The Next Steps

My recovery from surgery a few weeks ago is going fairly well. Each day I’m regaining a little more strength and mobility, which feels like progress worth celebrating. I don’t need Jim’s help to get in and out of bed or use the toilet!

Last week, Jim and I met with my oncologist, Dr. Ganjoo. After reviewing my scans and talking everything through with us, she recommended trying a few rounds of chemotherapy to help again slow the progression of the leiomyosarcoma.

Dr. Ganjoo confirmed what Jim and I had already sensed. There were no visible tumors in my intestines on the August PET scan, yet the tumor that caused the recent blockage measured 3.5 centimeters, and four additional new tumors—each slightly smaller—were also removed. And, other tumors in my liver, lungs, neck bone, and several other places showed significant growth and activity between August and October. Dr. Ganjoo didn’t sugarcoat things: the number of new tumors, how quickly they appeared, and their increased activity all point to clear disease progression. In short, the treatment I’ve been on for the past ten months is no longer working.

But before I start any new chemo, we have decided to do some radiation on the tumor in my upper neck (C3) vertebrae. The pain – and definitely the pain flare ups – are beyond what I can tolerate. The flare ups are debilitating for the 15-20 minutes they usually last. The treatment began on Friday and I had another session this morning. I will have three more over the next three days. We are hopeful that the radiation can knock down the tumor enough to reduce the pain.

As for chemotherapy, Dr. Ganjoo’s recommendation is to try a combination of two traditional chemotherapy drugs—Doxil and Yondelis—both of which I’ve tried individually at some point in the past 18 months. This time, she’s suggesting a combination of half doses of each. When I received them separately at full doses, the side effects were extremely difficult. In fact, after just one dose of Yondelis, I chose to stop because it was too hard on my body. Dr. Ganjoo hopes that smaller doses may reduce those side effects while still keeping the cancer at bay for a while. That’s our hope too.

This is one of the last treatment options available to me when considering my previous treatment and disease course. We hope that I can tolerate the side effects and that we can again slow the tumor growth. I already have my next PET scan scheduled for January. That scan should show whether this new combination is helping. I’ll also know soon whether the side effects are tolerable enough for me to continue.

As of now, we are still planning to go on the trip that we booked in April. We plan to depart on November 30. We have thought long and hard about whether to cancel or not. My daily fatigue is going to slow us down a lot – but I can be fatigued in Reedley or on a cruise ship … not really a difficult choice. My doctors are all in favor of it as long as I continue to feel up to it myself. Jim and I just plan to take it slow and enjoy the opportunity to see some places that are new to us.