Before I start writing about PRRT… can I have you say the word ‘traumatized‘ aloud?
Does it mean anything to you?
Does it make you feel any immediate discomfort or pain?
I realized before finally sharing this, it did to me.
I said it aloud when saying why I had been putting off writing, and realized I may be slightly traumatized over the fact that in just the last year I’ve sustained more treatment, procedures, and tests than any living and breathing human body should ever have to.
Inhumane is the word my husband used to describe it.
All to stay alive, this is what we do, I’ll never be able to fully explain the pain or suffering of someone else’s story but I do my best through my own. That’s when I realized that this is so much more than a seemingly simple informational piece, my words are not science, I’ll leave that up to the medical journals and closed doors of your doctors offices.
What I offer is a human perspective, a body and mind that’s literally been beaten as each year goes by. A mind that despite all of this, continues sharing every detail with as many people as I can reach.
Because I’m still alive and able to do so.
Because this cancer hasn’t killed me yet and I feel like telling everyone why.
So let me start by oddly enough ‘celebrating’ my one year anniversary of another very similar but different radioactive therapy – MIBG. One of the many treatments I have had that has kept me here, writing to you, and telling my story.
Hopefully giving other ‘zebras’ like myself around the world the ability to tell their own.
In just ONE year, I realized I have physically completed not one, not two, but THREE radioactive therapy treatments. All of which were high doses, all of which were rare and experimental, and two of which were part of clinical trial.
Each one 3-7 hours away, each day averaging 12 hour travel, most of the year we were averaging TWICE a week hospital ‘road trips’.
It sometimes seems impossible physically, financially, and mentally.
You find a way.
This is your LIFE, and it’s yours to save.
(PRRT) with 177Lu-Octreotate
What is P.R.R.T?
(from the PRRTinfo.org)
” is a form of molecular targeted therapy which is performed by using a small peptide (a somatostatin analog similar to octreotide) that is coupled with a radionuclide emitting beta radiation.
Perhaps the simplest way to explain the workings of PRRT is to think about the analogy of a magnet and its ability to attract iron shavings. Think of a neuroendocrine tumor with somatostatin positive receptors as the magnet and the iron shavings are a somatatostatin analog chemical (Octreotide) to which is bound or attached to some radioactive material (the radionuclide Y90 or LU177). The receptors in the tumors attract the octreotide and this chemical with the radioactive material is absorbed into the tumor by the receptor. The radiation then starts to kill the tumor cells.
This makes PRRT a form of targeted therapy, able to impact those tumors that can absorb certain types of chemicals bound to radioactive materials. Since the octreotide with the radionuclide is put into a patient’s blood stream, this form of therapy is systemic, reaching all parts of the body via the blood stream.
I touched a little informally on my acceptance and the entry process last year here. A clinical trial requires entry and acceptance, in order to be accepted there are certain requirements you must meet and often a limited number of spots to be filled. However I will explain it more formally in my overview today.
This particular trial the requirements are:
Patient suffering from a neuroendocrine tumor(s)
Patient’s tumor(s) are not able to respond to ‘curative’ treatment (i.e.) surgery
Patient not responding to other available palliative therapies
Tumors demonstrate overexpression of somatostatin receptor by tumor lesions by scintigraphic imaging (Octreoscan or Gallium 68 scan).
Step 1 – Information stage:
Of course there’s the stage of finding out about the clinical trial, I was fortunate enough to find out about this trial through a fellow pheo fighter. This is why it’s so important to be part of a support network. I didn’t think much of it at first, I thought PRRT was only available in super far away countries.
Nonetheless, I researched all I could for a rainy day I suppose… Good thing I did, because the next appointment I had I wasn’t liking my options I was faced with.
It was then that I blurted out, “what about PRRT?!”
My doctor thoughtfully considered my outburst… and responded with the best news I could have hoped for, the trial was only a few hours away, and although a long shot… I MIGHT meet the requirements.
Step 2 – Meeting the requirements:
Since we knew I met 1-3 of the above requirements right off the bat, the only question mark was whether my tumors expressed the somatostatin receptor. In order to know if they do, you get either an octreoscan or a gallium 68 scan.
My doctor and I both thought that I would most likely NOT be eligible for this trial, because I had previously HAD an octreoscan, and I was previously negative for the PRRT receptor.
I did not show any sign of it, which means my tumors did not ‘light up’ or show what they call ‘uptake’.
Allow me to explain in human terms: when you go for these nuclear medicine scans you get an injection of a small amount of radioactive product.
Essentially a simulation of the hormone they are trying to reproduce, if your tumors light up you’re considered ‘positive’ for the receptor and they can see them on the scan.
If they’re negative, or (don’t light up on the scan), your tumors most likely don’t produce that hormone and they just won’t see anything, making that particular scan an unreliable source for diagnostic purposes IF that’s what it’s being used for…
Continuing on – Just this past year when meeting the requirements for the clinical trial, I went for the Gallium 68 scan.
Well, 1. because I already had the octreoscan and I was negative …
2. because Gallium 68 is considered the gold standard for these tumors & it’s sensitivity level is much better
So if my tumors were going to light up on any scan and show this hormone, it was going to be on THIS scan. If not, we could definitely rule out my being positive for this therapy and just accept I was only MIBG positive and go ahead with a second round of THAT therapy. (Yikes)!
I had the scan done, AND I WAS POSITIVE! I lit up like crazy, so much for the octreoscan.
