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I have been on gemdoce since surgery to remove noninvasive high grade tumors in the neck of the bladder.

I had one major surgery and a second in which they found a tiny remaining spot. Then I had six weekly gemdoce treatments. The cystocsopy following that was clear. Then I began once per month. I am told for sure I will have it for 12 months, but I get another cystoscopy at the six month point to see how I am doing. Fortunately that month off of chemo will be in December!

So, it is basically a general regimen that can be found for high-grade non-invasive bladder cancer.

At first, I thought my hair was thinning some, but I have not seen any increase in hair loss since the first of it at the beginning. For me, the side effects include tiredness, always a headache that responds to something like Excedrin, and mostly it doesn't come back. Sometimes I have been dizzy, and/or nauseated. I sleep quite a bit the first couple of days, and do not plan anything that requires much effort or thought for the first week after the treatment.

Even though I have a month to recuperate before the next one, I still am reacting after each one. I thought it would be easier and more like the first one of the initial six-week treatment, since I have so long to clear it out each time, but unfortunately, that is not the case. One friend suggested that perhaps my immune system recognizes the chemicals and responds with more vigor each time. I don't know, but I have adjusted my expectations now for the week of the treatment and stay out of crowds as much as I can - all of the time. Otherwise, I will get small "colds" after being out in public.

I think adjusting expectations about lifestyle is one of the kindest things we can do for ourselves, since one treatment per month for one or two years is a long haul. I plan my activities around the chemo schedule and I am kind to myself. I still do therapy sessions with my clients on Zoom and still keep up with volunteer work that I can do from home (keeping organizations' websites, etc.). I just don't do any of that during the week of a chemo treatment. I rest and only do as much as I feel like doing during that week. I am in my mid-70's.

Each of us will respond differently. Having this forum is a way to feel less alone about all of this.
I think that since we generally look like we are OK, we have to protect our own needs against the expectations of others who want or need our time and attention.

Well, that is a long answer that began as a response about hair thinning!

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Replies to "I have been on gemdoce since surgery to remove noninvasive high grade tumors in the neck..."

@bethcamp your treatments seem to be similar to mine. I just completed the first sex weeks of treatment through my urethra. I then have a follow up with my oncologist December 17 for a cystoscope to determine if bladder is free of tumors. Then it is my understanding that I may have to have treatments every Friday once a month.

Each week that I had the initial treatments I felt worse each time. Did u have to hold it in for an hour each time. The last two sessions I had a rough time.

@bethcamp I thought that this treatment would be easier to tolerate than systemic chemo. Oh was I wrong. I had two days of feeling awful. I’m just anxious for the scope. Cancer is so darn scary. First experience with cancer. It was so uncomfortable and almost felt humiliated as well as fearful.