August 4, 2011 at 3:33 pm #52053
Hi jathy1125. Just read your story. Wow. Simply amazing. Very inspiring. Thank you for sharing it to me! Take care.August 3, 2011 at 2:38 am #52052
Thx jathy1125. I will read your story. Love to hear inspirational stories of people’s journey thru this terrible cancer. Gives me hope. God bless y’all!August 3, 2011 at 1:45 am #52051jathy1125Participant
Pgaska-Welcome and sorry you had to find us. I am a CC survivor!! I am 2 years cancer free. I also have connections to KY. We have a permanent spot on Kentucky Lake, so have many Kentucky and Tennesse friends. I know Vanderbuilt is one of the top hospitals, but I don’t know that they have the CC expierence. I was treated at Barnes-Jewish Hospital in St. Louis MO, by Dr. William Chapman. The man is the most amazing doctor and man you could meet.
I have such a “miracle” story to share please go to thetelegraph.com under christmas miracle and read it. I was very lucky (my first miracle) when I was diagnosed that my doctor knew what he was looking at. I was told in 5 minutes what takes most people weeks and multiple opinions that I had CC, it would come back a false negative and needed to be put in the care of Dr. Chapman. I was stage 4 inoperable and given 6-8months to live. I am alive because of God, 2 strangers and Dr. Chapman. Dr. Chapman is one of the tops for CC. There are few of us on this site that believes he walks on water!!
Please feel free to email me, there is HOPE!!!
Lots of prayers-CathyAugust 2, 2011 at 11:33 pm #52050name-badgesParticipant
Really a nice post and very informational ,your site has got sio much valuable information love your site, hope you continue this effortAugust 2, 2011 at 5:46 pm #52049
Thx Jim. and everyone else responding. This is sooooo wonderful being able to chat with others going thru the same thing. I am very interested in Dr. Kato. Just got them to fax info. for how to get her records to him. May look into Dr. Goff at Vanderbilt too. Thx to all again!August 2, 2011 at 5:34 pm #52048jim-wildeMember
pgaska, sorry you had to find us. CC is a rare cancer and there are relatively few doctors and hospitals with adequate experience to come up with a good treatment plan. The only ‘cure’ for cc is surgery. Chemo is sometimes done following surgery, if surgery is an immediate option. Sometimes it isn’t. And in some cases, chemo is done prior to surgery to try to reduce lesion size to make an inoperable cancer operable. You may have to sacrifice convenience for good care. In my case, I went to NY Presbyterian in NYC. They have exceptional cc care and experience. Note that I live in MD, nowhere near NY, but I felt it gave me the best survival chances.
Note that their are about 2000 cases of cc diagnosed per year in the US, so no hospital sees a huge number of cases. Time is not your friend here. Finding a solid treatment plan sooner rather than later is important and be prepared to get additional opinions if you’re not comfortable with what you’re hearing. And ask lots of questions and take notes. We still refer back to my wife’s notes from more than two years ago, when I had a resection done at NY Presbyterian by Dr. Tomoaki Kato, a brilliant and compassionate surgeon.
I wish you well in finding good care.August 2, 2011 at 5:25 pm #52047marionsModerator
pgaska….You would want to contact Dr. Laura Goff at Vanderbilt. Enclosed please, find the link:
Dr. Goff has extensive experience with this cancer.
All my best wishes,
MarionAugust 2, 2011 at 4:54 pm #52046lainyParticipant
YEA! PGASKA you are doing your home work and catching on fast. If you go to our Home page and click on Hospitals many of the best Cancer treatment Hospitals will appear and then you can figure out which ones you are closest to.
