January 20th, 2016 – I had radioactive MIBG therapy performed.
To say it’s been a ‘rough’ road for me would be an understatement, I wanted for this treatment to eventually become easier to write about so I could have something incredible to share with everyone like me who is so in need of hope. Then I realized something, just the fact that I am able to give a voice to the ‘experience’, is something to be hopeful about. We have very few places where someone can go to learn about our disease, where we can prepare ourselves for these treatments, and understand on a patient level what it is to be rare. Right before I had my treatment, all i could ask was questions… and scan through the few medical journal/clinical trial MIBG papers there were published. Now at least we have this, and believe me… I have documented pretty much everything!
Even though this treatment has been super hard on my body, keep in mind some people take to it very nicely and have little to no side effects. Keep reading for the full experience, and be sure to read the adjoining pages for full context & history – prep info!
I always try and think of it like this: it could be A LOT WORSE, yes?
What is I-131-MIBG therapy?
I-131-MIBG therapy is a type of radiation therapy used to kill cancer cells in people with certain kinds of cancer. The medicine is a clear fluid that looks like water.
This treatment is given by infusion through an intravenous (IV) line or central line. The fluid is slowly pumped through the line into your bloodstream so it can travel throughout the body.
The fluid contains I-131 and MIBG. I-131 is a kind of radioactive iodine. This is what gives off radiation to destroy the cancer. When it is attached to MIBG (another chemical), it brings the radiation into the tumor.
Once inside the cancer cells, the iodine gives off particles of radiation (beta radiation) that travel outward about half an inch in all directions. This kills the cancer cells and the cells around them.
The infusion is done in the hospital. It takes about two hours. After the infusion, you stay in the hospital in a special radioactive isolation room for about a week. For five to seven days, your body fluids (like urine, sweat and saliva) will give off extremely high levels of radiation that could harm others. You will be incredibly radioactive for the next few days, and even weeks to follow. Special precautions will have to be followed in the hospital, and even after discharge for the following weeks.
You may have noticed my post frequency has been becoming a little further apart, and then suddenly not at all. Well… the truth? It hasn’t gotten any easier around here, the immediate NASTY side effects bombarding me from MIBG slowly went away, but other than that… I am still about the same. I knew that sharing this portion of my experience was going to be difficult, and I’ve been waiting for the ‘right time’ in order to form my opinion. I didn’t want to share too early while I was too bitter and feeling so awful (lol), so I waited and waited (hoping I would feel better & better with time passing) in order to gather all of my data and make a fair and informed overall overview.
In the meantime, for those of you who are new to my blog and just catching up…
These are the relevant posts to all of the preparation I did in order to get ready for the actual MIBG radioactive therapy process, super fun times 🙂
- First look at results after debulking surgery ‘Results’
- Complication # 1 ‘Staying Alive’
- MIBG prep stages – ‘MIBG Prep’
- Bone Marrow Injections ‘pain pain go away’
- Day 1-Bone Marrow Collections Day 1 Agenda
- Jugular Insertion, Bone marrow Collections – ‘Fighting with a Capital F’
- The actual MIBG process ‘Remedy for the rare – MIBG’
- 22 days post MIBG – ‘It can only get better…’
I write this with caution, it’s important not to compare your own situation directly with someone else. For example; my disease is complicated with adrenal insufficiency, chronic pain from surgeries, and subsequent issues along the way.
Although I document and share my experiences in order to help you make informed decisions, answer your questions; and prepare you for situations you may not have otherwise thought about, keep in mind that side effects and the actual physiological response will most likely be entirely different. Procedural information should be similar, personal experience is just an added bonus! 😛
Anyone living with metastatic pheochromocytoma/paraganglioma typically will undergo surgical intervention to remove as much of the cancer possible, and then will have to explore ‘management’ options for the disease. This will naturally include radioactive therapies such as MIBG if the tumors respond to this type of option, and if you are not a candidate for radioactive therapy you can do different therapy methods such as external beam radiation, cryoablation, radio frequency ablation, combination therapies and sometimes clinical trials. Most likely at some point, a few of these therapies will be attempted in order to control this disease regardless, depending on your individual response to the therapy used.
