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Had my pathology report today and no CIS as they were suspicious about a couple of spots. Though it came back aggresive he wants to start BCG this week if possible for 6 weeks. After that he will scope in 2 to 3 weeks and do follow up BCG in 3 months. How effective is BCG for aggresive tumors? He says this path is very common but he gave me some info on the side effects of BCG. Does the side effects come on gradual or will I experience them the first time? A little nervous about how tired you get and side effects and if your completely out of commision. Thanks
I was diagnosed with TaG3 papillary tumours and a couple of CIS spots in 2008 and had one reoccuring papillary tumour of same stage and grade in 2010. After my first TURBT I had 6 weeks of BCG. My symptoms were the typical flu like of headache, muscle ache, fatigue, some bladder irritation. I also experienced digestive upset, brain fog and some depression. The side effects were cumulative meaning they steadily got heavier as the treatments progressed. Tylenol and hot baths with Epsom salts and a lot of self pampering and rest got me through it. The side effects wore off within the month and life got back to normal. I had to do a second 6 week round plus 1 year of maintenance ( 3 rounds of 3 treatments each) for my reoccurence. The side effects were much stronger and I had to up the pain killers as the muscle pain and headache were way worse. I changed drs in the middle of this and my new uro agreed to reduce the dose which helped me finish the treatments. I experienced side effects with the very first treatment. FOr me I found I was woosy within 2 hours of finishing the treatments. Since you are going into this for the first time I suggest that you have someone come with you to drive you to and from the clinic or if you are staying for the duration of the treatment drive you home until you know how the drug affects you. Others on this site did not experience what I did. Some had more bladder inflammation and pain. I only experienced bladder irritation and burning for a bit and then it wore off. I was working during the second round and booked the day of treatment off and the following two days. The day after treatment for me was the worst. I would feel like I had a pretty good dose of the flu and would sleep the better part of the day. NOrmal side effects include low fever, mild aches and chills, bladder urgency and irritation. IF the side effects get really strong I would talk to your doc before proceeding for the next one. The other thing to watch out for is blood in the urine. Sometimes the drug will inflame the bladder. It is normal to have a little blood in the urine but if it is a lot and doesn’t clear up in a couple of days after the treatment call the dr or clinic to find out what to do before the next treatment. It is OK to skip weeks if needed. I had to skip one because of a yeast infection. That made my reaction to BCG worse. Ways to combat side effects included for me drinking lots and lots of water. I mean lots (5-6 500 ml bottles at least). I also found diluted peppermint tea helpful. I suggest staying off caffeine as it irritates the bladder. The first pee out will feel like hot razor blades. They sure didn’t tell me this at the clinic the first time I went and I freaked out. Being a woman I discovered pouring cool not cold water over my area as I peed aleviated the pain quite a bit. I also washed myself carefully after each void to lessen skin irritation. I would apply Lanacaine cream to the area to help heal the skin. Keeping your urine very diluted helps reduce the “hot” feeling and reduces the likelihood of genital skin inflammation. I kept a log of my side effects so I could remember and report it if needed. I found with the brain fog I had trouble focussing and remembering. All side effects wore off 4-6 weeks after finishing treatments. I am currently almost 5 years cancer free for the origianl cancer sites and 2 1/2 yrs free for the reoccurence site. even though it was very difficult I’m glad I did it and still have my bladder. I am the veteran of 21 treatments. Doctors really vary on their protocol for BCG so it is difficult to compare experiences. IF you have any questions feel free to private email me. I hope my answer helps.
Side effects are unique to each person. Some experience them worse than others. I had very little from the BCG and could always work the next day after just taking it a little bit easy the day of. With some of the other treatments with other drugs the effects were worse, but I always was able to go to work the following day. Take it as it comes and don’t try to worry in advance. I agree with Cathy that drinking lots is a good idea. I took a Tylenol when necessary, but that was not often. Had 34 treatments over a 2 1/2 year period of immuno (BCG) and chemo (Mitomycin and Gemcitabine). My cancer did progress to muscle invasive from T1G3, but most does not.
All the best.
GregYogagal hoping your bcg treatments go well. I haven’t had to have bcg treatments yet but others here have and I’m sure they all have little tricks to help you get through. All the best to you.
FloGreat news, NO CIS found!
Many here have had experience with BCG treatments. They vary by person. Hoping your treatments have minimal side effects.
All the best,
BCG = Bladder Cancer Gone
JackWell, as Jack said, it is highly variable. In my case it was outright torture. But that is usually not the case. Some people just cannot handle it. I will never even consider BCG again. And it didn’t work for me anyway. But it does work well for most people. More than likely you'[ll have some difficulty with it, but the only way to know is to go for it and I recommend you give it a try.
Kiowa
Thank-You all for being there as this helps so much to be able to talk to others and not feel so alone. My friends and family are great but…. they do not know or understand how I feel and my concerns. I got my date for the 30th of November at 10:30 a.m. and they said when I get there they would have a letter waiting for me with my other dates and when my scope will be after treatments. Thanks again.
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