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10 years 9 months ago #19810 by Rosemary
Susan,

I know how you feel. When I was first diagnosed with Superficial Bladder Cancer, my co worker brought me a "Cancer - Relay for Life" T Shirt. Although
I'm sure that she meant well, I really didn't want the shirt. I felt like she was saying, "Tag, You're it."

I want you to do something today. I want you to do just one thing for your health that will make you feel less helpless in this situation....maybe buy yourself some garlic tabs (recommended while on BCG protocol) or some green tea, or take a twenty minute brisk walk....

I'm heading out the door now to go to market to find some local honey and some squash to make a nice casserole...and...I'm wearing my Relay for Life T Shirt....

Take care...please do something to make yourself feel better....

Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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10 years 9 months ago #19809 by susant
i'm sorry ,but it makes me cry that there is still such a long road ahead of me. I want it to be gone! :( It's so hard sometimes .

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10 years 9 months ago #19793 by sarahlee
Hey Susan, Im on my way to the check up in Aug, that follows my 6 treatments we are at about the same place in time ,with me a few weeks ahead of you , I think I will be getting the extra BCG too, at 3 weeks a pop. I hope this stuff works ,just like everyone. atleast theres hope:) and other than being tired it wasnt so bad, more worrysome, I guess it just continues,thank goodness for that.to continue is a good thing.best of luck:)

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10 years 9 months ago #19788 by pemquid
Susant and Alan--
I'm following close behind you, in that I will very shortly be staring my initial round of 6 weekly BCG treatments. One of the fairly standard protocols, which is the one my uro uses, starts with 6 weekly (induction) treatments, a 3 months re-check (cysto) and 3 weekly maintenance treatments, and after that, each 6 months you get 3 more weeks of maintenance treatments, up to 3 years (with yearly maintenance treatments after that if you are in a higher risk category). You still get check-ups every 3 months during this time I believe. I've read that if the BCG side-effects start to get too severe during maintenance treatments, they reduce the concentration of the BCG and still have the desired effect on your bladder's immune response. (This protocol is sometimes called the the SW Oncology protocol, or Dr. Lamm's protocol.)

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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10 years 9 months ago #19777 by Alan
Susan, I am on the same pace as you. just finished 6 initial. My uro does those and waits 6 weeks then another 6 and that is it. Some uros insist on 3 as a maintenance. The studies I hane seen both have pros & cons and basically give similar statistics. But, who really knows as there is a lot they don't know! At least my uro is honest about it. Heck, they don't even know WHY BCG works! Other than it stimulates the immune system.

Yes, I had "mild" fatigue after #4-5 & 6. Just took naps. Low grade fever for a few hours after #2. That was all the side effects other tham mild discomfort from the cath. Hate to sue stats but 80%+ it works. The downer from what I have read is 30-50% is the probablity that at some point it will come back. Thus a need to repeat & all the checks.

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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10 years 9 months ago #19764 by susant
Does everyone usually have to do it all over? :( I thought maybe i could be cured sort of with the ones i had . :huh:

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