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BCG + Rash = FAILURE

5 years 8 months ago - 5 years 8 months ago #44575 by Phillip
Alan,

Thanks for the link. Interesting to read that parts of the mycobacterium evoke immunological responses similar to live ones. Past data have shown that the vast majority of us (80+ percent) become BCG intolerant. This may hopefully soon be another option for many of us.

Phillip

DX: Ta Nov 2011. Age 62
Four TURBTs - Two recurrences.
BCG maintenance #2. Stopped Mar 2013

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5 years 8 months ago - 5 years 8 months ago #44571 by Alan
Phillip,

Besides mytomicin, there is a fairly new therapy called micobacterial therapy-which from what I have read is somewhat akin to BCG in its action. You may have to get to a major bladder cancer center to ask about it as it just left the clinical stages a few years ago and I have lost track of where it really is. Leaving a link which I hope will open for you: http://www.jurology.com/article/S0022-5347(08)03046-2/abstract

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.

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5 years 8 months ago - 5 years 8 months ago #44569 by Phillip
Thanks to everyone for your replies. My last BCG instill was two weeks ago tomorrow. My rash/hives still persists - sometimes with a vengeance. Benadryl is keeping it bearable – sort of.

Joey, thanks for sharing your personal experiences with your rash. I’m beginning to wonder if my rash, like yours, perhaps is really more of an intense immunological response to many allergens, instead of just BCG. Minor scratches become red within a couple of hours. This, it would seem, is a positive response (?)

Thanks Sara Anne for your suggestion to contact Dr. Lamm. One of my docs at the VA knows him well and is going to contact him to see if I’m a good candidate for interferon or perhaps something else. Hoping to hear something soon.

Mike, I did have Mitomycin C post-op twice. The first TURBT there was some concern that the growth was a T2 - which precludes using MMC.

Phillip

DX: Ta Nov 2011. Age 62
Four TURBTs - Two recurrences.
BCG maintenance #2. Stopped Mar 2013

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5 years 8 months ago #44557 by Joey
Phillip, I have had 30 BCG treatments and did have a rash some of the times after the treatment. Generally the rash would appear about the time I was starting to go through most of the side effects. My rash would be on my back, chest, neck and upper arms. It would go away within two days. I have not had a recurrence since my first one in April 2008. My rash I believe was my immune system reacting to the BCG. Even before I had cancer, sometimes I would get the same rash before I came down with the flu etc.

Joey
The following user(s) said Thank You: Phillip

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5 years 8 months ago #44552 by Phillip
Like most everyone who is on this journey - I was hoping to be the tough guy or gal. Even spouted-up on this past Sunday's Chat (my first one) that I was hoping to go full-strength for the next 2 maintenance instills. Well, so much for the bravado. Yeah, I could tell there was an allergic reaction coming on. Hindsight being what it is, and from more info now, wishing I would have started at a lower dose on the maintenance rounds.

I came across more info about the residual effects of BCG and even with failure, a little boost from interferon may salvage something. Always another rung to grab for...

Phillip

DX: Ta Nov 2011. Age 62
Four TURBTs - Two recurrences.
BCG maintenance #2. Stopped Mar 2013

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5 years 8 months ago #44550 by mmc
That's likely an allergic reaction. Means BCG could really mess you up or worse. Anaphylactic shock is a risk from allergic reaction. Pretty much can't do that BCG stuff any more.

Maybe your uro will look at mitomycin as an alternative. I know how it can bum you out. I failed BCG also about seven years ago. Really bothered me but I had the high fever, chills, etc. and sepsis was the concern. I still think I could have done a 10% solution like Dr. Lamm recommended but that is now water under the bridge and I don't go to that uro anymore.

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...

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