Hey guys!
I finished my 2nd maintenance treatments of BCG (12 treatments) at the end of January 2026 and had major side effects all through them!
Felt like I had COVID or really bad flu, mouth ulcers, a headache that I'm still getting every now and then even now in march and chronic fatigue which I'm only just getting over. I even had to skip a week after the second treatment in the block as I was so ill I couldn't get out of bed.
After the last treatment I again ended up back in bed and after a couple of days following it I started getting mild jaundice and nasty pains around my kidneys and up one side of my body.
Today I had my second Tula procedure and unfortunately it showed two new blister type red spots. One where the previously clear site of the original tumor was and another close by. Doctors have biopsied and then lazered one off but have left the other.
Bit of a shock and sad news after all the hard work and responding so well up to this point.
Has anyone else had side effects as bad as this from the treatment?
I feel like it's never ending at the moment and am catching every cold or bug going now too.
I've been feeling rubbish and constantly ill since Christmas, of course now I'm wondering what other treatments they could offer as I'm not sure my body can cope with immunotherapy any more? Don't think I have an immune system left to actually use?
Kitty
I'm kinda terrified about the idea of them removing my bladder at this point and would rather pursue other treatments first!
I suppose a lot obviously depends on the biopsy results in a few weeks.
I originally had a G3 T1 tumor.
Kitty
Kitty.cs . Hi Kitty. Sorry to hear you are in such discomfort from treatment. Not had this myself but others here have had side effects and should be along with some support and advice. I hope your results are good and they can come up with some suitable treatment going forward. Best wishes.
Thankyou to everyone who have answered!
The support here from everyone is always so great!
All info and opinions are greatly appreciated helping me to get ready for some possible big decisions!
Kitty
