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Yesterday I had my 3 month scope and was all clear. Over the moon as this has been the first time in 2 1/2 years I have gotten 3 consecutive good scopes. My doctor after the second round of BCG said no more as was concerned about side effects. I tolerated it all with very little problem so was very anxious and upset so wasn’t sure why he was not going ahead with the maintenance. Have had 2 full rounds of BCG and one maintenance. Also 2 reoccurrences sine February 2012.
Though after the results yesterday expressed my desire to do more treatment and told him data proved maintenance was beneficial. He listened and agreed and said he would start the maintenance program for 2 years but a lot of people can not tolerate it. Was so happy he agreed forgot to ask the time line. Is it 3 BCG’s every 3 or 4 months? Just asking for feedback if anyone else on this and how they made out and if were able to finish it. ThanksHi Yogagal!
Congrats on the all clear! Party time for sure. I’ve done 21 BCGs and lived to tell the tale. I had a round of 6 (once a week for 6 weeks) following my first TURBT in 2008. My then uro was of the opinion that you start with 6 weeks and if you get a reoccurrence (which I did in 2010) then you do a second round of 6 weeks with 1 year of maintenance. However most others on this site and I’ve since learned from talking to my new uro is that the majority of docs now prescribe 6 weeks, followed by 1 yr of maintenance which is sets of 3 (once a week for 3 weeks), the first set occurring 3 months after the start of the 6 week set, take a break for 3 months, do the second 3 week set, break for 6 months and then do the last 3 week set for a total of 15 treatments. I had hefty side effects from the get go and the doc had to reduce the dosage to 25% for the last few or I would have stopped. Everyone is different in what they can tolerate. Many docs would like to see their patients do 2-3 years of treatments but as you mentioned this is not well tolerated. After 21 I told my doc I was done. He agreed because I had done close to 3 years worth of treatments and most of them at full dose. The other deciding factor was that I’d only had one minor reoccurrence – none since completing the last 15 treatments. I had just done it on a different schedule.
My suggestion would be if you feel strongly about the maintenance – ask him if he
would agree to reducing the dosage if side effects are too strong – as an additional word of caution – I’ve talked to others doing BCG. Many haven’t had side effects for a lot of their treatments and then all of a sudden “BOOM” all h*** breaks loose. I wish you best of luck. If you can get this done – hopefully the BCG will do the trick and as Jack says BCG = Bladder Cancer Gone. Keep in touch and let us know how it goes.Great news on your 3rd all clear in a row. Maintenance BCG do vary somewhat depending on the Uro and the patient’s ability to tolerate the treatments.
Most common seems to be 1-3 years, Many Uros will reduce the maintenance treatments to 1/3 strength is the patient is struggling with side effects at full strength.
Good luck with your upcoming treatments.
BCG = Bladder Cancer Gone!
Jack
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