Mom at about 19 years old.

Becky Price

First post: Mar 6, 2019 Latest post: Jun 30, 2019

The end of January, mom started to have a lot of pain in her stomach.  She went to see her primary care Nurse Practitioner who prescribed her medication for gastric reflux/ulcers.  In two weeks time her pain was worsening, she was having some dizziness, and a constant headache.  The NP told her to double her antacids and was given medication for dizziness.  Nothing seemed to be helping, but she was scheduled for a routine colonoscopy and dad talked the GI doctor into also ordering an endoscopy.  Both came back essentially unremarkable, but by the following weekend, she was hardly able to keep anything down and dad drove her to the ER.  After about 6 hours in the ER dad suggested they do a CT scan to see if they could find anything because all other labs were not finding anything.  The CT scan found a lump on her lungs that was concerning.  

The following weekend, during an old fashioned northern Wisconsin blizzard, mom developed mental status changes and she was taken by ambulance to Medford and then to Marshfield after discovering what they thought was a possible developing brain bleed.  Over the next week in the hospital it was unveiled that she had two tumors in her brain and a lump on one of her lungs.  Biopsy results revealed malignant melanoma, with an extremely poor prognosis because it is in her brain.  The Neuro Oncologist told us that there is no cure for the cancer and stated that even with treatment, her life expectancy is only a few weeks to a couple of months.  Given this information, mom opted for no treatment and was initially sent home on hospice.

The following week, her general oncologist from Marshfield told us the cancer was a re- occurrence of her melanoma that was deemed stage 0 in 2014.  With this knowledge and a minimal amount of reading, we knew immunotherapy was a strong possibility for her.  We then scheduled an appointment with an oncologist in Wausau to get a second opinion knowing that she would then no longer qualify for hospice.  He too felt immunotherapy was a strong possibility for mom but the leptomeningeal carcinoma (many small pieces of cancer throughout her brain) made her prognosis much worse.  He stated that full brain radiation would help with that, but mom had previously told us she would not want to extend her life only to live as another person or a vegetable.  Therefore, full brain radiation was declined as it is only considered palliative and defeats that purpose of living 2-4 more years should the immunotherapy be successful.

However, she needed more testing to determine the type of melanoma.  Two more lumbar punctures, her lung biopsy sent in for more testing, and one more MRI later, it was determined that she was BRAF positive in her melanoma, her cancer had significantly increased in her brain, but she was eligible to start oral immunotherapy.  By this time, mom was very hard to direct and made less and less sense while talking with her.  A week later we FINALLY get approval from her insurance company for the treatment, but mom was almost unable to talk and was coughing when drinking water.  Dad and I (Melissa) managed to get mom to swallow the pills on Tuesday afternoon and by Wednesday we were already starting to show slow improvement.  It honestly felt like a miracle.