Tagged: Our story ...
April 27, 2017 at 8:09 pm #83993caroledParticipant
Glad to hear your mom is doing well! I go back May 16th for cat scan, will know something then!March 31, 2017 at 9:37 am #83979middlesister1Moderator
It sounds like the protocol my Mom went through. Her first Y90 was in Feb 2014 and it shrunk the tumor. However, we went back 8 months later (IR doc said 6 would have been ideal) and she had a second treatment in conjunction with xeloda 2 weeks before and after. Although the first Y90 shrunk it, rather than wait for it to start growing back, we were able to kill the whole tumor the second time around.
I wish you continued success,
CatherineMarch 28, 2017 at 11:34 pm #83958caroledParticipant
Hi I am Carole also. Was diagnosed with bile duct cancer in 2016. Went thru three months chemo and had y90 done at Vanderbilt in December. Had scan done in February but radiation still doing its thing so I go back in May for another scan. I also had no symptoms, it was found by accident and size of golf ball.
Procedure went well but I do feel very bloated the past month. Let me know how you make out.
Good Luck!March 27, 2017 at 10:00 am #83989
Dear Steve, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Knowledge is the most important tool for this fight. It sounds like your ONC has experience with CC which is so important but I am wondering if he has ever talked about surgery for later. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Don’t be shy about getting 2, even 3 or 4 opinions. Diff. DOCs see things differently. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on your progress as we truly care.March 27, 2017 at 3:26 am #83988BOIATGSParticipant
Hello to all,
My name is Steve from Boise Idaho. I was diagnosed with IHCC in July 2016 after my ortho doc discovered a spot that didn’t belong during a MRI of my T-spine. I had no symptoms and my liver function was normal. After a ERCP I was referred to University of Utah with Dr. Robin Kim. I had surgery in September for a planned resection of the left lobe. When Dr. Kim got inside he found out from a intra operative ultra-sound that there were two small spots outside the liver on the peritoneum. They were sampled and confirmed as adenocarcinoma, so the resection was not completed. I am being treated now at the Mountain States Tumor Institute (MSTI) by Dr. Dan Zuckerman in Boise. have been doing chemo – Gemzar/Cisplatin since the end of September and have tolerated it fairly well with no sickness or neuropathy and my hair still stands. So far my CA-19-9 has been dropping from a high of 218 to 120 and 130 for the last two tests, and my liver function tests are still in the normal range, The C-T scans have shown no growth or additional spread. In fact the last scan Dr. Dan said he didn’t see much of anything. My last chemo treatment will be May 10th and then go into monitor mode. In fact my wife and I are going on a trip to France in May.
I have confidence in Dr. Zuckerman as he is very open to discussion, doesn’t sugar coat the discussion (not brutal, just honest) and is connected with colleagues at MD Anderson, Dana Farber, Mass General, UCSF and Mayo. He did his oncology residency at Dana Farber.
I have been looking at this website since last summer. I also have a caringbridge.org site set up to keep friends and family informed of events.
Bash on regardless as my old ski partner Patrick used to say,
SteveMarch 24, 2017 at 6:10 am #83992marionsModerator
Dwhittington……..wonderful, another nurse on this board. I have enormous respect for nurses, healthcare could not exist without you.
Good luck with your appointment. Sending a tidal wave of good wishes your way.
MarionMarch 23, 2017 at 11:55 pm #83991
Dear Dawn, is Dr. Javle a good thing? It is the best thing!!! Doesn’t get any better than him. He is also on our CC Board. You couldn’t be in better hands. I am sue that April 18th cannot come soon enough. I am excited for you as well!March 23, 2017 at 11:20 pm #83990dwhittington0607Member
Thanks Marion & Lainy !
Yes, it is Dr. Javle. I hope that’s a good thing?
Marion, thanks for the heads up on hot & cold & neuropathy. Unfortunately I know too much about neuropathy. I’ve been an RN since 98 & a wound care specialist since 2005. But, I’ve mostly dealt with diabetic neuropathy.
