Who Knows?

By Vicki Strong

8/6/23

Vicki is a 13 year thriver

Leiomyosarcoma is a very individual and unpredictable disease, and each of our stories will be different. Treatments and responses to treatment are by no means universal. While the collective minds here are wonderful, and a great resource, we cannot give you medical advice specific to your LMS.

When someone reports many years of thrivership, often they cannot point to a single reason. My diagnosis was 13 1/2 years ago. I had many mets, surgeries and radiation in the first 4 1/2 years, and not much hope. And now more than 9 years with no evidence of disease. Why? ?? I can't help you with that as I have no answers for myself. No dietary change, no magic pills, few supplements. Just the way my disease has progressed. I guess I will accept I am lucky.

We can only share our own experiences and hope that some of what we share may be helpful as you discuss your situation with your oncologist/sarcoma specialist.

So, when you read here about someone finding great success with a specific chemo, or radiation, or no treatment at all beyond surgery, and you think it might work for you, take the information to your sarcoma specialist and ask if it MIGHT work for you. Then expect your doctor, who knows your case best, to help you make the best decision for your situation.

In the same way, when someone dies or a promising treatment fails them, while we collectively mourn, it is important to keep in perspective that it does not mean your death is imminent or that you will fail on that drug.

Not one of us (even those with 10 or more years of survivorship) can say we are cured of LMS -- only that we show no evidence of disease (NED). For now, that is our hope for all of you.

In the meantime, we continue to WORK for the cure! -- LMSDR.org