Meeting with my Sarcoma Specialist from the Mayo Clinic

I wanted to share with you what was discussed with my sarcoma specialist this morning. My local oncologist told me that I was stable. My sarcoma specialist agreed that to the naked eye, there has been little to no change in my tumors. However, his radiologist did find some minimal growth in my tumors in my pelvis. The tumors in my lungs and in my spine are stable according to him. I have three main tumors in my pelvis. One, the midline mass is stable at 5.8 cm. The big one in the left side of my pelvis is now 10 x 8.5 x 7.9 cm. Four months ago, it measured 10 x 8.2 x 7.4 cm. The tumor on the right side of pelvis sidewall is 3.8 cm up from 3.6 cm. My Mayo doctor and I had talked at length about how we would proceed if things started to grow a couple of years ago. Both he and I consider this stability. Once my tumors have grown 20% (that was the number we agreed on), we would look at a different treatment. Because I am not curable and on palliative care, my treatment is to extend my life but also to give me the greatest quality of life I can have for the longest possible time. So, we will continue with the same treatment I am on now. I will be decreasing my dosage of blood thinners by half the next time my script is filled which won’t be for another 3 months or so. He gave me permission to use the sauna, which I will start doing. I couldn’t do that with the other chemo I had been on because it caused my body to react to both excess sunlight and heat. We both agreed it may help with the stiffness and soreness in my joints. I will probably go physically up to the Mayo Clinic to visit with my sarcoma specialist the next time…in late May or early June prior to moving to Montana, as he has only met me in person once….in March of 2020. He is aware that we are moving, and he looks forward to working with my new oncologist. Anyhow, even though there was minor growth in two of my main tumors, he considers this to be stable and I should keep doing what I am doing. Just wanted to share the nuts and bolts of our meeting this morning with you. Love to you all!