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Repeated Turbts (4) and fulguration low grade tumors after BCG (3)

3 months 5 days ago #55811 by Kayfaye
Hi Janice,
I've had 6 surgeries in 4 years for high grade bladder cancer. I've been on BCG each time and also maintenance treatments. I'm really interested in Gembiticine but it hasn't been offered to me. I'm afraid I need a new doctor. I'm in Florida and would travel for the right treatment but it's hard when you have to go for treatments each week. Do you have any wisdom for me. I do hope you are in good health. Thank you!!

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3 months 1 week ago #55786 by Jfoutz
Jes,

I received my treatments at University of Texas Southwestern in Dallas. I was given the choice of mitomyacin or gemcitabine. I chose gemcitabine because the side effects were a little less. Both had about a 30% success rate. I know I’m never going to be out of the woods with this, but it’s sure nice to have a stretch in between. Good luck to you, and keep us updated!

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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5 months 4 weeks ago #55467 by JES1968
Hi,

I have had another turbt (June 13 2018) and fulguration and am waiting on the pathology. Urologist i have is chief of Urology at a teaching hospital that is recognized for urology. I don't know if that means they are recognized cancer specifically.

After this surgery, uro said that the recurrences were not as bad as he had thought and that he only had to resect a small area. I did ask about the past repeated surgeries and was told that the first papillary tumor in 2016 was resected and fulgurated. The next 3 surgeries in 2017 were fulgurations with biopsy not resections. The last surgery was another resection. To date I have never had any kind of wash after the surgery, only saline. I have had cystoscopies preceding each surgery. Prior to the 1st surgery I had a CT scan which detected the tumor. I don't know of any cytology but I think they have done that with each cystoscopy.

I have had 2 6 week series of BCG and 5 monthly maintenance BCG beginning in 2017 and continuing it'll May 2018 in between all the surgeries. I am hoping to go on a series of gembiticine as I have read that there has been some success with people who have not responded to BCG. If I do I will be going to another urologist to have this done and so will be getting a second opinion.

Hope I'm like Janice below!

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6 months 3 days ago #55430 by cltyxx
That's great!

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6 months 3 days ago #55429 by Alan
I like good reports!

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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6 months 3 days ago #55425 by Jfoutz
Hello,

I was diagnosed in April, 2016 with high grade and have since had 3 TURBTS with BCG in between tumors returning for a total of 18. Last October after my last TURBT I started gemcitabine once a week for 6 weeks ending December 20th. I went back end of January and no regrowths (yay). I went again at the end of April and no growths and urine test came back negative. Whew, after 2 full years I finally got a negative report! I’m not sure if this is a good comparison being mine are high and your’s are low grade tumors, but so far it has worked for me! Good luck and keep me updated please.

God Bless,
Janice

Age 64

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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