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Can I safely skip 6th treatment?

10 years 9 months ago #24822 by SexySexyBB
I think that's what's happening with me. I had 6 weeks of BCG last May-June after my first surgery. At my Jan checkup a c scan showed a small tumor and now I'm on my second set of BCG treatments. Thanks for your message.

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10 years 9 months ago #24821 by kittylee
My husband, Ron, had 3 years of BCG starting 6 weeks post TURBT. 1) One weekly for 6 weeks, 2). then every 3 months (1 weekly for 3 weeks) for a year 3) then every six months (1 weekly for 3 weeks)for the rest of the time. We read about side effects on this site and others for years and thought we pretty much understood what to expect. What we didn't pick up anywhere is this: The treatment effects increased with the number of treatments. It didn't matter that it had been 6 months since the last BCG. The later in the cumlative number (no matter the duration) the side effects intensified. So, we thought the first 12 months were pretty much a breeze. The last 18, however, brought severe flu like and urinary discomfort symptoms. It is wise to ask your Doctor to prescribe urinary analgesic and prepare to be off work a day or two, the later in your BCG treatment regimen. I don't mean to sound negative, and it may not be the same for everyone, but: we thought something was going wrong at the time and it just turned out to be "part of the program".

I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 - TURBT & 3 yrs BCG -
9/08 Invasive BLC w/distant mets
11/08 - 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression - start ITP chemo
10/09 My darling Ron passed away

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10 years 9 months ago #24815 by SexySexyBB
I collect the second or third time i go on the morning of my treatment then I refrigerate it until leave home. The little bottle is sealed until I open it. As we walk to the treatment room I give her the sample and closed medical waste bag which is in an ordinary paper bag so I don't freak out the other patients.

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10 years 9 months ago #24813 by Patricia
Bobo.....just a note..don't collect the urine specimen at will be compromised.
* Fresh specimen. As a primary consideration, remember that results obtained using urinary dipsticks are only as good as the specimen. Test only those samples that were freshly collected in a clean, dry container. It is important to examine the specimen within 1 to 4 hours of collection and to make sure the specimen is mixed well at room temperature.

I had this actually happen to me while in the hospital...they collected the urine and let it stand overnight and then told me i had a kidney infection. Luckily my doctor was pretty smart and knew exactly what they had done as i had no indications of a kidney infection........another collection and immediate check and , of course, no infection.
Geez...the things you need to know!!!!!!!!:silly:

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10 years 9 months ago #24811 by SexySexyBB
I'm moving better this afternoon so maybe I'll be "ready to run" by the time I begin releasing the BCG. Actually because of physical problems I haven't run for several years! :laugh: If I'm still moving slowly the "medical waste" bag I bring home every week will have more pads. Yes, my urine is checked every week. I bring my bottle home the week before because my bladder doesn't always want to cooperate at the last minute. My uro will be in surgery in the morning so I won't see him until my next checkup.
Thanks everybody.

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10 years 9 months ago #24809 by Patricia
bobo......I would explore all possiblilties for your reaction.
These events were reported voluntarily from a population of uncertain size, it is not possible to reliably calculate their frequencies.

Symptomatic granulomatous prostatitis, epididymo-orchitis, and renal abscess associated with administration of intravesical BCG have been reported.

Ocular symptoms (including uveitis, conjunctivitis, iritis, keratitis, granulomatous choreoretinitis) alone, or in combination with joint symptoms (arthritis or arthralgia), urinary symptoms and/or skin rash, have been reported following administration of intravesical BCG. The risk appears to be elevated among patients who are positive for HLA-B27. (13)

Skin rash, arthralgia and migratory arthritis may be allergic reactions

These are the underreported symptoms of BCG probably because doctors refuse to accept them as symptoms of BCG.....but i know just from this site i've seen the cases of uveitis, and especially migratory arthritis.
And yes you should pee into a cup before every treatment.

Everything you do not want to know about BCG.....take it with a grain of salt but info worth knowing especially if you uro doesn't.


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