lainy
Forum Replies Created
-
Posts
-
Dear Shellie, I have been on this Board from day 1 and have heard that statement before. That infection takes more lives than the CC itself and some one please correct this old timer if I am wrong. I take correction well.
The only thing I can suggest is more opinions. Something does not sound right to me. Everyone please help here as we really need some input quickly! Shellie sending you hugs and all the best. BTW when one is getting “strange” answers from any DOC I tend to listen to my gut. It always steers me right!Dear Rose and Colleen! OMG! Every time I read about the wonders of Keytruda I am so overjoyed I feel as though my heart is going to explode with happiness. Way to go Rose and at 76 years old I cannot help but imagine doing my cartwheels!!! What a team you gals are and just enjoy, enjoy!
Dar Nancy, welcome to our remarkable, smart and loving family but sorry you had to find us. We STILL are the best place to be for CC.
I cannot be of help with trial but wanted to say YES, CC is very high in Asia. Some of that we know is from a parasite called liver flukes found in a fish (can’t remember the name) but if you Google liver flukes it will give the name of the fish. My husband got CC at 73 and I just know it was that parasite from when he served in Korea. It adheres to the bile ducts for 30 – 45 years and when it leaves it leaves behind CC. It cannot be detected during those years until after it leaves and it is truly a monster far beyond the size of the parasite! The big problem is that the fish is considered a delicacy and is not properly cooked.
I am wishing and hoping for some good luck with Mom and please keep us posted on her progress as we are a great nosey bunch. Nosey is welcome here!Oh, thanks for that, Marion. I used to do that and it totally left my mind. See what happens at my age???? The cards are lovely and easy!
Megan, you can “anger” here anytime you feel the need. No apologies needed. You are much better than I am as when I am waiting for answers I want them YESTERDAY! Hang in one more day and don’t forget to take your list of questions. Is there anyone that can go with you for this appointment as 4 ears are better than 2. I think once you get some kind of treatment started the outcome seems to be that the fright turns to fight because something is being done. And you are so right, it seems to take so very long. Please let us know what happens at the big meet up!
Megan, when feeling as you do I would suggest a meeting with the ONC where you present him with a list of questions that you need answers too that are understandable. My other suggestion is to gather your Mom’s reports from Scans and LABS and get a 2nd opinion. We are big believers in 2nd opinions. You are in a city that has the best place to be for CC patients and that is MD Anderson. Best of luck.
Dear Rangani, I am so sorry to read about your Mum. I have a list of 10 Signs the End is Near and would be happy to email them to you if you send me your email address. It is really helpful and my husband followed it pretty closely. Hoping for a peaceful journey for your dear Mum.
Dear Megan, I am so very sorry about this turn in your Mom’s journey. Not sure this is Stage 4 but your ONC should be able to tell you what the Stage is. All these terms we learn, right? Wishing for the best for Mom and be strong and please keep letting us know how everything goes.
Hello and welcome to our remarkable family but sorry you had to find us. WOW!! It sounds like your Father has had an enormous turn around, excellent! And you sound like a fabulous daughter but then I am sure he already knows that. Below is a site you may find helpful and please keep us updated on his progress.
http://cholangiocarcinoma.org/newly-dx/
Dear Googily, I am doing somersaults because your news is so good! It can turn on a dime but enjoy the million bucks you just got! We get happy over the craziest stuff. Hope to hear even more good news in the near future. We are selfish, we want MORE!
Dear Daisy, Your Mum is at Peace now and whole again and one day you will meet again because To die is to take the last step in the road to Eternal Life. You were an awesome caregiver and while your heart is heavy at this time please know that down the road, when you are ready, all GOOD memories will replace the sad journey you have both been on. Please accept my humble condolences.
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 Catherine, so glad to get the Mom report. Way to go. I understand the feeling when an ONC your love leaves. Teddy had the same ONC for 5 years and I started with him when I got another rare cancer. Then came the news that he was retiring. I just sat there and cried right in front of him. Having an ONC you believe in is so very important. Good for Mom to have a staycation until January.
I feel bad for all of you to get a double dose. How is your Dad doing now?
With all you have on your plate we are so happy that you still continue to help others here. Catherine, you are a very special lady.Megan, I love your thought for today! We need to always take it one day at a time and a new thought each day is great!
My Teddy used to say, when DX with something new, “NOW we know what is wrong, let’s fix it!”.Dear Megan, so very sorry for this latest news. I have heard of spine mets and if you go to our Search engine at the top of this page and type in a word or two posts will come up about that subject. Thinking about you both and wishing you the very best. Hopefully your meeting with the ONCs will help and lead to some kind of treatment!
