Last Thursday I was in for my treatment. It officially marks 2 years on the trial! My doctor and I had a conversation about stopping the trial. I have been on some sort of treatment since May 2012. I am very thankful and greatful to have gotten access to this wonderful treatment!
When I signed up, originally it stated the trial would last for 2 years (possibly longer). Then it was changed to an open ending - stating until growth, adverse side effects, or the patient wanted to stop. It's a big decision! And I've thought about it a lot. I'm lucky that there are minimal side effects and I have the flexibility to make it in every 3 weeks for treatment, but at some point I feel I need to stop being the cancer patient, and start being the survivor. And maybe get 3 months between reminders vs every 3 weeks.
I know my participation in this trial is what has helped get it FDA approval! And me staying in the trial helps others. But I think my body is ready for a break!
So we made an agreement that if (when) my ct scan and brain MRI look good in a few weeks we will stop the treatment. We don't really know how much our bodies need to be trained to fight. And tricky because the 'spots' that are left on Ct scan are in lymph nodes. No easy way to find out if they are cancerous or dead tumor cells. But what we do know is that they are small and haven't changed in 2 years! (Boy how time flies...)
So stay tuned! Hope everyone is staying warm! (For those of us in the Midwest and northeast!).
Another round of winter weather hitting us today - snow then to freezing rain and back to snow!