This changes everything.
After the AIM chemo last winter and surgery in March, the hope was that the nature of my liposarcoma would change. Instead of being dedifferentiated, it was hoped that recurrences would be rare and would be mostly well differentiated, which is a less dangerous subtype.
Then, we found a dedifferentiated tumor in November. It responded well to high dose radiation, and the hope was this was a "one off", an anomaly that could be irradiated, removed, and not a sign of things to come.
But, the two new tumors have changed that thinking. The surgeon has occasionally gone into surgery and found a web of tens or hundreds of tiny tumors. Surgery cannot really work in this case, and systemic treatment is better. The surgeon doesn't have any reason to suspect that I have a huge number of mini tumors, but the additional 2 tumors have indicated to him that surgery alone isn't the answer. We need to knock this down at the systemic level, which means chemo.
There were a number of chemo options considered. First is a CDK4 drug (this targets a common genetic mutation found in liposarcoma. The 2 most commonly mutated genes are CDK4 and MDM2, and so far, MDM2 targeted drugs haven't panned out) still in clinical trials at Sloan Kettering.
Next is a common pair of chemo drugs known simply as gem/tax. This is often used for pancreatic cancer, and for prostate cancer as well. But, it has a success rate of about 31% against dedifferentiated liposarcoma, where success is defined as a shrinkage of tumors by at least 50%. I had about the same chance of success with AIM and it worked, so perhaps this would work as well.
There is another clinical trial that was an option, but they are not accepting new patients right now.
Votrient was an option. And, more AIM was also a consideration, given that it has worked for me in the past. But, it's a tough chemo and it's tough on the patient's heart, so the thought was to hold this magic bullet for down the road, if needed. There are a few other chemo drugs out there, but they tend to be tertiary in nature - used when all other options are gone, and the goal is simply to extend life when the disease has become incurable or uncontrollable. We aren't there yet, so those drugs will have to wait their turn, and I hope to never see them.
After my doctors talked yesterday, they came up with this plan:
- Cancel the surgery for now.
- Start me on gem/tax, bi-weekly
- After 8 weeks (4 rounds), do a CT scan
- If it's working, do 4 more rounds
- If it's not working, switch to the CDK4 trial at Sloan Kettering
- After the tumors have responded to one of the chemo options, perform the surgery to remove the tumors
One thing that I don't like about this is pushing my surgery to the summer. I really treasure my time outside in the summer - hiking, biking, fishing, walking the dog, etc. So, to be in surgery and then recovery from surgery in mid-summer won't be fun. But, I don't really have a choice right now.
So, no surgery for now. And, I have to hope I can defy the odds with a second chemo cocktail.
Chemo starts tomorrow. There's no time to fool around with this stuff.