I think sometimes being a nurse isn’t so great in these situations…March 22, 2017 at 4:49 am #83987marionsModerator
Dawn….a warm welcome from me as well. Glad to hear your last treatment is nearing. Make sure to mention the neuropathy to the treating physician. Most likely you know to take precautions around hot and cold items. The good news is that in the majority of cases the nerve endings affected have a tendency to regenerate.
Please keep us posted on the upcoming visit at MD Anderson.
Hugs to you and your loving family,
MarionMarch 22, 2017 at 12:20 am #83986
Dear Dawn, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
I am so very happy you got in at MDA Houston and would the Dr. happen to be Dr. Javle?
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on your progress as we truly care.March 21, 2017 at 11:37 pm #83985dwhittington0607Member
My name is Dawn, I am 45 and was diagnosed with IHCC in November of 2017. I am on my last cycle of chemo. I have been seeing a local oncologist for the chemo and now have an appointment at MD Anderson April 18th to see what the next step is going to be.
I have a wonderful husband who is super supportive and 3 awesome boys! This has been the hardest thing by far I’ve ever had to deal with. Chemo was really hard at first. My hair fell out and I had tremendous pain the first several weeks. Now I’m just tired and starting to develop neuropathy in my feet and hands.
I’m am somewhat excited to meet the MD I have been assigned to at MD Anderson as Cholangiocarcinoma is his specialty.
Anyway, I’m glad I ran across this site.
DawnMarch 14, 2017 at 11:37 pm #83984positivityParticipant
Thank you Mossc. More people like you should share on this forum, and for this being a rare cancer we may be surprised how many more people are being diagnosed. I heard there may be an increase. I don’t know if it’s that doctors now know what to look for or if it has been overlooked in the past. It’s still unusual and I try to understand it more by getting to the root or source. How did this begin? I asked that question for my mom looking at her last few years before diagnosis. I hope we can get people with CC to be treated as a chronic condition to be managed and not a cancer. One where we can use nutrition, stents if necessary, vitamins/supplements, and a less aggressive therapy then chemotherapy. It’s incredible the journey everyone on this site has gone through. I had my tough days and had to turn them to better days to help my mom.
Keep on fighting this condition and don’t forget to do things in life that make you happy.March 14, 2017 at 11:12 pm #83983mosscParticipant
Hi I am Carol new to the board, I was diagnosed with bile duct cancer in Oct 2015 no symptons my general Dr said my liver levels were high Had 50 % of my liver removed and my gallbladder. Was NED for 6 months and 6 small tumors returned. Did 4 rounds of cis/and germicide which did not do much. Then started a clinical trial for IDH1 for 2 months. 40 % growth Went to MD Anderson to Dr. Javrle for 2nd opinion, came back to Nashville started on 4 rounds of FU5 chemo with another kind. Was supposed to have Y90 at Vanderbilt. A problem with the procedure happened and it could not be done. tomorrow I will be having chemo beads the Luckily I have been able to work. it really helps to have the distraction. For a cancer that is suppose to be so rare, it seems like there are more and more cases I hear about. I pray every day they will find a cure. I love to read the survivor stories it gives me hope. Thanks for listening and I wish everyone the best with their journey.February 17, 2017 at 6:53 pm #83982positivityParticipant
Thank you for sharing Melanie, if more people like you step forward, the easier we can collect information. This will help everyone. What kind of CC do you have? You stated that you are not receiving treatment. Have you made changes to your diet or lifestyle?February 17, 2017 at 2:07 am #83981
Dear Melanie , Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis but know you are at the best place to be for CC. Congratulations on your clean scans. Great news and we call the wait before the scans, scanxiety!
Knowledge is the most important tool we have to fight this monster with and apparently you are doing quite well.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma. Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
We do have something in common, my Sister’s name is Melanie. Great name. May I ask what Mayo did to bring you in a short time from spreading CC to clean scans? That is quite a remarkable jump. Please do keep us updated on your progress as we truly care. Also very happy you decided to join us!
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