NFPA can have a significant and lasting impact on patients due to a lack of treatment options, which currently include transsphenoidal surgery and/or radiation.
Because there are no approved therapies for the treatment of non-functioning pituitary adenoma (NFPA), patients seeking treatment are faced with undergoing a neurosurgery called transsphenoidal surgery (TSS) and/or radiation. These treatments are invasive, risky and often ineffective in the longer term. Additionally, patients often require a complex set of medications to manage the endocrine disruption and other symptoms caused by the tumors and the side effects of surgery and radiation. At Tiburio, we believe we can do better for patients.
Ted was diagnosed with NFPA in 2007 after a series of misdiagnoses over the previous 3.5 years. Since diagnosis, he has undergone two surgeries, was hospitalized on two separate occasions in a neuro ICU and experienced renal failure and failing vision due to complications from the surgeries. Following his surgeries, his doctors require blood tests every 6-12 weeks, hormone replacement therapy, pain medications, MRI scans every 6 months to a year and regular treatment for vision loss – all of which are time consuming and cause significant financial, personal, and lifestyle burden. Ted remains in treatment today.
“I’ve been on meds due to this tumor for about a decade. There are lots of other long-term survivors like me in similar situations and whatever we are being given…is to manage your pain or to keep you sort-of-functional. It’s not impacting what the tumor is doing at all..”
In 2012, Andrew began vomiting. When a friend noticed his left eyelid was drooping, he knew he had to see a doctor. Following a diagnosis of NFPA, he had a successful TSS where most of the tumor was removed. Unfortunately, he had to return to the hospital multiple times because of a severe adrenal crisis. He continues to have a lack of energy and brain fog. Ted took a two-year leave of absence from work and is only recently thinking of returning. Though he may require a second TSS in the future, today he is managing the disease with hormone-enhancing drugs.
“At times you can feel totally in balance and feel like you can go out and run a marathon. At times you feel like you can’t even walk to the front door. It all depends on your balance on that particular day.”
Anna had a functioning tumor as a child. Many years later in 2014 she began to feel sick again, experiencing fatigue, mood changes and a mouth spasm. Following an MRI, she was diagnosed with NFPA, which she managed mostly with alternative and herbal treatments. Anna initially believed these alternative treatments led to a clear MRI scan. Unfortunately, the tumor came back and her symptoms returned. Anna struggles with hormonal effects and likens her mood swings to the feeling of being possessed.
“It’s not like a cold where everyone has the same kind of running nose. It is so various that doctors they don’t have the strength to see the patient through. We ask a lot of questions and they can’t answer [them].”
When Kathy’s child was four years old, she noticed that her period still had not returned, but she was lactating, her temper was short, her sex drive was low, her skin was dry, she was depressed, and she began to lose her peripheral vision. Something was wrong. After an MRI, she was diagnosed with NFPA.
“You are talking about a tumor that is so close to your brain.”
Information courtesy of “Living with Non-Functioning Pituitary Adenomas,” TREND Community, 10/15/18.