Hi Rosemary, Patricia, Rosie,
Wow-my “mini tome” is already paying dividends..it is SOOOOO NICE to meet all of you, especially people with so many personal similarities and / or similar experiences. Thank you all so much for your kind replies..Hell I’m feeling better already! I am also very thrilled for you Rosemary (and indirectly for me) that you have not had any recurrences and of course I hope both you Patricia and you Rosie you are faring very well. I can’t believe you were nice enough to read my long chronicle of BC events!
I too am concerned with the lesions on my liver but Dr. Herr at MSK just kind of laughed them off and told me not to worry as they very probably were just cysts that are very common in men my age. My regular MD didn’t seem concerned either although my Florida urologist said perhaps later it should be looked at. This is the exact same reaction I got after my 2nd cat scan in NYC with similar marks on my lungs. The impression I get from all of my Doctors is that the pathologists that read the slides, x-rays, etc. include every possibility in a CYA move against lawsuits.
Mt concerns about my liver and lung “irregularities” are why I was so pleased to get your opinions Patricia on MSK and Dr. Herr—I think “curmudgeon” is a perfect description but I certainly agreed about his skills and qualifications. Your endorsement of him and MSK was very reassuring, as were your comments about the scars on your lungs, liver etc.
Thanks Patricia also for the info on protocol at MSK...I’m not sure why they don’t use
Mytomycin C there and I’m not sure about what gemcitabine is. I am pleased though that I got the Mytomycin C here at Florida first-the more C killers the better I guess /hope.
I can’t say all my worries about these “cysts” or whatever are over as from the recent past experience leading up to my BC diagnosis I was told every step of the way “not to worry” as most of the time it’s a “false positive”, “a misreading”, “a problem with the ultra sound angle” yada,yada,yada,. But as I said I was most relieved when Dr. Herr seemed so unconcerned and Patricia concurred in her high opinion of him.. I am not sure what to do next...perhaps after I complete my last BCG treatment and go back to MSK and maybe? have another Cat Scan ..then if I’m lucky I might get a minute or two to ask Dr. H more about it.
Rosemary, thanks also for the epidural info, I will have to check into it although the anti nausea pills did help last time ...perhaps if I took them sooner?
Rosie, wow 7years! How are you? Thanks for relaying your “bad nurse” catheter experiences...I have had remarkably similar experiences—to the point of twice having the urologist do it. Of the 5 times so far I have had BCG ,,the first nurse was very painful, the second was terrific, the third was awful and had to have the Dr. do it, the fourth time the Dr. did it again after the nurse couldn’t, and the 5th (last), the nurse who did it 2nd did it again with no pain. The best nurse was better at this than the Dr. but he was much better than the worst nurse! And I agree with you about my Florida Dr. feeling he is playing second fiddle and I try to be sensitive to his feelings but I’m not sure what else to do.
A few questions for you (and others)--- Do you ever visit Dr. Lamms' site and take his recommendation concerning oncovite vitamins? (4 per day). Neither Dr. H nor Dr. S in Florida mentioned them but Dr. Lamms website published some very impressive positive statistics about BCG and oncovite but as I said when I asked my Florida urologist during my 5 th BCG treatment he said he had read some studies on it and was “not opposed” to any of his patients taking them.
What was your regimen of BCG treatments after the first 6? Getting scoped and or a biopsy how long after completing the first 6? What was your BCG schedule next?
Thanks my new BC friends,
Yosarian