Thank you all for your replies. I have had my second treatment with gemcitabine. It is not comfortable but doable. The first time the catheder was much to large wouldn't fit so we had to work that out but we did. It does burn a bit coming out but I can live with that. My tumors were high grade so I understand they do have chance of coming back.
Thanks again for your support,
2 months 2 days ago - 2 months 2 days ago#58438by Knifedealer
Welcome KIMO. I'm a 63 years young man. I had 2 low grade, non invasive tumors removed in Oct. 2018. Mitomycin C was administered intravescially (directly into the bladder) at the time of that surgery. During my third follow-up we found a very small area of recurrence. This will be removed later this month. I feel disappointed about this setback however, I did my homework and knew the odds of recurrence were high. Part of my homework included numerous visits to this forum which I found helpful and am grateful. My doctor discussed the possibility of treatment with a "chemical agent" subsequent to my procedure later this month. He noted the shortage of BCG and said gemcitabine may the alternative for me. I'm hoping the best for you. Please keep us posted.
I had 2 TURBTs early this year and completed 7 rounds of Mitomycin C (MMC) chemo treatments earlier this year.
While the whole process sounds scary in the beginning, I found the treatments and the side effects to be very tolerable. No one likes catheters, but overall the process took less than 15 minutes, and then I could go home.
I had to hold my bladder for 2 hours, and then carefully clean/disinfect the bathroom. I did find I had a lack of appetite, but I wouldn't call it nausea, and as the weeks went on I was increasingly less energetic as the day went on ..
My treatments were on Friday and I found myself tired until about Sunday afternoon by the last few treatments.
Other than that, I didn't really experience any bad side effects at all and consider myself lucky. I have had 2 Cystoscopys since, and so far nothing has come back!
I am happy to answer any questions you may have.
Best of Luck-- you will get thru this...
DX 12/2018 NMIBC T0a both High AND Low grade
TURBT 1/2/19 and 1/29/19
MMC begins 2/22/19
Thank you so much for your reply. My doctor talked to me about bcg. However since I had TB when I was a child they said I was not a canidate for it. I am scared to death. I don't like the idea of chemo but I don't want to loose my bladder either.
With non-invasive, high grade bladder cancer tumors, BCG treatments are the current standard of practice. However, unfortunately there has recently been a serious shortage of BCG (although that seems to be lessening.) During this shortage, other agents such as mitomycin and gemcitabine are being used. I would ask your urologist if there is any possibility of obtaining BCG.
For many of us, BCG has been a "cure." I have now been cancer-free for 11 years!!
If BCG is not yet available to your urologist, mitomycin or gemcitabine are useful alternatives.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society