BCG Allergic reaction?

[jjjj]

Hi there, a loved one was diagnosed in Dec. and started treatments BCG treatments in Jan. The first one went well with minimal side effects. The second caused such extreme illness and fatigue for an entire week, that they cancelled the scheduled one the next week. She regained some energy that second week although far far from regular.She then had her third treatment and 6 days later is still incredibly fatigues. To the point of sleeping 20 hours a day, and barely able to walk…like 4-5 steps before lunging for a chair. Heavy breathing, shaky hands. None if this is her normal. Does anyone have any feedback if these are expected side eg=effects of the BCG treatment? Or is this extreme, or perhaps indicative of a bad reaction?

[Jack Moon]

Hi jjjj

Sorry your loved one is having so much difficulty with the BCG treatments. Fatigue is a side effect of BCG treatments. I did encounter fatigue during my maintenance BCG treatments but not near to the extent that your loved one is encountering which to me seems extremely excessive. Some patients are unable to tolerate BCG treatments. Some patients due to side effects get a reduced amount of BCG, ie 50% to as low as 10%. I would recommend your loved one have a discussion with their Urologist regarding any future treatments.
All the best,
Jack

[DDep]

Hi jjjj

I have a reference that explains BCG fatigue.  My wife complained that: “All I did I was sit in a chair and sleep”.  I gave the reference to my family to help them understand what I was going through. (Practical ways of dealing with cancer-related fatigue, Peter Mac).  According to the reference, BCG Immunotherapy “fatigue” can be more troublesome than Chemotherapy.

Here is a quote from the Reference:

“Immunotherapies

These are treatments that stimulate the body’s immune system to attack cancer cells. They include BCG (for bladder cancer) or interferon (which is used to treat many types of cancer). Almost all people who receive immunotherapies report very high levels of fatigue, which for some people can feel overwhelming. Your treatment team will want to know whether you are having trouble with fatigue and will expect this to be aproblem for you.”

I am a 61 year old guy.  I have always tried to be physically active. (skiing, cycling, hobbies, working in and around the home, helping friends and family, etc.)

Aside from the cold feet, chills, feverish, burning and frequent voiding, etc. for 24 hours  … I too, got/get really “smacked” by BCG fatigue.  It increased as I went through the weekly cycle of induction/maintenance instillations.  After the induction/maintenance treatments were completed, the feeling of exhaustion, tiredness, lingered and lasted up to two months.  I really couldn’t do much during this time. It did slowly abate over that period.

Then I got my energy back.

When I was on the 3 month maintenance interval, I would just start feeling more “energetic”…Then I would get the next maintenance treatment – just to “smack” me down again.  Now, being on the 6 month maintenance interval I have about 4 months a good activity.

BCG side effects vary with the individual.

Please let her health care team know what your loved one is experiencing to be sure it is not out of the possible “normal” side effects.

God Bless

DDep

[jjjj]

Thank you for the replies Jack and DDep! It was great to share these with my mum.

We followed up with the oncall urologist, who sent her to emerg for a urine test. The doctor there also ordered some bloodwork. Urine fine but hemoglobin WAY down to 87, he looked back and  it has been dropping since Dec. He ordered a FIT test to see if we could figure out where she was losing blood. A couple of days later we followed up that with her own urologist who took one look at her and was concerned. He did another hemoglobin, it had dropped again, and checked her liver enzymes and was not happy. He admitted her last night, she started to look very jaundiced and her feet have swelled up. The doctors are talking cautiously but I believe they suspect a bad reaction to the BCG and we are waiting for her to be seen by internal and infectious disease specialists. Fingers crossed they will sort this out quickly!!

 

[marysue]

Hi jjj:

 

This reaction of your loved one is way beyond normal for a BCG reaction.  I sure hope that they sort it out quickly.  I too, experienced a lot of fatigue and did sleep a lot post treatment and had lingering fatigue for a few months post treatment but eventually got back to normal.  Best wishes going forward.  ((((HUGS))))

[Author]

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