lainy
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Dear Melissa, Welcome to our remarkable family and the best place to be for CC support. Truly 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. Kind of like getting hit with a bat! 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. Dana Farber is a good place to start.
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.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on hubby’s progress as we truly care and best of luck next week!
Jessica, we have quite a few CCers even Stage IV, who were told they could not have surgery and after the right treatments they have had successful Surgeries. you will see that Surgery is our favorite word followed by Stable. This is why it is so important to get other opinions. We call the nerves before scans ‘scanxiety’. Much good luck on the new scans and I will be heading your cheer leaders squad.
Jess, what a fabulous post!!! I have been on here from the beginning and have never seen a post like this. I agree vanity does make one feel better no matter what the problem is. How can we feel good if we feel we look bad.
You just keep on sharing all you want, I had never thought of this side of it to feel better.
BTW I am originally from KCMO and I know you have some great hospitals in Topeka. There is also a great one experienced in CC in St. Louis called Barnes Jewish Hospital and they have a good reputation for liver transplants and resections. Thank you so very much for these interesting and neat ideas. I don’t have CC but I may try some of them anyway!Dear Wyatt, I am so very sorry to read about your Dad. Know that he is whole again and at peace.
I’M STILL HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I’m the first ray of light when the sun starts to shine,
And you’ll see that the face in the moon is mine.
I’ll whisper your name through the leaves on the trees,
And you’ll feel my presence in the soft summer breeze.
I’m the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I’m the smile you see on a baby’s face.
Just look for me, I’m every place!Dear Derik, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Grandmother 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. Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma as it is still very rare. 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.
My husband began his journey at 73 yrs. old and was able to have a Whipple surgery and fought the good fight for 5 years. His CC started in the same area that your Grandmother’s is. Because of all her side issues I would definitely seek out another opinion from a Hospital who has experience with CC.
May I ask where you live and perhaps we can then give some suggestions where you might get another opinion. It is a good thing that they did put in stents as that is the only way to give her relief from the jaundice. Please do keep us updated on your Grandma’s progress as we truly care.Hi joe, wishing you and your Mom the best of luck Monday. Just a little suggestion about depression should it happen. Call her Oncologist immediately and have him prescribe something mild to start with. 2 years ago before I had a colectomy I started getting depressed from so many years of being sick. My GI noticed and immediately put me on a small dose of Lexapro and for me it worked beautifully. I only had to be on it for a month but was glad I had done it. At any rate let the ONC know. Sometimes it also helps if your clergy could pay Mom a visit. It’s a rough road Joe, but hopefully some good news is around the corner.
WOW! Marion thanks for that. I have never been one to believe in supplements but that really clinches it. And it just makes sense.
Hi back at you, Pat. We enjoyed you so very much as well and to us you are a real hero! One thing you did not know was that when T and I moved to PHX Mel and his wife were our first friends. After about 5 years we just kind of drifted apart which happens in an adult community. I had not seen Mel in about 15 years but he called me when his wife passed as he needed someone to talk to. He used to call me his coach. A friendship reformed and here we are 10 months later. The best part is that since we were former couple friends I can talk about T and he can talk about J. No problem at all. And, there were times as a caregiver I wanted to share things at the tables that might be of help to others. We both also learned that you can love someone to the nth degree and think it will never happen again but the heart always has room for more. Good lesson. In fact he asked me a few weeks ago what I thought would happen when we joined J and T and I said, it will be one heck of a party! We both cracked up. The lesson is that there is still life out there and it is to be lived, no holds barred. BTW Mel thought you were great and enjoyed talking with you!l
Hello Ali, we have found that instead of full meals to have a patient “graze” all day long on small portions. They do not want to eat, they have no energy, and when they see a large plateful of food it can turn them off. Smaller plates of food more often may work better. I made a lot of comfort food for Teddy like homemade soups, eggs, pasta, mac & cheese, stewed chicken or chicken from the soup. Even buttered noodles. They also loose their taste for sweet things. We also have great nutrient drinks here like Boost and Carnation Instant Breakfast. Teddy loved the vanilla instant breakfast and I would blend in a banana. These drinks can be had at each meal or in place of a meal. Remember that small amounts more often may work better. Best of luck with this, I know it is a difficult time.
Dear Meg, a very informative post and you are right on. One has to weigh all the different sides and I think the question to chemo or not is personal. Again, I go back to Teddy’s ONC on giving him HIS opinion when Teddy asked if Teddy were his Father what would he tell his Father to do. Not many Doctors will do that. Wishing the best for your Mother.
Dear Karen, you not only introduced yourself beautifully, you have come to the best place to be for CC support. First I would like to congratulate you on your successful surgery as “Surgery” is our favorite word. I hope you are relating to your Oncologist what ever is happening to you from the chemo as there are many ways to be helped through that part of the journey.
Knowledge is a very important tool in the CC 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.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Wishing you the very best and please do keep us posted on your progress as we truly care.Dear Googily, so happy to read that hubby now has a good leg to stand on! As is usually the case things need to be taken one step at a time. No pun intended! You are both amazing and I hope for you both to get over this bump quickly. Best wishes for a quick healing.
WOW! How exciting is this? Before you know it Cholangiocarcinoma.ORG will become a household word and a cure could be around the corner. This is awesome.
