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6 years 9 months ago #43606 by mmc
Kathy,

You should ask his doctor what the treatment plan is for his "BCG Maintenance". Yes, it is normal to do the treatments, then wait, then look, then follow up with a maintenance schedule. I haven't seen anywhere that his doctor has a plan for the maintenance yet and that is important.

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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6 years 9 months ago #43605 by shihtzudaddy
Yes, he was started with 1 treament for 6 weeks. After that the plan is to see the urologiest in 3 months - Feb. I don't know what the plan is other than a scope in the office in Feb.

Does this sound normal? I mean to go 3 months, unless something changes with Toby, to go 3 months without a treatment? I will be asking this question when we get the 5th treatment today.

She will probably check him in 3 months and probably do a treatment then or did you all have it before the 3 months?????

Kathy

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6 years 9 months ago #43604 by Nix
Sara Ann and Mike are absolutely correct. BCG does work well for CIS, however its success rate is based on the "maintenance". I also was dx'd with CIS and had 24 BCG washes and I am 5 years without a re-occurrence. I had some bad side-effects from BCG but hung in there and kept my eye on the big picture, so far so good.
Now I am scheduled for once a year cysto.
As Sara Ann said, by the end BCG is not fun, but it sure beats chemo, and looking back it is a small price to pay for having success!
Hang in there and keep your eye on the big picture.

Nancy

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

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6 years 9 months ago #43603 by mmc
He is not done after 6. Maintenance doses are very important for CIS.

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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6 years 9 months ago #43599 by sara.anne
6 treatment plan? The best recommendations are for maintenance doses every few months...three, once a week.
This has been shown to be MUCH more effective than just one series of 6.

I had CIS. Went through the entire maintenance regime, although the dose was reduced to 1/3 by the end. Now going on 4 years CANCER-FREE. I really hated the BCG by the end, but am so thankful for it.

Keep up the good work!

Sara Anne

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

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6 years 9 months ago #43597 by shihtzudaddy
Update on Toby. He will go for his 5th BCG treatment this Wednesday He's doing great in my opinion.

Wednesday he has the frequency and burning after the 2 hr holding of the BCG. He spends the day in bed reading and watching TV - aka sleeping.

Thursday he feels completely drained of energy & is pale, feels bad and stays in bed.

Friday he starts to feel some better by evening and by Saturday he's been doing very well, like new on Sunday, Monday & Tuesday. Then it starts over.

He has been having some blood in the samples before his BCG but only minute amounts and the Doctor said the urine is looking a lot better. Some "flakes" in the urine but he's good.

So the BCG must be working. I want to thank everyone who has been so helpful to us. I guess the hard part coming up will be the waiting 3 months (hopefully he will be able to make it 3 months without bleeding) and that this round of BCG will do the trick.

Anyone have thoughts on the chances a 6 treatment plan will kick it? I know CIS is aggressive and worry this will be a continuing thing. If so, he just needs to keep up the treatments and better yet, keep up the positive attitude. We laugh at things now that we did not before. Now he knows what it's like pee your pants and have wet jeans - like after us women age and our bladders leak with we laugh, cough, or sneeze.

THANK YOU ALL for the support.
Kathy & Toby :silly:

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