I joined the BCG reactor\'s club

14 years 4 months ago #28682 by sara.anne
Replied by sara.anne on topic I joined the BCG reactor\'s club
Ann, I am chiming in here just to reinforce what everyone else
has said. I, too, have six months to decide whether to continue. The last series was done at 1/3 dose, and if I continue, my next will be no more than that...maybe less.

My uro says that not many make it to the end of maintenance treatment, due to side effects. I REALLY do not want a recurrence, so will probably try again with the lower dose.

With three treatments each time, a week apart, it just really knocks me out for a month.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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14 years 4 months ago #28681 by Nix
Replied by Nix on topic I joined the BCG reactor\'s club
Ann, I am happy you are feeling better :) but listen to your body. I can only tell you about my reaction to BCG. Since I had cystitis, for over 5 months after my last maintenance dose (#24), I switched Uro's, only because my old Uro did not recognize my symptoms and get me on the proper road to recovery. My new Uro, only does BCG and Bladder Cancer. After my first meeting with him in August, he said he did not think I could tolerate any more BCG. Then in Oct. my cysto was clear,(Two years Clear) but my bladder still had inflamation and two red spots not healed yet.
I did contact Dr Lamm (last April) and he said "with BCG less is better - 33% all the way down to 10%".
Hopefully, my CIS will not return, but we will keep a close watch.
If you and your Uro decide to go on with BCG, I would strongly suggest you discuss with your Uro to reduce the dose to at least 33% for your next dose, and see if it helps.
Everyone is different, and reacts differently, but most important is to listen to your body an feel comfortable with the BCG.
Good Luck - I hope this helps,

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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14 years 4 months ago #28676 by Moonerj
Replied by Moonerj on topic I joined the BCG reactor\'s club
Hi Ann
Glad to here you are feeling much better.
My Uro advised me to reduce the BCG dosage during my maintenance treatments due to the side effects I was having.
I was too much of a block head to listen to him. I figured that by reducing the dosage I would be getting, reduced effect from the treatment. I was so wrong. After reading from Dr.Lamm and speaking to Canada's top Uro they both agree that a reduced amount can be just as effective as the full dose during maintenance treatments.
Like you said you have 6 months to make the decision.
All the best, and enjoy the vacation from treatments.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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14 years 4 months ago #28675 by pemquid
Replied by pemquid on topic I joined the BCG reactor\'s club
Mike and Jack--
Thanks very much for your prompt replies. Knock wood, but I'm feeling way better now, at a time of day when I'd previously been feeling lousiest (dinner time/evening). So, hopefully I've turned the corner in terms of symptoms (or my bladder has decided enough already and has calmed down). I'm going to bet it isn't an infection, but if I have any other symptoms pop up (or return)I'll head right in and get tested.

I have six months to think about what to do, but would like to continue the BCG at a reduced dose if I can tolerate it. I'm OK with pain for a day or so, but having it last so long has been a bummer.

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.

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14 years 4 months ago #28674 by Moonerj
Replied by Moonerj on topic I joined the BCG reactor\'s club
Dr. Lamm no longer has the email system avaiable. :( :(
to answer questions
Insurance issue :(

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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14 years 4 months ago #28673 by mmc
Replied by mmc on topic I joined the BCG reactor\'s club
Could be infection.

Also, low grade fever is a common side effect that can last a day to a few.

Reduced dose is probably warranted next time. You might want to go the "Ask Dr. Lamm" website and get his opinion. You can do that through the website. He told me once that I could go as low as 10% but my uro talked me out of it because I had the >102 fever, chills, etc. for a few days and my doc was concerned about possibility of sepsis for me. My symptoms and grade were different than you though.

The "turn your pee orange" is Pyridium® (phenazopyridine hydrochloride).

If your symptoms last a long time and it's not an infection which can be taken care of by antibiotics, then stopping BCG maintenance is certainly worth considering. Since you had low grade, the risk of stopping (as long as you stick with a 3 month follow up cysto) probably wouldn't be so bad. If it was high grade, then my suggestion would be to try to stay on it if at all possible, but your's isn't.

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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