My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
Tom
The trials are based on specific types of bladder cancer. My husband has T1 aggressive nonmuscle. He had to go through a round of bcg first to see how he would respond. Your doctor should be able to guide you and discuss trials based on your situation. Even though Mayo is taking only 4 I believe there will be 500 total in the trial. I think several places in CA are participating. Not sure where you are living but there are options. Hope this helps
Hi Judith. It seems as though your and my husband has the same issues. He did the 6 week BCG treatments and will wait for
3 months, then go back for another biopsy, which will be the middle of January. God be with u both as he has the tumor removed.
We are now waiting to see if he will he in the clinical trial. If you can find a location with a blue light scope please do. It picks up 20 percent more tumors. Bruce has had 2 to make sure thete have been no changes while we wait for trial. I'll keep you informed on what Mayo is doing in hope it will help you. Take care of yourself too.
Hi @judith4, I'm inviting fellow members @nvmoen@pameladstone@katydid77 and @sue225 to join this discussion to share their experiences with bladder cancer surgery with or without total removal of the bladder.
Judith, how did you husband do with the BCG treatments?
My husband has high grade highly invasive urothelial cell carcinoma, and had a partial bladder resection a year ago last September. THe mass was in a pouch off the bladder...diverticulum....so that was removed. He had one positive lymph node so he had cisplatin and gemzar chemotherapy and then started on BCG. He had a TURP last week to check on a spot they have been watching on cystoscopy and it is a recurrence. Have not spoken with the surgeon yet about next steps. At least this one was not invasive into bladder wall like the first one. Mayo Rochester has provided good care, but we have found working with the urology department is not as easy as working with ENT and Oncology, as I have for the past 8 years.
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My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
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1 ReactionHi Judith,
Can you tell me he name of the drug that will be used in the trial?
Thanks, Tom Clingan
Hi Tom @tclingan25
There are over 30 clinical trials currently open at Mayo Clinic. See this listing from Mayo's clinical trial database:
https://www.mayo.edu/research/clinical-trials/search-results?keyword=bladder%20cancer&studySiteStatusesGrouped=Open%2fStatus%20Unknown&studySiteLocations=#0c1d955fe5494ae68c25c6f1aad733c4
There are 5 that involve BCG
https://www.mayo.edu/research/clinical-trials/search-results?keyword=Bladder%20Cancer%20BCG&studySiteStatusesGrouped=Open/Status%20Unknown
@judith4, is your husband considering one of these?
Tom, do you have bladder cancer?
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1 ReactionYes, I believe one with BCG.
Yes
Tom
The trials are based on specific types of bladder cancer. My husband has T1 aggressive nonmuscle. He had to go through a round of bcg first to see how he would respond. Your doctor should be able to guide you and discuss trials based on your situation. Even though Mayo is taking only 4 I believe there will be 500 total in the trial. I think several places in CA are participating. Not sure where you are living but there are options. Hope this helps
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2 Reactions@tclingan25, can you share a bit more? What type and stage of bladder cancer do you have? What treatments have you had or will be having?
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1 ReactionHi Judith. It seems as though your and my husband has the same issues. He did the 6 week BCG treatments and will wait for
3 months, then go back for another biopsy, which will be the middle of January. God be with u both as he has the tumor removed.
We are now waiting to see if he will he in the clinical trial. If you can find a location with a blue light scope please do. It picks up 20 percent more tumors. Bruce has had 2 to make sure thete have been no changes while we wait for trial. I'll keep you informed on what Mayo is doing in hope it will help you. Take care of yourself too.
-
Like -
Helpful -
Hug
1 ReactionMy husband has high grade highly invasive urothelial cell carcinoma, and had a partial bladder resection a year ago last September. THe mass was in a pouch off the bladder...diverticulum....so that was removed. He had one positive lymph node so he had cisplatin and gemzar chemotherapy and then started on BCG. He had a TURP last week to check on a spot they have been watching on cystoscopy and it is a recurrence. Have not spoken with the surgeon yet about next steps. At least this one was not invasive into bladder wall like the first one. Mayo Rochester has provided good care, but we have found working with the urology department is not as easy as working with ENT and Oncology, as I have for the past 8 years.
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Helpful -
Hug
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