My husband was diagnosed on July 30, 2012 with bladder cancer which they believed was in the muscle wall so we were referred to Dr. Michael O'Donnell at UIHC in Iowa City, Iowa. He started out with having Gemzar/Cisplatin before surgery. each time we would go in for treatment my husband would tell them that his back continued to hurt and they would always give him his pain pills but would never suggest doing a scan to see what was going on. in October they finally did a Ct scan and found that the tumor had actually grown and was now blocking the right ureter. They suggested putting a tube in his kidney but he refused to do so. They then scheduled surgery for Nov 14, 2012 and cancelled the last chemo. The surgery went well and they were able to do a Neobladder and remarkbly he was out of the hospital in 5 days. He went home with four tubes and finally was able to get all of them out. When we went back for our follow upmto find out the pathology reports, it was found that he had cancer in his prostate, which they took out, and 8 out of the 15 lymph nodes were cancerous so we then met with the oncologist who told us that they would do a CT and bone scan in 6 weeks. i asked if 6 weeks was to long to wait especially since there were lymph nodes thatnwere cancerous and they said no because even if they found something they wouldn't be able to do treatment because he still needs to recover from the surgery. So we waited and as the weeks went on hubby started to complain of back pain again, when he came home he had none, and this really concerned me. On January 22nd we went for our scans and follow up on his Neobladder. The Neobladder is working perfectly and there are no problems. We had the CT and bone scans and the results were devastating. The cancer had spread to the thoracic spine, pelvis, right ribs and abdomen. The oncologist told us that with chemo they would give him 6-12 months. They also have a clinical trial Atl-801 that he might qualify for and could possibly give him longer. Atl-801 is used with Gemzarand this concerned me because why would you use a chemo, again, that didn't work before. It was his decision on what he wanted to do. So we went home and tried to absorb the news and try to figure out what we were going to do. I decided to contact CTCA, Hall-Perrine and Mayo Clinic to make appointments to see what they would say and in the meantime hubby was going through cardiac testing to see if his heart was okay to do the clinical trial. We made appts with Hall-Perrine on Feb 6th and Mayo Clinic on Feb 13th. We went to our appointment at Hall-Perrine and met with Dr. Kutteh. She talked about the clinical trial and said she had concerns because the trial was in Phase 1 & 2 and when a clinical trial is in these phases it's early and they are just figuring out what doses to give people and what they tolerate. Plus she was concerned that they wanted to use Gemzar when it didn't work the first time. My point exactly! The doctor did say that we could always try a clinical trial but he would need a Phase 3 or 4, not a Phase 1 or 2. She suggested using Taxol/Carboplatin or Alimpta and we would do 1 treatment for 3 weeks and would do 2 cycles and after the 6 weeks they would do scans. If the cancer is stable they would continue to do the treatment and if the cancer had spread or grown then they would cease treatment and try something different. She also talked about radiation and we would look into that if the pain patches, she prescribed, didn't work. She wanted to know if we saw the scans and I told her they were never shown to us, so she let us see them. He has 3 spots on his spine (thoracic), 3 definitive spots on his right rib with the possibility of 2 more, 1 definitive spot on his left rib and the possibility of 2 more (UIHC never mentioned the left rib), 2 on the right pelvis and one on the left pelvis. My main concern, that I expressed to Dr. Kutteh, is that we have wasted a lot of time and that we do have an appt at Mayo and if the treatment she is talking about is standard then do we still go to Mayo. She said that the cancer is aggressive and in the six weeks it has spread quite rapidly and that we are fighting an uphill battle. She said we could still start treatment and go to Mayo but we need to start something. Hubby decided to start treatment and we go on Feb 12th and they will also give him a bone strengthening drug when he is there. I hope and pray that this is the treatment that works for him and that when we go back in 6 weeks we have good results. We are due for good test results as we never seem to hear that the cancer is stable or shrinking.
Sorry for such a long post but I've been wanting to tell the whole story and to also find out if anyone has had this treatment and if so has it worked for you and if not what was your next step.
Thank you for reading my post!
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