then I got so behind because it’s just been impossible due to my condition, but I’ve powered through because I never want anyone to be in the dark about what’s happening, and most importantly I need everyone to learn by my experience.
I promise the moment I know more, I will educate the best I can with what I have!
Here’s to a very poisonous 2.0 Miranda, if there was ever a time that we needed light, support, prayers, thoughts, love, pixie dust, it’s now my friends ❤
Pheo VS Fabulous
I have no words…only a heart full of Love & prayers for you both! know that you are in my thoughts constantly <3<3
Miranda – I’m so sorry about all your struggles. It doesn’t seem fair. I do have to say you have been extremely valuable to my daughter, Michelle. I truly appreciate that. I will keep you in my prayers to help you through all the disappoints and your struggles and your journey for finding a cure.
What an incredibly scary world you are living. Thank you for sharing your journey with us. Ironically I’ve been offered Sutent. It is the first line of treatment in my case. It has worked for some patients. I haven’t wanted to try it yet since surgery is still an option. I’ve also heard some patients who did well on the somastatin treatments.
Miranda, you are truly inspirational. I love that you can express your experiences so eloquently, but I hate that you have to even go through them. I really appreciate how you are taking the time to educate others about your condition. You truly demonstrate how to turn a tragedy into a triumph, and so many people can learn from you. You are in my thoughts and I am continuing to send positivity your way, darling Miranda. Continue to always be the fabulous YOU! xo
Hugs to you my friend. Big hugs. You remain one of the most inspiring and brave people I have never “met” on this crazy journey. Sending up many prayers and positive thoughts in your name. So proud of you for fighting so hard. xoxo
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I don’t know how I missed this post! ARGH… you’ve been going through it girl! I am praying for you and sending you lots of good JUJU!
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Thank you, Miranda, for sharing so honestly. I’m in that sorta “honeymoon” stage you mention. Got the “upgrade” from pheo survivor to…oh, actually that’s “metatastic pheo”, congratulations. Trying to navigate medical babylon. I will now not romanticize the MIBG treatment with “at least they aren’t gonna cut me open and then I have to do all that healing crap.” Good to know what I’m in for. I guess.
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Hi Abeja, I try to be as honest as I can. I must admit I go silent in my darkest times though. It’s difficult to write during these phases and also just at my most draining times, I cannot focus nor write due to physical limitations. It’s a very special journey as you describe, the one thing I can say is that these treatments have done more than I anticipated – it’s all of the subsequent tests and procedures that go along with it that are hard, and having adrenal insufficiency has made everything so much more complicated in my case. I talk about adapting quite often, you will do just that, and not only will you adapt, but you WILL thrive, and find your way of becoming YOU in all of this. I promise.
UGH— I hope you are doing better Miranda. Please let us all know as soon as you are feeling up to it. You are fighting a huge battle without any doubt. I wish you strength,peace,love .and hope.