Since my tumors were outputting such a high amount of catecholamines before MIBG, they needed to be dealt with immediately, my attacks were out of control. Even with the effort to manage with pharmacological intervention, which lowers blood pressure and heart rate and attempts to manage the damage the tumors are causing, I was at a point where everything was out of control and needed more aggressive therapy in order to lower the output of adrenaline and hopefully stop the growth/shrink the existing ones. The idea of the treatment is shrink them/lessen the amount of catecholamine output (adrenaline) making it safer for my body and less damaging. In turn, making me comfortable, improving my quality of life, and hopefully giving me more time to be my fabulous self.
Alright, history lesson over.
MIBG … The Process
If you read my post above MIBG Prep, there’s quite a few aspects needing to be covered before going ahead with the procedure. There’s also different specialists needing to be involved with the care and preparation requirements, I will touch on a few here.
This is a very important one, some multi-disciplinary teams may say it does not need to be done because the dose isn’t high enough to do enough damage, (that’s a gamble by the way) have you had other treatments, what about over time? More than likely you will have more than one treatment, GET YOUR BONE MARROW PROTECTED! This could be the difference between life and death. Stem cell harvesting should be discussed incase the MIBG kills your bone marrow, they will have yours on hand in order to do a quick transplant in the event you should need a bone marrow transplant should this complication arise. Stem cells can be stored for up to 5 years, so they can be kept even if you have MIBG more than once. Ideally kept in the event you should need them for a quick and ALMOST guaranteed match, (did you know you can still reject your own?).
Type of doctor: hematologist
Like any procedure involving manipulation of a pheochromocytoma/paraganglioma, proper blockade must be administered before the procedure. Despite having been on alpha and beta blockers previous to having MIBG radiotherapy done, my doses were still increased in order to effectively prepare my body even further for the release of catecholamines that the radiation was going to cause once it reached my tumors. This is also why it’s important to have an endocrinologist on call at all times monitoring your condition after the dosage has been administered, keeping an eye on your vitals, ready to adjust pharmacological blockade when necessary to prevent further stress on the body – worst case scenario complication (heart attack &stroke)
Type of doctor: endocrinologist
Then of course there is the 30 day supply of potassium perchlorate that has to be ordered to protect your thyroid from all of the radiation (yuck!, I will have nightmares about doing shooters of this stuff constantly for a month), the logistical side of things – making sure the actual MIBG gets ordered ! luckily my nuclear medicine team is a-maaaaazing 🙂 Most importantly though… deciding which dose will be appropriate for you, which medications can counteract, which medications can lessen the effect of the MIBG, and coordinating all of the other decisions listed above regarding bone marrow, and pharmacological blockade before as a team.
Type of doctor: nuclear medicine
For those of you with adrenal insufficiency….
*Since I have adrenal insufficiency, and my body does not naturally produce cortisol… we also had to prepare for how my body would respond to the extreme stress of the procedure. My regular steroid dose would now have to be adjusted for what is called a “stress dose”, (example, triple the regular dose of steroids) people who have AI have to stress dose when undergoing any type of procedure, sickness, fever, etc to compensate for the extra stress the body is enduring that we are unable to naturally produce and make up for. If you do not compensate with the problem amount of steroids, this can lead to “adrenal crisis” and you die. The problem is that at the time I had been “stress dosing” quite a bit as I had been enduring quite a few other stressful procedures leading up to this event, so my regular daily dose had been quite elevated, and so my “stress dose” even though it was tripled, probably wasn’t quite enough to handle this procedure. For those of you with AI: make sure your steroid dose is more than adequate for these types of procedures!
*I find it important to log my medications and symptoms – as it’s easy to lose track when dealing with so many – remember, you are your own advocate!*
Tip: Keep your own medications with you, often pharmacies can be late in hospitals. My steroids have to be taken at the same time everyday, and I was very fortunate to have mine on me when the pharmacy did not have my steroids and was late getting them to me. It isn’t uncommon for this to happen, and is much less stressful when you’re prepared for these situations.
