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BCG dropout….now to Mitomycin?
Some of you may have seen my posts last week about having a reaction to the BCG. High fever, light-headed (blood pressure drop), starting on Cipro, etc.
I went in today for a follow up with my Uro and he said it was a reaction and not a side effect. Switched me to mitamycin (MMC) instillations. Didn’t have much info at his office on it so I’ve been trying to find research online. Seems everybody wants a paid subscription for information on this treatment.
I’m really bummed. I was feeling very positive about the statistics on bcg treatments. From what I’ve found so far the results are not nearly as good as bcg but if bcg will kill me next time, I’d rather avoid that option as well.
Dr. Lamm responded to an email I sent via his website that it’s possible I could take bcg at reduced strength in combination with cipro. This is really confusing because cipro reduces the effect of bcg PLUS have a reduced dose to begin with… I wonder if there is any point in even trying it. Even Lamm’s studies show that strength is important so if I took a super reduced 1/10 or 1/30th then what chart should I be looking at for efficacy? Lamm did say it was quite rare to get my reaction after only the 2nd dose so I guess I’m in that unlucky group statistically.
Anybody have some good information on mitomycin, experience with it, or general advice?
Did I mention already I’m bummed? I was hoping today was a visit to the Uro where we just talk about things and I’d get to keep my pants on. Wound up getting the MMC though after a good bit of discussion.
I can tell you it was WAY better than either of my BCG treatments. No chlorine, no burning, no spasms, no fever, no chills. I just need to see some information that demonstrates that is not also “no good”!
I had ONLY CIS (2cm) with no other tumors. As far as we know, the Uro got it all when he did the TUR (we had clean margins).One study I found on MMC said don’t do it if there wasn’t some cancer present “The use of chemotherapy in the absence of existing malignancy should be avoided. Animal studies have demonstrated that repeated instillation of thiotepa, doxorubicin, or mitomycin C can induce hyperplasia, dysplasia, carcinoma in situ, and even, in the case of mitomycin C, invasive transitional cell carcinoma (Friedman, Mooppan, Rosen, & Kim, 1991).” This is kind of scary!!!!
Has any study been done since then that indicates getting 6 instillations of MMC when no cancer is evident is going to help me at all and not wind up causing me to get it again?
Mike
Male, 47
Smoked 35yrs
TUR 10/31/06
dx CIS 11/3/06
last cigarette 11/4/06
bcg dropout 12/15/06 after 2 treatments.
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.8 Replies-
Mike,
If you are not happy with going the MMC route, perhaps you could discuss other things out there, like the BCG+IFN protocol. Are you near a major cancer center? Maybe there’d be a good clinical trial for you with something cutting edge…like Urocidin. And I’d love for anyone who’d has a CIS dx to be able to get the fluorescent cysto stuff, it’s so much better than regular cystoscopy for CIS, it seems unethical that it’s not standard procedure yet, but it’s still in phase III trials in the US.I’ve heard that people sensitive to BCG can get the BCG+IFN combo without trouble. That may not hold true for you..plus that treatment is hard to get sometimes due to the expense etc etc.
I know it must be tough!
Wendy -
Wendy,
Yes, I’ve read the webcafe information you referenced and other things I could find through google searches. Many of the them are links to sites that require a subscription and are really for doctors. I’ve asked my Uro’s office folks to see if they can get me more information on research.
To your question on my original dx, it was CIS. I was having repeated UTI’s, microhematuria, and some pain in the bladder area. The Uro did a cysto and saw a reddish spot about 2cm x 1cm. On Oct 31/06 he did a TUR and it was determined to be CIS. No other tumors anywhere were found.
Thanks again,
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.
One study I found on MMC said don’t do it if there wasn’t some cancer present “The use of chemotherapy in the absence of existing malignancy should be avoided. Animal studies have demonstrated that repeated instillation of thiotepa, doxorubicin, or mitomycin C can induce hyperplasia, dysplasia, carcinoma in situ, and even, in the case of mitomycin C, invasive transitional cell carcinoma (Friedman, Mooppan, Rosen, & Kim, 1991).” This is kind of scary!!!!
Has any study been done since then that indicates getting 6 instillations of MMC when no cancer is evident is going to help me at all and not wind up causing me to get it again?
Dear Mike,
I’m sorry to hear about your ongoing problems. I’m in Europe and there’s been a debate going on for many years with European experts declaring that MMC is just as good for bladder cancer as BCG, except that BCG clearly is superior with CIS (carcinoma in situ) if maintenance is used.
There is a big load of info about the usefulness of MMC. There are very studies discussing the fact that it (and all chemos) are carcinogenic as well. The study you quote makes a lot of sense, saying that the risks have to balance with the benefit. That same logic holds true for any medical treatment out there.
Have you read the info on webcafe about Mitomycin? It starts on this page, and links to a separate page about Mitomycin’s new protocols:
http://blcwebcafe.org/intravesicalchemo.aspWhat was your original dx?
All the best,
Wendy
Thanks Rosemary,
I will check it out.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.
Yep, it does sound like a serious reaction.
Can I just recommend, based on personal my personal investigations, that you take an Aged Garlic supplement also?
It can’t hurt.
If you want to look it up on the net, just google Lamm/Garlic. I don’t know if he has done research on garlic and CIS, but will check on it later. Gotta go back to work now….
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Yes, I did speak with him about reduced dosage. I was already on 1/2 strength doses. His concern was that a further reduction of dose wouldn’t really be good enough vs the risk of sepsis for me. Since I had the light-headedness (to the point of almost passing out) and some rash (even from the first treatment) and the high fever for almost 48hrs even with antibiotics and acitominophen my risk of a worse reaction the next time was just too high. Even Dr. Lamm said it’s rare to have the problems I had on only the 2nd dose and that I appear to be quite sensitive to BCG.
In fact, I agree with my Uro but it was just a real dissappointment because BCG has such a good track record for CIS. Studies say that those who got a fever from it had an even lower recurrence rate. Hopefully, I’m just SO sensitive to it that it did the trick for now. Of course, I don’t get to do maintenance doses.
Going to go back for biopsy again in late January so hopefully, I’m still clear. Started on Oncovite today and that has shown some good statistics.
I’m really interested in finding some statistical information on the efficacy of Mitomycin for CIS. If anybody comes across some good data, please let me know.
Thanks.
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.
If this does not work you might want to look into interferon it took care of mine, But i do alot of herbalistic meds. Don
Hanging in there!
Mike,
Have you talked with your Uro about reduced dosage? It sounds like you might be more confident with this solution.
The Bladder Cancer Specialist at UNC Chapel Hill said that if I was too “miserable” that I could reduce dosage. A little may be better than none.
Just a thought.
Please keep us posted,
Rosemarydx Jan 2006
Ta G2
Mitomycyin x 2
BCG x9
Tumour free since February 2006
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
