Having a hard time
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- This topic has 13 replies, 8 voices, and was last updated 12 years, 6 months ago by pamela.
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June 20, 2012 at 8:46 pm #62187pamelaSpectator
I would send him anything you have. Can’t hurt.
June 20, 2012 at 4:31 pm #62186tiff1496MemberThanks everyone.
No Pam, I didn’t I forgot to get copies while at MD Anderson. I wonder if he will look at a PET? As I didn’t have a CT.June 19, 2012 at 10:39 pm #62185pamelaSpectatorDid you ever send your scans to Dr. Sonnenday?
June 19, 2012 at 9:19 pm #62175kris00jSpectatorTiffany:
I think you are in great hands. I have never heard anything good about CTCA. My insurance won’t even discuss them.
If you want another opinion, I suggest you try Sloan Kettering or Columbia Pres. The good thing about that is if you can see drs. at both places, you make 1 trip and make a decision… they are both in NYC.
I know what you are going thru, girl. What if…. what about…. why me…. why doesn’t this work….??? WE all have the same problems and questions. I don’t think any of us are wanting to hang it up and call it quits, but we have to trust that IF we like our doctors, and IF they have such great reputations, that we are getting the best knowledge out there for a disease where there isn’t a whole lot of surety.
I think I told you Dr. Fong said every time the cc cells land in another place, they tend to mutate, which makes certain chemos work on some tumors while not affecting others.
Unfortunately, we were all dealt a bad deck. We are basically guinea pigs. And I for one tend to be a very tall standing guinea pig when they come up with a cure. I believe in my doctors (although Dr. K has no personality) and I believe they are trying to do the best by me. And I believe if they get stumped, they have colleagues that they talk to. I have to believe that. It’s what keeps me going.
You have to trust that they are trying to do all they can for you. They’ve adjusted your chemos, they’ve tried new ones when you had adverse reactions, they are starting to discuss Y90 radiation. You have lots going on. And yes, it’s hard to sit and wait for them to catch up. But please, try not to stress on it too hard, because stress isn’t good for you!!!
Call me if you need to talk. I’ll keep my phone near me…
Love ya gf!!June 19, 2012 at 4:38 pm #62184darlaSpectatorTiffany,
I have to agree with everyone else about CTCA. From all I have read and heard I think you are in good hands where you are. Hope you get some answers soon.
Love & Hugs,
DarlaJune 19, 2012 at 1:54 pm #62183pamelaSpectatorTiff,
I have a friend that goes to CTCA. She has had a horrible time with infections and just seems to be getting worse and worse. I can’t help but feel if she were at a major cancer center that she would be treated more aggressively and be in much better health. Sure, CTCA pays for your flight, your food, and all that other stuff. But if I had a choice, I would choose expert care over all the fluff. Just my opinion. Love ya girl.
-Pam
June 19, 2012 at 2:49 am #62182betzeegirlSpectatorHi Tiffany–
My husband was dx with cc on April 9th and had surgery at sloan on may st. we are seeing dr abou alfa (sloan) but also consulting with abby seigel at columbia pres. she is truly awesome — maybe you could have a phone consult with her? also, btw, i think those commercials are indicative of the fact that CCA are not able to exist on reputation, hence the need for commercials. praying for you!!!
audrey “betzeegirl”June 18, 2012 at 10:33 pm #62181jathy1125SpectatorTiffany-Just because they have a great marketing team doesn’t make them the best cancer center. I was treated by the one of the worlds top doctor in the world and I doubt most people didn’t even realize Barnes-Jewish Hospital exsisted. Barnes is #9 in top 100 hospital and when was the last time you saw an add outside the St. Louis MO. area. MD Anderson and Dr. Javle are some of the most talked about hospital and doctor here becasue of there knowledge, trials and success in our cancer. Tiffany take comfort you are in good hands. (If you ever get to the point you need a second opinion, call Dr. Chapman!!).
Lots of prayers-cathyJune 18, 2012 at 9:47 pm #62180lainySpectatorUnderstandable plus you need and deserve to know what’s next.
June 18, 2012 at 9:31 pm #62179tiff1496MemberDr. Javle just emailed me and said he is going to look into it. I just hate all this hurry up and wait stuff.
But we need to start booking our flights asap, the longer we wait the more the price goes up.June 18, 2012 at 9:02 pm #62178marionsModeratorTif: the search function brought up very little:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=404953030I hope this link works.
Hugs,
MarionJune 18, 2012 at 8:41 pm #62177tiff1496MemberThanks Lainy. I just sent Dr. Javle an email to let him know of the problem. Its just so hard knowing if I’m doing the right thing.
June 18, 2012 at 8:30 pm #62176lainySpectatorHi Tiff, from what I understand MDA has more experience with CC than CTCA. In fact I know of no one on our site who has been treated at CTCA. OR they started there and left. This is if my memory serves me right and that is sometimes debatable. Are you able to talk to your ONC at MDA?
June 18, 2012 at 7:53 pm #6988tiff1496MemberThis has been on going with me since my diagnosis.
I keep wondering if I’m getting the best treatment. Right now we go to md Anderson. But every time I see a cancer treatment center of America ad, it makes me wonder.
Md Anderson said I might get to have Y90 at my last appointment, well that has been a month ago, and it’s still not scheduled. I have emailed and called a few times.
I feel like I only have one shot and this, and I need to make sure I get it right. Any advice on how to become at peace with my treatment? -
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