Thanks for your input. I think I am taking a good route here. They now tell me since I have finished the 6 intravesical treatments they want to do 12 21-day cycles with GC of systemic chemo. If it fails and I need surgery, so be it, but I will have tried!!!
Your story is similar to mine without being out of the country. blood in he urine sent me for tests. everyone was sure it was a UTI but on Feb. 20 I was officially diagnosed with a high grade invasive tumor after 2 TURBT. I have completed 4 rounds of chemo with the same drugs you mentioned. it was done weekly out of the hospital weekly over 16 weeks. Tthe Gemzar was relatively easy for me, but the Cisplatin was horrible. I had a very good response to chemo and am meeting with my surgeon to determine what surgery will be recommended. Waiting until mid September ....
I am currently on an extended 8-month stay in Vietnam with my wife of 44 years and have been splitting time between US and Vietnam for the last few years. I am a retired US Army CW4 who grew up in Saudi Arabia with both parents afflicted with bladder cancer, but in theor late 70s and mid 80s. I am now 64. One day in late May I had red urine, but we were leaving Danang shortly so I waited a few weeks until we got to Dalat, when it happened again and I immediately went to the local hospital in June.
1st, blood in urine prompted blood work and Ultrasound. The Ultrasound report stated I had a Bladder Stone, which I did not agree with so I insisted on a CT, and it reported a bladder tumor. Then in July I went to Saigon for the Cystoscopy. There were 2 different groups of tissue specimens sent to 2 separate laboratories. The first one received stated Transitional Cell Carcinoma, Low Grade. The second stated a higher grade problem. Next, I had the operation (TURBT - partial cystectomy)which resulted in the samples for Post Op Partial Cystectomy. I know I have Stage 2 Bladder Cancer, but the surgeon assured me that the tumor had not grown through the muscle of the bladder. I am still waiting for the Operative or Surgical Report. As part of the surgery, I had my first of 6 weekly 1-2 hour intravesical chemotherapy treatments with Doxorubicin (Only 2 more to go), to be followed by 6 monthly treatments. In addition, based on partial cystectomy pathology, I will report for systemic chemotherapy with Gemcitabine and Cisplatin tomorrow. I will also discuss radiology options and sampling local lymph nodes for any potential spread. Their goal is to try to preserve my bladder whilst stopping any possible spread of the cancer to avoid the need for a radical cystoprostatectomy.
I am comfortable with treatment here - they are following NCCN protocols, but the system is different. I was hospitalized for 18 days for the cystectomy and 3 intravesical treatments and will be hospitalized again for the systemic chemo with doctors and nurses monitoring my reaction and treating as required. I like this better than dealing with it alone at home with my wife getting more and more upset with my discomfort. Good food is readily available and she has a very good support network here of family and friends and I am part of the group as well. So my stay will be extended this year from 8 to 11 months to complete treatment. If we are unable to get satisfactory results, I will face losing the bladder and I would either return to the US or go to Bangkok (Bumrumgarand) or Singapore for that procedure.
What am I missing? Does this plan make good sense? What should I look out for? I'd appreciate any help. I've definitively known I had cancer on July 6th and have had the TURBT with partial cystectomy and 4 intravesical treatments since then and start chemo tomorrow, so I have tried to learn a lot in a very short time. I'd appreciate feedback from all of you.