I was diagnosed with low grade NMIBC in December 2023, underwent TURBT in January 2024, had Mitomycin instilled in the bladder, then six BCG treatments. No further cancer was found until January 2025, when high grade NMIBC carcinoma in situ was found at a different location on the bladder wall. The cancer was surgically removed from the bladder wall and I received an Adstiladrin treatment nine days ago.
I had pronounced fatigue, fever for the first three days, chills, loss of taste, mental "fog" and decreased appetite. My doctor said that these side effects would lessen with time, but the fatigue continues. I am scheduled to have another cystoscopy at 75 days post-treatment, to evaluate the results. My doctor tells me the treatment will be repeated every 90 days, with no stop date. He says there is insufficient information available to him for him to determine when, or if, the treatments should end.
My first treatment was 3/11 and tolerated it fairly well. It was administered mid-afternoon and nurse told me I might feel side effects that day. Fairly mild. Fatigue and achy. The next morning I felt fine but by noon the achy feeling along with fatigue had returned and I had a slight fever. After that second day I was back to normal.
I am three years in and am not longer responsive to BCG. My doctor has recommended Adstiladrin, which I will start next week. Looking for feedback on side effects.
I was BCG refractory after initial six treatments, so urologist recommended Adstiladrin. After three of initial four treatments, I experience minor side effects, typically irritated urethra and flu-like symptoms for 48-72 hours after bladder instillation. Best wishes and prayers for your healing.
I am three years in and am not longer responsive to BCG. My doctor has recommended Adstiladrin, which I will start next week. Looking for feedback on side effects.
I was BCG refractory after initial six treatments, so urologist recommended Adstiladrin. After three of initial four treatments, I experience minor side effects, typically irritated urethra and flu-like symptoms for 48-72 hours after bladder instillation. Best wishes and prayers for your healing.
I am three years in and am not longer responsive to BCG. My doctor has recommended Adstiladrin, which I will start next week. Looking for feedback on side effects.
Going for my first treatment 11/19/24 was given pills to abate bladder spasms was told side affects minimal.
Had BCG for 3 three years CIS popped up last scoping.
Hi,
My husband had Adstiladrin last week. 6 days ago. He is having significant fatigue, headache, chills, fever and body ache.
Has anyone here had those symptoms, and if so, how long did they go on?
Thank you.
Thanks. Oxybutynen tried but I started it late on 1st day. More than anything it’s been the frequent urination that’s still hanging on. Doc says it’s normal so I guess I need to quit whining!
Connect
Connect
Like
Helpful
Hug
I was diagnosed with low grade NMIBC in December 2023, underwent TURBT in January 2024, had Mitomycin instilled in the bladder, then six BCG treatments. No further cancer was found until January 2025, when high grade NMIBC carcinoma in situ was found at a different location on the bladder wall. The cancer was surgically removed from the bladder wall and I received an Adstiladrin treatment nine days ago.
I had pronounced fatigue, fever for the first three days, chills, loss of taste, mental "fog" and decreased appetite. My doctor said that these side effects would lessen with time, but the fatigue continues. I am scheduled to have another cystoscopy at 75 days post-treatment, to evaluate the results. My doctor tells me the treatment will be repeated every 90 days, with no stop date. He says there is insufficient information available to him for him to determine when, or if, the treatments should end.
My first treatment was 3/11 and tolerated it fairly well. It was administered mid-afternoon and nurse told me I might feel side effects that day. Fairly mild. Fatigue and achy. The next morning I felt fine but by noon the achy feeling along with fatigue had returned and I had a slight fever. After that second day I was back to normal.
-
Like -
Helpful -
Hug
2 Reactions@fmosby, I moved your question about Adstiladrin to this existing discussion:
- Anyone treated with Adstiladrin for BCG-unresponsive bladder cancer? https://connect.mayoclinic.org/discussion/adstiladrin/
I did this so you can read previous posts and connect easily with @davidpball @rdbliven @dboh48 and others.
@fmosby, how is treatment going so far?
Thanks David.
I was BCG refractory after initial six treatments, so urologist recommended Adstiladrin. After three of initial four treatments, I experience minor side effects, typically irritated urethra and flu-like symptoms for 48-72 hours after bladder instillation. Best wishes and prayers for your healing.
I am three years in and am not longer responsive to BCG. My doctor has recommended Adstiladrin, which I will start next week. Looking for feedback on side effects.
I will let you know if I have any side effects.
Pill is oxybutyninttaken 3 days before and 2 days onand day after total 5
@rdbliven, welcome. As you prepare to start treatment with Adstiladrin in a couple of days, do you have any questions for fellow members?
@dboh48, how is your husband doing? Have the side effects lessened over the past couple of weeks?
Thanks. Oxybutynen tried but I started it late on 1st day. More than anything it’s been the frequent urination that’s still hanging on. Doc says it’s normal so I guess I need to quit whining!