Tiredness after BCG

Hi Bob, I’m sorry you’re feeling tired after BCG I was fine a couple of days later, I’m thinking 3 months down the line may be due to something else and not the BCG but I could be wrong. You must have had a cystoscope after the first 6 and all’s well?  I’m not sure what to advise you as everyone reacts differently to BCG, tell your nurse when you go how you’re feeling. Wishing you good luck x

Hi Bob and welcome to the group. Sorry to hear you are feeling wiped out. I have not experienced BCG, but I know what fatigue is like. I was affected for about 3 months after my radiotherapy finished. As Sue says, always best to check with the medics if you are not feeling any better. Best wishes.

Hi sue. Yes I had a cystoscopy on the 6th of April and was all clear. Thankfully . I did tell my consultant how tired I felt that day and he said it’s normal as it’s an immunotherapy. However anothemonth has passed and I’m still feeling the same. I got another 3 treatments starting soon so il tell the nurse then and see what she says. Was just kind hoping someone else has experienced the same me. Thanks for you’re comment tho

Hi Bob2, as Sue says after a dose of BCG I have sometimes felt flu-like and wiped out for a couple of days , other times I feel almost no side effects at all.  But I have read about so many different reactions, it really does vary from person to person. I had doses 13-15 in March and since then I have noticed my immune system struggling a bit. I caught a cold I couldn't shake off, and now it's gone I feel like I may have an under-lying UTI. Our poor old immune systems have a big job to do.  I'm going for a routine flexi cystoscopy on Tuesday so i will tell the team, and they always test for infections. In the meantime I am trying to maintain my hydration, with BCG I truly believe the key is to drink, drink, drink! Do you have a CNS nurse? Mine is absolute magic, and I can phone any time I feel anxious. 

Hi ,  I completed my first 6 BCG treatments at the beginning of March.  I had mine on a Wed morning and was too busy going to the loo so frequently for the rest of the day, couldn't rest!  I did the school run Thurs morning, then went back to bed and slept from 10am until 2pm!!!  In time for the school run again!  Friday I was back on my feet, but still had an afternoon nap that day and most days for the rest of the week.  I was lucky as I stayed off work during this time.

I'm back at work and looking after a young family, I still get very tired.  Can't remember the last time I was out in the evening with the school mums.

I was back in for general anaesthetic and biopsies recently, so that has knocked all of my energy again!

Take it easy, if you can get a day off here and there and just sleep!  (Not sure if that's unrealistic!)

Take care

Thank you for that. I thought it was only me who suffered for this long

I had 6 hour chemotherapy session on Tuesday. Only half hour next week. This will be my last session. My oncologist warned me that fatigue pay increase as treatment progresses. Simply no energy but otherwise I feel good. Taking short walks every day helps. On good days managed a bit of gardening. Any worries ring your dedicated nurse. Mine is brilliant for advice and contacting others on your behalf. The staff at Leicester Royal cannot be praised enough. They all have a caring attitude and do a brilliant job. I am waiting now to here about going on to the Atlantis trial. This is a course of tablets taken at home to reduce the risk of tumours returning. A CT scan after 3rd chemo cycle showed my tumours had shrunk. Another scan expected after the 8th cycle so not long to wait. Hope all goes well for you. Try being positive. It certainly helps us to cope with the ups and downs of treatment.

I’ve been positive for the last 3 months Richard lol plus I’m still going to work as a self employed painter, so I don’t think I need to go for walks. As I walk all day lol but I appreciate you’re comment. I got another 3 treatments starting Monday so il talk to the nurse then.

Hi @bob2 ,

Good luck Monday for the start of your next 3 treatments.

My next 3 are not until July.  I'm just hoping that 3 weeks will not be as bad as 6 weeks in a row, as that got a bit tough towards the end!

Hi Catcat, 3 in a row is definitely easier than the first 6 not the least because it's half as many visits to hospital, which cumulatively get tiring.  I'm afraid the response to each dose is unpredictable. Some I find I have no reaction, others it's 48 hours flu. But it's holding my cancer at bay.  xxx