Self-Advocacy Success
Earlier this week, I read an interesting entry posted on another lymphoma group and then contacted the writer to ask permission to share it. She wrote that her mother was diagnosed with stage IV mantel cell lymphoma in October 2006. Her mom and dad visited several institutions where the only option they were given was R-CHOP with or without Velcade. At 72, her mother made the decision that she would rather live whatever life she had rather than undergo chemotherapy and its side effects.
In December, the entire family was in Florida trying, as she put it, "to deal with the whole cancer and family support thing when I googled mantel cell AGAIN." This time new reports about Zevalin and Bexxar came up as well as this blog. The family ultimately found an oncologist and radiologist who agreed to use RIT off label as a first line treatment.
It has been 8 weeks and the PET scan shows more than 75% disappearance with only a few hot spots that are continuing to decrease.
This is a heartening story, but the most important message for readers is the writer's last statement: "My mom is thrilled - but we found the choice. RIT was never mentioned at any time at the other facilities by any of the other doctors or research clinics. You are your own best advocate with your family."
How very true....you are indeed your own best advocate.
I wish "Mom" many more healthy years and many more Decembers in Florida with her very obviously loving family!
Betsy