My latest PET scan shows a few new spots in my bones and the older spots are more active, so it’s time to move on. As part of this clinical trial, now that I’ve had progression I’m allowed to move to the other arm and start taking TDM-1, the trial drug. This is what I wanted to do months ago, I guess I just had to take the long way around to it!
I don’t know the details yet about when I’ll start, they may ask for a waiting period so all of the Navelbine is out of my system. So, what is so great about TDM-1? Well, large clinical trials have shown that folks on TDM-1 have no progression for an average of 9 months rather than the 6 months of Tykerb/Xeloda. Overall survival of patients who took TDM-1 was 30 months compared to 25. These numbers seem small, but they are actually big news in cancer treatment. Dr. Gralow has patients who have been on TDM-1 for years. YEARS.
Dr. Gralow tells me that there are really hardly any side effects. This is, of course, not the story you hear from women on the message boards! Funny what doctors think is no big deal can be a very big deal when you are the one living with it… But, there is no hair loss and very little nausea. Most women report fatigue, aches, cramps in hands and feet, low platelets, etc. There are a few women who have posted about being really sick 4-5 days after infusion. Another woman reports nothing but a runny nose. So who knows, but it sounds like overall it’s a very tolerable treatment.
TDM-1 is an infusion only once every 3 weeks, which is awesome compared to every week. I’m getting really sick of going to the cancer center, so any break from that will be welcome.
So, I am now waiting to hear when I start TDM-1 and whether or not I should get a new port during the waiting period. Hopefully I will get those answers this week so I can work on my new schedule and get things planned!