I’m at treatment today and thought about something I haven’t talked much about…
I haven’t shared much about my paraneoplastic syndrome… Mostly because no one knows what that even is 😅
About eight years ago when I was completely off cancer treatment, I began declining neurologically. At first it was gradual, but over the course of two years, things ramped up quickly. I started experiencing:
• Nerve and muscle pain in my hands
• Trouble swallowing (dysphagia)
• Blood pressure swings/tachycardia
• Tongue tremors and weakness
It all sent me to the Mayo in Rochester where I spent a month going through just about every test you can imagine: CTs, PET scans, MRIs from head to toe, EMGs, nerve conduction studies, spinal tap, skin, muscle, and fat pad biopsies, sweat test (brutal), autonomic testing, respiratory testing, and endless labs. I saw specialists in oncology, neurology, immunology, rheumatology, cardiology, and physical medicine.
A lot of the tests did come back abnormal and yes, I did have multiple myeloma, but my tumor burden was low, it was not enough to explain my symptoms. Nothing led to a definitive… yet.
Finally, a sharp rheumatologist at Mayo Clinic mentioned he’d seen similar neurological issues in other blood cancer patients. Something clicked. My team back in Dallas agreed, and I restarted treatment. I began improving. We adjusted treatment again and even more relief. But after five years of this, I was exhausted and needed a break.
Then came a stem cell transplant, which I hoped would be the answer.
But it didn’t work. That was devastating.
I’m now back on treatment, and while it’s helping, I still don’t have full relief. After years of searching, we finally have a name: T-cell–mediated, antibody-negative paraneoplastic neurological syndrome. (Yes — it’s a lot.)
Basically, my immune system, while trying to fight the cancer, started mistakenly attacking my nervous system. Because I don’t have the usual autoantibodies doctors look for, it was incredibly hard to diagnose. But my neurologist and hematologist agree it is most likely my T-cells that are doing the damage — especially to my motor, autonomic, and cranial nerves.
Next month, we’re starting a new neurologic treatment alongside my cancer care, and I’m really hoping and praying 🙏 it works.
I truly appreciate your continued prayers! And if sharing this helps even one other person going through something similar, it’s a win. I really believe this condition is often missed or overlooked in cancer patients.
Thanks for sticking with me through this long journey ❤️