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Maintenance therapy vs No maintenance therapy for CIS

4 months 2 days ago #59006 by sara.anne
BCG definitely does have some side effects. Its purpose is to stimulate the immune system so that the bladder lining will reject cancer cells. The side effects are due to this action. Fatigue, urgency, bleeding for example are all side effects that can/do occur with BCG and they do increase as the number of treatments increases. These side effects are bearable (and if they are not, even with reduced dosage, BCG can be discontinued....the doses already given are effective!) and are certainly much less than with other types of cancer where traditional chemotherapy is indicated. Several times my treatments had to be postponed due to irritation (BCG-induced cystitis). But I am so glad that I did finish them.

No, once I had healed from all the treatments life became normal again.

As for "other things" I believe that it is never a bad idea to have a healthy diet! BUT whatever caused the cells in the bladder lining to become "unstable" and become cancerous probably happened many years ago. Suddenly using trendy supplements or faddy diets will, IMHO, have no effect on anything except your wallet! Hydration by drinking a normal, not excessive, amount of water and other fluids is a good idea of course.

Hope this helps

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 months 2 days ago #59005 by Alan
Ah! I sometimes do not read well...I see the 4/2019 CIS. If he can tolerate it another course or more of BCG won't hurt. As mentioned prior as well as Sara Anne a reduced dosage often is a good compromise.

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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4 months 2 days ago #59004 by swarmy2007
CIS T-1 High grade here 3 x Turbts followed by 6 week BCG (return rate 4-6 months). Failed last series BCG so they switched me to Gemzar and seems to have finally worked. Am doing 3xmos maintenanc3e Gemzar x 3 weeks and so far 1st go round good do next scope/ maintenance starting next week. Know BCG Gold standard but it failed to keep mine at bay and my fevers got so high and so sick doctor pulled plug and switched me to Gemzar. Appreciate any comments/observations on my story for running blind this stuff????

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4 months 2 days ago #59003 by Kath
Sara-anne,
Thank you so much for the personal story. Congratulations on being cancer free for 12 years!

I was wondering if you employed any additional strategies such as alteration of your diet or supplements along the way?

I hope this is not too personal but I was wondering if you suffer from any long term effects of the BCG?

It is really hard when I read medical information from trusted sources and the doctor doesn’t follow it. I do understand everyone is different and treatments have to be “personalized”. He did have some fatigue and fever for a day after the treatments but otherwise he did well. And he feels fine now.

You are right. More discussion is necessary with the urologist. I am wondering about a less frequent series of maintenance dosing.
If anyone has any literature to share on this it would be great.

Again thanks Sara-anne.

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4 months 2 days ago #59000 by Kath
Alan,
Sorry if I wasn’t clear. His biopsies were both positive for high grade urolitheal cancer however the second time it had progressed from a tiny tumor to CIS which I understand is more concerning for progression. It was about 2 years apart and he did receive BCG induction dosing after both. I am convinced he had the CIS starting at least 6 months prior to when the urologist did the biopsy as Dan was symptomatic with frequency, urgency and pain.
I am nervous about him not getting maintenance since it was CIS this last time. His CIS wasn’t visible to the doctors naked eye with the cystoscope. I pretty much had to insist a biopsy be done.
I think I may be leaning towards having the maintenance... for peace of mind and discuss dosing alternatives.
Thanks for your input. I hope you are doing well.

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4 months 2 days ago #58996 by sara.anne
I don't have the references right at hand (perhaps someone else does and will post them) but maintenance therapy with BCG HAS been shown to significantly improve the statistics for high grade bladder cancer, especially CIS.
I had CIS and was treated with an initial induction series of BCG followed by maintenance of 3 weekly doses every three months until two years had passed. I have now been bladder cancer-free for almost 12 years. (just made my annual urology appointment for next month!)

Yes, there are side effects from BCG and they increase with increasing number of doses. This indicates that it is doing exactly as intended....kicking up the immune system. If the side effects become too unpleasant the doctor can reduce the amount of BCG....I was on 1/3 the original dose by the end. The side effects are nothing compared to what could happen with a recurrence. AND should the side effects become unbearable, BCG can be discontinued, of course.

As you mentioned, the current "standard of care" requires maintenance doses of BCG. It sounds like your current urologist might be "old fashioned."

You do have some decisions to make. I would discuss this issue again with your current urologist and the second opinion doctor if you have any questions.

Sara Anne

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