Two TURBTS since Jan and still no BCG treatment..

11 years 5 months ago #43337 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Thank you Flamenco. Knowing you had the other chemo drug- so long ago, and with good results is very encouraging..I will be thinking of you on the 29th as well..Keep us posted here please! :)

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11 years 5 months ago #43332 by Flamenco.
hi Annabelle,
Pleased you are getting a second opinion, and hope your new urologist is switched on -don8t know anyone who has had treatment with tiotepa, but maybe someone else who has had it will post - i think it is a fairly new drug for treatment in bladder cancer- i had treatment with mytomycin in 2006, also direct into the bladder- quite a doable treatment, side effects very temporaty, and definitely nothing like intravenous chemo.
I also have an appointment on 29 Oct with a new urologist, so will think of you then, and hope we both get good results,
all the best,
Diane

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11 years 5 months ago #43304 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Hello everyone. I hope you are all well since last post 2 months ago. I had gallbladder surgery in August, then a scope on Aug 27, which showed no recurrence of the Non Invasive Papillary Carcinoma. The same urologist who performed both my TURBT's did the last scope and again, did not order any treatment.
I finally got my second opinion today and the new Dr Urologist has scheduled a scope on Oct 29 with possible TURBT if tumors are present. He already plans to administer Tiotepa (since no I've had no treatment since first surgery last Jan)
I had never heard of this drug and am home from the appointment reading about it, with the understanding that it is a chemotherapy drug instilled into the bladder. Anyone with any experience with this chemo? I understand it is also infused in Breast cancer and Lymphoma patients.
I must tell you all that June, July and August were the toughest. I spent September getting my life back a bit and so far, it's been the best all year after 3 surgeries and countless other procedures. Thanks again for your support here!

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11 years 8 months ago #42485 by upnorth
I am so pleased to hear that you are trying out another doctor.

You are far to kind of a person to have to go through all this.

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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11 years 8 months ago #42484 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Catherine and Mark,
Thank you again for your replies and support. I was overwhelmed after the visit with my Dr, but am feeling better.
I located two oncology urologist in New Orleans who have short appointment wait times. I am going to make an appt with the more experienced of the two- after I get results from the upcoming colonoscopy. Mark, it is encouraging to know that you have been able to keep things under control without BCG, and that you have so much confidence in your doctor. With the health care situation as it is, even the most caring physicians are certainly overwhelmed themselves with all the continuously changing circumstances and red tape when providing care.
Thank you again for your insights. I am so very thankful to be here with you.
:)

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11 years 8 months ago #42479 by CatherineH
Replied by CatherineH on topic Two TURBTS since Jan and still no BCG treatment..
Hello Annabelle... so sorry your appointment left you with questions unanswered. It sounds like you are dealing with a smaller practice and I implore you to look to a larger facility for that second opinion as quickly as you can. You have been put off long enough by this uro and need someone who is a specialist in bladder cancer to evaluate your situation.

Yes, things can always be worse... but we don't want you to wait until they are! Hope you are feeling well otherwise.

Catherine

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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