lainy
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Dear Shonny, Welcome to our wonderful family but so sorry to hear about your sister. Your doctor sounds especially good as well. We have a great member in Australia, Janet and I would imagine she will pop in soon and can maybe have some ideas for you right in Australia. We also do not listen to statistics as we have had members surviving years after their diagnosis. Good luck and please keep us posted about your sister.
P.S. One of our heroes, JeffG had mets to the spine and if you go to his posts using our SEARCH site at the top of the page you will get some ideas on what he tried.As we are all praying for you as well. You are so right, why would they go through all this “bother” if they didn’t have hope. I think they just need to tell you everything so you could make the valid decision that you did. You are one of our most loved heroines!
OMG. I can’t help myself Kristin, suggestion, God help me…..Bile green cookies with clear plastic straws (those darn tubes) hanging out and the straws can be “cookie holders”. I just woke up…forgive me.
Bon Journo, Paul and welcome to our wonderful Family! Sorry you had to find us but glad you did. My husband Salvatore (Teddy) did not have chemo as his tumor was in the bile duct valve so I cannot help you there but if you go to the Search space at the top of our page and type in Xeloda I know tons of posts will come up about that kind of Chemo. It sounds like you have done everything perfectly right for a situation that is perfectly wrong! Blood infections seem to go with the territory as well. You are seeing top doctors in this field, but keep searching until you are totally satisfied. Feel free to come here to ask, vent or advise. Amd please keep us posted. CIAO
Very interesting, Lisa. Again I wonder if it also pertains to Korea as Teddy was there. Hope you are doing good.
OMG Marion, yes. We were 40 minutes outside of Phoenix and Teddy said I am wet. I didn’t feel the wet. 5 minutes later he said I am getting wetter. Boy, did I feel it then. I told the flight attendant I had a problem but not to worry or announce it as he was not in pain just embarrassed. The whole seat was soaked by now. So she goes and asks if there is a nurse over the PA system.
There were 2 nurses and also a doctor right across from us. He pulled the 2 tubes the rest of the way out and the nurses wrapped T in airline blankets after they stripped him. Good thing we were way in the back! Now they call Robin (daughter) to pick up our luggage and meet us at the hospital. The idiot drivers brought him in the front where it takes hours instead of the back where they take you right from the ambulance. So, somehow Robin reached the hospital first and she sees T coming in the door on the gurney and she runs to him, OH, Teddy I am so glad you are home”. He sits up on one elbow and says, “Yeah, well did you ever see the movie “Airplane”!!!! End result we sat there almost 3 hours, he was exhausted and they still had not seen him. I called the surgeon in Milwaukee and told him what happened and I said shall I just take him home and slap a bag over the hole? He said go on get out of there. SO we did and I did!Well hello there and welcome back. A Whipple is when the cancer is contained in the bile ducts without invading the liver. Although our Kris maybe getting a partial Whipple along with the liver surgery. Also can go in to the gall bladder, and the head of the pancreas and duodenum. Teddy’s was in the middle of his bile duct valve and contained. They removed his gall bladder and duodenum, and head of the pancreas. They literally take out everything in the stomach, do the surgery and put back all but the duodenum and gall bladder, for him anyway. It is not life threatening but the largest surgery to the human body there is. You can just look up Whipple on the web. You mention Palm Desert are you either Calif or Arizona? IF you are not satisfied with answers from the doctor you are entitled to get another opinion. Good luck and keep us posted.
Hi Kris and sorry I am holding your hand so tight in my thoughts. What’s a little squeeze after what you have been through. Remember, this is what you were waiting to hear. Do not be afraid of the Whipple and when T had his they poked around for 4 hours before they did anything. Aggressive but cautious doctor is the best and it sounds like you found your match. It’s your body and life and what ever you decide this whole world will be behind you. Love to you and to Hans.
Hi Betsey, I can fully concur as I used to feel so bad about Teddy’s bag. But, know what? He used to go and gently hit golf balls while wearing it. He loves to tell the story how the tube blew out on an airplane and the bag came off. What a mess, never saw anything like it in my life!! Of course all ended up well when we got home with the airplane blanket wrapped around him.
Hi Jolene and how are you doing? It’s been going. You know that roller coaster of ups and downs but we are extremely lucky. I was telling Marion that I have been running on over load as I am also dealing with my 93 yr old mom whom we just moved from her Assisted Care out here to a Private home care. Much needed move and after only 3 days we can already see a difference. So that is done. Next is to sell the house and in between that setting appointments etc. But, as long as we keep getting good news, it’s all OK. So good to see your smiling face!
HollySue that is just wonderful, yea! Did you ever think you would be in a group who cheer for chemo/radiation or surgery? But it is the RIGHT group.
I just got the book (very popular) Anti Cancer, you can look it up on our search site. It is not only wonderful it is extremely interesting.
HERE IS THE CANCER PATIENTS BILL OF RIGHTS:If I should express anger or depression,
PLEASE DONHi there Joyce. The letters went to Oprah twice, Ellen DeGeneres, CNN, Geraldo, Riley and Beck. Oh, also the Walter Payton Foundation and Helen Hunt. I also had an idea of getting in to the World Book of Records by having a day where volunteers all around our CC Globe would shave their heads on a certain day in support of CC. I know, I can get carried away. Or a “Remembrance Day” around the world picking a month to use as an awareness month. Remember I was people what month they liked. Just trying to get the ball rolling but I know sometimes these things can be daunting especially if one is not feeling well. Then my own problems started in as well and I let my brain rest on that part of it.
Oh Kim, what a wonderful, delightful post you sent us and welcome to our Family. Congratulations on your Miracle Man. He sure is an inspiration to all of us. I would say he has climbed 2 huge mountains!
Dearest Michelle welcome to our amazing Family! I am going to try and keep this short as I know you are having a lot thrown at you in a brief time. Yes, it is very scary/frightening and it will help you to read some of our posts. The more you know the stronger you get. No one can give a time limit as we have patients who were given months and its been years. We believe heavily in second opinions. We don’t believe in giving up or in doctors who do. Honestly you will feel better when you get the right doctor and a plan falls in to place. Good luck and please keep us posted.
