Anyone had gemcitabine and docetaxel for Bladder Cancer?

I have high grade none invasive bladder cancer. After first TURBT I had weekly gem/doce for 6 weeks, then monthly for 10 months. The infusion time itself was awful, with almost unbearable bladder spasms. Gutted it out. Fine between infusions. Cystoscopies and cytologies along the way were clear. Then went to 3 months cystoscopies for check ups. At last cystoscopy, doc said good to go to every 6 months, but then the cytology came back for high grade urothelial carcinoma. So blue light surgery, which showed CIS. So starting over. Now with a clinical trial (Legend) of immuno/gene therapy. After first cycle (4 infusions), cystoscopy showed problem areas, so back into surgery, which still showed cancer. They've kept me in the trial, so about to start the second cycle (of 4). It's a long haul, especially when you live 9 hours from Mayo in Phoenix and drive back and forth. But I'm not ready for bladder removal. The good news is that I've always been fine between tx's. Golf, travel, ski, etc.

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!

Just had my second dose of Gemcitabine/Docetaxel maintenance dose of 5 doses taken monthly. Previously had BCG which didn’t work, then last year had the 6 weekly doses of Gem/Doc which did work.
This one has felt the worse of any, nausea, frequent urination, incontinence, and much discomfort.

I just responded to this post /ropic yesterday which speaks to gem/doc experience:
“BCG treatment done, but cystoscopy found new tumor: What next?”
I will add that gem/ doc that side effects were no worse than BCG- except the two installations each time was more difficult.
As I said in this post, my husband did not have high grade tumors the last two three TURBTS. There are always new therapies and methods, so be sure to research and discuss with your doctor.

Will be starting my first treatment in 2 weeks. Any suggestions on downtime after treatments I still work?

@grifftg07

I'm 4 weeks in gem/doce and work an office job. The process takes awhile, unlikely you'll have much time to return to work the same day. Fortunately my treatments are going well.

Had my kidney removed last week as the cancer was in the middle of the ueter and I see the urologist Monday to have my 8000 staples removed. We will talk about further treatments then. Because the tumor was encapsulated inside the ureter he thinks he got it all. Not sure I want to take that chance though. How are the treatments?

@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.

@8:bobt8 : depending on clinical guidelines systemic chemo and/pr immunotherapy will likely be advised.