BCG and fatigue

[vladmtf]

Hello,

I had 5 rounds of BCG treatment. During and after the last one I was feeling much more fatigue, low energy, etc. I also noticed that before the treatment I was feeling tired, really tired, my work hours are not very convenient, afternoon shift, not enough sleep, etc. Could it be related or just a coincidence?  Will it be beneficial to take some time off before next treatment?

Thank you very much.

[Cdn]

Probably. I suffer from severe fatigue during and after the BCG treatment and the effects do not fully subside for a minimum of three months. I am now in the 3 treatment phase of the treatment cycle having started in 2023. I am surprised you are able to work around the time of treatment. I retired close to the time of cancer diagnosis but realistically could not have continued working with the bladder cancer, TURBT or treatments.

[vladmtf]

Thank you. I will try to take time off before next treatment (May) and post if there will be a difference.

[marysue]

Hi vladmtf:

Fatigue is a common side effect from BCG treatments.  I’ve had 3 sessions of BCG following 3 TURBTs.  The first was in 2008; a set of 6 post TURBT.  Maintenance treatments were not common at that time.  After every treatment at that time, I would fall asleep for about 3 hours immediately after holding the drug for 2 hours and voiding it out.  That fatigue lasted for about 3-4 months.  I was a stay at home parent because my youngest child was also having serious medical issues at the time.  Just getting him to his many appointments and dealing with my own was a full time job in itself, never mind what side effects I had.

My second set of treatments was from 2010-2012.  It was a second set of 6 followed by 3 sets of 3.  I was working part time retail in 2010.  I was lucky that I had an understanding supervisor who rearranged my work schedule so that I had the day of treatment off and the following 2 days.  I based my request on this because of my previous fatigue in round 1.  For me at the time I pushed through working because it helped take my mind off of things. It helped that my job was mostly a desk job doing purchase orders and I had a washroom close by. My hubby was also out of work at the time so that was another motivation to keep working if able.  We simply needed the money.

My third go with BCG was awful and I had complications post TURBT. This was in October 2022.  I had retired in June 2022.  There was no way that I could have worked this time around due to as mentioned complications post TURBT and then I was not able to complete the 15 BCGs due to extreme bladder inflammation and other side effects.  The fatigue and bladder pain and  issues lasted for about 18 months this time around.  I suspect it could have been due to repeated bladder infections and a lowered immune system and being 12 years older.

The decision about working during BCG treatments is a very personal one.  As you can see from my recollections my situation was very different each time.

When I have had conversations with folks about side effects, I have always said, “You won’t know how bad the side effects will be for you until you do the treatments.”  It is not a very reassuring answer but it is the truth.  We all handle the side effects differently.  Whether you work during treatments is an individual’s choice and can be based on your diagnosis, other health issues, the type of job you have, age, financial situation etc. etc.

I’ve always told people – do what you feel is best for you.  That can be retiring early, taking a leave of absence, reducing work hours or changing jobs to a less demanding one.  The other thing I’ve mentioned to folks is “listen to your body” and be prepared to slow down for a while doing BCG treatments.  Very few people can just power through.

Many people find it hard to give themselves permission to slow down.  There is such a pressure to be all and do all even to the detriment of our own health. Cancer be damned.  It is now the time to take time for you.  Do what you think is best.  Give yourself permission to take extra naps if needed.  I have always believed that fatigue is a sign that your body needs you to slow down so it can do the healing process.

All this being said, if your fatigue remains concerning it wouldn’t hurt to get checked out by your GP or urologist i.e. blood tests etc. to make sure that it is only the BCG making you tired.  Hope this information helps.  Best of luck going forward.  (((HUGS)))

[vladmtf]

Hello, marysue,

Thank you very much for the information. Sorry to hear about your experience.

My situation is very simple, I have to work, so I will. Not too many options considering economy goes down like an iron.

Regarding tiredness. I just think, that BCG is immune therapy, so if I’m tired, my immune system is suppressed, the response will be worse. I ask urologist about it, but he didn’t give me direct answer, only that with every next  treatment side effects may get worser. I guess I have to try. Will take a week off before next treatment and see. I will post my observations.

