The Four Steps of a BCG Treatment - plus 4th BCG Maintenance Series #2 of 3 - March 19, 2010

Two BCGs down and one to go! I am really pleased to be telling you that yesterday's treatment, while harder than the week before, was still easy-peasy. No dramatic symptoms during the special handling period, and not too bad after. The morning of the day after brought mild hangover symptoms again - an almost headache plus exhaustion and mild dehydration, but this week is perhaps slightly better than last. I don't feel awful today, but this does not mean that I feel OK. I feel tired and not quite sore - sort of the way you feel after day of yard work - but not in a good way. By mid-afternoon I was stiff enough to take 1000mg of ibuprofen, and that has helped a lot. I could have taken it earlier, but I prefer to know how bad I am feeling first. This is a service to you - dear readers!

This mix and match of side-effect severity is puzzling, and an idea has been bouncing around in my brain for a bit. Now I think it is taking shape. I had not really solidified in my mind the fact that for me there are four basic phases in a BCG treatment, and each one can have variable side effects. And just because one step is severe, it does not indicate that any of the others might or might not be. Let my try to elaborate.

Phase One - BCG Instillation and Holding Period - 2 hours, lasting from the time the doctor puts 50cc of BCG solution into your bladder until the first time you are allowed to pee. Other than the discomfort of the tube insertion (and sometimes removal), there is no pain associated with BCG instillation. It might as well be water. Since we all know that THIS water is full of toxic bio-cooties, it is reasonable to suppose it will burn - either immediately or soon after - but this is not the case. If you have followed protocol, you will not have had any fluids in the 4 hours prior to instillation, and you will be thirsty. I usually don't eat or drink at all after midnight or 1 AM even if my BCG will come as late as Noon. My doctor says you can begin drinking fluids immediately after the instillation. While this sounds good, caution is in order. For all but the tiniest of bladders, 50cc is not much fluid. But one must hold it for two hours, and drinking too much immediately will make that difficult. I drink one quart slowly over the first hour, and then slow down a bit. For the second hour I drink another quart, but I wait until the last 20 minutes before slamming most of it. Usually this amount leaves me primed and ready at the 2 hour mark. By the time 15 minutes are left, there is some tingling/burning and sense of urgency. Lying flat seems to help - standing or sitting are the worst. Usually I can hold out, but sometimes have to go 5 minutes early. Then sweet relief. Sometimes there is burning and/or cramping associated with the first urination, but usually not. It's never too bad compared to the relief found in emptying the bladder. But afterward there is always a burning discomfort in the now-empty bladder, which can be offset by continuing to force fluids, again slowly, about a quart per hour. During Phase 1, if you are careful about hydrating, there should be no symptoms whatsoever besides an urgency and mild burning near the end. You may feel toxic mentally, but you are not technically a biohazard to others until you begin to pee (presuming that you have done a quick cleanup at the doctor's office).

What do people do during Phase 1? One lady reported to me that she drives to the bargain store and walks around browsing and shopping, then contiues home before the 2 hour mark. Others sit at their computers, watch TV, or whatever. If you are not active, it is best to move around - e.g. lie in a bed and switch from supine to prone and from side to side. Since I have an hour drive home and a friendly driver, I lie in the back - flipping position every 15 min while reading a magazine. At home I usually update the Current Status of the blog and go to bed, continuing to flip while watching TV and hydrating. Since a few bubbles are usually present from the instillation process, some movement is desirable so that the entire bladder lining is exposed to the BCG. If you feel like it, you could eat a meal during Phase 1, although I usually don't feel like it. I do ALWAYS eat a small meal during Phase 2. My protocol is the extreme, of course - consistent with my nature.