The actual process lasts for about 2 hours, you are hooked up to an IV where the MIBG will be injected directly into your body. It is highly radioactive so no one can be in the room at this point, you will be in a lead room for the safety of others so that the radiation cannot travel out of the room.
I had a special shield (an x ray window of sorts) so that my team of doctors could watch and monitor my condition while the MIBG was being administered, shown below. While the procedure was being done they were fully expected a crisis to happen, at which point I had about 15 people on hand watching and waiting to run in and intervene. My blood pressure was taken every 15 mins, other than that I was fine… just really had to pee.
It only took about an hour after the treatment was administered for my body to start feeling like the tumors were exploding one by one, making it feel as if I was experiencing every symptom I had ever felt… but just all at one time, over the course of one night. You can read more about my personal experience here.
I was not someone who experienced little to no side effects, the first night my symptoms were:
- Forceful Heartbeat
- Hot flashes
- High blood pressure
- Dry mouth
- Bleeding gums
- Muscle pain
- Bone pain
- Metallic taste
- Sweating profusely
- Chronic fatigue
- Swollen glands
- Throat inflammation
These symptoms continued with me for the course of my hospital stay, and then most of them lasted with me at home as well, slowly tapering off 1 by 1 as time went on.
I was hospitalized in the isolation radioactive lead room for a week, your radioactivity levels are measured every day to see how high they are. Once your radioactivity levels are at an acceptable discharge level, you may leave to go home.
This doesn’t mean that you are free to go home and go back to normal, I was still so highly radioactive that I wasn’t allowed to sit in the front seat of the car with my husband. We were not allowed to sleep in the same room together for a few weeks, I was not supposed to have people within a few feet of me. No sharing soaps, towels, flushing the toilet twice, etc.
How have I felt since…?
Month 1 …February
My first month was basically a whole month of physical torture; I was already extremely symptomatic pre-treatment, and now the MIBG had amplified this ten-fold. I was confined to my bedroom because doing the stairs would set off my “pheo attack” instantly. Showering had always been a trigger for me with the mix of the activity/movement and the warmth/humidity, post treatment I attempted to shower and my blood pressure went through the roof, my heart felt like I had a knife in it, and I honestly thought I was going to die. The two activities I attempted to do were go up and down the stairs, and bathe. I couldn’t do either of these without setting off an EXTREME reaction, blood pressure elevation, heart rate pounding, migraine, hot flash, tremors, vomiting, chest pain, coated in sweat, extreme pain… you name it, followed by complete and utter exhaustion.
I was a prisoner in my own home…
Even without ‘provoking’ the attacks, if you could call walking or bathing provoking… they would still happen on their own. So I couldn’t win, I would still have these massive blood pressure spikes.. and feel these pains in my chest, and be assaulted with so much adrenaline in my body at times I couldn’t see because the pain in my brain was so unbearable. Every.single.day, multiple times per day.
My medications had to be increased in order to control the effect the MIBG was having on the release of catecholamine in my body, think of it as… poking a grenade. Except we didn’t poke it, we injected the grenades directly with radioactive iodine and pissed them off. Now they’re exploding adrenaline all over my body, THANKS science.
Side note – speaking of metallic taste in mouth… I was also unable to eat anything sweet, anything with sugar actually tasted like I was eating PURE sugar. It was disgusting. MIBG really messes with your tastebuds, and ruins your ability to enjoy treats. It’s an asshole.
Month 2… March
Not many changes happened month two, my resting HR went down ever so slightly with the increase in medication. I was hopeful, it allowed me to begin walking down the stairs with a schedule in place (haha). I could plan my day according to when I could be in my bedroom and when I would be in the living room downstairs, it was quite a big deal.
The initial side effects that were abnormal for me – the metallic taste in the mouth, the throat reaction, gum bleeding, dry mouth, and agitation were beginning to subside now.
The pheo attacks were still incredibly pronounced (so my medication had to be increased again) – these are the one’s that control the blood pressure and heart rate *alpha and beta blockers*. The fatigue and flu feeling was still very hard to deal with, and my pain levels were at an all time high (but my pain is unrelated to the procedure) however it was definitely amplified by everything.
