December 19, 2015 at 3:04 am #90812
Thanks all.December 18, 2015 at 8:09 pm #90809debnorcalModerator
I’d like to welcome you to this site also. I’m so sorry that you, your wife and family have to experience this awful disease. I can tell from your descriptions that you are an outstanding caregiver and advocate for your wife, and that is and will continue to be so valuable to her. She can focus on resting and trying to feel well while you take care of all the medical needs and staying on top of treatment options.
I was in your shoes re: travel two summers ago. My husband insisted that we take the kids on an awesome family vacation despite his poor health. I did the same as you – researched hospitals for unexpected complications, packed all medicines, thermometer, Bili card etc. it was stressful for me to leave the security of our trusted doctors, worrying that he would become ill on the trip, and on and on. We took the kids to Hawaii for 10 days and it was truly the trip of a lifetime for all of us. My husband developed fever and chills midway through the trip, but we were able to manage it with Tylenol and rest for 24 hours. Overall, the trip was SO worth the worry.. It sounds like you are very well prepared. I hope that all goes well and you and your family have a fabulous time together. You are giving your family a precious gift. Peace to you all.
DebbieDecember 18, 2015 at 5:53 pm #90805marionsModerator
You may want to place the CaringBridge link in this thread as well:
MarionDecember 18, 2015 at 5:39 pm #90804lainyParticipant
Hi, Jim! When my Teddy and I went through this not sure if there was a Caring Bridge (10 years ago is when we started) but I had a group email every night to all friends and family and this CC site was formed a couple months in to his Diagnosis and this site is what got me through and I am still here as I am so very grateful I found them and could not have gone through those 5 years without them!
Glad you are reading and researching as knowledge is the best tool we have for fighting this rare monster. There are still a ton of Medical people who have never heard of CC.
I will add Mary to my prayers as well. You will find her best cheerleaders right here and oh our family is so very smart, loving and caring.December 18, 2015 at 5:09 pm #90803
Thank you Catherine, Darla and Julie T! As I’m sure you all have, I’ve been pretty much a book worm on this subject since Feb 1 this year. If there’s anything I can help with, please let me know.
One last thought — I’ve been using CaringBridge.org to keep family and friends updated on Mary’s status. I’ve found that not only are they informed, it REALLY helps me organize my thoughts and feelings around what we’re going through. I know those who are praying for her do appreciate the updates. I’ve also found it helps to sometimes read back through the posts to see really how far we’ve come in a short time.
Again, Merry Christmas / Happy Holidays!
JimDecember 18, 2015 at 3:13 pm #90802iowagirlMember
I want to add my welcome to the group. I am aso an intrahepatic CC patient. While I don’t have anything to add to the really great info that has already been posted, I wanted to wish you, your wife and family a very happy Christmas down in Floriday and will pray for the time to be only enjoyment and no time out for hospital trips.
Julie T.December 18, 2015 at 1:50 pm #90808darlaParticipant
Just another warm welcome. So glad you have found us. Enjoy your time in Florida. Fingers crossed that all goes well.
DarlaDecember 18, 2015 at 10:13 am #90807middlesister1Moderator
Welcome to the group. I hope you have a relaxing and uneventful trip. Seeing family and warm weather sounds life a perfect plan.
CatherineDecember 18, 2015 at 6:36 am #90806
Thank you both for your feedback and advice. Biliary Card will be included with the rest of our medical “records” that’ll go along for the trip and, lord willing, will say in my unopened briefcase the whole trip!
Marion I’ve tried to follow your link but for some reason it didn’t bring up a message. I’ll keep trying!
Regarding Molecular testing — she had it completed at Memorial Sloan Kettering earlier this year. They use their own testing protocol called IMPACT which is designed to quickly screen for the top 350-ish known gene mutations (see: https://www.mskcc.org/blog/new-tumor-sequencing-test-will-bring-personalized-treatment-options-more-patients for more info) and they found one — mTOR — which is a common mutation in Renal cancer. There was nothing specifically related to Cholangio, at least that would move her away from 1) the trial she was in at the time and 2) the standard of care.
We are in discussions with her local oncologist about repeating the testing after the first of the year, this time through Foundation Medicine, since the previous biopsy sample is almost a year old and all things change over time. We’ve been blessed to have a team of doctors who are all willing to collaborate for Mary’s benefit and the plan is to regroup the “team” and determine what is the best way to move forward.
