BCG News - Good News - and Bad News - October 4, 2009

One thing new to report from my last round of BCG is the emergence of the "flu-like" symptoms that have been described by so many as a side effect. My past BCGs have pretty much been a day of misery and urinary fire, then being a bit fuzzy or tired until the afternoon of the day following. With the reduction to 1/3 dose several months ago, the misery of the day has been dramatically reduced. All of those have been tracked on my BCG backup pages in great detail. But the last round was different, because of the increased flu-like side effects for 2-3 days after the BCG day. It starts with loss of appetite the afternoon of the treatment, with a pretty good headache the night of treatment day. Then near-total exhaustion, cramps, body-aches, and even minor chills through the night and all the next day or two. My final treatment last week was the worst so far - not the urinary symptoms or duration, which were fairly mild. But I had a two hour nap in the morning followed by a 4 hour nap after lunch on the day after the treatment. Mental functions seemed fine, but physically I was just exhausted. I skipped a nap on Saturday, 2 days after the treatment on Thursday, but that was a mistake. After going out for a long, late brunch on Sunday, I came home and collapsed into bed for a couple hours. Each day of the workweek showed a significant reduction in tiredness, and by Friday (8 days after treatment) all was pretty much back to 98% of normal. All of these symptoms are a good sign that the body is reacting to the BCG, which is exactly what we want it to do. But I have not tracked these symptoms in the past. If they recur next time (scheduled for March 2010), I will start reporting them for your education and entertainment.

Next we have some absolutely brilliant good news from David F. in England. He met with his "consultant" (doctor) on Saturday to review his case. He received a near-final "all clear" based on the results of his last biopsy. While some atypical cells were present, it was not considered to be a problem. The consultant toyed with the idea of "retiring" David to annual flexible cystoscopies (for life). But instead she chose to do one more "final" hard cystoscope and biopsy next April, the "gold standard" treatment to guarantee all clear. It seems to me that this is exactly what David was told last time, but he is in for one more trip to the hospital for a most unpleasant diagnostic. He is good with it, so all the rest of us will celebrate with him for the near-perfect good news he got last Saturday. Only one more procedure for him to be free from major interference for a lifetime! Here's a pic of Gemma Atkinson raising a pint in celebration of David's very good news indeed...

On the flip side we have some bad news from HK in Toronto. From the very first time his BCGs have been far worse than any others reported to me. During his first series of six, he was in absolute agony. He wondered to me if it was better even to die. I suggested discussing reduced dosages with the doctors. They gave him pills and pretty much treated him as he was just a complainer. The next series was also bad, and the last one was cut to 50% dose. It was almost too much for him to bear. After an initial diagnosis of epididymitis, they finally diagnosed him with BPH - Benign Prostatic Hyperplasia, a non-cancerous enlargement of the prostate. This condition makes the TUR surgeries, the insertion of the BCG tube, and the voiding of the BCG and other bits all VERY PAINFUL. He has suffered much, and now the Canadian doctors have him on Flomax, Cipro, and Phenazo, for urinary symptoms, and Celebrex plus Tylenol #3 (with codeine) for pain. Here is how HK describes his symptoms:

1) I get pain from to waist right to the perineum (sharp pain)
2) At night I get up every hour to go to the bathroom to urinate, but it does not empty
3) Sometimes I can not walk properly because of all the pain

The docs have told him no more BCGs forever. If his cancer returns, they must find another treatment. HK has had bloodwork taken (no results yet) and and had cystoscopy, urine test and a CT scan. Cysto was clear except for evidence of sever reaction to BCG. He will have urine, bloodwork, and CT results within the next two weeks.
He asks for all our prayers for an all-clear cancer report and relief from his agonizing pain.

Despite HK's rough times and suffering, he is continuing to research and study the problem. He found the very encouraging video below, which is a treatment that can be given by the Valley Cancer Institute in Los Angeles. Their website is full of advertisements, testimonials, and some research describing the process and its effects. But it does not say whether such is covered by insurance or how much it costs. Still might be worth looking into for those seeking an alternative to BCG.


A Dived Ref said...
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A Dived Ref said...

Hi Steve,

Thanks for the kind words and also Hang on in there HK in Canada.

As you know one of the biggest problems I have is not having any "gas in the tank" every now and then which as I understand it is because my body has been battling cancer, growing new cells and replacing the bladder lining that BCG sets about. There is a good site and this link gives a bit more . I was talking to a friend of mine who had his Prostate removed and he suggested that the body has gone out of balance and that it has taken him close to 3 years to get somewhere near back to "normal". I find that if I overdo it then the fatigue crashes in most unexpectedly. It does get better though and exercise and diet are all the right things to be doing to combat it. All the best and I hope it doesn't last too long for you.

Edited original as there were typos.