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Hi Vicki –
Welcome to the site, and you will find tons of helpful information here. And best of luck at MD Anderson in September!!
Regarding the pain in the rib cage you mentioned, I have been dealing with a similar pain on and off since diagnosis. I would recommend you mention this to your treating physicians because it potentially could be metastasis to the bone (worst case). Most likely it won’t be, but an MRI or PET scan would rule it out. In my case, my treating physicians ruled metastasis to the bone with an MRI, and then told me it was most likely inflammation pushing up against the rib cage. I use ice packs on my rib cage and/or take ibuprofen to help with the inflammation. However, I’m sure your doctors will have better advice than what I can provide!
Hope you find some relief.
ConnieHi Vicki,
Welcome to the site. Sorry that you had to find us all here and i’m sorry to hear what you are going through. But, I am glad that you’ve joined us all here as you’re in the best place for support and help, and you can expect lots of both from everyone here.
You are not alone anymore in this, you have all of us there with you now. I hope that when you get to Moffitt you will get some good news and please let us know how that goes and what they say etc. If we can help in any way then we will, feel free to ask anything and we’ll do our best. Please know that we are here for you and I look forward to hearing more from you.
My best wishes to you,
Gavin
Vicky…..a warm welcome from me to you as well. The many support groups established do not address this cancer hence, it can be very lonely for the patient as well as to the caregiver. The good news is that you have found us and you don’t have to feel isolated. We understand, we have been there, we are here to help and we are with you all the way.
Hugs,
MarionDear Vicki, welcome to the best place to be for CC support. You are NOT alone anymore! This is a wonderful family with members from all over the world, caring, helping and loving one another. Be assured that you are going to 2 great Hospitals and were very wise to already have an appointment for a 2nd opinion. What has your diagnosis been so far, like location, stage and treatment? We all know that when you first hear you have CC it is like being hit in the stomach with a baseball bat. BUT, when a treatment starts your fright will turn to fight. You already have a good attitude and it will carry you far. My husband used to say, “now we know what’s wrong, let’s fix it!”. I want to leave you with a smile: When you say you couldn’t even pronounce the word Cholangio it reminds me of my Teddy. He never could say it, ever. One night we went out to eat with visitors from Milwaukee to our favorite Italian restaurant. Teddy was wearing the CC bracelet. By the way he was Sicilian through and through. Well our friend Rocco, yes, Rocco asks Teddy what his bracelet said. Teddy answered, “Oh, that’s my Cancer, Angelo Carcinoma”. It was everything I could do not to laugh. I thought, leave it to my husband to make his cancer a Sicilian!
Please keep us updated on your progress and again remember you are not alone!Vickie, Welcome to cc.org, and all the wonderful, caring and helpful people you will find here. I’m so sorry to hear that you had a reason to find us, but this is a good place to be if you need some answers…..prayers…or a shoulder. Do you know what kind of cholangiocarcinoma you have? Glad to hear that you are headed to MD Anderson and the super docs there. I don’t know how many people will be on here over the Labor Day weekend, but I just wanted to say hi…..and let you know we’re here. I know you’ll be hearing from others.
Julie T
Hi – my name is Vicki and I was diagnosed with CHolangiocarcinoma ( I can’t even pronounce it yet) on July 18th 2014. This is my first time on this site and am so grateful to have found all of you so I don’t feel so alone. Terrified would be the best word to describe how I’ve felt since first hearing this news. I have had no treatment yet but am scheduled for a consultation at Moffitt in Tampa, Fl., then on to MD Anderson in Houston on Sept. 9th. I have no idea what awaits me in Houston but I am trying to be strong and brave and just face it head on! Right now I feel fine except for getting tired easily and this weird pain that keeps happening in my right rib cage. No idea what that is. I am very blessed that I have many people praying for me and I am expecting a miracle. Thanks for listening..
Thanks for that Marion.
Also for newcomers, the webinars in the video section of the website are well worth checking out.
http://cholangiocarcinoma.org/videos/
Along with other sections of the site as well!
Gavin
In addition to receiving a warm and caring welcome from the fantastic members of this discussion board you may also want to peruse the Cholangiocarcinoma Foundation home page for additional information:
http://cholangiocarcinoma.org/
scroll to: Patients and Caregivers
Tabs include: Newly diagnosed etc.We are in the process of completing and updating the information on the home page therefore; please check back periodically.
Hugs,
Marion
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