The point? You can’t rely on the results of just any nuclear medicine scan. I of course knew before going for these scans I had confirmed metastatic disease, I just didn’t know I expressed more than 1 different receptor…
—-> For people who are looking for a diagnosis, it’s important not to rely on one specific scan for the answer if you’re symptomatic of a pheochromocytoma or paraganglioma.
Prep for PRRT 177Lu-Octreotate
Dose adjustment/ Kidney function Test:
In order to determine the dosage of radioactive product, you will undergo a kidney function test. Ultimately they will test the function of your kidneys through a series of blood panels and decide HOW MUCH radioactive materials will be injected into your blood stream. This is important as the treatment can result in serious kidney damage resulting in death.
The clinical trial is 4 cycles, it is a personalized study which means I am fortunate enough to be guaranteed a dose of the therapy, which also happens to be a personalized dosage according to MY needs and my disease. Not every clinical trial is like this, so it’s important to do your research before signing up.
*Like any procedure involving the manipulation of a pheochromocytoma/paraganglioma, proper blockade must be administered BEFORE the procedure. Despite having been on alpha and beta blockers previous to having PRRT 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.
Type of doctor: endocrinologist & nuclear medicine team
The actual procedure lasts 4 hours, only a half hour of which the radioactive materials being injected and the other 3 and a half of which amino acids are being injected into your blood stream to protect your kidneys. All in all, you are laying in bed or a lazy boy (depending on the hospital) for 4 hours having liquids dripping into your blood stream for 4 hours, behind a radiation shield, being monitored in a special room by a nuclear medicine doctor and amazing nurses.
Typically when the radioactive portion is being injected into you, this is the worst part. Both times I reacted strongly to the product immediately and it’s a HORRIBLE experience…
I instantly have the strongest wave of nausea, I flush entirely and cover in a blanket of sweat, I feel completely overcome, my heart races, my blood pressure always rises to a point so suddenly where I feel the worst pressure in my brain and eyes and chest pain that can only be described as a heart attack.
It’s always such a sudden assault to my system when the radioactive therapy hits my veins… it’s the worst rush, I can barely explain it.
Typically patients do not need to stay overnight in the hospital for this therapy, but you do have to stay close by for the week in order to complete a series of scans and protocol. I had to follow a different protocol for my first time because of previous complications during other procedures. Just to be safe I was admitted the day before, and stayed the night of to be close by to the doctors and closely monitored.
The hardest part of radiotherapy last time was being isolated for so long, this time I had my favorite person in the entire world with me for the first night while I was radiation free. The second night and so on we had to take precautions, but it’s not the same level of radioactivity as other types of radiotherapy, so this part was a relief for me in comparison.
It isn’t without risks and side effects of course, THE LISTED risks and side effects for this treatment are:
Risks (associated with radiation toxicity)
- the blood system producing red blood cells, white blood cells, and platelets.
- kidney function
- liver function
- Abdominal pain
- Subacute hematological toxicity
- temporary hair loss
- delayed toxicity to the kidneys
- serious hematologic toxicity is rare
I wish I was someone who experienced the ‘little to no side effects’, I always seem to have all of them, and then a whole list of fun add ons to share with the class! 😉
My Personal Experience
November 8th, 2016
Instant side effects DURING treatment…
- Hot Flash
- Chest Pain
- Back Pain
- Joint Pain
- Heart Palpitations
- Once treatment is over, immediately go and get nuclear medicine scan following treatment.
- Another nuclear medicine scan a couple of days later.
- Finish the week with a last full body nuclear medicine scan the day before you leave.
Side Effects after treatment… (First Week)
- CHRONIC body pain
- Kidney pain (flank)
- Tumor pain (inflammatory)
- Abdominal pain (sharp, specific)
- Chronic fatigue
- Blurred vision/Visual disturbance
- Heart Palpitations
We were allowed to leave after a week, unfortunately the treatment gets stronger every day. NOT ideal when just standing up out of bed provokes what we would now refer to as the massive heart attacks.
The day we went to leave I stood up to get dressed and I had a new type of attack I would now have to ‘get used to’.
An electric shock that would electrocute my left arm, my spine, my neck, down my legs, all at the same time. I would suddenly convulse and not be able to stop shaking as if I was being hit by lightning bolts, pain accompanying every ‘strike’.
Nausea being the only warning for this assault of all my body, I could only scream and and cry from this sudden take over of my useless body.
The body that was supposed to be getting better, because therapy implies some sort of care or solution… not whatever this is. NOBODY deserves whatever this is.
Getting home should have been a sweet relief… instead it ended up being the place where I remained bed ridden, prisoner to my upstairs for over 40 days, and unable to do more than walk to my bathroom without having these horrific attacks over and over again.
Fast forward through some complications, a lot of ups and downs…>>
All in all, my first round was rough, but we got through it.
January 10th, 2017
Side Effects & Procedure … (Same as above)
My blood counts were low going into the procedure this time around, but thankfully they have gone back up and everything is okay again. This is one of the risks of the procedure, and one of the things that can be very dangerous. This is why follow up protocol is so important!
Differences so far:
- Slightly lower dosage
- SLIGHTLY less aggressive/frequent attacks
- Nausea hasn’t lasted as long
The second round seems to be going a LITTLE bit better, and of course this can help with my symptoms and make me more comfortable and shrink my tumors.
So here’s to hoping it has an effect on me !
2 More Rounds To Go…!
Okay, I am officially EXHAUSTED!!!
This post has taken everything out of me, it’s been a hard one.
I hope this has helped you all learn about clinical trials, PRRT, and more about what it is to live with metastatic pheochromocytoma.
Most of all… I just hope I have made my impact to become a little less rare.
Please feel free to share 💖