Introduction and my story
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Nathalie…you are making informed decisions. Congratulations. In regards to sharing your thoughts and as you are mentioning “findings,” absolutely, this is what makes this board so successful and therefore, it has been such a unique form of resource for all CC sufferers.
Good luck with the upcoming May visit.
Best of all wishes coming your way,
MarionSo sorry for you loss Peanut. It is a difficult disease. Hard to find and even harder to try to cure. I ( we ) appreciate your efforts in fighting for this cause. You are in my prayers.
Marion – We do have 2 gastro docs here, but I read that if your pancreas head is involved, a stent can cause irreversible damage to the ducts. Where once it might have been operable, it no longer is due to the damage.
It was for that reason I decided to just go for the Mayo clinic and bypass the docs here. This being such a rare and fragile disease to manage, they said you needed to have doctors that were specifically knowledgeable in this area before you begin anything.
It’s sad, but true, that there are too many doctors that don’t have a clue what they are dealing with when they begin to investigate this disease. So many things can go wrong and so many wrong things can be done. Definitely an awareness that needs to brought to the attention of everyone dealing with CC. Maybe there is a place I can post my findings here on our website to help in the education of CC treatments? I would love to do anything I could to help others, as I am being helped so much by all of you!
Thank you so much for your feedback, prayers and support. I am also here for you! Please call on me as needed, anything I can do would make me feel wonderful!
Hugs~Nathalie
my mom had jandiance that when she went to the emgengency room last november the day before thanksgiving and they found the mss it was not till jan 2009 when they did a liver biopsy that she was told she had bile duct cancer or cc she started chemo in march she had fatigue and she had night sweats but she had no pain my mom recently died on july 12 of this year and i want you to keep fighting and i know that you can beat this!
Hello Nathalie, I just wanted to drop you a note and say welcome. My Dad had so many of your symptoms, and the stent (he had a biliary cath inserted) did help with both his itching and the jaundice. They inserted that the same day, in his case, that he received the diagnosis. We too invested in the Sarna and it helped some. The Mayo Clinic has a very strong reputation, that’s good news that you’re getting in- nothing wrong with second, or third opinions.
Keep us posted Nathalie, you’re in our thoughts.
-Tess
Natalie….I am wondering about having an ERCP and possible a stent for the drainige of the bile which is causing your itching? Is there a Gastrointerologist near you who could perform this? You might be able to have this done before going to the Mayo Clinic.
MarionYou are all so very sweet and helpful! I am humbled by your welcomes, kindness and eagerness to help me. I appreciate all you can share about your own experiences with me. And we can never have too many prayers!
Thank you again! For your time, efforts and helping me feel like I am not alone.
Hugs and Prayers,
Nathaliehi, i hope your bio. proves differant…im sitting here trying to think of what advice i can give you and my brain is just not working….16 months of doctors and treatments and advice and i can think of nothing…its like im numb….all i can do is send you prayers and well wishes…GOOD LUCK……ron
Nathalie, If I was your mother, daughter, sister, husband. The first thing I would do is have you change doctors!! There are things you can do for the itch. They may not help but you can try. Teddy used to have me put ice bags on his arms when they got too bad. There is also a cream at Walgreens called Sarna. You cannot use it for more than a couple of weeks as its very strong but worth the try. I don’t have all the terminology and I am sure everyone chuckles at my descriptions but I have learned more than you can imagine. Who would have thought. You can find Teddy’s story under the Lainy posts.
Not sure but if it is near the Pancreas that is where Teddy’s was but contained in the bile duct valve. Its true that they cannot possibly know what is in there for sure until they get there. Teddy had a Whipple 4 years ago and he is now 77. He is our Miracle Man. Mayo Rochester is one of the very best. You will soon be in much better hands than you have been in with your doctor. The way she has talked to you and treated you makes me so very angry and also upset for you. You will learn to become a very strong advocate. If something doesn’t feel right to you, it usually isn’t. Trust your gut in this and above all have lots of HOPE and Attitude. Ditto what Kris said. She knows all too well.Welcome Nathalie.
My first sympton was juandice, luckily I dont have it now becaue it is miserable. I hope they are giving you enough anti itch stuff so you can sleep.
This is a scary disease and rare. My doctors are learning along with me too. I am forever printing out research articles from pubmed.com and questioning why cant we do this? What does this mean…etc. She says she likes it. It is even in my charts that I am VERY educated about my cancer. I think that is the only way to go. I think that my doctor and I work in partnership. We didnt always have a smooth relationship,in fact I said I would never be her patient again. But I live in the middle of nowhere Sweden and the nearest oncology unit was 3 hours away and I wasnt impressed with them so I went back to our local oncologist. My pychologist actually came with me to my first appointment back to assist and manage the meeting. Now we are great. She respects that I am knowledgable and that I want and will have a say about my treatment. It is my body,my life and she has come to realise that I mean business about kicking some cancer butt. What I am trying to say (in a very long winded way) is that you need to be your biggest advocate. I am glad you moved on to a new doctor, it is really hard when you dont trust the person who has your life in their hands.
Best of luck.
KrisHi Lainy and thank you.
Yes, I have jaundice. It came on quite subtly though. At least I think it did. I don’t spend a lot of time in the sun, but we ride motorcycles and I thought that was the reason for my skin color.
My daughter (15) made a comment a couple of weeks ago and I hadn’t been in the sun for about 3 weeks, so I definitely had no tan! This is something I had to appreciate and made me laugh! She says,
” Mom, you are getting so tan! How did you get your feet to tan too? “
You just have to appreciate the innocence of children… But, that is what made me look a little closer at myself. I had thought my eyes looked a little yellow, but I wrote it off to blood shot, tired, getting older eyes….The pruritis is what really drives me crazy. I itch all the time! All over! Mornings seem to be my best time for some reason. But, by days end, it’s intense all over and constant again… My PCP said there isn’t anything they can give you for it, you just have to ride it out.
