*The below story is Sydney's updated story, as she presented it at the 2017 Chance for Change Game Night.
I was diagnosed with TTP in 2008 after my mom took life-saving action by seeking out a 3rd opinion. I was extremely lucky to not have experienced heart attack, stroke or kidney failure due the delay in diagnosis.
I have successfully fought TTP 7 times so far with plasmapheresis and the blood from 700 donors, spleen removal surgery (last Jan), chemotherapy, and immune suppression medication.
We still don’t have a targeted treatment for TTP. This means that in addition to Plasmaphersis which siphons off the bad stuff in my blood and replaces it with donor blood, we have used medications to suppress my whole immune system, not just the part misbehaving. Since I was relapsing almost yearly, this treatment became a constant. Suppressing anybody’s natural defense against infection and disease has consequences, but we were out of any better options. We knew that we were playing with fire, but TTP crisis was acutely dangerous.
Last year I told you that the consequences for me had come far too early. I had Stage 3C Melanoma and had completed an intense 8 hour surgery to remove and reconstruct my left upper back and 6 weeks of daily radiation. It was not pretty, but by last Christmas I was exhausted and we were hoping that we had caught the Cancer in time, and that the Cancer battle was done.
It wasn’t. We weren’t. Just days after last year’s event I learned that my Cancer had metastasized to my lungs and lower right abdomen. Only 1 year previous, I would have been looking at surviving another 11 months. With the TTP diagnosis, I would not qualify for a trial to test new therapies, and there wasn’t any good course of treatment available for Melanoma. Luckily, a miracle immunotherapy chemo drug had recently been approved. We crossed our fingers that I would be one of the 30% that responded. Not only did we hope that I was one of the lucky ones whose own immune system would be stimulated to fight the Cancer, but that this immune stimulation would not trigger a TTP relapse which could prove irreversible or deny me further access to the Cancer fighting drug.
I can’t begin to explain what this past year was like. I was extremely lucky to have the unwavering support of my husband Alec. And my friends were life savers. The Cancer diagnosis enabled me to tap into the amazing support services available to Cancer patients, things I dream of having a version of to support those dealing with TTP.
I was dealing with dueling diseases whose treatments were in direct juxtaposition. The lack of control was overwhelmingly frustrating and frightening. The worst thoughts were those of leaving my daughter so young. How could I miss the rest of Heather’s life. I need to be around to protect her and to comfort her. How unfair this would be for her.
Just before Christmas this year, I was given the news that I was Cancer free. I have my life back… for now.
The hard truth is that we don’t know how long the spleen removal I had last January will hold my TTP in remission. When I do relapse, some very difficult decisions about treatment will need to be made. Every TTP treatment we have today is engineered to suppress my general immune system which in turn heightens the very real risk of my Cancer coming back. Lose Lose.
I have seen the improvement in TTP treatment especially over the last couple of years. During my last relapse the Plasmapheresis was faster thanks to a new machine, and the replacement product was safer thanks to the availability of solvent detergent plasma, in part thanks to the Foundation’s advocacy work.
But the search for answers to this terrible disease is far from over. We need more TTP research to find a targeted treatment and eventually a cure for TTP. I need a targeted treatment for TTP. When the TTP returns, I need to fight it with something new and specific. A treatment that doesn’t cause more disease and heart ache.
This event makes this research possible. Thank you for providing the TTP Community with Hope. Thank you for providing me with hope.