Madison, Chris, and Colleen traveled to Boston and met with Mass General Hospitals (MGH) multidisciplinary team of chordoma experts: Dr. Francis Hornicek director of the center, Dr. Thomas DeLaney the director of proton radiation therapy, Dr. Edwin Choy medical oncologist and principal investigator for clinical trials, along with nurse coordinator Al Ferreira RN, and nurse practitioner Anne Fiore. This is the A-Team... individually and as a team, awesome!
While I.V. based chemo seemed unlikely, the tumor board and medical team determined that based upon the limited data available given the especially rare type of the already rare one in a million chordoma cancer, the best odds to prevent a recurrence and reduce surgical complexities includes I.V. (vs. pill form) chemo as part of their recommendation. Dr. Choy's role is 70% research and 30% practice. He explained that from a clinical research perspective he could put Madi on a pill regiment that would further his research, but there is no data to support that any of the emerging chemo drugs would reduce the tumor size or simplify surgery. He's recommendation is to treat her aggressively with traditional chemo.
The 2014 plan in brief:
All that said, off to the Hope Lodge on Friday 11/15 for a tour. It's an amazing facility in Boston that has 40 individual mini-suites. There are four large communal kitchens, a very large dining room, public living rooms, a library, an exercise/yoga room, and a small movie theater. The Hope Lodge is sponsored by Astrazeneca for people staying in Boston for outpatient treatment. This would offer Madison the opportunity to be around peers while having some privacy, with her folks working remotely in a nearby hotel.
A heartfelt thank you to everyone your support and prayers. The experts at MGH are awesome and Hope Lodge is amazing. We hold our heads up with your love, support, faith and determination understanding this will be a fight, and knowing who will win...
Team Madison
While I.V. based chemo seemed unlikely, the tumor board and medical team determined that based upon the limited data available given the especially rare type of the already rare one in a million chordoma cancer, the best odds to prevent a recurrence and reduce surgical complexities includes I.V. (vs. pill form) chemo as part of their recommendation. Dr. Choy's role is 70% research and 30% practice. He explained that from a clinical research perspective he could put Madi on a pill regiment that would further his research, but there is no data to support that any of the emerging chemo drugs would reduce the tumor size or simplify surgery. He's recommendation is to treat her aggressively with traditional chemo.
The 2014 plan in brief:
- 3 months chemo
- 2 weeks rest and recuperation at home
- 2 days at MGH setting up proton radiation molds
- 2 weeks at home awaiting the 'go'
- 5 weeks proton therapy in Boston
- 3 weeks rest and recuperation at home
- 3 weeks in Boston. Surgery and rehab
- 4 weeks rest and recuperation at home
- 1 week chemo and 3 weeks proton therapy in Boston
- 2 months chemo at home
All that said, off to the Hope Lodge on Friday 11/15 for a tour. It's an amazing facility in Boston that has 40 individual mini-suites. There are four large communal kitchens, a very large dining room, public living rooms, a library, an exercise/yoga room, and a small movie theater. The Hope Lodge is sponsored by Astrazeneca for people staying in Boston for outpatient treatment. This would offer Madison the opportunity to be around peers while having some privacy, with her folks working remotely in a nearby hotel.
A heartfelt thank you to everyone your support and prayers. The experts at MGH are awesome and Hope Lodge is amazing. We hold our heads up with your love, support, faith and determination understanding this will be a fight, and knowing who will win...
Team Madison
