Some Ups and Downs

The month following Christmas has been a little bit of a roller coaster ride. The absence of Dr. Ganjoo – Kristi’s primary oncologist who has been out for her own personal family reasons – has caused some confusion and frustration. We aren’t complaining, it is just the current reality. Thankfully, her proxy, Dr. Bui, has been able to step in and provide some guidance.

Pain update: The pain management team has increased her pain meds – we learned that her previous dosages were pretty low. The increase has helped a little, emphasis on little.

Treatment update: At the end of November, Kristi stopped Votrient. She was actually quite sick with a respiratory infection; her doctor wanted her to fully recover from that before any further treatment. The last time we spoke with Dr. Ganjoo we thought she would start a new drug and immunotherapy. Remember, we were confused about beginning the Yondelis three weeks ago?

Yondelis can work to slow down disease progression, but unfortunately, Kristi’s side effects from the infusion were beyond what she has ever had with other drugs. She told the doctor today it is the worst she has ever experienced. After more discussion, Kristi asked to go back on the Votrient and discontinue the Yondelis. Our research, coupled with the doctor’s input, does not indicate that the possible benefits outweigh the side effects.

Recent Scan: Kristi had a scan on Monday, the first since September. The most concise summary of the report is “interval progression,” which means that since the last scan she has new tumors as well as tumors that have increased in size. The scan showed new or enlarging spots in the lungs, spine, and liver with other spots showing little to no change. Today Dr. Bui described it as “significant progression.”

It might sound like even the experts – Dr. Ganjoo is recognized as one of the world’s leading experts on leiomyosarcoma - don’t know exactly how or what to prescribe for treatment at this point. That’s exactly correct. While there are ideas and continued research, it’s really a game of trial and error.  Therefore, Kristi has a lot of leeway to decide how she wants to proceed. For her, the treatment that provides the best possible results while also allowing for a decent quality of life will guide decision making for current and future treatments or lack thereof.

Thank you all for your love and support.