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Here we go - CIS & BCG

3 months 3 weeks ago - 3 months 3 weeks ago #57616 by Regor
Status -
TURBT in January 2019 to remove CIS
BCG Induction phase February thru April 5
Cystoscopy - yesterday 21 May.

ALL CLEAR !! Scare tissue healing nice, and no new Tumor growth.

Typically I would go on to the Maintenance portion of BCG, but the BCG shortage has hit Southern California and Kaiser Permanente. I will forego Maintenance for the moment, while Kaiser comes up with a bigger plan to treat while the world continues to experience the BCG Shortage.

The treatment that is probably 2-3 months away from reality is: Gemcitabine Chemo Therapy, injected just like BCG, directly into the Bladder. Oh, and the Maintenance treatment using Gemcitabine would be once a month, not 3 treatments 3 weeks in a row every 3 months.

Meanwhile, since I have a few free months, the Urologist and I decided we would do Shockwave to remove my Kidney Stone.

CIS DX Jan 2019

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5 months 1 week ago #57293 by Vh9246
Thank you, I am putting a call into his dr tomorrow. Mybetriq is very expensive if it were working that's a different story. His sphincter is good dr told him to do Kegle exercises. Thank you for your time.

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5 months 1 week ago #57288 by sara.anne
Have you discussed this with his doctor? Myrbetriq is usually prescribed for an overactive bladder, which can be a side effect of BCG ----i.e. urinary urgency. If he finished BCG in November, he should be pretty well healed from any irritation it caused and may not need Myrbetriq any more, if that is what the doctor prescribed it for. "Tiredness" is possible with this drug, but is not listed as one of the primary side effects.

Your husband needs to discuss this with his doctor to see if it is time to discontinue it. He shouldn't do that without talking to his doctor.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 months 1 week ago #57285 by Vh9246
My husband was done with the BCG treatments in November and has had two clear scopes since then. His dr did one at6 weeks then one three months after that. These will continue for two yrs then twice a yr after that.
He was put on Mebtriq I am in belief that medication is makeing him tired. He was tired during the BCG but now that he's on Mybetriq he just sits down on the sofa and dozes off.
Any one have any input about Mybetriq?

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5 months 1 week ago #57274 by Alan
Regor,

Thanks for the updates. Everyone learns from our experiences. While no fun BCG is doable. And, anytime it felt bad I kept telling myself if this is the worst it is worth it! plus this is much better than chemo.

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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5 months 1 week ago #57266 by Regor
Wow, time has flown by. I completed my 6th week of BCG, the Induction phase is over !!
I am now in the hurry up and wait phase for my next scope, to take place in May.

My experience with BCG -
A headache for 24 hours after expelling BCG (each week)
Fatigue, each week, and growing by the week. The day of BCG and the next day, I had naps up to 4 hours long.
Fever, hit after 5th treatment, went over 102, and lasted from 24 hours after BCG, and didn't break for 3 days.
Just had treatment #6 yesterday, and fever went up to 100 last night, and over 101 now.
Resting and keeping an eye on it. Looking forward to bladder healing for a while.

CIS DX Jan 2019

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