lainy
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Dear Kathryn, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of CC and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the 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.
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. So glad you will be paying a visit to MDAnderson. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on progress as we truly care.Dear Victoria, WOW! What a journey you both have had so far and I sure hope a smoother road is right around the corner. Statistics, a word we try not to bank on as everyone seems to be so very different and it does sound like you are in good hands in Seattle. I wish I could be of more help but I am sure others will chime in here. Keep on doing as you are doing and I am wishing you both the very best.
Dear Bev, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mother and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
I hope you can get a consult at MD Anderson. As for trials not sure for your Mother due to her age but I am sure someone will check in here with an answer.
Please do keep us updated on your Mother’s progress as we truly care.Dear Deanna, WOW! What a story of courage and bravery. I don’t know the Medical system in Canada but can you possibly get another opinion on what is happening? You are both awesome and I am wishing you the very best of everything but I hope that perhaps another Doctor could find something to do for the pain. Thank you for sharing your story with us and I do remember Doodle bug!
Dear Googily, best of luck on Hubby’s radiation and sure hope it does some good for him. The way you 2 plug away at this is amazing, you are a ‘poster couple’!
Catherine, just want to send out the best wishes for your Mom’s upcoming scan! Crossing everything I own even my eyes!
Hey, everyone, I will be the short older lady with the white hair. And at 5′ short I will be with a man who is 6′. The ODD couple!
Dear Ali, at the top of the page is a search engine and if you type in Xeloda many posts should appear on that subject. I am thinking you would get some good responses about effects and effectiveness. Best of luck.
Dear Julia, I am so sorry to read about your dear Sister. I happened to get up during the night and saw this and sent the “List” right out to you. We are all here for you and I hope the end of her journey goes peacefully. We are here if you need us.
Dear Alikemal, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mom and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Most of the time Ascites are drained which helps to bring comfort to the patient. As for diet sometimes it helps to have a patient ‘graze’ throughout the day rather than sit at a plate FULL of food. I found that my husband really took to comfort foods like soups, pasta, omelets, puddings, rice and things like that. Please do keep us updated on Mom’s progress as we truly care.
Dear Bev, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your husband and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
I have not heard of “trapped” wind but I believe you gave the best comment at the end of your post and I will relate it to CC….and that is the fight of war and peace!
Please do keep us updated on hubby’s progress as we truly care.
Dear A Brown, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of CC and that you had to join our elite group. It sounds like you are doing good and congratulations on the Whipple as surgery is one of our favorite words.
Knowledge is the most important tool we have at this point to fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
My husband had a Whipple 10 years ago and it is a bit of a slow recovery. One of the weird parts was the loss of taste for certain foods he loved, like chocolate, yes, especially sweet things. It was all worth it as in a few months he actually was able to go back on the golf course!
Please do keep us updated on your progress as we truly care.
