Scared of BCG

[Ann Oliver]

Hi All,
I am terrified of the BCG because I know how painful a catheter is to my bladder and how disabled I feel afterwards.
I will take some pyridium but I have read some posts that are very scarey .
Does anyone have a good story to tell of the BCG?
I am feeling very high anxiety because the doctor has taken me off of the Elmiron and Bactrim to start new treatments. My bladder is driving me absolutely mad and I am desperate to find a happy medium.
I pray that we all find a successful cure and share it with one another.
Merry Christmas and a Blessed New Year to Everyone.

[ICNAsstMgrDiane]

My Experiences with BCG

By: Diane Manhattan

In July of 1998, after a great deal of consideration,
my physician suggested that even though not approved for the treatment
of Interstitial Cystitis, but because of the promising results of clinical
trials, that I should consider intravesical BCG as a possible option.

As a proactive IC patient, prior to committing myself to BCG instillations, I
took to the computer and researched BCG in general and as a possible
treatment option for IC. In my research many questions came to mind that
I knew that I needed answers for. Some of the questions that I needed
answers for were, Could I become infected with the TB Virus? Could I
spread the TB virus to others? What side effects will I have? What
precautions should I take? Would my bladder tolerate holding the
medication for the prescribed amount of time?

After reviewing my concerns with my physician and understanding the all
the pro's and con's of BCG, I decided that BCG was an option for me.
Prior to the start of the 6 weekly instillations, I had an IVP and a
Sonogram of the kidneys and uterers. This was done to make sure that
my kidneys and uterers were functioning normal and that there was no
chance of the medication entering into my kidneys. I also started a
voiding diary so that we could determine and monitor the effectiveness of
the BCG.

I was also given instructions from my physician in reference to the
preparations that I needed to do before and after the procedure. I was
advised not to drink any fluids four hours prior to the instillation, and to
take an antibiotic after the procedure and two doses the following day to
help with the prevention of infection due to catherization.

During the course of treatment, I stopped all medications that I was
taking for IC except for my pain medications and my self-help strategies
i.e., heating pad, ice packs, electrical stimulation and TUMS.

I started my initial treatments on July 31st, 1998. Because BCG is most
effective when it is instilled once a week for a period of six weeks, we had
to abandon the initial treatment plan due to major setbacks.

On October 2nd, 1998 I Anxiously arrived at my physician's office, BCG
and solution in hand, ready to start my six weekly instillations. A little
nervous, but thinking to myself, that this may be the one option that can
bring some hope. As the physician was ready to administer the catheter, I
requested that lidocaine be administered first. Unfortunately, I was told
that it would effect the effectiveness of the BCG. So the catheter was
inserted and the BCG/solution was administered.

I was given directions to make sure that I held the medication for 45
minutes. I questioned this, because I was under the impression that the
medication should be held for 2 hours, rotating from front to back, side to
side in 15-minute intervals. I was determined to follow the instructions of
the clinical trials, so I went home and rotated from side to side, back to
front. After 1-½ hours, I was ready to burst, so I emptied my bladder. As
the solution was releasing itself from my bladder there was a slight
burning sensation. Other than the slight burning after the initial void, the
effects of the first night were minimal.

On Saturday the day after the treatment, I woke up with a headache and
feeling very sluggish however, the BCG did not increase my pain levels.
The headache lasted two days, but the fatigue continued throughout the
six instillations.

My second instillation was the same as the first, there was burning after
the medication was voided and lasted a few hours.

When I went for my third instillation, this was a little different. The
medication burned while inside my bladder, where before the burning
only occurred after I emptied my bladder of the solution. When I voided I
could actually see the sloughing of the bladder wall in my urine. I was a
little nervous, but I knew that this was one of the actions of BCG. For three
days after the instillation my pain levels were a slight higher and I started
taking my pain medications on a regular schedule.

I started another three-day voiding diary, so that I could monitor myself to
see if there had been any improvement in my frequency since the initial
treatment. (see below)

Before the next three treatments, I started to take my pain medications
prior to the instillation. I noticed by doing this that it helped with the
discomfort that was associated with catheter insertion, the burning while
the medication was inside my bladder and also helped in allowing
myself to hold the medication for a longer period of time.

After the fourth, fifth and sixth treatment I could actually see more of the
bladder lining sloughing off. I also had darkened/dry blood in my urine,
but I was advised that this was normal. My pain levels seemed to
increase a little more, but not to the extent where it interfered in my daily
routines.

Questions that I have been asked regarding my experiences with
BCG?

1. When did I notice the initial change in my IC symptoms?
I noticed a slight change in my IC symptoms after the 5th
treatment. I felt as though I was able to hold my urine longer
between voids. However the pain levels did not change.