Phase 2 - The Special Handling Period - Now you are officially a biohazard and peeing toxic waste, and the next six hours are a matter of peeing and drinking and peeing some more. Since the recommendation is that the pee be sterilized by bleach for 20 minutes, it is best to tailor your fluid intake to ensure that you don't need to go more often than every 20 minutes. And in the early BCGs this was not always easy or even possible! As a BCG veteran I have the intake output cycle down to 20-40 minutes between. For men it is important to remember to assume a sitting position to pee. This position avoids splashing the BCG cooties around your bathroom. If you have any pain, cramping, or voiding issues, sitting up as straight as possible rather than bending forward will help. I have included a handy sign at right for those of you who prefer visual instructions. Side effects during Phase 2 can range from essentially nothing (last week and my first two ever), to mild burning and headaches, to fairly intense pain, cramps and burning and other things better described elsewhere. For pain and cramping my doctor says I can take up to 4 ibuprofen tablets (500mg each), which is four times the non-prescription dose. There appears to be no rhyme or reason to whether your Phase 2 will be easy or hard, although in general each successive one in a series will be increasingly worse.

A word about eating. Towards the end of Phase 2 and during ALL of Phase 3 you will have no appetite at all. If, like me, you have not eaten since the night before, your system will not have the energy it needs to recover from the BCG. So I ALWAYS eat during Phase 2. Why then as opposed to Phase 1? For me there are several reasons - firstly I do a careful cleaning of the affected area at the end of Phase 1, clean the toilet with bleach, and wash my hands thoroughly with soap and hot water - even though I used gloves. So I feel like this is the time I am the safest from a cleanliness standpoint. Second, I know I will have at least 30 minutes between times to pee, leaving plenty of time. And last, there lately has been a problem with my system getting stimulated by the BCG - so that I nearly always need to defecate within the first hour. I prefer to have all that behind me before eating - pun intended. As for what to eat, I found that anything heavy in protein (meat) or fat (cheese) tends to sit in my stomach like a brick, so I prefer a thin, vegetable soup with a piece of multigrain toast. And I enjoy it, because I know I will not be eating for a while!

Phase 3 - The Evening After - After my final pee at or after the six hour Phase 2, the first thing I do after pouring the bleach in and starting the 20 minute timer is clean the bathroom - toilet area and sink, and dispose of the trash in a plastic bag - including my sacrificial underwear for the day. Then I take a LONG hot shower. We are talking 30 minutes of scalding water. It is a waste and a luxury, but at this point it has been earned. While physically you don't need to really clean more than you have been doing, the shower provides a sort of mental cleansing, and much appreciated warmth - especially in winter. It is also important to maintain the hydration and urination to at least half a quart per hour until bedtime. Phase 3 is marked by a TOTAL loss of appetite, headache, body aches, and for me there is an effect I call brain-fog. Cognitive functions are turned off. Doing something simple like converting meters to inches requires 15 minutes of intense concentration, even if you cheat and use Google calculator! I typically prefer to be alone, not having to comprehend what anyone says to me. If I watch TV, I seek out the most mindless shows possible - sadly not difficult these days with so many choices. If my only pain is headache, I take 1000mg of acetaminophen (2 extra strength tablets). If I have any body aches or indistinct stiffness - and especially if there is any cramping in the kidney area, I take 1000mg of ibuprofen (2 regular tablets). After about 3-4 hours the brain fog will start to fade and Phase 3 will be near its end. How do you know when it is over? For me, I become suddenly hungry - starving mad hungry, after hours and hours where even the thought of food is nauseating. This generally occurs 5-6 hours after the end of Phase 2. I have to be careful again not to eat much. Because I am about to go to sleep, and also because the system is working to battle the BCG stimulation, any heavy meal will cause stomach cramps and indigestion within 2 hours. So I generally have a couple of pieces of toast (no butter) with some fruit preserves or honey. I would describe Phase 3 symptoms with the term "general malaise," which basically means it's indescribable. It is a sort of abstract thing where you feel tired and awful without any specific pain of much import. Since the term is an abstraction, I have chosen an abstract photo which seems to capture it.