My husband and I began taking walks at night, slowly regaining my ability to do little things. My HR and BP still spikes like crazy at a certain point (I wear a fitbit) but I don’t overdo it, I just go to where I’m comfortable and when my grenade filled body is telling me to stop.
Month 3… April
I started to be able to test the waters with small outside world things, going for lunch for example.I became a rebel, going outside without the purpose of a hospital visit, ha! It would take me forever and a day to prepare for such a small little thing, and probably another two days to come back from it, but I had to start enjoying myself, that’s the whole point of treatment, right?
We continued our walks, sometimes I’m able to go a little further… and sometimes my condition gets worse and I’m more symptomatic and I’m unable to go at all. I always try to go regardless, but if my heart rate is spiking in the “danger zone”… I don’t want to push it and have a heart attack just so I can have a walk. Ugh
Still so so sleepy……. ALL the time
I guess this is about the biggest improvement month I will have felt.
Month 4… May
My attacks are becoming worse again, my pain level is higher, my vision is now sometimes being impacted, and I am increasingly more and more tired. I’m back where we started, in the uncontrollable phase. That didn’t take long, I didn’t even get over the side effects of the treatment and I’m worse than when we started. I cannot do really anything without provoking the mother of all attacks. I have more symptoms attached, nausea & heartburn are really wanting to become a new permanent member of the family. Normally that’s an indicator of where they are located, which isn’t a good sign.
After treatment is done, it isn’t an immediate relief or immediate answer type situation. As you can tell from my experience, we are only just now beginning to get a picture of how my treatment did. Below I will go over the Medical Follow Up Stages and what to expect, it’s really about a 6month journey I would say…
Medical Protocol – Follow Up
After the MIBG is administered, the treatment as I mentioned earlier had the potential of killing your bone marrow.
You also are going to be susceptible for infection since your blood platelets are going to drop, which means under no circumstance should you be allowing ANYONE around you who even has a sniffle – as this could mean they could wipe out what little platelets you have left, and kill your marrow. Your body isn’t the machine you once knew it to be, remove the notion of “I never get sick”, you can get sick, and you CAN die. So, limit your contact with people and germs. It’s not rude to ask people, have they been sick recently? Is someone in their home sick? Etc.
You will be getting blood draws approx every 2 weeks for the first couple of months after your treatment to check your platelet levels which will include a full CBC (complete blood count), your electrolytes, liver profile, kidneys, and your thyroid function.
10 days later…You will have an MIBG after the treatment has stopped, this allows the nuclear medicine team to take advantage of the ‘high dosage’ of MIBG radiation in the body – because normally there is only trace amounts injected into the blood stream for scanning purposes… this will allow them to uncover any hidden tumors and see a full view picture of ALL of the pheochromocytomas/paragangliomas in the body that will absorb the uptake.
2 month mark…
- You will have another MIBG to compare.
- Plasma metanephrines test
- Pick up 24urine jug at the same time
- Complete 24hr urine test, bring back to lab
- Start scheduling imaging – CT, MRI, MIBG for June & July
4 month mark…
- First look at results of plasma metanephrine test
- Results of 24hr urine test
5-6 month mark…
- scheduled imaging
I’ve seen a lot of people ask the question, “Should I do this treatment?”
It may seem like after everything you just read, you’d be thinking… She’s probably going to have to think long and hard after what she just went through if she has to do THIS treatment again, or… I’d be saying ABSOLUTELY NOT to that treatment if I were her!
What people don’t really understand though is…
What choice do I have?
Read: The Choice
My posts are really not to influence someone ELSE’S decision of whether or not they should or shouldn’t undergo a treatment, they are to inform you of what to expect, from someone who’s actually felt what it is to have this therapy administered: and at the same time… provide you with the necessary medical information ***to the best of my abilities from what I have learned as an active member of my own health. I am not a doctor, I am not a health care provider, I am just a 25 year old woman trying to stay ‘fab’ with a very rare pheochromocytoma cancer. At the same time, I feel I have a responsibility to my friends around the world to do my part by spreading awareness in the form of information.
“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it” – Pheo VS Fabulous