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A New and Unexpected Treatment Option

Greetings,! I've shared my story lots over the last 6 months, due to my 5th NMIBC diagnosis earlier this year. I feel I might have made the wrong decision in canceling the follow-up before the 3-month follow-up appointment. Consulting with new caregivers--in this current health system--has postponed my maintenance by almost another 3 months. I am most annoyed with myself. Nothing I can do about it now, though. My main concern has been the greater risk of recurrence since not receiving intravesical chemotherapy for prevention after my latest TURBT. Today, my new urologist recommends a 6-week gemcitabine induction round. I am feeling unexpectedly anxious. I have only ever had single instillations of mitomycin, which I didn't handle very well. So, I'd like to ask the Cheer Squad to share your experiences with induction chemotherapy, particularly with gemcitabine. Thanks for your feedback! ~Jacqueline, Moderator (, Contributor)

  1. Hi Jacqueline,

    I currently have NMIBC, intermediate risk, low grade and am being treated with a series of 6 Mitomycin intravesical treatments. I have had my cancer for 5 years and have had multiple series of immunotherapy injections (BCG) as well as different Chemo injections also intravesical.

    I had gemcitabine over a 6 week period in 2019. It was not much different than the BCG and I had very few side effects. After that I had a remission which lasted almost a year. When I had another recurrence, I had a combination of Gemcitabine/Docetaxel monthly for 10 months which just ended last May. I had a little problem holding the gemcitabine for the entire 90 minutes, but the Docetaxel immediately following was not a problem. I had some diarrhea and cramps while holding the gemcitabine, but I was fine once it was drained out. No after effects.

    I would advise you to try as hard as possible to stay relaxed during the infusions. They are not pleasant, but all in all not very painful - at least they weren't for me. I now take a 5 mg THC gummy before my mitomycin infusion. It helps me to relax and I think made a difference. The other thing which my doctors advised was to take 2 sodium bicarbonate tablets the evening before, 2 the morning of and 2 just after the infusions. I think it is supposed to make your bladder less acidic.

    Good luck. I hope your treatments go well and result in remission.

    1. Thanks for sharing your story! Sorry I somehow missed it a while back. I appreciate your suggestions for holding onto the chemo. It wasn't easy to refrain from eating and drinking prior to the last two treatments. But I was able to go the full 2 hours without a single leak the other day. And yes, it helped to stay relaxed. It also helps to keep warm, especially my feet. So, I bring my favorite meditation track and my thick MukLuks. We're winning now. Thanks again! ~Jacqueline, Moderator,

    2. my doctor wanted me to do the sodium bicarbonate too but this stuff made me sick to my stomach, which was worse than the treatment

  2. I had gone thru 2 courses of 6-BCG treatments. For most part I was able to handle - second course was little bit more bothersome than first, but usually after a day I am fine. Fluid intake plays a big role in how I feel. If I don’t drink enough fluid, it’s miserable. If I drink lots of fluid (70 oz or more per day) it’s very manageable.

    Since I still had low grade remnants, My Urologist was proposing 6 weeks of Mitomycin treatment.. When I consulted a oncologist who specializes in bladder cancer he proposed 6 weeks of Gemcidabine followed by once a month treatment for 1 year. My Urologist thinks it may be a good idea. So I am going to go thru it. From all I have read, Gemcidabine is supposed to reduce recurrence. Side effects are similar to BCG. I guess I will find out soon.

    1. Glad you managed the BCGs. I appreciate the tip on fluids. Extra hydration always helps me handle medications and procedures better. I guess we'll be walking through our Gemzar treatments at the same time. So, I wish you the best. The urologist assures me it will be milder than mitomycin. I hope she's right. Each urologist's approach to preventative treatment seems to vary, so I am curious about once a month doses for a year. Keep me posted on your progress. ~Jacqueline, Moderator ( Advocate)

    2. wishing you well with your treatment, Laura, Moderator,

  3. - we all make decisions that we later regret but you are moving forward and that is all the matters. I know of many people who have been through these treatments and all have stressed the importance of keeping very well hydrated after the treatments. I understand that they effect everyone differently. Please keep us posted on how you are doing. Linda ( moderator, team member)

    1. You are so right, . Facing forward now! ~Jacqueline, Moderator,, Advocate

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