I was diagnosed with Stage 3 UTUC over a year ago. Tried neoadjuvant chemo but my body couldn't tolerate it after one go. Had a radical nephrectomy last June and, at the time, there was no evidence of any spread. I was told to go on immunotherapy (Nivolumab) but that was way beyond my budget ( I have no health care/insurance). Took Tislemizab instead. A few months later, after a CT scan, they noticed a small tumor growing where the kidney was. Doctor recommended 25 rounds of radiation therapy. After completing it, they noticed the tumor had neither grown or shrunk. Back on immunotherapy. A recent CT scan, however, showed some slow growth. Doc has put me on combination chemoimmunotherapy. but I had to do carboplatin and gemcitabine as history showed I couldn't tolerate cisplatin + I only have 1 kidney.
I'm an expat living in China. My family lives far away in Australia. So, I've been going thru this all alone. I have kept it primarily secret, esp. with employer, as perceptions about cancer are not very favourable in China. Will be starting a new job in August but I didn't mention anything as I still feel healthy enough to do anything. It's also quite an expense, without any insurance but you can get good value for money in China.
So, I need to do 4-6 cycles of this treatment and just found out I need to return after the 1st 8 days, each cycle, for more chemo. I wasn't counting on this. It's quite frustrating. I'm at wits end about it all. Do I just stay strong (again, I feel primarily fine) and get on with my job or do I fold and withdraw?
Love to hear any guidance you could provide....Thanks