2. How long after the 6th treatment did I feel that the BCG was
really working?
Probably two months after, when my nocturia went from 3-4 times
a night, to 0-1 times per night.

3. How long did it take to notice a change in my pain levels?
The pain waxed and waned for two months, having a few bad
days every couple weeks. By the third month, I had very little pain.
By the fourth month I felt as though I was symptom free.

4. When did you notice an improvement in your frequency and
urgency?
Prior to BCG, I was voiding on the normal, 16-20 times a day.
With-in the first month of the 6th treatment, I kept a voiding diary,
which showed that my daily voids were slowly decreasing. By the
3rd month, I was retraining my bladder (bladder protocol), and
trying to see if I could wait and empty every 3-4 hours.

5. How am I doing now, 7 months after the last treatment?
My voiding patterns are just about normal. I do have days that I
have freguency, but the urgency has improved dramatically. Before
the BCG, if I had the urge to void, I had to go then. Now I am able
to hold it with out the urgent feeling.

6. Would I do it all over again?
Yes…I feel that this shows definite promise.

7. Do I have any other concerns after the BCG treatments?
I suffer from chronic bladder infections. I am paranoid, that the
infections will have an impact on the progress that I have made
with the BCG.

Today 12/23/01, I void only about 6-8 times a day and rarely wake up in the middle of the night to empty. Even though I am a pain patient, it has been documented that the pain is caused by severe nerve damage, caused by bladder infections eating away at my bladder. (I get severe infections where it take 3-4 month to clear up)Not by the BCG.

Again if I had to it over again, I defenitly would.

Diane

I don't know if you my post about "What Is BCG", but I will repost in case you did not see it.

Here is a little explanation of What BCG is.

What is BCG?

Bacillus Calmette Guerin

BCG -Tice® also known as Bacillus Calmette Guerin or the Tuberculosis
bacteria/virus. It is a vaccine, composed of a live weakened strain of
"Mycobacterium bovis" which is derived from cows. BCG is administered
in two ways, either by intradermal injection or intravesical. 1

Intradermal injections of BCG-Tice®, Outside the US, has been used for
the prevention of Tuberculosis. Intravesical treatment of BCG-Tice® is
FDA-approved for carcinoma in situ (CIS) of the bladder. In January of
1994 a published report in, Urology 1994 Jan;43(1):121-4, titled "Bacillus
Calmette-Guerin immunotherapy for refractory interstitial cystitis" by Dr's.
Zeidman EJ, Helfrick B, Pollard C, and Thompson IM; Urology Service,
Brooke Army Medical Center, San Antonio, Texas, suggested that BCG
may be an effective treatment for Interstitial Cystitis.2

How was it learned that BCG could be used as a treatment for IC?

BCG treatment for Interstitial Cystitis was found by accident. A woman
who was thought to have had carcinoma in situ of the bladder underwent
BCG treatments. She was misdiagnosed and it was determined that she
had interstitial cystitis and not carcinoma in situ of the bladder. However,
after completing the treatment course of BCG, her symptoms of Interstitial
Cystitis resolved.3

How is BCG administered?

BCG is administered (as per research trials) in six weekly instillations.
The intravesical dose consists of one vial of Tice-BCG suspended in
50ml preservative-free saline.3 The BCG and diluent is administered
through a catheter. You are asked to hold the medication in place for 2
hours, Rotating every 15 minutes from side to side, back to front. This
enables the medication to be distributed equally in the bladder.3,7

In order to hold the medication for this suggested period of time patients
should not drink fluids for four hours before treatment.

(Note: Many physicians that are doing BCG treatments out of the study
trials, require that you hold the medication for at least 45 minutes.)

What are the possible side effects?

"Flu-like" symptoms: fever, shaking chills, increased fatigue,
nausea/vomiting, headache or dizziness, joint pain, coughing, skin rash,
blood in the urine, severe urinary symptoms, or other disturbing effects.7

Can you contract the TB Virus while on BCG?

One of the risks of BCG is becoming ill from the treatment with high fever,
chills or sepsis. It is unlikely to actually contract TB. The risk of a serious
side effect is low based on our experience in bladder cancer and would
occur more likely in men due to catheterization of the prostate and
potential bleeding associated with this. (Quoted, Dr. Peters: Chat
transcript May 18th, 1999)

What Special Precautions Should Be Taken After Receiving BCG
Treatment?

For safety reasons, urinate to expel the liquid by sitting down on a
toilet.
Add two cups of chlorine bleach to the toilet bowl after urinating,
and do not flush for at least 15 minutes.
Repeat this process each time you urinate for 6 hours after each
treatment.
To avoid contamination, cleanse your hands and genital area
thoroughly each time you urinate Drink plenty of fluids to wash out
your bladder during the hours after the Tice BCG treatment.4

How does BCG work as a treatment option for IC?

