1. < Bladder Cancer

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?!

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

ronnaguidera | @ronnaguidera | May 6 4:11pm
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.

Jump to this post

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

REPLY
ronnaguidera | @ronnaguidera | May 6 4:13pm
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

Jump to this post

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

REPLY
chrisrcolbert1066 | @chrisrcolbert1066 | May 7 6:03am
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

Jump to this post

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.

REPLY
1 reply
amu45sin | @amu45sin | May 8 9:43am
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.

Jump to this post

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.

REPLY
amu45sin | @amu45sin | May 8 9:51am

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.

REPLY
jiminycrikit | @jiminycrikit | May 26 9:36pm
In reply to @summerlibra "I had cranberry colored urine for over a month went to the doctor and surprise, it’s..." + (show)
@summerlibra

I had cranberry colored urine for over a month went to the doctor and surprise, it’s bladder cancer. I agreed with my doctor for a plan and underwent two TURBT surgeries to remove high grade large but non muscle invasive tumors and just had BCG treatment no. 5 yesterday. My side effects are mostly fatigue, headaches, bladder spasms. I consider this to be normal. Typical is, I’d love to plant those flowering plants I just bought but I know that would be exhausting and sap all my energy. I’d love to sign up for that 3 hour afternoon workshop or go for a walk around the neighborhood but I can tell I’d not be able to make it half way through. I’m a little hungry but fixing a dinner is beyond my reach right now. Sometimes I feel like life is passing me by however I realize patience and self care are essential through the challenges of treating my cancer. I try not to have my health be the constant topic of my thoughts during the day and every conversation. It’s hard but I am persevering and I am gentle with myself and stubbornly strong with my self care.
It is very important to have a caring doctor and medical team that you trust and feel is on your side and that you can be totally honest with. Your daughter has a loving and caring mother behind her. She can do this.

Jump to this post

Thank you so much ,summerlibra , for sharing the same fatigue that i am experiencing. Over the last 8 months I have had 3 TURBT and this coming Friday i will complete my 2nd 6 week BCG treatment.
My physical and mental health have definitly declined. I must admit that I am not being the most posotive cancer patient, however , i am sometimes boggled at the tiredness I experience. I hope for every cancer patient. That they will be able to stay posotive and active through this process. It is not easy. I have pancreas issues along with an autoimmune disease that have flared up through this process. I am hoping that a recent prescription for my depression will help a bit with my motivation and energy...just a jump start. I am going to get back on track with my higher power and try to be more understanding to myself.
I hope a pray the best outcome for all.

REPLY
1 reply
summerlibra | @summerlibra | May 27 12:23am
In reply to @jiminycrikit "Thank you so much ,summerlibra , for sharing the same fatigue that i am experiencing. Over..." + (show)
@jiminycrikit

Thank you so much ,summerlibra , for sharing the same fatigue that i am experiencing. Over the last 8 months I have had 3 TURBT and this coming Friday i will complete my 2nd 6 week BCG treatment.
My physical and mental health have definitly declined. I must admit that I am not being the most posotive cancer patient, however , i am sometimes boggled at the tiredness I experience. I hope for every cancer patient. That they will be able to stay posotive and active through this process. It is not easy. I have pancreas issues along with an autoimmune disease that have flared up through this process. I am hoping that a recent prescription for my depression will help a bit with my motivation and energy...just a jump start. I am going to get back on track with my higher power and try to be more understanding to myself.
I hope a pray the best outcome for all.

Jump to this post

Dear jiminycrikit,
I appreciate your message. I think you are already back on track in touch with your higher power.
We all seem to be able to give each other little boosts of strength by being here for each other sharing our stories. Everyone hang on, stay calm and positive, here we go, onward!

REPLY
eileeninmadison | @eileeninmadison | May 27 8:49pm

Five years ago I had BCG immunotherapy following TURBT for non muscle invasive tumor and don't recall that I had any unusual fatigue. I have just had a second TURBT for a new tumor and will do BCG again.

I would ask the surgeon about "blue light" cystoscopy and an MRI.

Best wishes to you and your daughter.

REPLY
View MoreView Less
Please sign in or register to post a reply.