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Safely dealing with BCG for someone with Parkinson's, Dementia, & Incontinence

1 month 3 hours ago #57650 by Jack R
KathysHeart

The following are points to raise with your husbands urologist and ALL his treating doctors. No recommendation is made here, only issues a that can be raised to obtain a workable treatment plan for your husband. These thoughts are based on my 5 year journey with bladder cancer - you will need the treating doctor's to understand your husbands full situation and determine how to best provide treatment for him.

BCG is not the only option; it is generally accepted as the best initial treatment for non-invasive bladder cancer. When a patient cannot tolerate BCG, or during BCG shortages, other treatments are available. BCG does not work for all patients, and some patients find success with other treatments after BCG failure.

There is a video on this site, an interview with Drs Lamm and O'Donnell, both highly respected. In that interview they back off of some of the "hazards" associated with BCG. It is worth viewing for a further explanation of handling BCG. It is at:

https://bladdercancersupport.org/bladder-cancer-forum/8-non-invasive-superficial-bladder-cancer-questions-and-comments/34287-bcg-and-septic-systems.html

You may need to involve an oncologist as well as the urologist and your husband's normal care team in finding a workable treatment plan. Make sure that all of the doctors will work together to plan treatment. Make sure that all of the doctors know ALL of the things that need to be considered - the disease, the proposed treatments, the ability of the patient to comply, and urinary habits you have described here. The group of doctors all need to be aware of all the issues.

Mitomycin MIGHT be an option to BCG. It is a chemotherapy drug not a biological, is routinely used for bladder cancers. It can instilled then drained after an hour or so, all at a clinic. It MIGHT avoid the concerning urination issues you describe. Other options exist, depending on the full situation.

Some brief info about Mitomycin is at:

https://www.cancer.org/cancer/bladder-cancer/treating/intravesical-therapy.html

Hopefully, this will give you a starting point to get a team involved to treat your husband. No recommendation is made her - never accept treatment advice from the internet, but do use what you read as the starting point to discuss options with your doctors.

Only you and the doctors are in a position to decide what is an acceptable treatment plan.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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1 month 5 hours ago #57649 by KathysHeart32065
This post is for those of you who have walked thru Bladder Cancer with your loved one ... needing feedback!

I am feeling a bit panicky as I am reading about the BCG treatment ... My husband will have his 2nd outpatient surgery to remove deeper tissue in about 4 weeks ... several weeks after that they want to start the BCG treatments ... I had no idea how much was involved in this when we met with his Urologist this week ... Dr. never mentioned all these precaustions ... Just learned about using bleach on a support group site and decided to research it this morning and now I am panicking about whether I am going to be able to handle this with him ... with a normal person it wouldn't be so difficult ... but I am reading all these precautions and wondering how I will be able to do this ... my husband has Parkinsons, Cognitive issues (early stage of Dementia) along with Incontinent issues ... even though he wears a pad during the day and a diaper at night he still uses the bathroom "normally" but sprays urine or pees on the floor consistently and not good at washing his hands ... pees on himself and his clothes ... from what I am reading for the first 6 hours after the treatment ... because it is a live bacteria everything the urine touches has to be bleached ... and healthy people are at risk of being exposed to the bacteria ...

How on earth do you do this with someone who is incontinent and doesn't have the cognitive ability to grasp the seriousness of this and has Parkinson's ... if he accidently pees on my carpet I can't put bleach on it! ... I am dealing with pee everyday ... on clothes, floor, pee pads, sheet ... etc. and I am also going to have to protect myself from being exposed to the bacteria... There is no way I am going to get him to sit down to pee ... we tried teaching him weeks ago when he was having incontinence issues ... before we knew he had bladder cancer ... and he just doesn't grasp the concept ...

Has anyone else with Parkinson's, Dementia and Incontinence been thru this experience. This feels impossible and very scary ... His bladder often releases before he is ready ... and he won't pee in a diaper ... often takes his diaper off at night without me knowing ...

USING BCG SAFELY AT HOME
After BCG treatment, your medical team will ask you to follow these safety measures. This is because BCG is a vaccine that contains live bacteria, which can harm healthy people.
For the first six hours after BCG treatment, sit down on the toilet when urinating to avoid splashing.
Pour a small amount of household bleach into the toilet bowl and leave for 15 minutes before flushing and wiping the toilet seat.
Wash your hands thoroughly after going to the toilet.
If you are wearing incontinence pads in case of leakage, take care when disposing of them. Pour bleach on the used pad, allow it to soak in, then place the pad in a plastic bag, seal the bag and put it in your rubbish bin. You may be able to take it back to the hospital or treatment centre for disposal in a biohazard bin.
If any clothing is splashed with urine, wash separately in bleach and warm water.
Wash or shower if your skin comes in contact with urine for the first few days after treatment.

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