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 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.
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 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.
Hello everyone -
I had my first Adstiladrin treatment 15 days ago, and am still experiencing a significant level of fatigue, requiring a nap of an hour or more midday. Has anyone else had this experience? Thank you.
Hello everyone -
I had my first Adstiladrin treatment 15 days ago, and am still experiencing a significant level of fatigue, requiring a nap of an hour or more midday. Has anyone else had this experience? Thank you.
Interesting. I had my first treatment on March 11 and had fatigue and fever immediately after the treatment and then felt fine. Then this week, Monday, I thought I had the flu but symptoms, fatigue and a headache, have gotten better each day after. I don't know if I have had a bug of some sort, if it is the treatment or simply the fact i have not been able to exercise, etc.
Interesting. I had my first treatment on March 11 and had fatigue and fever immediately after the treatment and then felt fine. Then this week, Monday, I thought I had the flu but symptoms, fatigue and a headache, have gotten better each day after. I don't know if I have had a bug of some sort, if it is the treatment or simply the fact i have not been able to exercise, etc.
Fran,
Follow-up cystoscopies are clear after three of four Adstiladrin treatments (praise God), so treatments appear to be effective (with minor side effects).
Best wishes.
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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.
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1 ReactionThanks David.
@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?
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1 ReactionMy 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 ReactionsI 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.
Hello everyone -
I had my first Adstiladrin treatment 15 days ago, and am still experiencing a significant level of fatigue, requiring a nap of an hour or more midday. Has anyone else had this experience? Thank you.
Interesting. I had my first treatment on March 11 and had fatigue and fever immediately after the treatment and then felt fine. Then this week, Monday, I thought I had the flu but symptoms, fatigue and a headache, have gotten better each day after. I don't know if I have had a bug of some sort, if it is the treatment or simply the fact i have not been able to exercise, etc.
I hope that, if it is one of the responses from the initial treatment, it won't recur after the second and subsequent treatments.
Dave
I have only recently heard of Adstiladrin, does anyone have results from treatment yet?
Thanks
Fran
Fran,
Follow-up cystoscopies are clear after three of four Adstiladrin treatments (praise God), so treatments appear to be effective (with minor side effects).
Best wishes.