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BCG Reaction
I’ve been reading posts for so long you’d think I’d remember these discussions, but I don’t. Last time I had BCG a year ago for my first recurrence of CIS I had a reaction to the last treatment. This time I just finished the third BCG/Interferon treatment and I’m having dysuria, frequency, constant burning & pain, and generally feeling crappy as a result. Pyridium, Urelle, ibuprofen, and wine take the edge off. My last treatment was Thursday. It’s Monday now and every time I think I’m getting better the symptoms return with a vengeance. Perhaps the fact that I have to catheterize myself Saturday and Monday so that my most recent stricture will stay open for the treatments adds to the irritability. I don’t see how I’ll be able to hold the treatment in my bladder for 2 hours feeling the way I do, to say nothing of my anxiety about escalation of the reaction. So, has anybody had to delay or interrupt treatment for a reaction? If so, what happens?
– Warren
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician14 Replies-
Sounds like you’ve been through a lot and still manage to have a positive outlook. I worry about the possibility of having an RC. I would opt for a Neobladder but would stress about if I would be able to manage it well.
Thanks for sharing your story
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Most of my problems have been complications of treatment. I do have a neobladder, and did well with the surgery, but was completely incontinent afterwards. After a year without improvement, I finally had an artificial sphincter installed. 6 weeks after it was activated, it eroded into the urethra resulting in swelling and severe pain, so I had to have surgery to remove it. I’ve learned to roll with the punches. I haven’t missed a day of work except for the surgery.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Wsilberdtein,
The pain I’m having is excruciating, it’s been 4 days since my last treatment and I’m in constant pain. If I do anything physical my bladder goes into spasms and the urethral pain keels me over. It’s encouraging to hear that the Miomycin was successful for you, sorry to hear that you had an RC. Did you have the Neobladder surgery? If so, how are you doing with it?
14 years ago I had mitomycin C instead of BCG. I remained cancer free for 10 years after that. I had BCG for my recurrences after that. The second time was hell… and it didn’t work.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Having very bad pain after the 3rd treatment and we reduced the dose to 1/3, I called my Uro and we will skip next weeks treatment. The following week we will try 1/10 dosage but he said if I still continue to have this severe pain we will have to stop BCG.
Really!! Can my bladder be spent after 9 BCG treatments? that would suck but from reading trough some post I see that Mitomycin is an alternative treatment.
Your welcome, Raider! Heck, it just sounded correct to cut the dosage and as many have said, the efficacy doesn’t seem to change. The only reason why I am “tuned” into it is if I have to do it again, it will be at a reduced dosage.
Hope you are or can get back on the links soon!
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.
OK, 3rd treatment of 2nd round yesterday with reduced dosage 1/3 BCG + Interferon. The side affects are better than last week with full dose although yesterday was painful at times. Much better today with the side affects.
Thanks for the advice Alan!
Good advice Alan!
I’m going to reach out to my Urologist today to discuss
Raider,
Not to alarm you but, too much can also be bad that is why decreased dosage is sometimes good (1/3 to 1/10th). On my 11th and 12th treatments I was only able to hold it 35-40 minutes so I was close to cutting the strength. Also, there are risks in too much. One acquaitance actually did damage his bladder after hyper sensitivity so listen to your body! Talk with your URO!
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.
I’m on my 2nd round of 6 week treatments, first round started in March and was BCG only. I just finished my 2nd treatment of BCG (full strength) + Interferon. My side affects have increased and the painful urination last much longer. At this point I don’t feel like I want to ask for a decreased dosage, I want every opportunity to clear what cancer still remains from the 1st set of treatments
I have heard that a decreased dosage is just as effective but if I can deal with some pain and fatigue for a month or 2 I will
Will,
I think you should ask Dr. Lamm. http://www.bcgoncology.com/treatment/bcgInst.html
The link to ask him a question is toward the bottom of the page.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 believe I am on half strength BCG because of the interferon. Does that change anyone’s opinion?
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Yes, Warren. To all of the above. Several times during maintenance I had “BCG-cystitis” and the infusion was delayed for a week. By the time I finished, I was on 1/3 the beginning dose. Mike is right….get your dose REDUCED.
My uro explained to me that there is no scientific reason for the dosage used. That is just the amount that the companies packaged and was available when this was first used! And Dr. Lamm, as Mike mentioned, states that even 1/10 dose can be effective!! As Mike points out, it is well worth it to work with the dosage. And the two hours is not gospel either…just the longer (up to that) the better. Sometimes I didn’t make it.
The lower dose may also help with the crappiness (clinical term for fatigue, painful urination, etc.)
BUT remember that these side effects mean that your immune system is kicking in. Much better than having NO reactions, no effect.Stick in there, if you can.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Will,
If the reactions are increasing, ask about reducing dose strength.
According to Dr. Lamm, even a 10% solution shows no reduced efficacy.My reaction was so strong that I was not allowed to continue. Very high fever for days, shakes, etc.
My local uro wouldn’t to the reduced dose and I was too naive to argue at that time so they just switched me to mitomycin for a few treatments and then waited for it to come back invasive two years later. If I knew then….
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.Sign In to reply.
