BCG Side Effects and Complications

I'd like some advice and info from anyone who can help. My father was diagnosed with Bladder Cancer in November. Lives in Holland so it's difficult to get answers to my questions. First TURBT was in December all went okay, another 4 weeks later to check for scarring etc. Then the BCG Treatment started, 6 week course. The first 3 were fine and then he started getting really sick with the treatment. Vomitting, high fever, weakness, loss of appetite. He was given antibiotics but same thing happened on the 4th and 5th treatment. By the 6th treatment he was so sick he was not able to dress himself as his been so weak. He was taken to A&E and had a seizure in the waiting room, stayed one night was given more antibiotics and fluids and then sent home. They said they won't be continuing with the BCG but won't know the options until we get some results in a months time but his in such a bad way. Struggling to walk with joint pain, very down and depressed as he needs so much help and support with simple tasks. Is this normal after BCG? How long will he be feeling like this? Has anyone had a similar experience? What other treatments have you had and were they successful. Sorry for so many questions, I just don't want him to suffer anymore.

  • Welcome to the forum Peter although I'm really sorry about the side effects your dad had from his treatment.

    Hopefully other members who have had BCG treatment for bladder cancer will share their advice and experiences with you soon but do give our cancer nurses a call if you feel having a chat with them about this may help as well. You can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Wishing your a dad a speedy recovery and all the best for the next part of his cancer journey.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Peter,

    I’m 57 and was diagnosed with non-invasive bladder cancer mid to late 2018 and under went removal of the lumps soon after, my hospital were fantastic.

    I’ve since under gone a 6 week BSG treatment and just completed my second batch of 3 week BSG treatments.

    The BSG was administered in the usual way, via a catheter, but my experience is one of generally only suffering the side effects for 24 hours after.

    I attend hospital on a Tuesday morning, have the treatment, then return home to rest. I lay on my bed for minimum one hour turning over approx every 15 mins to allow the chemical to line my bladder. Approximately 1.5 - 2 hours after returning home I start with the very frequent visits to the bathroom for that day.  This follows with blood in my urine from late morning through to late afternoon. These frequent bathroom visits are painful to say the least although it’s more like an adrenaline rush than a pain rush! Approx tea time (5-6pm) the bleeding reduces and generally this has all but cleared by bed time. During the day I do feel lefargic with aching joints (flu like) and generally feel tired.

    I make frequent visits to the bathroom through the night following treatment resulting in feeling tired next day, I also experience some blood clots in my urine in the morning. 

    That said I’m back to work following day, I find it a good distraction to any lingering feelings from the treatment.

    I imagine everybody reacts differently to the treatment but it does sound like your a Dad has had a rough time of it!!

    All the best

    Ken

     

     

  • You don't say how old your father is but my husband (74) has had 15 BCG treatments and really no side effects at all.  So, no, in my opinion, that is not normal.

  • Thanks for this encouraging post x

  • Just had my 5th Intravesical BCG ....Grade 3Ta TCC Bladder Cancer

     

    Worse side effects yet..lot of clots and scabs for two days after .......very lethargic and fatigued

    One more to go from the initial Induction Course and lets see what happens....wont know until Cyscoscopy whether its done any good.

    Had Chemo for a Grade 3 Cancer in the Ureter and that was cleared but moved into the bladder 

  • Session 6 now completed and will have a flexi in approx 6 weeks time to consider the condition of the bladder . 
     

    The 6th session was not as painful as the 5th but there was and continues to be scabs and clot coming away ... all cola brown colour in urine for 8 days now to so guess I need a full six weeks recuperation . Very fatigued and fuzzy headed still. 
     

    Is the reason for six weeks to allow the area to heal? Hope the tiredness begins to improve soon 

     

     

  • I had 15 installations of BCG in 2019/2020 when at the fifteenth installation the catheter cut me and the BCG went straight into the blod stream as a result it made me very ill and I was admitted back into hospital for a week. What went undiagnosed was that over the past year the BCG has given me a Tuberculosis varient and attacked the Thorasic vertebrea in my spine at T11/T12. Ths now needs surgery to bolt and pin the spine before it collapses. They stopped the BCG and I am now on special antibiotics for nine to eighteen months. I had all the symptoms you have had plus night sweats and then it affected my liver. Be sure you get tham to check for spineal issues if you get back pain which may mean a scan and biopsy.

     

    Hope you feel better soon. John

  • I had 15 installations of BCG in 2019/2020 when at the fifteenth installation the catheter cut me and the BCG went straight into the blod stream as a result it made me very ill and I was admitted back into hospital for a week. What went undiagnosed was that over the past year the BCG has given me a Tuberculosis varient and attacked the Thorasic vertebrea in my spine at T11/T12. Ths now needs surgery to bolt and pin the spine before it collapses. They stopped the BCG and I am now on special antibiotics for nine to eighteen months. I had all the symptoms you have had plus night sweats and then it affected my liver. Be sure you get tham to check for spinal issues if you get back pain which may mean a scan and biopsy.