Mitomyicin Question. Having a problem

Were you on a regular BCG maintenance program when yours came back? I am thinking that I am going to be in the 84% that has a complete disapearence of the desease if maintenance is followed that Dr. Lamm talks about. Did you have reactive arthritis that had the triad of conjunctivitis, urethritis, and arthritis of the large joints and ankles?

Good plan! I begged my uro to keep me on BCG even after having the bad reactions for the same reason. I ONLY had CIS with no other tumor and BCG is fantastic for CIS. Alas, not luck and two years later mine came back invasive.

Mike

Mike, Thank you for your concern. The first day really wipped me. However, within 24 hours all is good. Pain gone, a little urgency is still there, but I think by tomorrow I will be close to normal.
If I can't exchange ideas with any of my doctors then they are not for me because I always want to know what is happening and why. So yes I checked it with him. We are working on getting me back on BCG as statistics are quite a bit more on its side than mitomyicin. I am fortunate that I have a good natured uro. He seems to really LOVE his work. In fact, he is the uro that other uros in Miami use. He was a pioneer in the development of the neo bladder. Thanks again and hope all is well with you.

I had mitomycin. I didn't do any baking soda. I had no issues that I recall other than urgency but that was certainly better than the high fever, chills, rash, and delirium I got from BCG.

The uro may be able to give you antispasmodics. Keep the doc closely informed about any reactions. Also be sure to inform the uro about the baking soda mix you take prior to the instillation. You probably already are but nothing goes without saying around here.

Hope they are able to figure something out.

Mike

I have been wondering about my Mitomycin treatments. I've had two so far (will have 8 in total) with only a bad taste in my mouth and fatigue for a day or two after. Nothing at all uncomfortable or different in how my bladder itself feels. No urgency, no burning. It's like it's not working. I thought I'd at least feel something. It's too bad that you're having such a rough reaction. I'm sure it's miserable.

Question.....when you take your baking soda before your treatment, how much water do you use? And is it 1 teaspoon of soda each time? I don't want a lot of water so that my body starts making urine when I need it to be in a dehydrated state. I can't find that info anywhere.....how much soda in how much water. Did you check your urine ph or did the doctor?

Its morning now. Eight hours have past. I am not in such a panic as my bladder is calming down a lot. If it keeps calming down at this rate I will be human again by tomorrow. I was having to urinate desperatly when there was 1/3 of a teaspoon of urine and the pain would not cease.