lainy
Forum Replies Created
-
Posts
-
Isisman, welcome to our Family. Since Teddy was mentioned by one of his girlfriends, I have to tell you that he is 77, golfs and is looking to go back to work part time. Not that we haven’t had some bumps here and there. Our attitude is, OK, this is what it is, now what do we do.
In the beginning when you first hear the DX you are so frightened because who ever heard of this strange disease? Then you set out to read up on it so you know what you are dealing with. A good idea is to use our search bar and look up Whipple as there are several in our Family who have had one. You can find Teddy’s story under “lainy”. We have never given a glance at statistics
because they are just skewed. As for how long? No one was born with an expiration date printed on their feet. You will find so much help here from wonderful, caring, lovely people from all over the World. And for now? Teddy is a 4 1/2 year survivor! Hear that CC? Put that in your pipe and smoke it! Please feel free to come here and vent, ask or advise. We all care.Dear 2reasons2fight: A warm welcome to our Family and please know you have come to the best place. My husband had a Whipple 4 1/2 years ago and at 77 he is still going pretty strong. He had no lymph node involvement so did not incur any treatments. He had a few healing problems but now sees his ONC every other month and has LABS every month.
Congratulations on your recovery as it seems you are doing well. No, this is not a death sentence as we like to say, “no one is born with an expiration date on the bottom of their feet.” We also do not listen to many statistics as we are all so different with our CC and what does not work for one works for another.
I know you are frightened as this is all so new to you but I do advise you read up on it as to be armed relieves the fright and then you begin to fight.
We are here for you to come visit, vent or advise and ask questions. Please keep us posted.Thank you to the Foundation and to Rick for all your hard work. I just read the Loose Leaf Notebook and it was excellent. How can we miss with so many working so hard. Someday soon the whole World will see it too!
Hello Dear Gavin, very interesting indeed!
When I first saw the Raman name I was thinking Raman noodles as we are always talking about food!!! Ya know, it’s like we keep saying, new discoveries all the time. Hope you and mum are doing very well and perhaps warming up. We just had STORMS all day every day for 5 days, but then we need the rain here. Our yard is all little rocks and I see some green peeking up already. You would be amazed at the way the desert blooms! Starting in March until fall its like a symphony, very beautiful.Hello CLKMPF and welcome to our family. We are so glad to hear your good news. I hope when you go back to Mayo in Feb. they find that all that “fruit” in you has become dried up or at least well on it’s way! Thank you for all that good information.
Hi Marion and once again we thank you to the NTH degree! Or like the kids say a gazillion thanks. Have a good trip home.
Hi Margaret! Ya know, sometimes even Kick’in people need to rest their legs and regroup! Knowing Wisconsin weather I am sure some bright sunny and warmer days would help. Wish I could send you some but we jsut had ur week of cold, rainy winter out here. Keep your spirits up and the legs will start Kick’in again!!
That is just fantastic about Dawn! YEAH!
Teddy’s doctors all agreed no chemo but it was mostly due to the location/type he had. He had extrahepatic (sp). They said radiation or cyber knife for recurrence and that is just what we are doing. Each circumstance is so different.I had mentioned JeffG above and I know he also had bone mets to his spine. If you would use the search engine and look up JeffG he has some valuable information. He was a menor to a lot of us and we loved him dearly. IOn fact if anyone wanted to ever look Jeff up he had so much good information.
Oh, Cinnamon & Nadine I do hope you can meet. To meet someone from the family of CC is a feeling one never forgets. It shows you are really not alone, puts a face to the posts, and just warm and fuzzy. Only good feelings can come of it.
Congratulations! You have a plan! That is really good news and now the fight begins and the fear subsides. So happy to read your letter today. That’s all we ask for at this point is at least a plan. A plan gives us hope and also keeps us very busy. Please keep us posted on the progress.
Wow, Don, congratulations on being a SURVIVOR and welcome to our Family.
We live in Phoenix and that is a wonderful thing to hear. Keep up your fabulous recovery and please keep us posted.Kristen: Pamper? Is that a word in the English language? Perhaps I should use the search button! Thank you so much for offering!
Janet: OMG! He didn’t say and I didn’t think to ask. After all its not a GIST or CC! I can’t believe it. I will have to call Monday and find out. Teddy has a cousin with a lot of heart problems and he just wrote me that I do have a long way to go before something is done.
Hello and WELCOME to our Family. We have a search link at the top of the page and if you type in bone mets I am sure something will come up. If that doesn’t work try JeffG I am almost sure he had bone mets and I know that with what ever came along he was game to try new things. Good luck and sorry you had to join our group.
Hi Marion and so sorry about the rain! We have had STORMS since Tuesday with winds up to 35MPH. They came in from California. Supposed to quiet down tomorrow.
Your report sound excellent. Goes to show that something is coming up all the time and makes us feel we are far from alone any more. I too want to thank you for all you do for all of us. For those who have not had the pleasure of meeting you, you are one phenomenal woman!
