Anyone experience extreme fatigue with BCG Treatment?

I have found out that doctors tend to downplay issues. My Oncologist didn't mention that the systemic immunotherapy (Nivolumab) would not prevent bladder cancer from occuring and she kept telling me I was doing great with no side-effects and pristine CT scans. So high grade bladder cancer was a major surprise. A smack in the head since no one said it was a possibility after UTUC, a 50% possibility. And the Oncoloist says that cancer chat rooms are not to be useful, but I find that talking helps. Doctors don't have the time.

I had blood sediment in my urine sporadically for 6 weeks after my TURBT, including the day of my first BCG treatment. My Urologist said I would be seeing more as the treatment continued. It is now 3 weeks after my 6th treatment and I am still voiding occasional blood clots. According to the BCG treatment info-sheet I should be concerned if there is blood in my urine, but the urologist says don't worry. So I sit here waiting for my July 12th scope thinking - blood clots because the the BCG treatment is killing cancer cells or blood clots because the cancer is killing my bladder cells or blood clots because the BCG is still irritating the bladder. It is frustrating that the doctors don't seem to understand that these situations are new to patients and what is a "normal occurence" to doctors is scary to patients. "Don't worry about it" really doesn't cut it at this point.

His nurse thinks it’s her autoimmune disease. This moma is so tired and worried. Thank you so much for checking in with me, it means so much. I hope you are doing well.

Hi! Thank you so much for your thoughtful reply. Im so sorry for all that you and your family is going through.
My daughter had two turbt, (biopsies and scraping) one under blue light and that is how he determined she has both high and low grade non invasive bladder cancer. Im probably just over reacting , Im so afraid her tiredness is the cancer spreading. My understanding is high grade cancer is flat and adheres to the bladder lining snd will move towards the muscle and the low grade cancer grows kinda hanging down into the bladder. She’s just really tired. Again, Thank you for reaching out and we will be sure to ask more questions. You and your family are in my thoughts and prayers. Im sorry your husband’s journey is so hard. He’s very blessed to have you by his side and i hope your own health is good. I am a survivor too and many times i’ve said i didn’t realize the things i learned and suffered and grew from would one day be a blessing so i could better understand how to help my girl. Goodluck Sue! 🥰

Good morning @sunny98. My husband had BCG treatment and into maintenance for highly aggressive invasive urothelial cancer of the bladder, but after his surgery and chemo so any tiredness from BCG didn't seem as bad as the postop and chemo period. He was a BCG failure so didn't continue with it. One thing that concerns me is the diagnosis of noninvasive from a scope but no biopsy. We go to Mayo Clinic Rochester and every suspicious scope has required a return visit for biopsy. My own 11 year battle with cancer has included some immune therapy and it is surprising how tired it makes you. Even when I have no evidence of disease, there is a new level of exhaustion that I never knew pre-cancer. Forcing yourself into a little exercise, even if just a 20 minute walk each day does help you to feel better with more energy. Also listening to your body and maybe adding in a quick afternoon nap is needed at this time. It sounds like a second opinion might be a good idea if you are doubting your daughter's diagnosis and treatment. Having records sent and scheduling a video visit can be an option also. As Linda said, keep asking questions until you are satisfied. Patients must take an active role in their care, even though sometimes that means more time the doctor and staff have to spend answering questions and explaining thoroughly. Good luck and I hope your daughter begins to feel better soon.
Susan

I'm also tagging @texascitylady @sepdvm @jayson1210 @tuck19xkrle @winter23 @rmcmullen @perky who have had Bacillus Calmette-Guerin (BCG) treatment for bladder cancer.

@sunny98, how is your daughter doing? Has she been able to talk about her symptoms with a symptom management nurse?

Hi,

I have been through my first 6 treatment BCG session for high grade NMIBC in May after a TURBT in March. A follow up scope is in mid-July. I did not have any side effects, no noticeable fatigue. I do have beta thalasemia minor, which is a hereditary disease that affects amount of hemoglobin in my blood. This cancer appeared 7 months after my right kidney and ureter were removed due to invasive High Grade Upper Tract Urothelial Carcinoma. A CT scan 1 month before the scope follow-up did not pick up the bladder cancer tumors. According to my oncologist and the urologist CT scans are not useful until a tumor is 2 cm in size. I read that there is a blue light scope procedure that shows cancer cells better than the usual white light scope.

I went through 4 cycles of Gemcitabin/Cysplatin chemotherapy (3 months) before my kidney surgery and am now on Nivolumab immunotherapy. Apparently the Nivolumab is also not effective at preventing the bladder cancer.

Ask the urologist questions - check other Bladder Cancer Websites for possible questions. Ask until you are satisfied.

Good luck, Linda

Thank you so much for your reply. We are going to primary care today and will definitely ask about that. That’s a very good suggestion. Im so sorry for all you are going through also. It’s nice to meet you!

Hi @sunny98, I'm so sorry your daughter is going through BC. Thank God she has you to hold her hand.
I, too, have high grade, non-invasive, urothelial carcinoma; and have been taking BCG treatments since my diagnoses 11.21. If I'm counting correctly, I will be taking treatments #20 tomorrow. The treatments do make me very tired also, but I also have autoimmune diseases (3). So sometimes I think my autoimmune makes bcg worse.
Does your daughter also have autoimmune? Also, has she seen another doctor for a second opinion? She may very well be going g to the biggest and best place for treatment, but different doctors are different. Maybe another doctor would run different tests and have other treatment ideas. A second opinion is always a good idea if she hasn't had one.
God Bless you both. Keep your faith and stay strong for her. You will both get through this 🙏🌞❤️‍🩹