Hope on the Horizon: An Unofficial Treatment Plan

Having not heard anything yet from Emory Oncology by Friday afternoon (and growing more nervous by the minute), I thought I might attempt to reach out to my former Oncologist from 10 1/2 years ago.  Since we are friends on Facebook, I figured what the heck, why not let her know my latest status.  When she was my doctor, she actively encouraged such correspondence.  I never abused the privilege.

I contacted her through FB Messenger, informing her that I was seeking a second opinion regarding treatment for recurrence of High Grade Myxoid Liposarcoma in my pelvic area.  She was so kind and gave me her phone number and asked me to call her that evening.

Based upon that conversation, here's the treatment plan that she laid out:

1) Start with chemotherapy (mid February - June) -- 6 rounds (3 week cycles) of high dose Yondelis (a relatively new chemo agent approved by the FDA back in 2015).  Apparently Yondelis does a good job of shrinking Myxoid Liposarcomas.  Unlike 10 1/2 years ago when I was in the hospital for 5 days being infused, Yondelis is given over 24 hours via chemo backpack.  This means you get "hooked up" one day, watched for a few hours, sent home, and then return the next day for IV removal and Neulasta treatment (to better help your body make white blood cells).  Overall, the toxicity of Yondelis vs. what I had a decade ago is far less.  I should be able to (hope to be able to) work during this time.  The only unfortunate thing about Yondelis is that, because of its lower toxicity, it does not cause hair loss . . . and I was kind of hoping for that "full body Brazilian wax" look that my AIM regimen (Adriamycin + Ifosfamide + Mesna) gave me.

2) Radiation (mid June - end of August) -- She thought I would be a good candidate for Proton Radiation, though I have yet to learn from Emory if they have the bandwidth yet to treat me in the new Atlanta facility.  From what I've read, they are focused on brain and neck tumors currently, though in 6 months from now they might have room for me and my rare pelvic sarcoma.  Proton radiation would hopefully be fairly non-invasive . . . even in the pelvis area.  Note: regular radiation therapy is like a shotgun, proton therapy is like a rifle.  I do not want "old school" radiation therapy down there!

3) Surgery (October) -- Honestly, this part scares the hell out of me!  I've read just horror stories about this type of surgery, with recovery taking several months or even longer.  Wound complications are anticipated, there is a high risk of permanent sacral nerve root dysfunction, and also a high risk of recurrence as it is nearly impossible to get negative margins.  But it you don't remove it, it may continue to grow and metastasize.  Talk about a Catch-22!  Even so, my (former) Oncologist thinks very highly of my Orthopedic Oncologist and said "He wouldn't want to do that surgery if he thought it would put you in a worse place".  Furthermore, she said, "there's at least some chance that surgery might not even be necessary if the chemo and radiation do a good enough job shrinking and stopping the tumor."  I certainly hope this is case as I would rather opt out of this life-changing surgery.

Years ago, during my first ever consult with this doctor, I asked her "What is my prognosis?  What are my chances to survive?"  Her response was beautiful: "Rather than give percentages, I prefer to categorize cases as either treatable or not treatable.  And your case is treatable."  So, while I had her on the phone, I reminded her of that story and asked her the same question again.  Her response was the same: treatable.

To be clear, this was all stated over the phone and unofficially.  I am certainly not holding her to any of this.  She took the time to speak with me because she has a great heart and because she has some very specialized knowledge that may help to save (or at least extend) my life.  Both Holly and I are grateful for her encouraging and insightful words.

My next appointment at Emory is this coming Tuesday morning, where I'll meet with my Orthopedic Oncologist (Dr. Monson) and find out how the Emory plan matches up with the "unofficial" plan above.  One way or another, I'm going to get my damn Yondelis and Proton Therapy!  Dr. Monson should have the lowdown on the nasty surgery details.  He is an amazing surgeon, but it's going to take some convincing to get me to sign up.