Dealing with BCG - Lessons Learned - November 5, 2011

I promised this post over five weeks ago, so I am tardy.  It does point out the first lesson learned:

1) After you get the routine down and have both experienced and dealt with the maximum side effects (which does vary greatly from person to person), it is possible to completely forget that you just had a BCG maintenance series after about a week.

I could almost forget that I have bladder cancer, but it is a large, looming presence that is always in my mind, and possibly could come back to my body at any time.  Believe it or not, that's a GOOD thing, especially when wrestling with staying on a diet, remembering to take supplements, or even motivation to exercise.

While there is a progression of symptom intensity, there is an eventual decrease of the maintenance treatment frequency.  This combination of offsetting factors brings us to the next lesson:

2) At some point you reach peak side effects, and they do not get noticeably worse or better after that.

 So once you are "over the hump" in your BCG maintenance, it becomes a nuisance rather than an increasing horror.  This is also GOOD NEWS.  For some it is earlier than others.  I note that my urinary side effect timing, duration, and severity have been nearly identical last time and 12 months prior.  18 months prior was not so bad as those, and so forth going back.  While it is important not to extrapolate from a single data point, I really think the one year in between provides enough recovery time to offset the BCG intensity increase.  A side note, non-urinary symptoms (headache, body aches, malaise, etc.) are still highly variable, probably due to errors on my part.

3) Hydration is good, and a lot of hydration is better, but too much hydration can cause other problems!

One big difference between post TURBT (or biopsy) hydration, and post-BCG hydration is that the BCG for me causes a severe loss of appetite.  You need hydration after surgery to continually flush the area, which is a cut, burn, or abrasion inside the bladder.  This hydration combats the formation of scabs and keeps the area clean for recovery.  Do keep in mind that urine is sterile, unless you have some sort of infection.  For BCG, the hydration serves to flush the BCG out of the bladder (which happens pretty quickly) and also to keep the bladder clean and blood flow active, as the body now believes it has an infection and sends helpful natural defenses to deal with it.  Early self-experimentation showed that slacking off hydration made the urinary and non-urinary symptoms more severe and long lasting, so I made a commitment to always force fluids and try to super-hydrate.  After surgeries I almost always had soup of some type and whole grain toast, which provide ample electrolytes.  I do have soup for lunch before the BCG appetite loss begins, but late in the evening I am suffering from electrolyte depletion, not having any food or electrolytes since lunch and having washed through several gallons (yes, I said gallons) of hydration since.  After surgery you eat normally and therefore won't experience this problem. 
The bottom line is that the headaches, body aches, and general malaise actually INCREASED if I over-hydrated, making the day after BCG in some cases even worse than the BCG day.  Getting the right amount is vital.  Fortunately there is a wide range and it's easy to stay within it.  So how much is enough, and how much is too much?

3) For an adult male, one should target between one and two quarts  (or liters) per hour for the duration of the BCG handling period and at least two hours thereafter (10 hours total post-instillation). 

4) If you are close to the high end of that range, you need to take in electrolytes in the form of a sports drink. 

Do avoid electrolyte drinks that are high in Vitamin C, which travels quickly to the bladder and will add irritation to an already over-stimulated area.  I do have lemonade, but very light on the lemon, and mixed in with plenty of iced tea (room temperature tea, really) and plain water.  For electrolytes I selected Gatorade brand.  One problem with ALL sports drinks commonly found is they are loaded with sugar, which feeds cancer directly, so they should be avoided entirely after surgeries when hungry cancer cells may be floating about freely, looking for a place to take root and grow.  But for BCG, you are theoretically cancer free, and it's less of a risk.  Of all the commonly available sports drinks, only Gatorade uses sucrose (table sugar) rather than high fructose corn syrup, which metabolizes more slowly but actually feeds cancer more efficiently. Read details HERE. I found that pounding a quart of Gatorade every now and then produced a stomach ache, so I keep a couple of quarts on hand and sip them throughout the 10 hours.  One more the following morning also does wonders!

5) While one could easily handle BCG treatments solo, not enough can be said for the positive effects of a loved one or friend to help get you there and back, make sure the hydration and electrolyte supplies are near at hand, and generally be sympathetic.

Positive attitude is strongly correlated to improved health (Link HERE), and those blessed to have help through this bladder cancer ordeal are forever grateful.  Public thanks to my wife who has patiently filled in the gaps and fought the good fight along with me.


El Calígrafo said...

Hoy aprendí algo.
Guerrero no es el valiente, sino el que lucha.
A pesar del miedo.

Steve Kelley said...

Sebastian (El Caligrafo) tells us:
"Today I learned something. The warrior is not the brave, but the one who fights despite the fear."

Anonymous said...

My husband has just now found out about bladder cancer, but now we face that there is no bcg in country what's so ever? Can you please let me know how much where the treatments? I know with insurance normally we don't pay all but need to have an idea and none here has it...we are in High Dessert California. Thanks

Steve Kelley said...

Well Anonymous in High Desert California, you have made communication back to you difficult, leaving this comment as the only avenue.

I am not aware of any BCG shortages in the USA. In fact, Ben in Baton Rouge had treatments for the past 3 weeks. If there is a shortage, it will be temporary. My doctor says BCG timing is more of a convenience - nothing magic about a month, a week, or a quarter. Moving a few weeks out will not make a material difference.

As to cost, the treatments are expensive. No idea about the BCG cost by itself. For my last treatment in March, 2012, the doctor's "retail" charge was $723, and the insurance discount brought it down to $480. This lower figure is something you should be able to get by negotiation for a cash price or something.

randy said...

Thank you Steve, Knowing as little as I do at this point, what I do know and you have brought forth is my wife has become my angel and my general at the same time and I have now said to her many times , I don't know how anyone goes through these things alone!

Paul Lopez said...

Hello all! I start BCG teusday the 8th. I had 2 turbt in Oct and NOV. Still a little pain after the end of my urine stream. But I have faith the BCG will get my cancer and eradicate it! what ever the side effects I'm ready to win this battle!

Mike said...

Two years ago I was told that I needed to start BCG but there was a worldwide shortage and drug was not available so I singed on to the waiting list.
After my last cystoscopy, I was told that it is now available in limited quantity.
My NP has the drug ordered and I'll start in two weeks.

Anonymous said...

Hi All! Start my first treatment tomorrow. I'm scared and I'm alone (except for the taxi driver). But I will fight the good fight and it is good to read encouragement like I see on some of these sites! Thanks for any prayers....and I am not a religious person..but I am a spiritual person and I do believe that prayer is like good vibes or positive energy. Bless us all.

Anonymous said...

Just got a bill for a Mitomycin treatment ( After surgery). 5 mg $ 1600.00
No BCG available.