Can't do RC until 6/20! Is this okay?

15 years 11 months ago #15781 by Gene Beane
Replied by Gene Beane on topic Can't do RC until 6/20! Is this okay?
Good girl, maybe you'll hear from him soon. Now,, mom and dad shouldn't go to the appointments by themselves, its to chancy with your dads condition and your mom may not hear everything. It is so important for a younger set of ears be there. You can plan ahead, maybe ask a close friend to stay with the kids, or go with them in your place. With the 4 hour drive maybe staying overnite is a better idea, thats a long haul at any age in one day. We had a 30 minute drive to the Cleveland Clinic, and because of the stress issue it seemed like a very long day as well. This part of decision making is most important, the planning for all this takes priority, nothing to full around with. If she chooses surgery someone will have to set up close by residence at a hotel by the hospital, maybe your dad and yourself, after being released you have to see the Doctor one week later, staying in the nearby area for a week after she is released would be the best scenario in case of any issues she may have. If it is impossible for family to do this they have caregivers you can hire for a short period of time, I have no idea what the cost would be but I spoke with a few when at the Cleveland Clinic with my husband. Just a thought, it may not apply to your situation but worth knowing.
Well I hope I have been informative and not paniced you , its helpful to know the ins and outs and so important to plan for all this.

Ginger

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15 years 11 months ago #15768 by CattailGal
Replied by CattailGal on topic Can't do RC until 6/20! Is this okay?
Thank you for your responses! I have emailed Dr. Chang, asking for stats on how patients are responding to MCC, and also asking for his opinion - RC or the trial. My Mom, although a "young" 79, worries about the weekly trips required 4.5 each way to participate in the trial. Yesterday my father, 83, went with her. The trip was very hard on him. He needs two knee replacements that he refuses to have, and hobbles along without a cane or walker (in intense pain). I have gone with my mother to other Urology/Oncology appointments, but my father has not. She said while in the office yesterday, my father became very nervous and started itching all over. Although my Mother first had "superficial" cancer 4.5 years ago, my father has not really heard the facts, and is quite upset now. So my mother is worried about my father, should she start the trial. I could probably go with her part of the time, but I have two children (6 and 9) and my husband is out of town most of the time on business...

KC

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15 years 11 months ago #15751 by Patricia
Replied by Patricia on topic Can't do RC until 6/20! Is this okay?
KC...with this Phase 111 trial which is ongoing and some of the top people are testing it like Dr.Herr at Memorial Sloan....the protocal for the Urocidin is over a 3 year period of time and for people like your mother who are not responding to BCG...I suppose they would know in short order if it was going to work ...I would ask what the present figures are showing...what have been the results of the past trials that started in 2006....it may be a good bet for preservation...try to get the figures and make a decision...but this does look promising on paper.
www.biospace.com/news_story.aspx?NewsEntityId=18070620
Pat

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15 years 11 months ago #15742 by Gene Beane
Replied by Gene Beane on topic Can't do RC until 6/20! Is this okay?
The 3 month rule is for muscle invasive patients, thats what the Cleveland Clinic advised us. I would press for an answer as to what he would advise, treatment or surgery, he must have an opinion one way or the other..how hard would the treatment be on her, I know you said she is very young for 79, of course you want to make the right decision. You have no guarantee the treatment will work and if thats the case it may be a waste of time,,Maybe you could get another opinion, by sending tests etc. to the Cleveland Clinic Urology dept. Dr Campbell was our surgeon, Stephanie is his assistant,,,their number is 216-445-0521 Stephany Ziegman, it might be worth the call....I am just surprised you weren't given a judgement as to what is best to do in her case.. Dr. Chang has a good reputation, maybe you should speak with him and get a better understanding of why he hasn't an idea of what is best for her at this stage.....Ginger

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15 years 11 months ago #15741 by CattailGal
Replied by CattailGal on topic Can't do RC until 6/20! Is this okay?
The doc suggested the clinical trial as an option instead of surgery (at the moment). Mom has CIS (started 4 years ago as lower grade superficial). She was diagnosed last summer with the CIS, BCG knocked it out (unless it was a false negative afterwards), then it came back when she was rechecked 12-15 weeks ago. She's had two rounds of 6-week BCG since then, but the CIS is still present. Oddly, the BCG doesn't have any negative effect on her at all (she's 79). So if she has the surgery in June (she's scheduled for Friday, 6/13, a clear day for the doc since he said no one will schedule with him on Friday the 13th), it will be MONTHS after her recurrence of the BCG 12-15 weeks ago.

Today the Vanderbilt doc told my Mom with CIS there's a 50% chance it will not progress, but 50% chance it will become invasive. He didn't give his opinion of RC vs. clincial trial, just presented both. He said many of his patients are elderly, and do quite well with RC. He does over 100 RCs yearly.

Mom is leaning towards the surgery. She feels if the last two BCGs didn't work, ANY medicine won't work. I think perhaps the clinical trial warrants some investigating further. She'd have 6 weekly infusions of the MCC (4.5 hour drive each way).

KC

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15 years 11 months ago #15737 by Gene Beane
Replied by Gene Beane on topic Can't do RC until 6/20! Is this okay?
Just to make you feel a little better my husband was diagnosed July 3rd, stage 3 and T-2 , his surgery was Sept. 14th,,they say 3 months from diagnosis is average time for removal. Also he had no chemo or radiation, I hear pro's and con's to the clinical trial route, what is the other option to that. His was muscle invasive of course but an all clear after surgery. Pat can maybe give you some clinical trial advice....she is up on it... if she is not muscle invasive why do they want her in a trial before surgery, she is not have cancer elsewhere, right?? I would have the surgery first but thats just my take on it, what kind of risk is involved if she waits,,,til after the trial,???, also you may want to get on the cancellation list, anything to move it up, the waiting is so hard to take but I would defineately keep on the surgeon to move it up.....the squeaky wheel gets the oil.. Ginger

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