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|Deacon John Stroop’s Emerging Story|
BCG, BCG+IFN, BCG+IFN+IL2 (interleukin2), Mitomycin C, Gemcitabine
Dr. Green, my Atlanta urologist heard a presentation By Dr. O'Donnell and thought O'Donnell’s protocol was the best for my case. My history:
Sept 97: increase in urinary urgency, small piece of tissue, 1 drop, lightly tinted urine. PSA 0.6
Oct 98: Passed tissue and blood. Hurt to urinate. Urgency intense. Prostate OK. Tissue to path.
Oct 12, 98: IVP; OK, 1 uterer a little dilated. Cystoscope: no apparent tumors but 'mushy' spot.
Oct 30, 98: Cyctoscopy, bilateral Retrograde Pyelogram, and bladder biopsy. Results: Stage 0/Tis/Carcinoma in situ. Grade? No invasion. Mawd GP confirms NS hosp. path
Nov 12, 98: 1st of 8 BCG instillations.
Feb 2, 99: Cytology. Results not good. Saw abnormal cells.
Feb 15, 99: 2nd biopsy, bilateral Retrograde Pyelogram at Northside.
The 2nd biopsy shows that the first round of treatments didn't get rid of the cancer. I have Grade III of IV CIS (Stage 0,Tis) that didn't seem to be phased by 8 weekly treatments of BCG. Will start a new round of weekly treatments the week of March 8th. It will be the same type of treatment (applying the agent directly into the bladder) but the agent will be stronger (Interferon added to the BCG).
Treatment begins March 25th and consists of 6 weeks of instillations with [1/3 BCG + Intron A]. Very expensive--6 weeks cost $7200 - $10,000.
Finished 6th treatment April 28, 1999. Tolerated instillations well. They made me more tired than the BCG only treatments. I want to sleep more. I also had minor headaches that would come and go. A ringing in both ears that still exists when I block out all external noise started around the time I started taking Oncovite between the end of my BCG only course of treatments and the beginning of my BCG + Intron A treatments). Will do Cytology (urine analysis) for preliminary analysis on May 18, 1999 and 3rd biopsy three weeks later.
Dr. Leonard Gomella, has participated in studies with Dr. O'Donnell, and is studying a protocol where patients who have failed two courses of six BCG treatments each are instilled with interferon A on Monday and with Full BCG the next Wednesday. They are treating patients whose urologists had recommended bladder removal. After six weeks course of interferon + BCG is completed, no more treatments are given. The patient is monitored for 2 years via cystos & biopsies. If the cancer recurs, the patient is dropped out of the program to return to some other form of treatment. They have had some success but I don't know to what level.
Four urologists I've talked to recommend Oncovite - I'm taking Dr. Lamm's dosage.
Dr. Keane of Emory says I should go with Dr. Gomella's protocol of [full BCG + 100 units of intronA] to have the best chance of beating my GradeIII CIS.
Update March 3, 2000
Update, October, 2000
John answers some questions from a new member of the discussion group:
>1) Was there any difference in your general reaction to the mixed drugs asopposed to the BCG alone? On webcafe you mentioned that after the first round you were more tired, and had minor headaches and a ringing in your ears. Did anything else happen in subsequent rounds of treatment? Could you take any medication, such as tylenol or tylenol plus codeine if the pain was severe?<
I never had very much trouble with BCG and was also feeling almost normal the next day after the BCG + IntronA instillations. Dr. O'Donnell did the first treatment with 1/3BCG and then dropped it down to 1/10 BCG for the remaining treatments.
