1. < Bladder Cancer

BCG Side Effects: my toughest side effect is lower back pain

Posted by jcold5619 @jcold5619, Apr 14 8:21am

I’m currently in my 5th week of BCG treatment. I’m experiencing numerous side effects, which I was expecting, and a few that I wasn’t.

Presently my toughest side effect to deal with is lower back pain. Prior to starting on the BCG treatment plan I didn’t have any issues dealing with my back.

I’m at the point now where it is almost impossible to do anything without experiencing tremendous pain.

Is this fairly common?

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

jcold5619 | @jcold5619 | Apr 30 5:33pm
In reply to @colleenyoung "Enjoy the break, @jcold5619. How is the recuperation going from the 6 treatments? How are you..." + (show)
@colleenyoung

Enjoy the break, @jcold5619. How is the recuperation going from the 6 treatments? How are you feeling today?

Jump to this post

Thanks. Honestly not quite as well as I was hoping for. Could be I was hoping for to much but numerous side effects are still with me.

Fatigue is still strong along with joint and back pain. Nauseous feeling is pretty much gone.

Hopefully I see more changes in the weeks to come.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 30 3:35pm
In reply to @jcold5619 "Had my 6th treatment yesterday. It was a wonderful afternoon and evening. Lol. The cumulative effect..." + (show)
@jcold5619

Had my 6th treatment yesterday. It was a wonderful afternoon and evening. Lol. The cumulative effect of this last 6 weeks is taking a toll. But I made it.

Found out I have been getting a full vile every week.

Now for a 7 week break before a cystocopy.

Jump to this post

Enjoy the break, @jcold5619. How is the recuperation going from the 6 treatments? How are you feeling today?

REPLY
1 reply
jcold5619 | @jcold5619 | Apr 23 8:17am
In reply to @vickyhay "I can assure you that with the BCG shortage, they would not waste any of the..." + (show)
@vickyhay

I can assure you that with the BCG shortage, they would not waste any of the solution.

Jump to this post

Had my 6th treatment yesterday. It was a wonderful afternoon and evening. Lol. The cumulative effect of this last 6 weeks is taking a toll. But I made it.

Found out I have been getting a full vile every week.

Now for a 7 week break before a cystocopy.

REPLY
1 reply
vickyhay | @vickyhay | Apr 17 5:44pm
In reply to @jcold5619 "Thanks Vicky, I need to find out. The room has always been set up and ready..." + (show)
@jcold5619

Thanks Vicky,

I need to find out.

The room has always been set up and ready to go when I arrive. I always see the box for the BCG and the syringe, which has already been filled. Not sure though if the entire vile was used or not.

I just assumed they were giving me what was needed.

Hmmm

Jump to this post

I can assure you that with the BCG shortage, they would not waste any of the solution.

REPLY
1 reply
jcold5619 | @jcold5619 | Apr 17 3:28pm
In reply to @vickyhay "Having the full BCG vial ... in contrast to 1/2 or even 1/3 of it." + (show)
@vickyhay

Having the full BCG vial ... in contrast to 1/2 or even 1/3 of it.

Jump to this post

Thanks Vicky,

I need to find out.

The room has always been set up and ready to go when I arrive. I always see the box for the BCG and the syringe, which has already been filled. Not sure though if the entire vile was used or not.

I just assumed they were giving me what was needed.

Hmmm

REPLY
1 reply
vickyhay | @vickyhay | Apr 17 2:51pm
In reply to @jcold5619 "Great input. What amount constitutes a “full” dose?" + (show)
@jcold5619

Great input.

What amount constitutes a “full” dose?

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Having the full BCG vial ... in contrast to 1/2 or even 1/3 of it.

REPLY
1 reply
jcold5619 | @jcold5619 | Apr 16 5:27pm
In reply to @vickyhay "During the induction, you should be getting the full dosage, this is the most critical phase...." + (show)
@vickyhay

During the induction, you should be getting the full dosage, this is the most critical phase. Due to the ongoing BCG shortage, if maintenance treatments are given, many practices only give 1/3 dosage. As it was explained to me this afternoon, the entire vial is reconstructed and must be used within one hour. Hence three patients are treated during the hour, if not - then the rest has to be thrown out!

Jump to this post

Great input.

What amount constitutes a “full” dose?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 16 5:07pm
In reply to @vickyhay "My issue with this Blog is that Mayo Connect has placed Kidney and Bladder Cancer in..." + (show)
@vickyhay

My issue with this Blog is that Mayo Connect has placed Kidney and Bladder Cancer in the same group. This is so inappropriate since the two have distinct profiles and distinct treatments. For example, while BCG has been the mainstay for treating early stage bladder cancers (after the tumor has been removed) since the 1970's this is not a treatment for kidney cancer ! Why was this decision made in the first place to group the two ?

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Hi @vickyhay, welcome. Actually, the Kidney & Bladder support group is for conditions and questions affecting the kidney and bladder. You will find Bladder Cancer discussions currently in Cancer support group to which I've moved this discussion here: https://connect.mayoclinic.org/group/cancer/

But the good or even better news is that new support groups will be opening this month, one of which is a group dedicated to Bladder Cancer. Stay tuned.

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vickyhay | @vickyhay | Apr 16 4:11pm
In reply to @cehunt57 "@vickyhay you pose a very good question. I had a similar question myself related to another..." + (show)
@cehunt57

@vickyhay you pose a very good question. I had a similar question myself related to another body system and the occurrence of cancer. There are SO many groups and discussions on Mayo Clinic Connect. They are largely categorized by body systems. Unfortunately concerns about cancer pertains to nearly all of them. In addition to that there are other groups and discussions devoted to other aspects of achieving good health and well being such as mental health, caregivers, spirituality ….. etc. When there are overlaps in a topic the discussion can be posted to more than one place. Sometimes the title can be changed to clarify what the discussion is about. Do you have any suggestions for making this discussion more accessible to the appropriate audience?

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Actually their is no reason to include the two cancers-- kidney and bladder - together, both have enough patients to have separate blogs.

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vickyhay | @vickyhay | Apr 16 4:08pm
In reply to @jcold5619 "Thank you for your input. Just returning from my 5th treatment. One more to go on..." + (show)
@jcold5619

Thank you for your input. Just returning from my 5th treatment. One more to go on my 6 week induction period.

Is it common to drop down to 1/3 dosage after my time off? I had not heard that they will be doing any reduction in my dosage…..

Thanks again and good luck to you.

Jump to this post

During the induction, you should be getting the full dosage, this is the most critical phase. Due to the ongoing BCG shortage, if maintenance treatments are given, many practices only give 1/3 dosage. As it was explained to me this afternoon, the entire vial is reconstructed and must be used within one hour. Hence three patients are treated during the hour, if not - then the rest has to be thrown out!

REPLY
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