October 9, 2013 at 5:44 am #76352kris00jParticipant
Let me add my hello, too. It’s a bad way to meet people, but you won’t find a better group! There is so much support and help here. And I agree, it’s a “sucky club” but I have met some great people! And strong!
I am amazed at how quickly you got all this done! You did in one week what took 1-1/2 months for me in Feb-March 2011. No wonder your head is spinning.
Unfortunately, we do call this a roller coaster ride. It has many ups and downs. I tried to handle it, but eventually looked to medicine to help with nerves and depression. I have since taken myself off those drugs, but I don’t know what I would have done without my Xanax!
It sounds like you have a great team working with you, and that is a very important thing. I wish you well with the next few days especially, and will send prayers for “operable”.October 9, 2013 at 4:29 am #76351pcl1029Member
For more personalized treatment options in the future, please ask if they ( the medical oncology) can use your tumor tissue to get a ‘” next-generation gene sequence” done for you for future specific treatment plans .
This was recommended to me by 2 medical oncologists, and it seems to be the trend for the top institutions which are in the forefront of treating cancers.
I am a patient of ICCA for 54 months since Dx.
God bless,October 9, 2013 at 4:25 am #76350marionsModerator
Lisa….I too would like to welcome you to the club mentioned. None of us want to be here, but given the circumstances, we are happy to have found each other.
Lisa, Baylor sees a substantial amount of CC patients hence, I expect you to receive an accurate diagnoses. The physicians work closely with MD Anderson therefore; this represents an additional plus for you.
Make sure to retain copies of everything and anything pertaining to your diagnoses including; physicians reports, blood tests, Scan results, etc. Good luck and please keep us posted. We are in this together.
MarionOctober 9, 2013 at 4:04 am #76349lainyParticipant
Lisa just want to add one thing. You will want to know if your ONC and the Hospital you end up for treatment at are well up on CC and have treated more than a few CC patients. Very important that they have the experience! Most Cancer Centers like Cancer Centers of America or Sammons may not have treated a lot of CC. Night!October 9, 2013 at 3:37 am #76348
Thank you all. I am a lawyer by training (and nearly 30 years of doing that), so gathering information is embedded in me (and my husband is also a lawyer, so we might be slightly obsessive over getting info, although not a bad thing in this case).
I live, literally, within 5 minutes of Baylor Hospital and the new Sammons Cancer Center. I was talking to a friend who is an RN in a smaller city in Washington State and she was stunned at how fast all this has happened, so I realize I’m in a good place and my primary care physician (internist), GYN, gastrointerologist (for routine colon screens) all said my medical oncologist and this new surgical oncologist are both ‘da bomb.’
It’s a lot to absorb, though.
Yes, the jaundice was my symptom (well, the itching, but I didn’t realize that). Thank God my college roommate noticed and said my eyes looked yellow. I laugh and say that I look like my toddler grandson was let loose with the magic markers (or at least the yellow one) and scribbled on my eyeballs.
Well, I’m gonna try to get some sleep. I had a really hard time sleeping last week, but I have not had any qualms about accepting my internist’s offer to give me a Rx for something to help me sleep.
Must be at Baylor early for this body scan.
During the past two years, I have often referred to the lost sibling club as the sucky club no one wants to be a member of, but I guess that’s true here too. Still, I believe there is strength in numbers and knowledge and, since this is so rare, if we aren’t on the forefront of making noise about it, who will be?