The method of action of BCG is still unknown, However, it is thought that
"efficacy of BCG in treating Interstitial Cystitis may be due to stimulation of
type 1 T helper cell response, allowing for destruction of stressed
immunogenic cells and promoting reparitive conditions... Correcting the
underlying abnormal immunoligic event may be the reason why
intravesical BCG is effective in treating interstitial cystitis.""3,5,6

Another possible factor, as observed in uncontrolled trials, is evidence
that "Interstitial cystitis may be associated with low urinary nitric oxide
level and increasing nitric oxide in the urine has shown to correlate with
an improvement in symptoms. Intravesical BCG, has been shown to be a
potent stimulator of urinary nitric oxide in the bladder cancer patients".5,6

Intravesical BCG may be effective in treating IC by correcting an aberrant
immune imbalance in the bladder, leading to long-term symptomatic
improvement, as reported in, Urology 1999 Sep;54(3):450-3.8

What does BCG do to the bladder lining?

BCG is considered less caustic than Silver Nitrate or Clorapactin. It
slouths off or eats away the tissues of the bladder wall. Silver Nitrate or
Clorapactin burn away the tissue of the bladder wall.

Who manufactures BCG-Tice®?
BCG -Tice® was developed at the
University of Illinois. It is manufactured by , Organon Teknika Corporation,
100 Akzo Avenue, Durham, NC 27712 and distributed by, Organon Inc,
West Orange, New Jersey.


References

1.Arnot Ogden Medical Center
2.Bacillus Calmette-Guerin immunotherapy for refractory interstitial
cystitis. Zeidman EJ, Helfrick B, Pollard C, Thompson IM: Urology
1994 Jan;43(1):121-4
3.The Efficacy of Intervesical Bacillus Calmette-Guerin In The
Treatment of Interstitial Cystitis: Long Term Followup; Kenneth M.
Peters, Ananias C. Diokno, Bruce W. Steinert and Jose A.
Gonzalez; Department of Urology, William Beaumont Hospital,
Royal Oak, Michigan. Journal of Urology: Vol 159, 1483-1487, May
1998
4.Battle Creek Health Services:
5.Expression of nitric oxide synthase and heme oxygenase in
interstitial cystitis (IC) bladder biopsies Michael R. Ruggieri,
Sharon Filer-Maerten, Philip M. Hanno and Michel A. Pontari,
Philadelphia, PA. NIH grant # R01DK49501 and #R01DK39086
6.Urinary nitric oxide synthase activity and cyclic GMP levels are
decreased with interstitial cystitis and increased with urinary tract
infections. Smith SD, Wheeler MA, Foster HE Jr, Weiss RM J Urol
1996 Apr;155(4):1432-1435
7.Organon Inc, Patients leaflet: January 1998: , Organon Teknika
Corporation, 100 Akzo Avenue, Durham, NC 27712 and
distributed by, Organon Inc, West Orange, New Jersey
8.Preliminary study on urinary cytokine levels in interstitial cystitis:
does intravesical bacille Calmette-Guerin treat interstitial cystitis
by altering the immune profile in the bladder?Peters KM, Diokno
AC, Steinert BW: Department of Urology, William Beaumont
Hospital, Royal Oak, Michigan 48073, USA.Urology 1999
Sep;54(3):450-3

written by: Diane Manhattan (ICN Asst Mgr)

[Ann Oliver]

Thank You, Diane, I feel much better hearing from someone who has experienced the treatments.
I could give you a BIG hug right now.
Merry Christmas and Happy New Year.

[darlene]

thanks Diane, your post gave us a great deal of information about BCG. There is one word of caution I would like to bring up. The BCG treatment contains weakened TB bacteria. I know the chances of getting TB from the vaccine are low, but everyone who tries it must be made aware of the possibility. I, like many on this board, suffer from multiple diseases. I also suffer from Crohn's disease. One of the newer treatments for Crohn's is the drug called remicade. It is also used to treat RH arthritis. You may have seen it advertised on TV. It has recently been discovered that patients with TB infection, who are treated with remicade may die as a complication of treatment. I just want to warn those with multiple diseases to inform their doctors about all the treatments they are receiving. This is a case where forgetting to inform all of one's doctors about all of our treatments could prove fatal.

[ICNAsstMgrDiane]

Darlene,

Thank you so much for the information about Remicade. I have saved this page in my files and will research it more. On my To-do-List it includes adding a section in the handbook on BCG.
I will certainly add this information and any other drugs that may interfer and/or be can cause harmful side effects.

Thank you again.