Good evening. I do hope your father is feeling ok. The chemo is a tough one. Important for him to get his strength after chemo and before the operation. One of the most important Issues for me about learning to live without the bladder was my stoma nurse. I was referred by my surgeon at brighams to a stoma nurse there. She marked the spot that was for the stoma. She talked to me for an hour and gave me such important information. She showed me products that were very helpful. Is your father getting a neo or a I/C (bag)? I have the I/c. The surgeon is the best person to speak to about choices. All my best to you and your father. Laura.
Thanks so much Laura. Are there any at-home changes you made or helpful products you could recommend my father to get so he can transition to a bladder free life more easily? I hope this doesn't come off as a silly request. Just want to pass along some advice that might make his life easier. I'm so thankful to you and all of your help, Laura.
I am glad to answer any questions you have. Yes it is a very rare and aggressive cancer. I honestly wanted to just get the cancer out of me. So after chemo my operation was 6 weeks later. They did the robotic surgery done by dr Trinh at Brighams After surgery it is exhausting and I had to be patient regarding pushing myself. But walking and eating small meals helped. Quality of life is very good. I feel so good and my strength is back and I am with my family I have adjusted well and I am so happy to be alive and no one would know I have been through All this when they see me. It takes time and patience.
Happy thanksgiving to you and your family. My best to your father. I understand how he feels. You are going to a wonderful hospital. Any questions just ask. Laura
My father is going to Dana Farber with Dr. Kibel. He's got one more 3 day round of cisplatin and etoposide. He was only scheduled for 4 rounds though. Dr. Kibel stated that they will be taking out his bladder and prostate while he's there. When we went to MSK and consulted with Dr. Herr another fantastic bladder surgeon, he stated that there was a chance they could do a bladder sparing surgery. That being said, Dr. Kibel is of the mind that this cancer is so rare and aggressive that he doesn't do bladder sparing. My father and I are both feeling the same way with Dr. Kibel of Dana Farber. What has your quality of life been like without a bladder if you would be open to sharing with me. Most of these messages I pass on to my father so I thank you for replying to my posts.
I want to wish you and everyone on here a Happy Thanksgiving. Congratulations Laura on your CT scans. Keep up the good work and all the good news!
Yes that is the same chemo regimen I had. I was not in touch with MD Anderson. Dana farber knew of the studies there. 4 rounds I had to have a replacement chemo of carboplatin instead of the cisplatin because my kidneys could not handle the strength of the cisplatin. But my kidneys were doing fine after the 4 th round so my 5th and 6th round I was able to take the cisplatin. The chemo was very successful. Waited 6 weeks and then I had the radical cystectomy. What hospital is your father going to? Just had my 1 1/2 year ct scans and no evidence of disease. Take care Laura
I'm glad to hear you're recovering well Laura. Thank you so much for your reply. My father started chemo. I had contacted the bladder cancer specialist at MD anderson and my father got an additional consult with MSK. What was your chemo regimen btw? What it anything different than the Cisplatin Etoposide regimen? Just curious if MD anderson had any differing opinion.