And on May 27 2015 we uncovered new tumor growth. Since I've been through 18 cycles of Temodar my neuro-oncologist recommended a new drug cocktail (new to the glioma world but old to the cancer world), PCV - Procarbazine, CCNU and Vincrystine. 6 cycles lasting 6 weeks each were prescribed, and to close I am going nuclear with radiotherapy.
PCV requires a series of dietary restrictions (no foods with tyramine), so I had to eliminate from my diet my favorite staples - cheese, chocolate milk, yogurt and cold cuts were all gone from my diet for 2 weeks out of every 6.
Diet aside I tried to maintain my exercise routine and was able to keep it intact through nearly the whole Summer, but as Fall came I felt nauseous towards the end of a bike ride. To make matters worse PCV was lowering my platelets to dangerous levels and I had to leave my bike in the garage.
As the treatment progressed my platelets kept dropping and in my last 2 cycles I had to delay the start of chemo to enable my platelets to come back to a safe level.
Finally in early March 8th 2016, following the end of my chemotherapy, I went to Philadelphia to prepare my proton therapy. Preparation means making a mask that enables the proton beams to be radiated to the right spots. In the process I also had an MRI and for everyone's surprise I had a new tumor-like image on the tip of my spine, on the right basiocciput. Given the speed at which this new image occurred my neurooncologist, Dr. Jan Drappatz, quickly scheduled a consultation with Dr. Paul Gardner, an experienced neurosurgeon that operates with a technique developed at UPMC - EEA, or endoscopic endonasal approach, to do a biopsy of the newly found lesion.
By March 23 I was having a surgery, and I could not be more pleased with EEA. Basically the doctors inserted an endoscope through my nose and navigated through my brain to get to the tip of my spine and remove as much of the new lesion as possible. The doctors were able to remove 50% of it, a more aggressive resection would have meant losing my ability to move my tongue, and that would be a terrible blow to my quality of life.
To everyone's surprise I have developed a very rare condition - LCH, or Langerhans Cell Histiocitosis. This condition only impacts 1200 people a year in the US, and luckily UPMC has 2 doctors specialized in it.
I have not met the doctors that will help me treat LCH but my neurooncologist shared that my prognosis is good considering I only have it in one part of the body.
Fingers crossed, prayers on, and let's see what science brings me. I am still blown away that only one week ago I had another brain surgery and I am already fully recovered, with virtually no pain or signs that I had a surgery.
I have been incredibly lucky through my glioma treatment, always being at the right place at the right time, I really hope that the trend continues, and that science continues to evolve at light speed to soon develop definitive cures for glioma and other rare diseases such as LCH.