Nathalie
Thank you for your kind words and sharing a bit with me. I was scared at first, but then I started reading. I know that CC is a touch disease, dreaded and very hard to manage or cure. But, I have hope. I was very fortunate to have a husband that gave me courage to be persistence. I agree it does have to do with location and education on both parties. If my PCP hadn’t come off as such an influential and well educated know it all, I wouldn’t be so upset.
My husband had went into the office twice with me to have a “talk” with her because we couldn’t reach her through her nurses or phone system and I ended up in the ER twice in a day. She agreed with my husband as to it being difficult to get her, and pretended to listen as I explained my symptoms. I mentioned I had SEVERE, BREATH TAKING pain in my upper abdominal area, she felt it, I said it radiated to the middle of my back and she said it was stress because I started crying when she pushed on the area and caused more pain! Then she told my husband as he explained to her that it was waking me up, I was depressed, see she is crying now… Then said Fibro, prescribed me Cymbalta and walked out of the office…
Anyhow, it has been a frustrating road and I am so thankful for you! The tumor is 3.7 x 1.7 cm in the cystic bile duct with dilation of both ducts and pancreas. The impression on the pancreas worries me, but then again anything that we don’t know causes some uneasiness.
I will update my report on the 10th, when I go in to the Mayo. I am still looking around here and reading all the information. I was wondering if there is a place to post pictures of scan images to share and compare.
You are all in my prayers and I hope we will develop a long lasting relationship, fighting for a cure!
Hugs
NathalieHi Nathalie and welcome to the best little club in the world that no one wishes to join. What an awful journey you have been on. You have done the very best thing by getting into Mayo. When is your appointment? I too hope your diagnosis is not CC. I am wondering if you have ever jaundiced through this. Usually with Bile Duct Cancer the itching is caused from the bile not flowing which in turn causes the jaundice. Also chalky looking stools. Best of luck to you and your Mayo visit. Please keep us posted.
Hello Nathalie and welcome. As Jolene has mentioned: this is the place to find support, to rant and rave and simply, let it all out. Some time back (I believe it was 3 years ago) someone had joined the board and the diagnoses indeed was not “Cholangiocarcinoma.” I am hoping the same will come true for you.
Bile Duct Cancer/Cholangiocarcinoma is not easily diagnosed due to the fact that it does not occur often (in comparison to other cancers) and many physicians may not ever experience a patient with this disease. Our GP whom I adore and of whom I think highly never had seen a case of CC. In fact, he was learning along with us (his words.) You did a great job by staying persistent and finally, receiving the care you deserve. I am hoping that things become much smoother from now on.
I am so glad that you have found us,
Best wishes coming your way,
MarionHi, Nathalie~welcome. I’m so sorry that you have had such frustration on top of the CC diagnosis.
My dad was diagnosed with CC in January of ’08. I remember the fight it took to get that diagnosis. We weren’t listened to at first. It took several emergency room visits and two very public outcries of disapproval of competency before dad was able to get an MRI, biopsy etc. Then ‘they’ were more cooperative…I even got a pat on the back from the hospital social worker for my advocacy for dad. (Why does it take a fight in the first place—I think now that it’s sadly a question of location, and education of both patients and doctors).
Again, welcome. May you find some answers here. You will surely find support.
Jolene
Hello everyone and thank you so much for being here! It is so difficult finding others that are going through this disease and understand the complications of it.
I am 40 yr old female and have just recently been dx with Cholangiocarcinoma, but that can change if the biopsy proves different. So, I am still in the uncertainty stages of this.
I became ill in Aug. 2008 with extreme fatigue, weak, unexplained fevers, urine changes, itching all over, night sweats, abdominal pain that would radiate to the middle of my back, chest pains, bowel changes and bone pain. They began to investigate the bone issues, found I had Osteopenia. They never investigated it any further, as to what was causing it. Never questioned the fact I had a very hard time eating or why I was always sick to my stomach. I had a lot of little clues on blood work and 2 other Dr’s had mentioned they believed I had cancer and needed to be followed by a Gastro. Well, my PCP never sent me to one, since these other 2 Dr’s never involved her in their discussions.
I have gone down hill since then. The abdominal pain became excruciating! I couldn’t eat anything without it making me sick. The nausea, vomiting, fevers, cramping and night sweats were getting worse and worse. I started to bloat up like a balloon, no explanation as to why. The the itching started and wouldn’t quit this time. The first time I experienced it, it lasted about 1 week and then diminished. I would itch very little, and I learned to deal with it. I am trying to keep this short.
For the past 6 months now I have been complaining of these things and I have been told it was IBS, depression or nerves. That I was stressed out and wasn’t getting enough sleep. I explained it was the pain and night sweats that were waking me up and my PCP just looked right through me!
When I went in 2 weeks ago, I saw the PA, she said it wasn’t histamine, so she wanted to run some tests as to why I was itching and gathered my other history of pain, nausea, bowels and urine. She ordered a CT scan and to my surprise my PCP called immediately the next morning wanting me to see a Gastro for an ERCP. She made arraingments for that afternoon at 2pm and I had to be there.
I was blown away with all of this all of a sudden “you care” attitude. Started to ask questions and learned about the images on my CT scan. I decided to go to Mayo Clinic in Rochester, not to let the dr’s around here to touch me because of all the complications that present with this disease and the damage that can be done if procedures aren’t done by professionals that deal with this disease on a regular basis.
I have read and read and read all that I can find on the internet. I have been desperately seeking others who can understand my fears, frustrations and share their experiences with me too.
Thank you again for being here!
Nathalie
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