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?!

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sunny98 | @sunny98 | Jul 1, 2023
In reply to @talltxlady "Hi @Sunny98, I'm so sorry your daughter is going through BC. Thank God she has you..." + (show)
@talltxlady

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 🙏🌞❤️‍🩹

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Do you also have severe pain in all of your bones since starting BCG? She hurts all over all the time and her dr says it’s not the BCG causing it yet that’s when it started.

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1 reply
talltxlady | @talltxlady | Jul 1, 2023
In reply to @sunny98 "Do you also have severe pain in all of your bones since starting BCG? She hurts..." + (show)
@sunny98

Do you also have severe pain in all of your bones since starting BCG? She hurts all over all the time and her dr says it’s not the BCG causing it yet that’s when it started.

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No ma'am. No servere bone pain.
I'm so sorry she's going through this.
What does her doctor recommend? Another type of doctor?
Prayers her pain will subside 🙏

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chrissiebee | @chrissiebee | Jul 4, 2023

I had bladder cancer also, did not penetrate the wall but it was a rare type of cancer caused from radiation I had from a metastatic endometrial cancer I had growing on my outer colon and hip bone 20 years ago. That type of cancer I was told tends to come back early so I go for blue light cystoscopies every three months. I had chemo for 6 weeks once a week and then once a month for a year. I did not get BCG treatments but two chemos into the bladder. My last one was in April. I was always fatigued. I thought this would improve once I stopped chemo but it did not. I went to my primary care and told her how I felt. She ordered blood work and found 4 red blood cell tests were low and diagnosed it as anemia. I was told to take over-the-counter medication for a month. I researched a lot about anemia and discovered it took about three weeks of taking iron before I saw an
improvement. That's just what happened. I realized in week three how much better I was feeling and now I'm into week five and going for blood work this week to see the results. My oncologist brushed me off when I mentioned fatigue. That's just not their specialty so I suggest going to your primary care doctor and have her test your blood. Good luck and God bless.

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1 reply
sunny98 | @sunny98 | Jul 4, 2023
In reply to @chrissiebee "I had bladder cancer also, did not penetrate the wall but it was a rare type..." + (show)
@chrissiebee

I had bladder cancer also, did not penetrate the wall but it was a rare type of cancer caused from radiation I had from a metastatic endometrial cancer I had growing on my outer colon and hip bone 20 years ago. That type of cancer I was told tends to come back early so I go for blue light cystoscopies every three months. I had chemo for 6 weeks once a week and then once a month for a year. I did not get BCG treatments but two chemos into the bladder. My last one was in April. I was always fatigued. I thought this would improve once I stopped chemo but it did not. I went to my primary care and told her how I felt. She ordered blood work and found 4 red blood cell tests were low and diagnosed it as anemia. I was told to take over-the-counter medication for a month. I researched a lot about anemia and discovered it took about three weeks of taking iron before I saw an
improvement. That's just what happened. I realized in week three how much better I was feeling and now I'm into week five and going for blood work this week to see the results. My oncologist brushed me off when I mentioned fatigue. That's just not their specialty so I suggest going to your primary care doctor and have her test your blood. Good luck and God bless.

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Chrissie,
Thank you so much for your reply, I really appreciate it. I sure hope your blue lights continue to be ok. I will remember this about the red blood cell count for future just in case she has to do the chemo. It’s so wonderful to have this group to learn and share with. What a remarkable and beautiful blessing and gift to have you! ❤️ Im so sorry you’ve been through so much.

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1 reply
chrissiebee | @chrissiebee | Jul 5, 2023
In reply to @sunny98 "Chrissie, Thank you so much for your reply, I really appreciate it. I sure hope your..." + (show)
@sunny98

Chrissie,
Thank you so much for your reply, I really appreciate it. I sure hope your blue lights continue to be ok. I will remember this about the red blood cell count for future just in case she has to do the chemo. It’s so wonderful to have this group to learn and share with. What a remarkable and beautiful blessing and gift to have you! ❤️ Im so sorry you’ve been through so much.

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In googling quite a bit about anemia, I read that it's not uncommon for cancer patients, pregnant women, and children to have it, especially those undergoing chemo treatments. If as you say she is "SO TIRED", then a simple blood test is all that's needed to determine if the cause of her fatigue is, in fact, anemia. I wouldn't hesitate in the future to get my blood checked for that because it could be a fairly simple cure.

Thank you for your kind response. How difficult it must be for you to see your daughter have to go through this. Stay strong. I'll keep you and your girl in my prayers for a full recovery.

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1 reply
sunny98 | @sunny98 | Jul 5, 2023

Thank you Chrissie! She had blood work done a month ago and not anemic at that time. Probably should get another one.

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sunny98 | @sunny98 | Jul 5, 2023
In reply to @chrissiebee "In googling quite a bit about anemia, I read that it's not uncommon for cancer patients,..." + (show)
@chrissiebee

In googling quite a bit about anemia, I read that it's not uncommon for cancer patients, pregnant women, and children to have it, especially those undergoing chemo treatments. If as you say she is "SO TIRED", then a simple blood test is all that's needed to determine if the cause of her fatigue is, in fact, anemia. I wouldn't hesitate in the future to get my blood checked for that because it could be a fairly simple cure.

Thank you for your kind response. How difficult it must be for you to see your daughter have to go through this. Stay strong. I'll keep you and your girl in my prayers for a full recovery.

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Chrissie Thank you for your prayers!! I appreciate it. Yes im terrified. My cancer was rough but it was me. It’s harder to see my baby girl go through this. Some days I can block it out and others days i fall to floor sobbing terrified until i can get ahold of myself. Thank you! 😊

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rjlpool502 | @rjlpool502 | Jun 21 11:00am

I am also a patient at MAYO and just finished my first 6 BCG treatments 2 weeks ago and am finding I am very fatigued as well. Mine started after the 4th treatment but got much worse following the 6th. Beginning to worry myself about it and plan on sending as message to my Dr. on the portal and maybe a visit to my Family Dr. to see if I need to get checked for other things. Hope your situation gets better and will post my results too.

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