What is the time frame so far from the beginning of tests to now. My husband was diagnosed in A WEEK. It really is not the fault of your doctors as many do not know how to treat CC and the fact that the doctor is getting advise from someone else shows he doesn’t know. I would not like to know that a doctor from somewhere else is prescribing chemo for my Mom without knowing the rest of the story. How about you posting here and just say HELP Need Hospital close to KY. You are right not to go to TN not enough experience. This site is great as we really let a lot out by typing out our feelings. I got addicted to this and that is OK with me! It is truly over whelming but the more you learn and participate the more armed you become to fight CC. Right now you are the little engine that could. Keep chugging and we are all here right behind you, you are not alone.August 2, 2011 at 4:30 pm #52043
Thanks Lainy for your response. Not too thrilled with this dr. currently. We are in KY. He says Vanderbilt University in Nashville, TN may be some where we may want to go, when she is feeling better. It is close, but not sure I want to try there, haven’t heard anyone talk of it. Also our dr. talks to the dr. there a lot. Would like someone “not” associated to this current dr. We also have talked to The UK Markey Cancer Center. That is where she got her biopsy, no one wanted to touch it at her current dr. We like that dr. better, but they don’t have the “experince” I am looking for on CC. I know I need to get her to someone else, just wondering now or what til some chemo-til she gets better. But that is the question too, “if” she gets better after the chemo treatments. Also, the dr. is treating it w/ chemo on a few tests & still waiting for some final “stain” tests. They should be done any day now, will ck on that too. I guess the more I’ m writing this down, the more I am even answering my own questions, we need to go send records asap to others! A surgeon here says it is unoperable, location. She has 2 tumors gone to her liver. Just overwhelming. Have gotten over the “shock”, but overwhelmed. Thanks again for the response. I love this site. It is a awesome!!!August 2, 2011 at 4:10 pm #52042
Hi Marion. Thanks for replying. Going to Send her records to some CC drs. this week. She hasn’t been eating very well. I’ve been tryng to get her to do better. Just bought the book, Anticancer, so hope that helps too. Thanks for your help. I am a sponge looking for ALL I can absorb on this terrible cancer. God bless you.August 2, 2011 at 1:14 pm #52045lainyParticipant
Thanks for reposting I think you will get more replies now. This is what I answered yesterday:
Dear PGASKA, welcome to our wonderful family but sorry you had to join us.
I guess I am a little surprised that the doctor would order Chemo without a firm diagnosis. Where is your Mom being treated? The best thing you can do is read up on everything you can, especially our old posts. Knowledge is powerful and the best way to keep the CC at bay. We also have a search engine at the top of the page and all you need do is type in a word and many posts will appear regarding that word. Another important thing is attitude, an upbeat attitude will work wonders. We do have some good results here but again we need to know where you live. Best of luck and please keep us posted. Oh, one more thing. I am afraid your post may get lost on this long thread so wondering if you could repost under INTRODUCTIONS where more member will see it and be able to welcome you.
P.S. 2nd and even 3rd opinions from other doctors are so very important and to make sure the doctor who is treating her has the experience needed to treat CC.August 2, 2011 at 6:33 am #52044marionsModerator
Hello and welcome to our site. Second (or more medical opinions always are a good idea when diagnoses of CC has been confirmed and this is the time to do so. You would want to make sure to retain all medical records including, physician’s reports, CT scans, blood tests, etc. in order to forward all to a physician treating a high volume of CC patients. Please, let us know if we can help you with this. Tiredness is not unusual however, I am wondering about your Mom’s weakness. Is it related to the fact that she has not been eating well? The possibility of a resection will be dependant on the tumor location and/or size. A stent will allow for bilirubin drainage if and when it becomes necessary. Only a specialist will be able to determine any further intervention therefore, gathering your Mom’s medical records and making an appointment with another physician is the best you can do for right now.
You are doing everything right by advocating for your Mom. Please, stay in touch. We care.
All my best wishes,
MarionAugust 2, 2011 at 5:40 am #5509
Hi. I am new here. My Mom just got diagnosed a wk ago, though not “officially” yet. We are still waiting on some few more tests to confirm she has CC. Dr. said it is all leaning towards that diagnosis. We have gotten one other opinion, locally, that’s where the tests are being completed. The dr. treating her currently has started chemo, Gemzar, this past Friday. He was also going to do Cisplatin, but her kidney level was .1 off, so he decided to hold off on it. She is weak and tired. We are planning on treating it w/ chemo to get her strength up & then take her to a dr. that will treat her that’s much better qualified in CC. I am wondering should we be doing that first? Then she can get surgery( if the dr. can ) & then start chemo. Just don’t want to waste time. So new to all of this. Hearing all these surgical techniques like stents and resection. It’s my Mom & I want the best way to help her.
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