For now. we deal with the tube and the side effects from FOLFOX while we keep this beast at bay! Oh, and we also look forward to a few days in the warmth of the Florida Sun!
Appreciate your help!
JimDecember 18, 2015 at 4:11 am #90811marionsModerator
mkc228…..I too would like to welcome you to our site. Already you have received excellent information from our Lainy.
Please note that the link she provided includes information pertaining to stents. With this link you will be able to download a “biliary” card. Please keep it safe and have it on hand at all times. http://cholangiocarcinoma.org/biliary-emergency-information-card/
Reason: while traveling or residing in a place not in close distance of the treating physician, you may encounter additional problems with blockage or shifting of the stent , which in turn can cause a life threatening condition called: ascending cholangitis
Wherever your location, this precautionary measure i.e. carrying the biliary card will alert the attending physician of the possibility that a high fever may be related to an infection due to stent blockage.
Personally I don’t know a physician in the area you are planning to visit, but I recall a posting by Elaine W. dated back to 2009:
Quote:” Gary’s surgeon is Dr. Douglas Tyler at Duke. His oncologists are Dr. Rebecca Cody in Conway, SC and Dr. Mark Moskowitz in Naples, FL.”
Hoping though for others to be so kind and supply you with additional names of physicians.
On another note, dear Jim, you had not mentioned molecular testing. Has this been discussed with your wife’s treating physicians?
MarionDecember 18, 2015 at 2:51 am #90810lainyParticipant
Hello Jim and welcome to the best place to be for CC support but wish you didn’t have to find us. You have learned quickly and I understand the tube situation and the blood infections as my husband had quite a few. The ONC would put him on an IV of Levequin immediately and it always helped quickly. As to who to call, excellent idea and I would ask your wife’s ONC. Perhaps someone on our Board of very smart people will also be able to give you a name. I am wishing for you both to have a great vacation and get a chance to warm up! Below is a site you may find helpful and please do keep us posted as we truly care.
P.S. we have a search engine at the top of the page. Try typing in ONC Naples FL and see if any older posts appear. BTW speaking of posts your post copied 5 times. Can you please go in to 4 of them and hit the delete button, thereby keeping all our answers under one post. Thank you!December 17, 2015 at 10:55 pm #11953
Good afternoon all. I’ve been watching from afar for the past 9 months but now have a few questions I hope you can help with.
My wife was diagnosed with Intrahepatic CC in early Feb after a few months of increasing indigestion and belly pain. Like most I’ve read, stage 4, inoperable, incurable but treatable. She was in a trail at the University of Michigan (Gemzar and Abraxane) moving along fairly well (shrinkage) until an increasing bilirubin pointed to the need for her drain tube. “That D*mn Tube”, as I like to call it. Since August it’s been changed about 6 times leading to 3 blood infections and hospital stays. Each time she drops another 5 – 7 pounds which she can’t afford to lose!
She is now on FOLFOX as her CA19-9 was on the rise. Even though the scans show stable she was taken off the trial due to the rising numbers and issue with the tube. Still have an option to go back to Gemzar and Cisplatin should her oncologist wish. We are also looking at / for other trials to keep this thing under control.
So now you know our story — in a nutshell: keep it under control until some of the new treatment options come around for this very rare disease.
Next week we leave Michigan for 12 days in Florida. Our kids will meet us there and are intent on a nice time looking at palm trees with Christmas lights enjoying some (hopeful) relaxation for the Christmas Holiday! We had a tube exchange today in preparation (just in case) and she’ll have a “minor dose” of FOLFOX before we go to “hold her over”. (no pump!).
Here’s my ask: Does anyone have recommendations for Interventional Radiologists or Oncologists in the Naples / Ft. Myers area who we can have ready in case we need to see someone on short notice? If no specifics, how is the best way to scope out the area so we’re prepared if one of the middle of the night fever / pain fits hit and we need to see someone quickly.
All her meds are packed, I have our binder with doctors reports, CD’s of scans, history of blood work, etc. that will go along with us just in case. I just want to feel comfortable that we will know who to call first should one of these things happen.
Thanks in advance for any advice this forum can provide!
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