>2) With BCG alone I generally missed from work just the day of treatment and was then able to resume normal activities. Was this true for you with the mixed drugs?<
>3) You mention the expense involved, with 6 weeks running $7200 - $10,000. I presume most of that is the interferon because from what I've seen the BCG alone is only a few hundred dollars. If you have medical insurance, were they willing to cover it? My sense is that the treatment is considered experimental.<
The Intron A is the expensive drug. At first the insurance didn't want to
>4) For your last treatment, with Dr. O'Donnell, you mention treatment of
After the initial BCG + Intron A treatments my biopsy was negative (good) but my cytology was positive. Dr. O'Donnell suspected that either the ureters or the kidneys had picked up the bladder cancer. He treated the kidneys and ureters by inserting a tube in the ureter (to defeat the one-way valve) and slowly dripped BCG + IntronA into the kidneys, let it drip down through the ureters and into the bladder. That treatment was harder on me because I had to be put to sleep each time and the kidneys seemed to revolt some. I felt bad the day of the treatment but was able to fly home the next day and generally felt better the following day. The treatment cleared up the ureters and Kidneys but the follwing biopsy and cytology showed that the cancer was back in the bladder.
I then had 6 bladder only treatments using 1/10BCG+100million units of
I'm trying one more thing on Dr. O'Donnell's recommendation before I have the operation this December. I'm taking 20mg/day of Piroxicam (generic for Feldene a COX-2 inhibitor)and will take it for 6 weeks. I'm also taking 500 mg, twice a day, of Ciprofloxacin (an antibiotic) twice a day for the same period. I'll have a cytology at the end of the six weeks to see if the bladder has improved. If it hasn't then it's operation time.
PS Dr. O'Donnell has had good success with the BCG + IntronA and has a nationwide trial going on. That trial might be the one your doctor is
Update Feb.9, 2001
I did BCG/IFN and then BCG/IFN/IL2 (BCG+interferon+interleukin2). The treatments didn't knock the CIS out but seemed to really slow it down and keep it confined in one small spot. Dr. Marshall is trying Mitomycin C and then will fulgurate the Cis spot when he biopsy's me in May.
Update Apr. 10, 2001
After I had finished my (BCG + IntronA+ IL2) instillations I still had CIS.While I was waiting to schedule the cyctectomy I took 20mg/day of Piroxicam (generic for Feldene, a COX-2 inhibitor) for 6 weeks. I also took 500 mg of Ciprofloxacin (an antibiotic) twice a day for the same period. I also took 3 grams of MGN-3 for two weeks and then one gram for four more weeks.
Then I had a biopsy at Emory hospital which showed that the CIS had been slowed down and confined in one small spot. I don't know what improved the CIS situation. It might have been the prayers, the Piroxicam, the Cipro or the MGN-3 but it was improved enough for the doctor to recommend 4 instillations of Mitomycin C in the hopes of knocking the CIS out. I'll have a biopsy May 1st to see how the Mitomycin C instillations did. I'm still taking 1 gram/day of MGN-3. I feel great and my urinary system is working fine.
Again I ask all for your prayers.
Update February 2001
Finished the final & fourth Mitomycin C instillation Feb 9, 2001. We used Dr. Jessie Au's new procedure but used the standard 40 milligram dose dissolved in the usual 40 ml of sterile water rather than dissolving it in the recommended 20 ml.
The following is a letter in which John addresses a reader's questions;
July 28, 2002
Sept. 6, 2002
If anyone is a refractory bladder cancer patient it is me. I've had two courses of BCG, two more of BCG + Interferon; two or three of Mito C. While I responded to all of them, eventually the BC recurred. I'm encouraged by the results of the new, somewhat expermental Gemcitabine treatments Dr. O'Donnell recommended that I take. I started the Gemcitabine instillations (2/week for 3 weeks) on July 15th. Cytology results of urine sample taken that day: POSITIVE. I finished the 6th instillation on August 7th. I had to stop after the 3rd one on July 22nd because of blood in the urine and a bladder infection that seemed to be caused by the insertion of the catheder during the 3rd treatment. Seven days of 500mg/day of Levaquin cleared the infection.
I finished 12 Gemcitabine instillations--2/week for 6 weeeks. Before I started these treatments my cytology was Positive. My cytology after the 6th instillation was negative and my FISH test was negative after the 12th instillation.
|Last Updated ( Friday, 14 November 2008 )|