Hello, I ws diagnosed 6months ago.
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Hi
just writing about weight loss.
I have lost about 15 lbs. I was just Dxed, and one of the meds the Dr put me on is Zyorexia. Which is actually used to treat mood disorders. But she gave it to me as one of the “negative” side effects of this drug, but for me a positive one, is increased appetite and weight gain. She also gave it to me to help me sleep.
amy
mustangmort….no apologies needed, ever. We are just glad that you have found us.
All my best wishes,
MarionThank you Percy, thank you Lainy. At first I did not even know what you were talking about as I never look at the numbers of postings. You and so many others on this site have my deepest admiration for being there for all of us. Each and everyone provides this site with consideration, compassion, knowledge, emotions, and tons of love. What a special place this has become.
My deepest wish is for the day to come when everyone touched by this disease has the “cured” stamp on the bottom of their feet.
Hugs to all you wonderful people,
MarionHi Gornalgal,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I am glad that you have joined us all as you will get a ton of support and help from us all. And if you have any questions then please ask away and we will do what we can to help in answering them.
I am sorry and angry also to hear you say that your husbands ONC is fairly dismissive here. This is not right at all and I would echo what Lainy and Marion have said to you about getting your husband seen as soon as possible by another onc or doctor. Where is your husband being treated? We have a link here of the major treatment cenres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And also this page created by the members here may also be of use to you –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Please can you give us some more information. This is not right that you have had to carry on alone with all of this. We you are not alone anymore, we know what you are going through right now and we are all here for you.
My best wishes to you and your husband,
Gavin
Sorry I posted my “intro” on this string of posts. I’m really a neophyte when it comes to discussion boards as well as a neophyte with CC. I’ve created a new post with my intro.
CONGRATULATIONS, Marion on 5,000 caring posts. I know I would never have got through my 6 years with Teddy, without you. And you keep on giving! I want to be just like you when I grow up! You know I love you!
Hi,Marion,
Wow, 5000 messages entry, congratulations, I hope I can see your 10,000 entry someday.
God bless.mustangmort….welcome to our site. (The one no one wants to belong to, but is glad to have found.) This cancer can be difficult to diagnose. Given the nature of this disease and comparable rarity of its occurrence I would want to make sure to gather as many professional opinions as possible. Patients are entitled to receive copies of all their records including, physician reports, scan results, blood tests, etc. Some people are worried about offending their physicians by searching out other medical experts however; I found this to be not the norm rather, I have seen physicians welcome their patients to become actively involved and knowledgeable about their disease. Please, let us know how we can help. None of us are physicians however, the members have firsthand experience with this cancer and gladly will share their thoughts with you. Just reach out. We care and we are in this together.
All my best wishes,
Mariongornagal….I would like to follow Lainy and welcome you to our site. The bowel obstruction will cause exactly what you are describing is happening to your husband, weight loss, etc. I assume that it is the tumor causing this obstruction. What puzzles me is that you are feeling dismissed. That in itself is enough reason to search out another opinion from a physician familiar with this cancer. We will gladly help you along. Please, share more with us.
All my best wishes,
MarionHello Mustangmort and welcome to our wonderful family where you will find the most courageous and caring people in the world. When Doctors are stumped we strongly advise a 2nd and even 3rd opinion. Some Cancer Centers have not treated CC much and one is best off going to larger hospitals like Mayo and MD Anderson. You can also send your test results and LABS to these various hospitals that have a lot of experience with CC and see what they say. Are they talking about a Whipple surgery and if so why are they waiting 2 months. I hate to sound negative here but something doesn’t sound right to me. I think it would be good for you to find out if they have treated many CC patients before you. If I may make one more suggestion, I would say to post your introduction under INTRODUCTIONS on the home page so you don’t get lost among this longer thread. You have come to the right place and we look forward to hearing more.
Hi all. Just spoke to my cancer surgeon today. They have been attempting to diagnose me. At first, they thought possibly pancreatic cancer but after different scans, they are leaning towards intrahepatic CC but I also had adenocarcinoma cells in the lymph nodes in that area that they biopsied. They say my case has stumped them somewhat because scans show a liver lesion but the new MRI with contrast could not distinguish a tumor. There was a place, he said, where there was a small disappearance in on branch of the bile duct inside the liver and he thinks there may be a small tumor there that is not showing well on the scans. They are thinking to start me with 2 months of chemo before surgery. I am glad that I found this sight. I will be treated at the Huntsman Cancer Hospital in Salt Lake City.
Thank-you Paula, we love you all!
Gornalgal, I forgot to mention that I found a great substitute for when my husband didn’t want to eat. Carnation Instant Breakfast. It can substitute for a meal any time of day. He used it for breakfast and I would blend the vanilla with a banana and it worked. The other thing that worked were homemade comfort foods. Teddy never did get in to the special diet thing. I would make soups and chicken and noodle dishes that were easy to digest. The more you can read here on older posts the more knowledgeable you become and that is the best way to fight this terrible CC. At the top of the page is a search button. Just type in any word and posts will appear with good information. We are here for you!
I love that the moderators of this sight are so quick to respond and offer their knowledge, expertise and experience!!! Thank you!!!
Hi Gornalgal,
I am sorry you feel so alone! I have often felt that way too…it makes it more difficult! When you are doing your research I think you will see in your research that the most pressing issue right now is to gain weight. Perhaps you can enlist the aid of the advocates at the hospital for direction and insider tips on nutrition, or the nurses, the AMA, etc… There really are people in the system who are there to guide you. Though this will appear as If I am making light, I am really not, I discovered that Oreo Cookie Blizzards and cheesecake helped me gain weight… Just keep looking for anything… Dont worry about a balanced diet. If he is able to start gaining weight he will start craving more.food. My heart aches for you both! I am 5’5 and had gotten down to just over 100 lbs.. I am much stronger now after my desserts at 117.5 lbs. It makes a huge difference in attitude, determination and strength to keep fighting!! Keep trying! Take good csre of yourself right now, you are loved and needed by your family! ; )
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