Lots to tell! First off, I am home from Texas!!!! Its only for a week, but when I go back next week, I'll be packing up our apartment and only staying for a few days. Here's why...
Yesterday, when I met with Dr Z, he had a number of things to tell me besides what my new trial was going to be. The first amazing news he had was that they are almost certain they found the primary source of my cancer! That is awesome because until now it has been a mystery and without knowing the primary source it couldn't be treated very specifically. Dr Z, the radiologist & the pathologist all agreed on what my PS is...my pancreas.
There are 2 types of pancreatic cancer. The first is what most people know about (the one that Patrick Swayze had) that has very few treatment options, is very aggressive & doesn't allow much "time" for the patients (Dr Z said the average expectancy of a pancreatic cancer patient is only 4-6 months). LUCKILY, I have the second (very rare) type.
My cancer is still neuroendocrine, but neuroendocrine cancer (as I just recently learned) actually begins as a normal cell from another part of your body (usually the lungs) that becomes cancerous and moves to a new location in the body. In my case, some of my pancreatic cells became cancerous and instead of staying in my pancreas moved to my bones and became neuroendocrine cancer. Until now, I have been treated as though it started in my lungs since that's usually where it starts and we didn't know where it started. That would explain why I didn't stay in remission and possibly why the first trial didn't work. Pancreatic neuroendocrine cancer has a standard of care, which means it has a treatment for it!
I am still going to do a trial instead of the treatment, and I'll explain why. The trial Dr Z really really wants me in doesn't start for at least a month. And it uses the same drugs as the standard of care for my cancer along with another one. But he didn't want me sitting doing nothing for a month or more and just letting my cancer grow, so he put me in a different trial (that may also work) and put me on the list for the pancreatic neuroendocrine one. If my new trial isn't working in 1 month, he'll pull me from it and put me in the one he really wants. If it is working, then I'll just keep going with it (why quit something that works).
So my new trial only requires 1 day of chemo every 28 days & blood draws once a week (which they already told me I can do here at the Clinic). The other med in the trial is a pill and I just take it daily at home. What does this all mean for my traveling? It means I won't be living in Texas anymore!!! I will fly there once every 28 days for chemo and then come back home! I am leaving next week to go down and pack up the apartment and have my first chemo session, it will be a nice short 4 day trip. When I go back the beginning of December for my next round, I will have to be there a few days also because Dr Z will redo all my scans and tests and see if the treatment improved me at all. If it did, I keep going with it. If it didn't, I switch to the new trial (not sure what its schedule is, but Dr Z thought it was a once a month thing also).
I had several people tell me their prayers for the last week or so have been that I would get to come home to my kids (my mom was so disappointed when we found out the last trial didn't work and we might be staying there longer than we thought), this new trial got me home even sooner and lets me stay here longer :o) So prayers were most definitely answered. And I have been praying for months and months (almost a year now!) that someone would find the primary source of my cancer and finally someone did. Thank you God for sending me Dr Z!
I have been so sure that going to Texas was where I was meant to be and that it would be there that I would find my miracle. Now, I am more sure than ever.