I don’t take any medication during the treatment, only epilobium parviflorum tea. Helps me a lot with urinary symptoms.

Thank you again,

Good luck!

[Fast Eddie]

Hi Vladmtf and marysue: Thank you for your sharing about the after effects of BCG treatments. I was just diagnosed mid-Jan 2026 and had three cancer tumours (T1HG) removed four weeks ago. After a traumatic and painful four days of catheter blood clot clogging post-op, I’m now going through various scans and further biopsies before BCG treatments. Thank you for helping me anticipate what to expect. I’m 74 and semi-retired and your sharing helps me consider whether to move from semi- to full retirement.

All the best to you, Vladmtf, as you try to handle the challenge of work and post-treatment fatigue.

• This reply was modified 6 months, 3 weeks ago by Fast Eddie.

[Nightingale]

Hello Fast Eddie,

Thank you for posting your situation in the Forum.  I’m glad to hear that the Forum has been helpful to you.  For what it’s worth, I retired from full-time employment at 56.  Mostly because at that time, 16 years ago BCC was just being formed and with limited information I decided my life was more important than working full-time.  Therefore, when given the opportunity to leave the workforce, I took it and have no regrets.  I’ve had tremendous experiences along the way.

Today, I do a lot of volunteer work with BCC (Bladder Cancer Canada), McMaster University and the City of Hamilton.  I love it!

I hope this helps.  BTW, I had low grade non-muscle invasive bladder cancer and fortunately never had to have a single drop of BCG.  I am a 16 year survivor.

Wishing you all the best!

[vladmtf]

Thank you very much, Fast Eddie,

All the best to you too.

[Tana]

• Hi Vladimir;
• I had ta hi grade ( 3 years clear since last BCG Feb.2023- fatigue continued
• Got blood iron test – I was very low so got on iron supplements but it kept going low- finally now in 2026 my iron is back to normal- I switched the expensive iron supplements for an organic unsulphered blackstrap molasses that my Sho-tai health practitioner said all his clients reported raised iron levels the fastest.  It worked and am feeling much better.
• I was 63 diagnosed 2020 Sept. Told it’d be an intense three year BCG protocol with side effects( urologist did not detail as to what as Marysue said everyone is different).
• I had side effects for sure- dislike the fatigue as I’m a go getter and love being active.
• I  did retire from a stressful exhausting job when diagnosed. Had Two Turbts- had two other surgeries for suspect red spots- and had 27 BCG with side effects and infections and that darn fatigue to deal with
• i like Nightingales response-of deciding it’s my time now for total health care and luckily I was able to budget. Also for those years it was Covid time.
• And as Marysue said time to slow it down!
• Just had a 6 month cystoscopy with the all clear good news but unfortunately ended up with a severe bladder infection going to my kidney that I caught early this time getting antibiotics. I was sick for two weeks. I was rather surprised as had 5-6 years of cystoscopies with no problem. I knew  it was serious as I had that same feeling before ( fever; side flank pain; chills and dry heaving infection from a unclean catheter a nurse used to instill the BCG in 2020 and I ended up in emergency close to sepsis the doc said).

  I am so grateful the BCG has done its job and had this forum to get information and support from. Finger crossed the all clear is forever.

• All the best to you Vladmtr
• And to you Fast Eddy
• Cheers- From Tana

[vladmtf]

Thank you very much, Tana. All the best to you too.

[Fast Eddie]

Thank you for sharing. It’s been 3 months since the tumour removal and I’m due for a post-op biopsy review with the surgeon coming Thursday. At that time the doctor will work out my BCG therapy plan. Your sharing has prepared me for what to watch out for.

I hope you remain in total remission moving forward .

Eddie

[vladmtf]

Wasn’t able to get some time off before round 6. So, reaction was more intense, not too much fun.

[Tana]

Hello Vladmtf;

sorry to hear you couldn’t get time off.
You are right- that’s not fun to go through.

Hope you feel better soon.

Cheers-

Tana

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