As much as we can hope that certain side effects do not happen from this radiotherapy, several things still can and will happen. This is not a traditional ‘radiation’ therapy, there is no beams, no rays shooting at my body, nothing traditional about it, I am literally going to be injected all at once with a massive dose of radioactive compound – directly into my veins, which will navigate it’s way through my body… to my tumors, the tumours will absorb this radioactive iodine compound, and this is what will hopefully shrink them, or at the very least make them a little less metabolically active (less adrenaline producing) to give me less symptoms, which in turn should increase my life span, possibly allow me to live more comfortably for the time I do have, and hopefully lessen my chances overall for the damaging effect the tumours have on my body – like heart attacks and stroke, further spreading into other organs, which eventually is what leads to death, if not caused by some other random complicated from the disease. This is a normal stage of treating malignant pheochromocytoma, first they debulk as much of the cancer as possible with surgery (we did that), and then the next step is to proceed with the high dose radioactive MIBG therapy as the next form of treatment. This will all be happening very soon, January to be exact. There are many stages of preparation to do this safely and effectively, as I will go over in this segment. These are just what we have gone over so far, I am sure there’s many more to come…
So first thing on the list of preparation so far:
Bone Marrow Transplant – (Stem Cells)
It was recommended that we involve a hematologist at this stage, the risk is not clear since the disease is rare and each case is unpredictable, but with high doses of radiotherapy such at this, anything can happen – like wiping out my bone marrow (aplastic anemia).
Once you do that, you don’t have anymore… so it’s better to be prepared. As you know, it’s difficult to find a bone marrow match, especially at the last minute, the last thing I want to be doing while fighting for my life already is finding out that my bone marrow is damaged beyond repair, and I am in need of a transplant, and have to wait to find a match, which is not a guarantee anyways. Did you know your own transplant can fail anyways? I didn’t. You learn something new every day.
Apparently it’s not very common that they see this, (obviously) I hear that a lot, well actually they never see it, because in most cases… when someone is donating their bone marrow, it’s because they know they will need it, in my case, it’s not definite that I will need it, I may need it at some point, I may not, it all depends on how aggressive the radioactive compound decides to be on my body I suppose, we will see how strong my bones are once I get the treatment 😉
So the stem stem transplant will work something like this:
I will go to the hospital on the first day to receive an injection of a medication called Neupogen, the idea of this injection is to artificially stimulate the production of stem cells in my bone marrow for rapid growth, so that in a few days for collection purposes, there will be enough to extract from my body. I will have to receive this injection for about 3 days, the next 2 days we will do the injection at home (Serge will love having to give me another injection at home) especially a painful one. Since it’s sole purpose is to stimulate the growth of stem cells in the bone marrow, the major side effect is bone pain, kind of like a bad flu, (ughhhh) I may get a fever, nausea, headache, discomfort and swelling from the needle itself, and of course the extremely almost unheard of cases they say blood cancers and weird swollen spleens.
After we are done injections – on the fourth day we go back to the hospital for the actual transplant collections of my stem cells. This is the day they will have to hook you up to a large IV, the one where they unfortunately have to stick it into your neck most likely, (like the one I had during surgery) *gross*, and that will be hooked up to an apheresis machine for about 6 hours. It collects the stem cells from your body, separating the stem cells from the blood. On the very first day they will check to see how many stem cells were collected, very rarely they will be able to get enough on this first day, in which case they will add a new medication (injection) called Mozobil that will help detach the cells from the bone marrow, making it easier to collect even more, further preparing you for better collection the next day. You go home, do another injection of neupogen, come back again to the hospital, get hooked up to the machine for another 6 hours, try it all over again, they check to see if they have enough, and if not… you get the injection again, and repeat. You get the idea, if not, you do it… you guessed it, once more! 🙂
In total this transplant process will be approximately 5-7 days depending on how it all works out. (Of course the travelling, sitting, stiffness, central line, allergic reactions, etc) lol When you’re having the collection on the machine, you have about a cup of blood outside the machine, you may feel dizzy, the calcium levels in the blood can drop, it can provoke heart arrhythmia’s or seizures, because I have pheo this is a bit of a concern because I already have a stimulus from my heart, it may cause symptoms of a higher intensity, it’s important for me to note these symptoms so that they can give me calcium right away so that my pheo doesn’t go crazy while I’m having the transplant. Piece of cake 😉
The second part is that we hope I won’t actually need these stem cells back, we are ultimately hoping I will never need them.
As complicated as it is to go through all of these preventative measures, and as much as I am not looking forward to all of this, I am grateful that my doctors are intelligent and diligent enough to prepare for such complications. This way if ever something did happen, I have a better chance at survival should this major complication occur.
However if in the case I would need them back, in theory a transplant back to me is much more intense. At that point theoretically my bone marrow would be empty, and they would be giving my stem cells back to me in hopes to fill it back up, in doing so to prepare for this they would have to give me chemotherapy, not to treat my cancer, but to suppress my immune system even further to put stem cells in. I would be transfused with my own stem cells after being treated with the chemo for about a week, it would take anywhere from 10-14 days for them to actually re-grow in my body, and about a week to recover, so this whole process would take approximately over a month without complications. (YUCK)
This is all hypothetically speaking, in a theoretical world, after MIBG radiotherapy, if my bone marrow were to be impacted, and I were to actually need the transplant back… this would be the result, and again, as I am a person who likes to know what to expect, I am very grateful to have had this explained to me in advance so I can know exactly what to be up against should this happen. There can be many other surprises and complications, this is just one of them, so it’s good to be prepared for at least one big one.