LisaOctober 9, 2013 at 3:01 am #76347lainyParticipant
Dear Lisa, welcome to the best little club in the world that no one wishes to join. When my husband was DX he was totally Jaundice and the ONC said, “You are really, really yellow”. Not knowing the gravity about what was to come I said, “Teddy , you know I don’t like you in yellow”. We found a wonderful cream over the counter at CVS & Walgreens called Sarna. It is a miracle cream and took the itch right away. Cool showers helped as did ice bags too. With that said, of course you are scared, who ever heard of CC, can’t even pronounce it let alone spell it! I hope they come up with a DX and treatment plan quickly so you can feel more normal again and get rid of the itch! What hospital will you be going to for treatment? One of the very best is MD Anderson in Houston. I promise you that once a DX is official and a treatment plan is put forward your fright will turn to fight. You have come to the right place for support as we are one close knit family! Questions? Ask away. Need to vent? We have broad shoulders. Looking forward to hear more from you. P.S. Try to read up on CC as knowledge is our best weapon to fight this crazy Cancer. Also use our search engine at the top by typing in any word and lots of posts will appear on that subject. There, I think I am done for now. I tend to get long winded on the key board! P.P.S.S. Sorry, wanted to say my Sis in Law lives in Ft. Worth.October 9, 2013 at 2:35 am #76346kvollandParticipant
Well, Lisa, welcome to the family. Keep us posted on all the particulars with your CC. The itching can be expected due to the elevated bilirubin levels. Are you jaundiced too? Quite often those go hand in hand. My husband was lucky and while he looked like someone colored him with a yellow highlighter, he never got the itching even when his bilirubin levels were off the hook before his drain was placed.
We are in the Seattle area so we are getting treatment there with a wonderful surgeon and oncologist. Which center are you at? There are some really good ones out there and if we weren’t so happy here we would be doing some traveling.
KrisVOctober 9, 2013 at 2:29 am #76345wallsm1Participant
Welcome to the club but sorry you had to find us. Please keep us posted on your treatment.
SusieOctober 9, 2013 at 1:54 am #76344fantastic4Member
I also had the itchies that drove me nuts! Cholestyramine (Questran) helped a little. Works by binding to the bilirubin and preventing it from depositing in your skin. Benadryl also works for some.
BjOctober 9, 2013 at 1:40 am #76343
In the meantime, it is just me, or is the itching driving anyone else nuts???????October 9, 2013 at 1:36 am #76342fantastic4Member
Sorry you joined this site as well:). Best of luck with your diagnosis and am praying it is localized and resectable for you!
BJOctober 9, 2013 at 1:17 am #9007
While I’ve participated in lots of forums over the years – photography and health/fitness come to mind, this is one I never thought I’d be participating in. Frankly, before this past week, I’d never heard of cholangiocarcinoma.
So, I just turned 56 last month. I would have said I was in the best shape of my life. I just got back from Nashville, TN to do a 100k charity bike ride. I was feeling pretty great. I went to a wedding the following Friday and saw my beloved college roommate, who mentioned my eyes looked yellow. I came back, called my internist last Monday, said I thought I should get in that day and I did. Since then, life has been a blur of alphabet numbers of tests and meeting new doctors.
I’ve had a blood work, a CT scan with contrast, an MRI/MRCP, a colonoscopy (had a routine screening one in February), an edoscopy, an endoscopic ultrasound, a meeting with a medical oncologist and two more tests scheduled tomorrow and a meeting with a surgical oncologist.
It’s cholangiocarcinoma, but we’re still trying to figure out staging, size, resectability, treatment options, etc., etc., etc.
I don’t mind saying I am scared. I’m used to being very active, I have small grandchildren I want to see grow up. I am lucky that other than, pardon my language, F&#(@&@^(-in cancer I feel fine. I don’t have pain, but I’m very anxious.
I’m trying to learn what I can. I want to make the most informed decisions I can. I want to read the stories of hope. I want to have a life … a good life … I’m sure every single one here can say the same.
I am very fortunate to live, literally, down the street from a very good hospital, but if there is a better place, I want to know that.
I’m trying to figure out how to break this to my elderly parents and my son. My parents lost my little brother (their youngest son) two years ago, at 48, to something else completely unexpected. I am hoping to know more by end of the week to tell them.
Anyway, just wanted to say hi. I was really glad to see a support forum, because this sure feels pretty alone right now.
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