Another Man’s BCG Experience

Compiled from a British Guy’s cancer blog. He refers to himself as “A Dived Ref.” You can find his blog HERE

Words from a fellow who has been there and done that regarding BCG treatments: Anyone going through these – stick with it – it isn’t pleasant but it is targeted directly where the cancer was or is and acts directly on it. The shocks to your system are manageable, you just mustn’t think that you can carry on as normal straight afterwards – the best thing is to lie down and take it easy, drink plenty of liquids and take things steady. – A Dived Ref

Our friend ADR above had two sets of six BCG treatments, the first in Nov-Dec 2006 and the second in June-July 2007. His grading included Carcinoma in Situ (CIS), which apparently requires a more aggressive BCG treatment than mine. (Not sure about this, just interpolating between his experience and what my Doc said) He experienced similar but not identical side effects each time, and I will try to summarize them here. As of 3 treatments I have experienced relatively low side effects – a dozen tiny clots plus two middle sized, passed without much pain due to super-hydration (28-30 oz per hour) during the 8 hour post-BCG period. I’ve also had pretty severe bladder discomfort – burning and such, for 2 days after #3, and was not able to find any position of comfort on the day after at all. Stay tuned for more…

Treatment #1
Instillation –
First round (2006)
was quick, painless, and only slightly uncomfortable. ADR was finished and standing outside ready to go home a full 5 minutes before his wife had found parking at the hospital.
Second round (2007) was a bit of a sting and more discomfort clearing the prostate.

Side Effects –
First round (2006)
only a tiny bit of blood and slight stinging, and perhaps a mild fever (maybe imagined). Some minor aches and tiredness on next day, plus a general weird feeling. Very minor joint aches in the next few days. Difficulty sleeping – which is normal for any cancer patient!
Second round (2007) was harder to hold for the 2 hours (perhaps due to extra fluid intake prior). Quite a bit of blood and tissue in the urine the first day/night and a lot of fatigue on day 2. Otherwise nothing much.


Treatment #2
Instillation –
First round (2006)
was quite a bit more uncomfortable catheterization due to irritation of the urethra – not quite painful.
Second round (2007) was much easier than the week before. Perhaps knowing it’s not so bad as one imagines is what it takes.

Side Effects –
First round (2006)
started right away with blood in the urine and stinging, especially at the tip of the penis. Got progressively worse, plus had to pee every 15 minutes with all the precautions for biohazard. Standing or lying OK, but sitting adds to the pressure! Lots of pain/burning passing “bits” of bladder lining and severe urgency. Significant leakage during sleep – you don’t even know it because of the constant burning (even with anti-inflammatory plus pain meds). Felt as if had been hit by a truck, but finally able to sit again on Day 2. Much improved by Day 3, but urinating still an adventure – as if there were “lots of very small bumps” in the urethra. By Day 5 only stinging at the tip of the penis.

Second round (2007) Pretty decent abdominal aching and flu-like joint and fever symptoms, and much less blood, but MUCH more lining – sort of an unnatural white-ish ooze. Lots of fluids needed to help pass this semi-solid muck, and best to hold as long as possible to maximize the volume out. Pretty rough night #1. No sleep at all on night #2. Nonetheless felt pretty OK on Day 3 and good night’s sleep that night.


Treatment #3
Instillation –
First round (2006)
was much easier. Used a stress ball to help relax. A different nurse used a slower technique – no real discomfort at all!
Second round (2007) was a complete non-event.

Side Effects –
First round (2006)
the side effects were the same as Week 2 (blood, clots, and tissue goo), kicking in after about 4 hours, but easier to handle using pain meds and having been through it once. Some slight stinging and abdominal soreness, and also leakage during sleep again, but seems less than last week. Instead of being hit by truck, more like being hit by a wet fish. And skin tone has oddly improved quite a bit. Concentration levels near normal by Day 3, and fully OK by Day 4.
Second round (2007) was far, far easier than the previous week. Week #2 in both cases seems to be the worst. Side effects were there but no where near as strong, the slight fever and aches were just in the background. Felt great by Day 3 with awesome skin tone as an added benefit!


Treatment #4
Instillation –
First round (2006)
was not bad at all, but the stress ball took quite a pounding as the catheter passed the prostate!
Second round (2007) was nothing remarkable outside of accidentally kicking the sharps bucket off the wall and being told to squeeze your (stress) balls!

Side Effects –
First round (2006)
limited to a minor stinging on Day 1. Other than that, nothing at all!
Second round (2007) Lots of stinging and discomfort on Day 1, but no flu-like symptoms. Very uncomfortable night with lots of debris discharged – much easier if you tolerate the discomfort and let enough fluid build in the bladder first! Felt decent after 24 hours.


Treatment #5
Instillation –
First round (2006)
had mild discomfort, especially going around the prostate, but easier than last week with less discomfort.
Second round (2007) was pretty uncomfortable. There was a slight interruption, and it took longer to instill the BCG, netting an unpleasant stinging effect.

Side Effects –
First round (2006)
found urination frequency and pain reduced from last week, but the level of “gunge” and clots was high. Two blood clots the biggest seen as yet. Warm, feverish feeling, but not unpleasant. Much improved by Day 2, but pretty brutal fatigue on Day 4.
Second round (2007) gave some pretty brutal bladder spasms after 4 hours and lots of abdominal aching. While Week 2 was the worst (again), the cumulative effect has been increasing from Week 3 to 4 to 5 (but not as bad as Week 2!) Felt fine 24 hours later. Dealing with Windows Vista this week was far worse than any BCG treatment! (SK comment – Vista is evil spawn of Satan)


Treatment #6
Instillation –
First round (2006)
was nothing noteworthy.
Second round (2007) was also nothing noteworthy.

Side Effects –
First round (2006)
was a pretty miserable first night. Symptoms no worse than before, but not much fun to deal with. Got maybe 3 hours sleep. Had to take pain pills the morning of Day 2 for the first time. Lots of fatigue on Day 2, pretty much back to normal on Day 3.
Second round (2007) this last treatment is sadly like being hit with the truck again. Lots of pain, lots of blood, clots, and bits, and constant bladder spasms. Morning of Day 2 is more of the same – peeing razor blades and groaning as if giving birth. Nearly as bad as Week 2 of the first go-around. Very sore abdomen. Painkillers needed through noon of Day 2. Near normal by Day 3.


Bottom line from ADR: “On the first set of treatments there was a lot of debris, stuff that looked like miniature tripe and what I can only call white ooze. The second time, very little white ooze (just treatment 2) and very little debris. There are occasional bits, yet last time there were many.

“If there was such a thing as a “good” cancer to get it may well be bladder cancer. It is treatable and generally (in men) you can tell pretty quickly whether you have got it. Most of the people going in with symptoms have the earlier presentation that can be surgically removed or can be treated. The response rates are good and so on. There are of course other issues but generally it is one that caught early can be treated and it appears you can have it recur for a long time and keep treating it.

“It occurred to me that not all cancers are going to be like that. some of course are just cut out and that is it. Some are far more difficult to detect and by the time they are detected they may be advanced.

“I was explaining that I felt I was very lucky to have bladder cancer and to be in a country where it is treatable.”

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