With the amount of organ toxicity and bleeding and all of the complications just in relation to bone marrow failure, they have to warn of at least a 2-3% mortality rate, in my case because of everything else combined with the stress of having pheochromocytoma, it’s unknown at this stage of what it would be. Of course with any complication, any procedure, any surgery, there’s always risks and mortality rates, but for some reason I just wasn’t really thinking of mortality rates at that point, so I was a bit thrown off guard when I heard that. I was mainly thinking about how radiotherapy was going to improve my life, not potentially end it before I had a chance to see how it would potentially help/increase my odds, but that goes with the territory, it’s an unfortunate part of this disease, always being reminded of death possibly being just around the corner. Regardless of how simple something is intended to be, it’s always so complicated by the rarity of this disease, and that is the struggle of living with metastatic pheochromocytoma cancer. Nothing is ever simple.
As with any procedural preparation regarding pheochromocytoma, proper medication blockade is one of the most important factors. Maintaining blood pressure and heart rate is crucial in controlling the symptoms that the overproduction of adrenaline causes, so being on proper medications controlled by my endocrinologist is extremely important. Even more so going into radiotherapy, the moment that the radioactive compound is injected into my bloodstream and reaches the tumours, they are going to become highly reactive – like little grenades exploding, only this time I’m going to be awake for it.
So lowering my blood pressure and heart rate in advance to a very low level is important, so when they respond like this, even when they shoot up to those super high dangerous levels – at least when they do… it won’t be quite as damaging to my body. (Hopefully) Of course there will be several people on site waiting and watching for this, and ready to control it if it does, but still! Scary stuff. Not looking forward to it. In the next few weeks I will start increasing my doses of the medications I take, to prepare for the wrath of radiotherapy … 🙂 My amazing team of doctors have my back, I’m not too worried.
This is technically unrelated to the preparation, but was something that was discovered yesterday when I had my super long day of appointments – my thyroid seems to not want to function on it’s own anymore. So that’s called hypothyroidism. Something that actually is NOT rare lol. However something that I particularly did not need on top of my pheo cancer, adrenal insufficiency, etc etc etc. So it seems I will have to also replace the hormones that the thyroid is supposed to be producing in pill form very soon, since it’s no longer wanting to do it on it’s own. We have not yet really travelled down that road yet, who knows why, it could be the million scans I’ve had, it could be a number of reasons, all I know is that it’s another failed body part that makes me have to replace it’s death with more pills, and that frustrates me a tiny bit.
Apart from that – I have this awfully horrific pain, (I have chronic pain, it’s hard not to with this massacre I have going on in my abdomen) but this new, horrifying, debilitating, sudden… pain in my ribs/back/abdomen. It sometimes can make it difficult for me to breathe, or move, or do anything but cry and freeze and yell for help. It’s quite alarming, as I have an incredibly high pain tolerance. So as this is fairly new, and so much more intense then my normal pain amount, it needs to be investigated ASAP it seems, as it could be something much worse than what I thought it was.. I was blaming it on silly old nerve pains associated with post op stuff.
Apparently not, it could be that my tumours are placed in such a way that they are pushing against something else and causing this horrific sensation, it could be they are calcifying, bleeding, or other scary things, causing this pain. It could be my liver, it could be infection inside me, of course it could be lots of things. I will need some more testing to divulge a little further into it. It’s difficult because of course the tell tale signs of things normally would include fever as a dead give away, but because I take steroids as an every day treatment to replace my cortisol due to my adrenal failure, steroids cover up fever, and many ailments with the body giving a “feel good effect” even when there is a problem. It can be very misleading… Again, enter: most complicated woman in the universe, do I get a frigging crown yet???! Because I at least want a tiara, a big shiny one. It could be nothing as well, ha ha (lololol) lalalala the line to denial land starts here, all aboard!
That’s all for now friends, I’m leaving it at that. I’ve went very honest and medically detailed on you today.. sometimes I must resort to the facts and not only my charm 😉 ❤
I will add more ‘Parts’ as they come, this is just ONE day of information…! I will certainly keep everyone updated under this segment as I navigate my way through, one day at a time.
Remember, if you have questions, ASK! If you want to share, please do, if you want to talk, it’s a pleasure.
Pheo VS Fabulous ❤
You are incredible!!! May your treatment goes as planned so you can have a less painful/ better quailty of life and life expectancy! Lots of good vibes!!! You are an amazing writer and I LOVE reading your blog I started the other night at 2 am when the kids were up sick and finished off around 5 am! Keep coming back for more posts. I ask Jenna once in awhile about how your doing…. Had I know about your blog…. Good luck
— Laura Olive
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Laura, thank you SO much for your support and kindness. I hope the kids are feeling better ❤️ I will certainly be updating more and more the minute I feel up to it, it means so much to have so many people behind me.