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Anyone experience extreme fatigue with BCG Treatment?

Posted by sunny98 @sunny98, Jun 6, 2023

My daughter has mixture of high and low grade bladder cancer. She had 2 TURBT’s and has just completed the first 6 BCG treatments. Then had a scope and Scope showed more low grade cancer has come back but Dr said he believes it is working. She is SO TIRED and is two months out from last BCG treatment and getting ready to do the second round of 3 weeks and then wait a few months for another scope. Her Dr acts like if she’s that tired it must be something else. Was anyone else extremely tired like this even a few months after bcg? Also he is not requesting ct-scans, etc. i would think with her complaints he would be all over this. Im terrified. He said it is not in the muscle just from scope. . Thank you to anyone for any help or comments you can offer. We are going to a large cancer and research facility so i would think he would be a good dr?!

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ronnaguidera | @ronnaguidera | 2 days ago
In reply to @lrwants2know "I have found out that doctors tend to downplay issues. My Oncologist didn't mention that the..." + (show)
@lrwants2know

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.

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I would like to know how you are doing. My husband is just beginning his journey with bladder cancer and going in for his 4th BCG treatment after 2 TURBT surgery, 2 stents and a bacterial infection

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ronnaguidera | @ronnaguidera | 2 days ago
In reply to @chrisrcolbert1066 "It's part of it, I guess it comes and goes with me" + (show)
@chrisrcolbert1066

It's part of it, I guess it comes and goes with me

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My husband is exhausted. He got a severe bacterial infection also.

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chrisrcolbert1066 | @chrisrcolbert1066 | 1 day ago
In reply to @tgsmith "All I know is I pray my next treatment which is on Thursday is not as..." + (show)
@tgsmith

All I know is I pray my next treatment which is on Thursday is not as bad as the last, I had a hard time with it

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Yeah, Roger, that my very first treatment. No problems. The second treatment, it was horrible. I had to get cathed like four different times the nurse said my prostate was enlarge, so after the first try, she's like I'm going to have to try again. Second, try. I'm gonna have to try again after the third try and she couldn't do it. She says, I'm going to have to get the doctor I'm like, oh my God.

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amu45sin | @amu45sin | 11 hours ago
In reply to @chrisrcolbert1066 "Yeah, Roger, that my very first treatment. No problems. The second treatment, it was horrible. I..." + (show)
@chrisrcolbert1066

Yeah, Roger, that my very first treatment. No problems. The second treatment, it was horrible. I had to get cathed like four different times the nurse said my prostate was enlarge, so after the first try, she's like I'm going to have to try again. Second, try. I'm gonna have to try again after the third try and she couldn't do it. She says, I'm going to have to get the doctor I'm like, oh my God.

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I had the treatments at a Kaiser urology dept. in Denver.
The treatments were uncomfortable especially when the catheter went through my enlarged prostate.
It did not take 2 or 3 tries to get it right! Are you in a regular doctor's office, in a small town, or a urology dept. in a large city? You should not have to suffer such consequences. Change doctor? Go to a better facility? Go to a larger city?
It was not pleasant for me, but I didn't have to go through what you are going through.
6 treatments later I am not having to get up 6 - 8 times a night, and no longer have urgency to urinate.
Hang in there, and I hope things get better for you.

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amu45sin | @amu45sin | 11 hours ago

Amu45sin here.
Never experienced extreme ir even mild fatigue from BCG.
Only flu like symptoms 3 days after treatments.
I hope things get much better for her.
The BCG has greatly reduced trips to the bathroom at night, and urgency and frequency is greatly reduced for me.

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