About nine and a half years ago, and one now defunct user name ago (Theodore Striker), I wrote a post on here about my wife being diagnosed with an extraskeletal myxoid chondrosarcoma. This is an ultra-rare cancer, with about twelve people in the US diagnosed yearly, hence the title of the post. Nine and a half years later, she’s still hanging around, but not without some fun along the way.
After 5 months of treatment (Sunitinib), Mrs.S. had a below the knee amputation because her main tumor of almost 5 inches was in her foot. It had gone largely unnoticed as it had grown because it was a soft tissue tumor that had basically grown along the instep/ arch of her foot. Because it is such a rare cancer, there is not incentive for drug companies to develop treatments to target it because there is no profit in it.
Following this, she was prescribed a different medication (Pazoponib), which stopped the progression of the metasteses (sp?) in her lungs. She continued on that treatment for about 7 years on and off (mostly on), having the dubious record of receiving the most rounds of that particular therapy on record. Since she was stable for so long, but without the nodules in her lungs shrinking, her oncologist suggested targeted radiation combined with Keytruda. Unfortunately, one of the unknown side effects of being on the pazoponib so long was that her blood became sticky, causing two clots to develop in her brain, though neither causing stroke, just the extremely unpleasant trimengial inflammation. It also apparently caused another clot that decided to find it’s way to her heart and cause a widowmaker heart attack about a year and a half ago. Thankfully, she caught the symptoms early enough, and our house is less than 5 minutes from two fire houses that she was able to get treatment with no long term injuries. A lot of blood thinners later, all clots have resolved.
On the cancer front, she does have two nodules in her lungs that have grown in the past 18 months or so, the largest being about 5 cm, and in a not great spot- near the pericardium, so we will be talking to the oncologist about treatment options next week. Enough with the medical downers though…
- In the past 9.5 years, she/ we have been able to see:
- our oldest graduate with her undergrad and Masters degrees, move to Arizona to become a teacher, get accepted into a PhD program, be with her while she had a pacemaker inserted and her gallbladder out, and with any luck, will see her turn 30 next February.
- our youngest finish high school, move to Florida, then Minnesota, then back home
- traveled a bunch, seen multiple concerts, crossed things off the bucket list, survived Covid, and generally have learned to live life for the sake of living life instead of in the quest for more things.
Not always pleasant, but when you get five years in to treatment, and the oncologist says, “I don’t know what to tell you, we never thought you’d still be here at this point,” I’ll take it.
