BCG side effects impact on success
I recently had my third BCG installation for high grade NMIBC, following two turbts (tumors removed in first, no residual cancer in second). With this third treatment, I had slightly elevated temperature and was super fatigued, but felt fine the next day. Is the absence of side effects any indication that my immune system isn't responding to the BCG? Of course, I have three more to go, and I understand one's reaction can change with subsequent treatments. Is there research on this topic to anyone's knowledge?
hi. How are you? I am not medically trained but from what I have read of the experience of others, side effects vary a lot from person to person and as the treatment sessions progress. I have not seen any link in those having less side effects having any more or less success with the treatment. Wishing you well for the rest of your treatment. Laura, Moderator, BladderCancer.bet @laurelg - I have not personally had BCG but have read many posts from those going through BCG. It seems to affect people differently. Some have side effects and others do not. I would not worry at this time and just hope that the treatment works. I have read that fatigue or some effects for a day or so is common. Please keep us updated on how you are doing. My best to you and prayers coming your way that this treatment is successful. Linda Urbanski ( moderator, Bladdercancer.net team member)
Hello!
Congratulations on your courage and bravery to fight this disease! I applaud you and your willingness to share and contribute to the greater bladder cancer community at large.
My Mom had 6 rounds of BCG as her first-stretch of treatment. Each time, she had reactions. She would feel itchy and urgency while BCG was in her, and slight burning or discomfort immediately after. By the evening of the treatment, she would start to feel flu-like symptoms. Those would alleviate within 3 days. She usually felt great the morning of the next treatment, and the cycle would start all over again.
All that being said, the cancer came back. We ended up moving to chemo infusions, which I will be sharing more of Mom's story. Suffice to say, the BCG did not work for Mom. However she felt a ton of side effects and reactions.
Therefore, I don't think side effects or reactions are necessarily an indicator of efficacy. However I am not medically trained. Best to speak with your doctors, or multiple doctors if you can. Sending you all the best to crush this nasty disease!
Charles (Moderator / BladderCancer.net)
Hi laurelg, I've had 12 BCG treatments at 1/3 dose. Besides having trouble holding for 2 hours at first, I had no bad side effects until # 10, I had a cough, and it was during Covid so I had to delay # 11. # 12, I got a bad rash on my lower legs, and between my doctor at UNC-Chapel Hill and Dr. Michael O'Donnell, who is an expert on BCG, they decided that due to all my other allergies, I shouldn't get any more BCG. That being said, I'm still NED and it will be 2 years since I had my last BCG treatment in August. That is also when I go for my next Cystscope and Cytology check-up, as I'm on every 6 months now. Dr. Michael O'Donnel and Dr. Lamm have said in an interview that side effect or no side effect doesn't indecate how well BCG is doing. Best wishes for your treatment and here's to NED!
