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Bladder Cancer Group: Introduce yourself and connect with others
Bladder Cancer | Last Active: 1 day ago | Replies (153)Comment receiving replies
Hello everyone,
I have joined on behalf of my husband. He has non invasive carcinoma bladder cancer. He had a turbst in june and in sept the cancer was back. Drs have been slow with starting any treatments. He was suppose to start BCG treatments nov 14 but they do not have availability due to the WW shortage.
Next app is dec 3 @ sloan k. For cystocopy.
As of right now sloan does not have the bcg.
I am hopeful and will insist the alternate treatment i have read about on here is used.
Nice to meet all of you.
Catherine
Replies to "Hello everyone, I have joined on behalf of my husband. He has non invasive carcinoma bladder..."
Catherine,
I’m also on the gem/doc treatment & entering 2nd year of monthly treatments. BCG didn’t work for me. So far the cancer hasn’t returned. I have some side effects but are manageable. As someone else stated you are your best advocate. I hope it goes well for your husband.
I just got diagnosed with High Grade non invasive Bladder cancer any one else out there wanting to give advice from their experience?
What was the alternate?
What kind of side effects the medication have ?
I trying to learn as much as I can. I appreciate anyone's input.
Hi there,
We were told by MSK that they didn’t have BCG back in November. Our local urologist had it though and my husband was able to start treatment. Through the nurse I heard they have another patient who had been traveling long distances (Allentown to Philadelphia)for BCG which was too difficult for him. He was able to be referred and get BCG at our local urologist as well. So maybe there might be urologists near you with BCG supply that aren’t at the major medical centers. It might take calling around or seeing a local urologist and asking for help locating BCG through their professional networks. Just a thought.
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Please ask about gem/doc combination treatment. It has been very effective for my husband.
I would imagine if cancer is observed in December, they will do another TURBT. You SHOULD start treatment no more than a month after that. I looked up Sloan K and the website states that the combo therapy is something that is offered.
My husband started off
with two rounds (12) of BCG which didn’t work for him, but the chemo did.
The doctor will give you choices and one does need to advocate for self.
Hope all goes well.