Clean so far (sort of …)
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Patti , thanks for your kind thoughts. I’m thinking now of starting a Part Two of this thread at the end of this year, with the same title!
Jim…We will keep you in our prayers! Sending good thoughts your way…
Stay optimistic! Stay strong! We are optimistic, as well…and look forward to the great news when you are able to share it.
Dr. Kato is the one you really should see first. His secretary Delia is who you will need to contact. He will give you an honest opinion as to whether surgery is an option. Dr. Kato was my surgeon, and 2 1/2 years later I stay in touch with him. I’ve had elevated CA 19-9 marker tests since early August and I’m on a reduced time monitoring program. So far, so good. It would be hard to find a better surgeon than Dr. Kato, in my opinion. If you’d like to discuss this in more detail, I can email you my cell number.
Elsy, I completely understand how your life has been upended. I hope you can find a good protocol. Keep in mind surgery is a very good thing indeed. Good luck!
Jim who were your doctors at NY Presb? I am trying to see Dr. Kato for a second opinion regarding surgery and Dr. Siegal for her second opinion as well. My grandmother was diagnosed last month, and life just hasn’t been the same.
Thank you,
Elsy
Hi,Jim,
My first resection was done 6/09.
My second one was done on 6/11.
Even I THINK I know what to do with this disease; I actually don’t.
I learn,I ask, I think with all those info.that we find,NONE is preventive(that is how to avoid the recurrence after we aware of our disease);so as a patient like you and me, in reality, CC is a waiting game more than current medical knowledge know how can provide cure or meaningful extension of our lives back to normal. We hope ,we cross our fingers,we pray instead.
Then again, as the bible said—suffering produces perseverance,perseverance produces hope and hope—.
God bless.Percy, thanks for the good thoughts … I see we both signed up on this site the very same day. For me, it was way after my resection 4/09. The very best to you as well.
Marion, I added my daughter’s advise (she has a six year old, plus a 17 and a 19) to Dr Lee. My daughter said little kids are really easy, compared to teenagers … their issues are way bigger and harder to handle. She (Dr Lee) muttered something about being too old for this (she’s just 50) …
I think I may have sent poor Dr Lee into terminal depression!
Jim….can’t wait for part two, but gladly hang in there with you in part one for some time longer.
Terrible two’s come as a real surprise to us super parents, but it is the terrible teens that really wipe us out. Seems to come all together in adulthood though.
And, now Lainy is throwing the terrible 70th in to the mix. Not sure I am ready for that quite yet.
All my best wishes,
MarionAh, Jim, so glad to hear the Stable news! I will find out mine Monday. That made me very happy for you. By the way, the terrible two’s are not so bad, try living in adult community with the terrible 70’s!!!!
Pancreatitis has been ruled out. 10/12/11 PET/CT scan head to mid thigh showed no lesions at all. CA 19-9 from 10/12 also is now 59, so that is moving in the right direction. Bili numbers still slightly elevated but appear stable for the time being. We will probably go back to quarterly scans and monthly blood tests. Still some mystery, but may take just careful monitoring for the next six to 12 months. I was hoping to start a new thread, i.e. Part 2, but I think I’ll wait for the current smoke to clear. At least there doesn’t seem to be anything immediately ominous, which I guess is very good.
On a lighter note, my dear onc, Abby Siegel recently adopted a little child, which has been no problem at all for her. My cardiologist, Sun Hi Lee also adopted a little girl, Adela almost 2 years ago. Adela is going through the ‘terrible twos’ and has been a real challenge. I suggested to Abby that maybe Dr Lee had gotten in the wrong adoption line (i.e. returns). When I saw Dr. Lee the next day, I told what we had concluded, and she had an aha moment and a really good laugh! Life is too short to miss these opportunities!
Jim..We have had pancreatitis associated with rising CA 19-9, a not so uncommon occurrence with resections. Can’t wait to hear what the doctor has to say.
All my best wishes,
MarionWell, now I’m really puzzled. Thyroid test came back normal, as did everything else, but CA 19-9, which came down from 133 to 73. Something’s going on, just not clear what. Talk to the doctor Monday.
Thanks for that Jim. From what you say, it sounds like your doctors at Presbyterian are very thorough indeed and that is great to hear. It seems like you are in great hands there. Hope that the bruise and the soreness on your rib clears up very soon.
Best wishes,
Gavin
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