First BCG treatment: What to expect?

I have read there are several possible side effects. So far mine are not that bad. Hope yours will not be the bad ones.

I too have the burn. I take Phenazopyridine. It is sold OTC, got mine at Walmart. It works pretty good. Only drawback (and do not laugh) it turns your urine orange. OK you can laugh. I did the first time I peed orange. My doctor said that is normal and I can take the drug to reduce the pain.

I am on my 3rd BCG treatment.
The Tech who did the injection told me that I need to hold the medicine for at least 2 hours. They did empty my bladder for the treatment. I told them I could do that and I was let home just after the treatment. So far I have held the treatment for 2.5-3.0 hours. A bit ruff but I managed it without to much of a problem,

I had a couple side effects so far. After the treatment, for about 3 days I get very fatigued quickly. I also lost my appetite. In 3 weeks I lost 5 lbs. I force myself to eat something nutritious everyday. And a few foods like steak makes me gag. The other side effect, my blood sugar is going crazy. I am very controlled now with exercise and diet. I am a diabetic but some mornings when I check my blood sugar it is high 160-200 in the AM. Sometimes it becomes very low like 65-75. I called my urologist and he is calling me back today.

@buena, how are things going with treatment? How many sessions have you had now?

@peter51f, how are you doing? Have you been able to improve your appetite and get enough calories?

Treatments are going OK. I still get fatigued for a couple days. By the 3rd day I am pretty much back to my normal. My other health issues are still with me through.

I started writing down my glucose readings that I take each morning. Over a 2 week period 4 days I am high 185-240, 7 days my normal 95-105, and 3 days I was low 68-75. I cannot explain the swing.

Still not much of an apatite. The last 2 weeks only lost 1 lbs. My usual eating is eggs in the AM. My wife makes chicken soup which I eat everyday or canned soup. If I cut it up into small sizes I can eat some sort of cooked chicken sometimes.. I also do my macaroni for the carbs. All small portions. I do take a 30 gram protein shakes just about every day. Beef or pork is a no go still.

Thanks for asking. Had burning sensation and a tiny amount of blood in urine for a few hours after my first treatment. None after second. No discernible side effects at all. Catheter insertion and removal are the only uncomfortable aspects of treatment. I have a tee time tomorrow and am interested in seeing how my body deals with 18 holes of golf. I'm optimistic, but also wondering if treatments yet to come may yield challenges not yet encountered. Still thankful for the small amount of BCG used for these treatments. After insertion into my bladder, I could not even sense its presence. I'll include a photo of the vial as an FYI to others facing treatment. The amount is 50ML as indicated by the nurse's finger.

I had my first treatment yesterday. I really can’t point to any side effects at all. I stayed at the urologist office and used a comfortable table to lie down and change positions every 30 minutes. I kept it in for 2 hours and 15 minutes. The nurse had me urinate before I left.

I was first diagnosed in April 2024 after breaking my hip when I tripped on the curb, and fell onto the pavement in the street while checking my mail. Yes I’m accident prone….. 😂. When the hospital did my CT scan for my hip they also happened to discover what they termed a mass on my bladder. After being referred to a wonderful urologist, I’ve had 2 surgical outpatient procedures to remove the spots from my bladder lining, one of which was due to a reoccurrence of spots after a 3 month office procedure check. Thankfully so far neither time has shown any spread outside my bladder wall, But since I did have a reoccurrence, my urologist wants me to do 6 weeks of BCG. My very first one is scheduled for next week. I guess since this is new to me, I’m just asking for tips, suggestions, and what to expect from actual patients although I know the staff will be explaining some things to me. I’m nervous and not sure what to really expect. Any and all suggestions, shared experiences, or just good thoughts would be appreciated. Happy to be here and hope you or your loved one are doing well 🥰

A lot of people on this page have had BCG including myself. BCG made me very tired. No bleeding or pain tho. After 6 wks of treatments I had more tumors in my bladder. Had TURBT then had 6 wks of intravascular chemo. One time it was almost unbearable but the rest were OK. Once again I was very tired for several days after each treatment. No tumors in my bladder but my doctor had me do a CT and found a tumor on the outside wall of my bladder. I had a RC and a NB a week later. Life changing, nothing I can’t live with. No regrets.

My first BCG instillation (30%) was 9 days ago Tuesday. They are skipping a week and doing the next 5 treatments starting next Tuesday. I think the worst part was having the catheter inserted for the first time while I was awake versus under anesthesia. Also, the first time they insist you remain for the full 2 hours so laying on a hard metal table with a cloth cover was tedious. Thanks to other posts I had brought my AirPods with me and played tunes from my iPhone for the 2 hours. I really had no reaction to the first BCG but I've read where the side-effects increase as the 6 weeks goes on. After my first TURBT, I had a catheter in for 6 nights at home. The BCG experience (so far) is a walk in the park compared to that. Best wishes for a successful treatment!

Hello @lauriejw and welcome to Connect. There seems to be a wide range of individual reactions to the BCG treatments. My husband started his after a partial cystectomy and chemo, as his tumor was muscle invasive. Catheterization comfort depends on the nurse's ability and experience but application of a local anesthetic made it more comfortable for him. The first treatment we spent the 2 hours there but he had a regular hospital bed at the infusion center and was not uncomfortable. After that we left right after the infusion and he did his turning at home on the couch. He had minimal reactions to BCG, just an increase in urgency for the first 12-24 hours afterward. No burning, pain, or bleeding. He was worn out but he was also healing from previous procedures. Unfortunately his cancer was very aggressive and returned during the maintenance BCG treatments. He ended up with a radical cystectomy with Neobladder to be cancer free. The new normal now includes self catheterization 3-4 times a day and Depends at night but it's a far sight better than cancer.
This form of immunotherapy seems to be fairly tolerable compared to some others, despite the invasive catheterization. Always address any symptoms that you have with your medical team and you will get through this next step successfully. Be strong.

@jlp27
Hello
I'm behind you on this as I am having my second cystoscopy under anesthesia
next week to take a biopsy of my bladder muscle to see if the cancer invaded that or not. After the result we'll we what happens next.
Was your bladder muscle invaded?
I am not looking forward to having a cystoscopy without anesthesia but I can take a Lorazepam to relax me.