Phase 4 - The Day After - After my first few BCGs I had only a vague brain fog the day after instillation. But now I have been having more of the famous "general malaise" and flu-like symptoms - exhaustion, cramping, aches, pains, stiffness, chills, headache, and so forth. This go round it was a mild episode, but after my 3rd treatment last September I stayed in bed pretty much all day. Again this is highly variable - and it's a good thing. It shows the BCG is working to fool the body into marshaling all its forces to fight a disease. In this case there is no bladder infection, but that is the target area, and the theory says that the fight to kill the imaginary infection serves to keep the cancer at bay in 50% of the cases where maintenance protocol is used. So don't be afraid to gulp ibuprofen, slam fluids, and rest for a day. Because at the end of Phase 4 you will feel almost as good as new, except for the minor discomfort from peeing that lasts for weeks. Even that minor discomfort is a blessing, serving to remind that the medicine is doing the trick!

Since my side-effect list is benign, like last week I am including it below rather than hiding it in a backup page. Stay tuned for more stories from Biohazard Man!

11 comments:

Anonymous said...

Thank you so much for all of this first hand info! My BF is about to start this treatment tomorrow and you have answered so many questions that we had!

Thank you so much and I hope your treatment works wonders for you and you heal very quickly!

BTW, ironically, my BF's last name is Kelley also!

Hugs,
HBM

Kathy said...

My mom had this treatment and we were not told that everything should be washed with bleach. Now I'm worried for myself and my family. If exposed to BGC what happens or could happen? I have researched on the web and can't find anything. If you would email me I would greatly appreciate it if you know.

Steve Kelley said...

Hi Kathy, I am not sure how it is possible to mail you with no contact info, so my answer is here. The bleach routine is an extra precaution, and (in typical American fashion) is way overkill. BCG is not toxic to most humans at all (it is a cattle disease). So the risk is very low. The Bladder Cancer patient always gets some spilled directly on the skin. The extra precautions of bleach are not vital for protection. That said, if someone does have sensitivity to it, they could contract a sort of flu, or even worse. But the odds are microscopic.

Anonymous said...

For those newbies who are about to undertake their first BCG treatment, a couple of tips:

Don't exercise vigorously before or immediately after the infusion. This exacerbates the irritation.

If you use pyridium to relieve the immediate post-infusion symptoms, consider using panty liners to avoid staining your undies.

heather monaco said...

About exercise? I did Zimbabwe and boy did I get irritation last year...I just did my 4th treatment yesterday...I do pretty well with the symptoms...but I really wanna work out...but I'm afraid to start...my doc says it should be ok...but I'm a 36 yr old female and he says I'm the youngest he has treated for bladder cancer...so anyway...anyone know how long I should wait before trying again to exercise?

heather monaco said...

Zumba

Steve Kelley said...

After a TURBT, there should be about a month's rest. After BCG, one to two weeks should be plenty.

BJL said...

Hi and thanks for you. I refused BCG then I was talking into the treatment I will have 3 and take off 2 weeks (acruise I planned) then 3 more. Do you think I will be well enough to do this?BJL15000

Steve Kelley said...

Yes, BJL, you will be OK to take your cruise. The first 3 BCG are not bad at all. The fifth and sixth are pretty intense. But even after many years, I am fully recovered from a very bad BCG in 3 days or less.

RHC said...

ABOUT EXERCISE, THE DAY AFTER MY 4TH TREATMENT, I LIFTED SEVERAL HEAVY BOXES AND MOVED SOME FURNITURE AROUND. ALMOST IMMEDIATELY AN INCREASE AMOUNT OF BLOOD IN MY URINE AND LARGE CLOTS (NICKEL-SIZED). I WENT TO BED AND RESTED THE REST OF THE EVENING AND AFTER ABOUT 48 HRS THE BLOOD WASNT VISIBLE IN MY URINE ANYMORE. DID THE PHYSICAL EXERTION CAUSE THIS?

Steve Kelley said...

RHC, in my opinion the clots and blood are already there. Your first three treatments probably didn't have much in the way of symptoms, but 4, 5 and 6 will be increasingly dramatic. The exercise may have squeezed out some extra blood, but really those are BCG symptoms. I don't consider myself fully recovered from BCG until the 3rd day afterwards.