Hi Cynthia! I did find out that the clinical trial is in Phase 1 and 2 and they want to use Gemzar along with the drug. Gemzar didn't do anything for my husband the first round of treatment so I don't know why they would want him to use that again.
We did go for another opinion at our local cancer center and they were very helpful. They explained the Phases of a clinical trial and the doctor has the same questions that we had about the Gemzar. She didn't think at this point a clinical trial is our best option. We still don't know if we are eligible for the clinical trial as we still need to go through blood tests and other paperwork so that feels like wasted time to me which we do not have. She is suggesting using Taxol/Carboplatin or Alimpta. I've seen pros and cons of these and will need to do some further investigating. Do you know anything about these? We are fighting an uphill battle and my question to her is that we were planning on going to Mayo Clinic also but this cancer center works with Mayo so would it be a wasted trip to go and have them tell us the same thing; I don't know and I'm leaving that up to my husband.
She did show us the bone scan, which our oncologist did not, and there are more areas of concern then was told to us. As the doctor says we are fighting an uphill battle as the cancer spread quickly within the 6 weeks and the longer we wait the harder the fight. This cancer center has everything available, palliative care, social workers, dietician, phycologist and they are all under on roof.
My husband decided to start treatment because we can always go to Mayo even after we've started. They are going to start him on a bone strengthening drug and also gave him a pain patch for the pain he is dealing with.
I'm interested to hear what you or anyone else knows about Taxol/Carboplatin and Alimpta.
After about 6 years, my father has had a recurrence of his bladder cancer that has reappeared on his right ureter and maybe has metastasized to his left lung. We sent his biopsy slides to Johns Hopkins for a second opinion which was supposed to cost $250, but Dad received a bill for $655! I have been dealing with JH to tell them we did not ask for nor authorize the second $405 test, but they don't seem to care. If it says $250 on their website, then that is what they should charge. I am very unhappy with Johns Hopkins for what they have done. My Dad is 86 and his insurance does not cover a second opinion unless a doctor orders it and we did this on our own. So, on his fixed income he is now supposed to come up with $655 to pay them for something he did not ask for?? It is not right.
Just wanted to warn you about Johns Hopkins and their second opinion policies.
First off I am really sorry you and your husband have to be dealing with this.
As someone who has been part of two clinical trials you have to know that I feel they are important. But remember clinical trials are often more about medical knowledge than for potential for cure or life extension. Having said that who knows, when there was a breakthrough someone was in that clinical trial. Just be grounded in the fact that for every one that sees results there are much more that do not.
I would advise anyone thinking of doing so to ask the important questions. Know that the people involved need to recruit to get the job done they will not lie to you but you have to ask the questions often to get the answers. Clinical trials are about gathering information not about your treatment needs per-say and are often paid for by drug companies. It is your job to make sure that it is in your best interest to take part in it.
The first question I would ask is what phase is this trial?
Phase 1 trials are based on an idea and they are often checking for tolerance and dosage if it has potential they will progress to the next phase. If it is say a phase 4 trial ask them for results from the previous trials. A phase 4 clinical trial in other words might hold more potential than a phase 1.
The second question would be is this a blind trial? Some Clinical trials divide participants into groups. Some may get one drug others another or a placebo.
The third question would be what do you think the benefit could be to me if I participate? The answer could be simply to extend life a few weeks or months more.
The forth question would be what are the dangers to me. Could participation shorten my life or severely affect my quality of life?
As for consultations the only online one that does bladder cancer that I know of is MA General Hospital in Boston. Your are already dealing with some of the top now so that would not probably be of a lot of use to you. I would call MD Anderson and talk to them about reviewing your husband case. I have known cases where people were treated close to home using the protocol prescribed by a major center gotten through consultation. Also Anderson is a mecca for research and they would be a good resource in that way.
No matter what you do one of the most important things you need to talk to your doctors about is palliative care. Pain management and side effect management will play a very important part in your husband quality of life.
I hope I have not thrown to much information at you. I also hope that none of this seems to harshly put but this is a time you need the bottom line. We are here if you have more questions or just need to talk. Know that I am sending you both a hug.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Sara Anne, the trial is being offered by Dr. Vaena at the University of Iowa Hospital and Clinics. I believe the trial is being sponsored from Altor Bioscience and the drug is ATL-801. The only thing they've really offered is to do radiation treatment. The doctor told him that he basically has a year to live if nothing is done.
Do you know if some of the other centers, MD Anderson, would allow us to send them the scans for a second opinion or do we need to travel there.