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BCG Fatigue

8 months 1 week ago - 8 months 1 week ago #56539 by Msheno
My husband was dx with bladder ca in Sept 2015, 71 years old. He has HG bladder ca and at first had urine in blood and we found the first tumor. Did surgery, and went for 2nd opinion with ca center then did surgery 1 month after original tumor removal to make sure all had been removed. All was well. Then started BCG for the first time Nov 2015. He did pretty good. Some cramping, lots of trouble urinating and the typical burning. Cysto in Feb 2016 all good. Cysto in May 2016 found 2 new HG tumors and 2 low grade. Surgery June 2016. While in the recovery room the doctor injected 1 dose of chemo (a one time thing) into the catheter for the low grade ca. BCG treatment in July 2016, same, some cramping, lots of trouble urinating and the typical burning. Cysto Oct 2016 all good. Cysto Jan 2017 white fluffy scar tissue didn't allow doctor to see around the whole bladder so did surgery Feb 2017 to check out the bladder thoroughly, did bx but no ca. Cysto June 2017 all good.

Cysto Oct 2017 no ca but did surgery Nov 2017 after seeing area that looked like hematoma, found fistula that lead only to the fat level, didn't go all the way through the bladder all still good. Cysto April 2018 all good. Two years ca free at this point, Praise GOD!! Then blood in urine :( Aug 2018, Cysto Sept 2018, surgery for two rectangular red raised areas Oct 2018, HG cancer again. Started 3rd set of BCG Dec 2018. #1 BCG date of 6, not too bad, cramping and burning. But taking Advil, AZO, Tamsulosin and Oxybutynin. #2 BCG date of 6, really rough. Not sure why. Running fever, severe difficulty urinating the first 24 hours, extreme fatigue, nausea, sharp pain, zinger type, in tip of penis off and on, burning with urination, bladder cramping, loss of appetite and leg cramps. #3 BCG date of 6, asked nurse to use smaller catheter size #12, I suggest EVERYONE ask for it from now on out, why use #16 because it's standard, that's crazy. It made a huge difference and it doesn't cost anymore than the larger one. Still had cramping and burning, fatigue.

We skipped the next week, it was Christmas week and his doctor said it would not hinder things. #4 BCG date of 6, still much better using #12 catheter! Still trouble urinating, burning, cramping but fatigue much worse. Extreme fatigue to the point of laying around all the time, too weak to pick up feet good, sometimes stumbling :( Decided our daughter and myself will do everything possible around the house etc, so that he will rest more and not get himself into a bad situation. We still have 2 more to go. But the reason we are still doing BCG is because it works. Even though it comes back in other forms & shapes he was ca free for 2 years and this is a high grade bladder ca he has.

My husband refuses to remove the bladder because they will also remove the prostate and all the lymph nodes. Too much major surgery for his age. Though his doctor disagrees. His doctor said it would be a 5 hour surgery and 6 days in the hospital and 2 months to recover. So for now, we will keep going. Praying for his safety along the way until he can finally be past the 6th BCG. If anyone knows a remedy for the fatigue, please share :)

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