Experiences of Ed B in Washington state

Ed B is a 71 year old male who was a heavy smoker and tobacco user for fifty years until he quit in 2001.  He has COPD, a disease that makes breathing difficult, plus emphysema and slight arthritis.  His tear glands are not working right so he uses eye drops and takes flaxseed oil.  This is his story as of 20 Feb 2009.  As with most bladder cancer patients, we hope there is much more to come afterwards!

  • Noticed what appeared to be blood in my urine on October 31, 2007.
  • Dr. B (my family physician) appointment on November 2, 2007. Urine analysis confirmed blood in urine.
  • Dr. B referred me to Dr. X (Urorologist) who recommended a CT scan.
  • CT scan on November 8, 2007 revealed a bladder wall mass.
  • Appointment with Dr. X on November 15, 2007 with recommendation for an enhanced CT scan to further evaluate the bladder mass.
  • Enhanced CT scan on November 21, 2007 confirmed bladder wall mass as a possible tumor.  Also noted was a nodule superimposed on emphysema on my lower right lung and suggested evaluation again in three to six months.
  • Surgery (TURBT) was performed December 6, 2007.  Additionally, a deeper resection was taken after the tumor was completely removed. 
  • Pathology results discussed December 12, 2007 was that the tumor tissue was High Grade carcinoma Ta or T1 with Carcinoma In Situ observed, but negative for invasion.   Dr. X recommended BCG treatment after the bladder heals and I agreed.
  • Treatment with BCG began January 10, 2008.
  • #1 is uncomfortable but few side effects. January 10, 2008. No Tylenol.
  • #2 is similar but some flu like symptoms.  January 17, 2008. No Tylenol.
  • #3 difficult insertion of catheter (nurse changed size of catheter) but side effects same as number 2.   January 24, 2008. No Tylenol.
  • #4 symptoms a bit worse. January 31, 2008.  Took Tylenol when symptoms got worse and it helped.
  • #5 catheter insertion very difficult with new nurse and side effect symptoms very bad with fever, chills and shakes for two days.  February 6, 2008.  Note:  I didn’t take (forgot) Tylenol to reduce side effects.
  • #6 easy.  February 13, 2008.  Note: I took Tylenol immediately and the side effects were very minimal. 
  • On 20 February 2008 I started taking 2 tablets of Oncovite twice daily, drink two cups of Essiac Tea daily, 500mg tablets twice daily of Artmesinin, 500 mg of garlic capsule once a day, 1500mg Glucosamine combined with 500mg of MSM once a day, 10mg Zetia once a day, 500mg capsule of green tea extract once a day and two herbal pH balance capsules twice a day.
  • Noted on February 27, 2008 that discomfort of diverticulitis that I have had for several years has completely disappeared.
  • Stopped all meds one week before my scheduled surgery to take biopsies. 
  • Cystoscopy  on April 3, 2008.  Additional random (5) biopsies were taken from the bladder wall on April 3, 2008.  The pathology results were discussed on April 10, 2008 and all were negative for urothelial dysplasia. Urothelial dysplasia is the putative precursor of urothelial carcinoma in situ (CIS) and invasive urothelial carcinoma of the urinary tract.  A problem with urine urgency, stream flow and quantity occurred two days after the biopsy procedure.  Antibiotic Cipro and the drug Flomax were used to treat a possible infection/inflammation of the prostate (although no infection was found by urinalysis).
  • In discussion with Dr. X, we will pursue the BCG maintenance protocol the third week of May 2008.
  • Resumed taking meds on April 10, 2008
  • Laboratory blood sample taken on April 9, 2008 shows an elevated PSA of 6.7.  This has been noted to be common after BCG treatments and should be monitored prior to a biopsy of the prostate.  The PSA usually returns to normal after about three months so the wait and see is standard.  All other blood results are within normal range.
  • My standard daily meds are as of 10 April 2008:

2 Oncovite tablets

1 Glucosamine (500mg) and MSM (330mg) tablet

1 Garlic extract softgel capsule (1000 mg)

2 Advair inhales daily of 250/50

1 Coenzyme Q-10 capsule (30 mg)

2 Ph balcance capsules

1 Artemisinin 

  • On 6 May 2008 CT scan to further evaluate the lung nodule noted during the enhanced CT scan.  Results 7 May 2008 reported no change in the nodule so consequently not considered a problem.
  • 16 May 2008 had appointment with Dr. X and explained that I had pain in my left testicle, weak stream and frequent urge to urinate.  I need to urinate four or five times during the night. I told him about the elevated PSA.  He felt that I have an infection and prescribed anti-biotic different from what I had been taking.  He felt that the elevated PSA was a result of infection.  One week course of anti-biotic and then another PSA on 23 May 2008 followed by an appointment on 30 May 2008 to determine whether to start the maintenance BCG or further investigate the prostate.
  • The PSA on 23 May 2008 remained above 6.  Doctor cancelled the maintenance BCG and thinks he should do another PSA on 30 June 2008 and then a Cystoscopy of the bladder and biopsy of the prostate if the PSA remains elevated. 
  • Pelvic and lower back pain worsens beginning about 3 May 2008.  Scheduled an appointment with Dr. X for 6 June 2008.  Dr. X could not figure out what was causing the pain.  A urinalysis didn’t show any sign of infection but Dr. X prescribed Bactrim as a precaution.  He asked me to check back if the pain didn’t go away within a week.  Follow up PSA is scheduled for 30 June 2008.
  • After one week on Bactrim the more severe pains went away.  No noticeable problems but still a slight twinge when I get the urge to urinate.  Pain (slight) as usual, emanates from left side of abdomen.
  • On 24 June the lower back pain returns but might be due to working.  This time it is on my right side and it has always been on my left side before.  These pains seem to come and go and also occur in different locations of the pelvic/lower abdominal/lower back region. 
  • PSA on 30 June came back lower but still high.  Dr. X suggested that we do a cystoscopy and prostate biopsies at the same time.  I agreed.  On 9 July the cystoscopy and ten biopsies of the prostate were done.  The bladder looked good and the results of the biopsies will be available the 16th of July.  Minimal side effects of both the biopsies and cystoscopy.  As of 12 July, I feel pretty good with very little pain.  The PSA wasn’t done because we did biopsy instead.
  • On 18 July I received the results of the prostate biopsies and they were all negative.  One was undeterminable and we need to keep that in mind in the future.  Some blood and blood clots have passed and Dr. X would like to start maintenance BCG on 1 August if there isn’t anymore sign of blood by then. No pain or discomfort now at all.   
  • Received first maintenance dose of BCG 1 August 2008.  Almost immediately started a high fever and flu symptoms that were pretty bad.  Intermittent chills and sweats for three days.  Very weak and loss of appetite.  Abdominal pain, especially when the frequent urge to urinate occurred. 
  • On 8 August 2008 got my second dose of maintenance BCG.  Side effects same as the first one.
  • On 15 August 2008 I received my third of three BCG maintenance doses.  The side effects began as the same with fever and chills but about six hours later were accompanied by extreme  severe left abdominal pain.  Pain lasted for several hours before subsiding gradually.
  • On 12 November 14, 2008 I had a cystoscopy and viewed what appeared to be a suspicious red area.  Dr. X took two biopsies and results will be discussed 19 November 2008.  No after effects of the cystoscopy or biopsy.  No blood or pain urinating.
  • Results of the pathology on biopsy tissue are negative.  Plan to do a reduced blend (1/3 dose) of three treatments BCG beginning December 12, 2008.Regimen of daily vitamins, supplements and herbal  as of  15 November 2008:

        2 Oncovite tablets

        1 Artemisinin 500mg

        1 Glucosamine (500mg) and MSM (330mg) tablet

        1 Garlic extract soft gel capsule (1000 mg)

        2 Advair inhales daily of 250/50

        1 Coenzyme Q-10 capsule (30 mg)

        2 Ph balance capsules 

        3 Modified Citrus Pectin capsules

        1 Resveratrol + Grape Seed & Red Wine Extract capsule

        1 Flaxseed Oil capsule(1000 mg) with Omega 3

  • Number one BCG on 12 Dec 08.  Application very slow but painless.  After effects almost immediate with fever, chills and constant urge to urinate.  Side effects begin to ease after 2 days.
  • Number 2 BCG on 19 Dec 08.  Application was difficult and slow.  Slight amount of blood after it was finished.  Side effects start same as number one but more severe.  They did not subside for three days.  I nearly decided not to do number three because of the severity of the symptoms.
  • Number 3 BCG on 26 Dec 08.  Application not too bad.  Slight amount of blood.  Side effects immediate and severe.  Pain in the left side of my abdomen very bad.   Effects begin to subside on day three.  However, I felt very bad for several more days.
  • Scheduled for a cystoscopy on 26 February 2009.