Thank you, jabeck79. As I posted on a different thread, my brother is currently undergoing Gemcitabine Docetaxel maintenance, after receiving BCG treatment for T1HG; obviously, his situation isn't the same as yours, but I've been trying to find information about possible GemDoce side effects, so this really helps.
For the record, my brother didn't have any side effects for his first chemo treatment; he's only getting one a month (maintenance, about the same schedule as you are on now, I gather), so I'll be interested to hear your long-term response to the treatment, too. (And I'll try to keep you posted on my brother's progress.) For now--congratulations on a clean 'scope!
Thank you for posting this. As you say it is a new approach and few patients have had experience with it. It is a lot more complicated than BCG, that is for sure. However, BCG has not been as effective in low-grade non-invasive situations as we might want. Bet it is a "bit more" expensive!!!
Congratulations on your clear cystoscopy!!! I know that is a HUGE relief.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Because of the BCG/Immunotherapy shortage many people similarly situated as me will likely have to follow a regiment of Chemotherapy for low grade T(a) Non-Muscle Invasive Bladder Cancer. A review of the forums did not produce any detailed postings concerning chemo therapy experiences for low grade Non-Muscle Invasive Bladder Cancer. Hopefully this anecdotal account will help someone who was as lost as I.
Background and Diagnosis
I am a 41 year old male diagnosed with Non Muscle Invasive Bladder Cancer T(a) low value in August of 2019. First TURBT procedure in September 2019, followed up with Cystoscopy in early January 2020, two additional tumors found. Second TURBT procedure February 2020 this time with Mitomycin wash, tumors removed T(a) low value non-invasive. Urologist recommended BCG or Chemo, however the BCG situation seemed to be evolving into non-availability at this time. COVID-19 Pandemic happened which delayed my choice of proceeding with Chemo. I had a Follow up Cystoscopy in May 2020, one (1) additional tumor found. I did my 3rd TURBT procedure in June, Ta low value non-invasive. Follow up with Urologist who indicated I need to do Chemo, and that there is no BCG to give you.
Gemcitabine Docetaxel treatments consisted of (6) intravesical chemo-therapy treatments complete with catheter. If you are opting for this procedure there is both good and bad. The good is that since this is an intravesical treatment the chemo-therapy chemicals are completely contained in your bladder, therefore you don’t have the common side effects of chemo-therapy (hair-loss, weight loss, prolonged sickness). However, the treatments are long. After arrival at the Urology Cancer Center, they did a urine test to check for infection etc.. Once you pass the urine test, they will inform the pharmacist to prepare your chemo drugs, which will take anywhere from 1 hour to two (2) additional hours, depending on how busy the Hospital Pharmacy is. You can’t start your treatment until the drugs are prepared. This was explained to me that they will not prepare the drugs in advance as you need to first clear a Urine Test. While I waited to start treatment, I saw other people coming and going with their BCG treatments. Everyone who was getting BCG had to have a buddy to share the supply with. On a good day I would get into the treatment room by 9:30 am after arriving at 8 am. I found the nurses to be very professional and adept at inserting the catheter which is something you just get used to. Once the catheter is in place they inject the Gemcitabine which stays in the bladder for 1 hour. After the hour the nurse drains the Gemcitabine and performs a wash with a water syringe. The next drug Docetaxel is injected and remains in the bladder for 90 minutes. Once that is complete the Catheter is removed and you are on your way. I usually finished around 2pm after starting at 8 am. If I had any painful urination it happened in the first couple hours after the procedure. Other than the initial painful urination I was fortunate to have very limited side-effects through all six (6) treatments. Towards treatment 4,5, and 6 there was some tiredness and muscle ache for 48 hours. It was explained to me that the side-effects of the Chemo are generally better than the side-effects and risk of infection with the BCG treatments. While I haven’t had BCG treatments, I had very mild side-effects from the Gemcitabine Docetaxel. For the Men, I wasn’t required to sit-down and urinate, or flush bleach with my urine after the procedure.
Physical Mental Health Follow Up Cystoscopy
I was fortunate to have my wife attend all six (6) treatments, we brought a laptop and watched movies during the procedure to pass the time. For the first 3 weeks, I felt sorry for myself and did not eat well. For the last 3 weeks I upped my exercise routine, weight training, biking and ate very healthy. Leading up to my September 18, 2020 Cystoscopy, I had very intense dreams, and found myself anxious. While there is robust data on BCG as a treatment there is very little information on Gemcitabine Docetaxel, so this was also running through my mind. On September 18, 2020 I had my first clear cystoscopy and cried for a good hour. I am now on maintenance (1) once a month for the next year with cystoscopy every three (3) months. It has been a rough 14 months, with diagnosis, 3 surgeries, medicine shortage, global pandemic, and chemo-therapy, 2020. I needed a win. Hopefully this helps anyone who is not offered BCG and is contemplating the Gemcitabine Docetaxel treatment.
The following user(s) said Thank You: Alan, VinceD