Posey's Story
Posey was an inspiration. Words like loving, dependable, caring, funny, and resourceful only touch the surface. She had a strong faith and had no fear of death, but the things she did fear were dependence and disability. She was a caregiver at heart and cared for many people, but she never wanted to be a burden on others.
Bewilderment: The Initial Symptoms
On March 21, 2017, she developed ataxia – a fancy word for balance issues that can accompany many illnesses, including vertigo and strokes. Several days later she began vomiting uncontrollably.
The initial diagnoses was peripheral vertigo, but tests eliminated that possibility in less than a week. Nothing could halt the vomiting or restore her balance. Oral medications would not stay down; when given by IV they had little or no impact. Patches used for seasickness were of no value. Doctors suspected a possible virus or small stroke, but those diagnoses were ruled out by MRIs or the passage of time. Posey required multiple IV sessions just to maintain hydration.
After about three weeks, as her severe vomiting and other stomach disorders and her ataxia continued, she began to develop other stroke-like symptoms such as slurred speech and blurred vision. Swallowing became more of a challenge. Multiple specialists were consulted. There were no answers.
Hope: The Diagnosis and Initial Treatment
About six weeks after Posey’s first symptoms, her primary care physician ordered a test to measure the level of CA-125 an ovarian cancer marker in her blood. The simple blood test showed that Posey’s CA-125 was 607 (the normal range is zero to 35). A visit to the oncologist confirmed the presence of ovarian cancer and Posey was scheduled for surgery at Moffitt Cancer Center a month later, on June 7. By the time of surgery, Posey had lost 35 pounds, from 152 to 117 pounds.
To patients and their families: Early diagnosis is vital. Talk with your physician as soon as neurological, stroke-like symptoms appear about tests to determine whether this is part of the immune system’s response to an underlying cancer.
Immediately before surgery, Posey’s neurologist concluded that a paraneoplastic syndrome accounted for the stroke-like symptoms and recommended an immediate series of IVIG treatments while she was at Moffitt. Posey’s family received this diagnosis with hope (“We finally know what is wrong!”), but also with uncertainty and apprehension. What was this mysterious disease?
The surgery was successful in removing the underlying tumors, but the cancer had spread. Following surgery, though, the vomiting had stopped. Posey’s strength improved. Her stroke-like symptoms seemed to stabilize and perhaps slightly diminish. She was discharged and began to go to the gym to renew her strength. Optimism was the prevailing mood.
Posey’s chemotherapy sessions first began six weeks after surgery. In retrospect, this was far too late, as the aggressive cancer had the opportunity to spread again. By the time of the first chemo session, Posey’s CA-125 was 614m, actually higher than the level at the time of the diagnosis. The clear take-away is:
“Time is brain.” For PNS victims, immediate and aggressive treatment of the underlying cancer is imperative. Brain cells once destroyed may be lost forever.
To patients and their families: please consult with your doctors about the possibility and benefits of early and aggressive treatment of the cancer – both surgical and otherwise. To oncology surgeons: even if scheduling immediate, emergency surgery might not be dictated by the patient’s cancer and health profile, please consider the disastrous effect of continuing loss of brain cells in setting the surgery schedule.
Posey’s chemotherapy drugs included carboplatin, which had an adverse effect on my wife’s appetite from which she never recovered, leading her to stop eating virtually all types of food.
To patients, their families, and their doctors: the treatment of a PNS victim should be holistic in considering medicines that are effective against the cancer and as harmless as possible for the neurological conditions. This will be hard in each case as the competing benefits and drawbacks are weighed.
Ultimately, the surgical treatment of the cancer was successful. Ironically, however, the continued degeneration of Posey’s cerebellum caused her death albeit indirectly, after she had “beaten” the cancer.
Posey’s decline occurred notwithstanding many advantages that victims may not have:
1. Round-the-clock caregivers, who assured that she did not fall or injure herself, who helped her bathe and remain clean, and who instituted a very good regimen of sanitary conditions preventing her from contracting the flu or other illnesses;
2. Private physical therapists;
3. Strong and loving support of family and friends
4. Exercise equipment.
Posey could thus convalesce at home with constant care and attention.
One of the Foundation’s goals is to work with Moffitt and a PNS director, to make some funding available for those who cannot afford the benefits that Posey had. Thus, if a program were to be established, it should include support for PNS victims, with private foundation funds being available.
The Foundation’s goal is, at the very least, to reduce the agony of the next group of PNS victims and, hopefully, to assist in a small way in creating true success stories.
