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I joined the BCG reactor’s club
Started on BCG in July 2008, and all was well up until this last maintenance series. I’ve now had a total of 18 BCG instillations, including the initial 6-week ones. Although I’d read of a lot of you with severe BCG side-effects, I had almost no symptoms with the initial 6-weeks or subsequent 3-week maintenance doses, and was being my usual optimistic self, and thinking “not me.” I knew the effects of BCG are cumulative, but I guess I thought that meant also that you would have cumulative or gradually escalating symptoms. My happy bubble burst last Thursday (Nov. 5), when I came down not only with a fever on the day of the instillation (which I’d had once or twice before), but also with very severe pain which has persisted off and on ever since. No bleeding, just very sharp cramping-like pain very low down (feels like labor pains in the urethra). Finally called the urologist Saturday morning, and he’s given me Detrol-LA (for the cramping) and another for irritation/pain (forget the name–it’s the one I think derived from chrysanthemums and turns your urine bright orange-yellow).
The urologist suggested stopping the BCG altogether when I spoke with him on Saturday, but I said I might like to try the reduced dosage option next time (which won’t be for another 6 months). Now I’m not so sure about that, given that it’s taking so long for the symptoms to let up. I’m definitely a little better each day, and can sleep through most of the night, after being in such pain the first two nights I kept getting up and pacing around.
Any advice? Given that I had a very low grade non-invasive tumor the first time, and that the recurrence was the same type and not for two years, I don’t think I’m in a super high risk group. I’m now 16 months out from the time of the recurrence, and am still all clear–but I have no way of knowing if that’s because of the BCG or if it would have been like that without it.
Nix, Sara Jane and others whose BCG travails I’ve read about — now I know all too well what you’ve been through, and I know my symptoms haven’t been as bad as some of you!
One other question: How can you tell the difference between an infection and having a more “mechanical” irritated bladder reaction to BCG? I only had a fever (101.6) on the first day and not since then, so I’m assuming this isn’t an infection.
Ann :(
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.25 Replies-
I see. You are saying he still plays the old fashioned way. I thought he had somehow figured out how to use his neo to swing the club. :D
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Moonerj wrote:
Well I am sure Dennis would give you guys this advice.
Work-out 3-4 times a week
Lots of endurance exercises
Smile no matter where the ball goes
Golf is a hobby not your job
Drives are only measured in yards not in your score
Insure holes 1 through 18 as as much fun the 19th
:)
The above are usually his favourite quotes, he is one of the nicest persons you could ever meet, not a mean bone in his body, and you would never know he had a neo.
JackPretty good ideas to live and play golf by.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Well I am sure Dennis would give you guys this advice.
Work-out 3-4 times a week
Lots of endurance exercises
Smile no matter where the ball goes
Golf is a hobby not your job
Drives are only measured in yards not in your score
Insure holes 1 through 18 as as much fun the 19th
:)
The above are usually his favourite quotes, he is one of the nicest persons you could ever meet, not a mean bone in his body, and you would never know he had a neo.
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
I’m with you Mike……….How about group lessons!!!!
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
I certainly understand wanting to keep yours Jack.
Hmmmm…I haven’t figured out how to swing a golf club with my neo yet. Maybe you can have your friend send me a private message with instructions. I’m only 50 and I’m not hitting drives like that! :D
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I am glad you guys are happy with your neos.
I will do whatever it takes to keep my orginal,thanks :)
I have a friend who got his neo in 1991, the son of a gun can out run me, and still hits his drives 275yds and he turns 70 next year. :)Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
I agree with you Jim!
Granted, I was a BCG dropout anyway due to severe reaction. Had that not been the case, I’d sure liked to have stayed on it though.
Given it wasn’t an option for me, I am certainly glad I got the neobladder!
Even with the miscellaneous complications that I’ve had, I am one happy camper.Mike
P.S. Jack: Neobladder = Bladder gone, therefore bladder cancer gone forever (as long as they get it before it sneaks into other places). :)
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I had 30 treatments of BCG. I did stay at full strength for the treatments.
My last 18 treatments, especially my last 12 maintenance were very difficult.
I found taking very warm baths, and a heating pad helped for the few days after treatment.
I have been cancer free for 25 months now.
Everyone reacts differently to the treatments.
I am fortunate my tumors were noninvasive low grade.
I wish you all taking treatments well.
BCG = Bladder Cancer Gone
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
This may sound stupid, but after reading this thread, I am glad I got a Neobladder, and
got it over with, once and for all.
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
I agree Nix – keep the fingers and toes crossed. I also e-mailed Dr. Lamm when my reaction started – his response was to reduce the amount if we returned to the maintenance schedule unless I couldn’t tolerate it at all. So we shall see what the future holds.
When I started to get worse with the 22nd BCG (in a Maintenance of three) my Uro reduced to 30% then 10% It was of no use, the BCG tolerance and my angry bladder did not do well at all.
I had written to Dr. Lamm, and asked him how low of a dosage that we could go and this is what he wrote back: [i] We go as low as 1%. You can also reduce retention to 30 minutes or less.
I also sometimes give heat inactivated BCG to those who do not tolerate
live BCG.
Don Lamm, MD
On Sun, 24 May 2009 19:22:39 -0400, [/i]
My Uro said now, no more BCG, so I guess I will cross my fingers toes and eyes and hope for the best. :SNix
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
I haven’t been on the computer for a while and find it interesting reading about the comments regarding BCG. I too can not tolerate it, after my 4th treatment – I woke up to swollen eyes, and the start of arthritis in my wrists and knees that took a month to come out of. I have had my regular 3 month cysto with no signs of reoccurance, but have wondered without the maintenance am I more vulnerable? We did agree that if I have a reoccurance that we would decide the best course of action at that time whether it be lower dosage of BCG or what (hoping that time never comes)
Bobbia recent study adding fluroquinolone to BCG reduced toxicity
free to register and readhttp://www.urotoday.com/3392/urotoday_international_
journal/new_in_press/safety_and_
efficacy_of_ofloxacin_on_bacillus_calmetteguerin_
induced_toxicity_in_patients_with_superficial_bladder_
cancer10052009.html?s_cid=uijipapat
I feel for everybody. It s*cks!!!!! I went thursday (12/10/09) and was still peeing pices of stuff and blood with pain this morning. (sunday) It was my second week of my 3 week treatment and they tried the reduced amount and it was worse than last week.(full strength) I think if I can reduce the pain I can deal with it but it seems to get worse every time. I was getting a fever in the past, but started taking tylenol and the fever has stopped. Still feel like I got run over by a truck.
I want to keep taking it but dont know.
Any body know about BCG and Interferon?
Jon
:woohoo: BCG 3-7 were murder, so at 8 & 9 we went to 30%. Still murder, the only difference was that there was no “blood-clots”, just blood :S Still murder at 30%.
Will see an Infectious Disease Specialist tomorrow, for what seems to be a 4-month long prostate infection from BCG :side:
Seems I am one of the “X-#” that just can not tolerate BCG, in fact a Dr at UVA suggested I take no more BCG. I have my next 3-month cysto in Feb and I am changing to a new Uro!
So, I know what you are going thru.
62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)Sign In to reply.
