Feb 17, 2011 Latest post:
May 20, 2022
In February 2011 at a routine checkup Timm’s doctor discovered a hard mass in Timm's abdomen that turned out to be a massive retroperitoneal liposarcoma (soft tissue sarcoma). This rare, very aggressive cancer required aggressive treatment: a compound resection, which is a radical surgery with huge margins. Timm lost not only the tumor but a kidney, an adrenal gland, part of his large and small intestines, muscle tissue, and tissue on his aorta. A week later Timm underwent emergency surgery to drain septic fluid. Once he was well enough he went through radiation and one of the toughest 6-cycle chemotherapies there is. After this treatment ordeal Timm apparently remained cancer-free for nearly 5 years, despite suffering permanent nerve damage, kidney damage, and ongoing fatigue.
At what he expected to be his final visit with the oncologist, where he would receive a clean bill of health—what Timm calls his “get out of jail free card”—the doctor instead reported that two “spots” had been found. Six months, several CTs, a biopsy, and a PET scan later, one of the spots was found to be sarcoma. Surgery to remove this small tumor was scheduled for October 5, 2016. A PET scan did not show any additional cancer, so the surgery was expected to be curative.
Things turned out not to be so simple. When the surgeon went in, he ended up needing to take much larger margins than anyone expected. Plus, the pathology of everything he removed, even the farthest margins, came back as sarcoma. This despite the fact that the surgeon said all that tissue looked normal, aside from radiation damage. Follow-up pathology from Mayo clinic confirmed that Timm has high-grade sarcoma throughout his abdomen.
In addition to all this, Timm ended up needing to return to the hospital when a postoperative fistula formed in his large intestine (which has been partially resected as part of the margin). The end result was that Timm had to have a colostomy, since the colon was too inflamed and swollen to connect. In the process of two hospital ordeals, Timm lost over 20 pounds. As of this writing he is beginning to gain back weight and strength. The future course of treatment is still being determined.
Update 2020: Timm has been in clinical trials for stage-4 sarcoma since 2018. In December 2019 he had another massive tumor removed. While the surgeons were working on him, they were able to reverse his colostomy. He has regained some weight and has taken a break from treatment. His most recent PET scan will determine next steps.
For the latest news, go to the Journal section of the site.
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