lainy
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Oh, Heather! Wow! I didn’t know a tumor could double in one week! And such a weight gain? Sounds like he is jaundiced and I am surprised they didn’t act on this immediately. Did they send him home or is he in the hospital? Wish I could help but don’t know enough about the chemo stuff. Do not think in terms that you are at the end of the road. You have not heard yet if anything can be done so you have to have hope. If you feel like you would like to talk let me know. Please keep us informed.
EXCELLENT post Wayne. One of the best we have ever had. Right up to date on what one can do. Thank you!
Mmmm, here is where it gets weird! I am a huge Diet Coke drinker and sweetener user and I am healthy, so far! Teddy never drank much soda or used much sweetener and he is the one with CC. Guess I am not much help!
Welcome to CC 101!~ I totally agree with Patty that the doctor needs to talk with you so you can make decisions. And like Marion said the only thing we know for sure is that CC is so unpredictable. Each time Teddy had sweats and fever it was an infection which I now have learned is common after a Whipple. Goes with the territory. He has only had radiation and from that he got extremely tired and then itchy. Took about 2 months to calm down. This next week will be a whole new surprise with the cyber knife. I just know someone can give you a better answer on the chemo. Hang in, be strong and be informed.
Mary Anne, what great love and strength you have given to Joe. We pray that he can end his journey painlessly as our thoughts and prayers go out to you and your family!
Gosh, we feel so bad. I was reading your post to Teddy and he said, “I thought I had it bad”! I know this is going to sound real stupid but it wouldn’t be my first time, I am not a doctor. BUT, could all the treatments they have put him through have any effect at all on the pancreas not healing? When T had his Whipple the doctor said (actually 4 different onc) they would not do chemo on him as it probably would not work in the bile ducts. We are very glad we did not do that walk although there are people that have. In fact we have decided no chemo. Radiation and cyber knife yes. In any case welcome to the family! Keep us posted.
Hi Elaine, I am Elaine. I have to say your Gary has gone through a lot that my Teddy has gone through. T had a Whipple over 3 years ago and also ended up on nothing but an IV for a month to close a tiny hole that opened at his resection. His CC was in the bile duct valve and totally contained! Then last April it resurfaced where his duodenum used to be. He had 5 weeks of radiation over the summer and starts cyber knife the 16th for 5 days. Sounds crazy to say we are excited but the radiologist feels he will be cancer free again come January! What I don’t understand about Gary is why has he been on so much chemo if there was no spread until the new spot now? (You can look up our posts under Lainy) Yes, this disease is a monster nightmare. All we know for sure is that we know nothing! It sure keeps one on his toes! Please feel free to e mail me if you like. When we hear not so good news it takes a day or 2 and then we reconoiter and begin the fight again! Keep us all posted.
Hello and welcome to our world. Sounds like you are totally on all the right tracks. Why not just take comfort foods and use substitutes for the bad stuff.
I have one secret for red spaghetti sauce. Instead of adding sugar to the sauce add baking soda. Takes out the acid and sweetens the sauce. Other than that I substitute olive oil for butter and use sea salt (kosher). Our favorite salad dressing is just fresh lemon juice and olive oil. Perhaps if you went on line and looked up diet plans / recipes that would help. Unfortunately yes, you have entered the marathon but you sound like a very together, strong lady with a sense of humor which helps immensely. Please keep us posted.Hi John and welcome to the best little club in the world that no one wishes to join! My husband is scheduled for cyber knife next week, the 16th for 5 treatments. He had a Whipple surgery 3 years ago and the cancer returned where the duodenum used to be. His cancer was contained int he bile duct valve. I have heard of Gamma but do not know in what cases they used it. With cyber knife the mass must be 6cn or under. I know that someone on this board will be able to answer you better about Gamma but I do know that Mayo in MN is one of the best. Good luck and keep us posted.
NO! Strength and calm do not know a gender! You are strong you just have something big that you are contending with right now. Is it out of the question to fly back to Sweden? That would mean you could be with your doctor and husband in 24. I don’t believe you had a Whipple. With a Whipple the whole stomach is re designed. They leave out the gall bladder and the duodenum and reattach everything differently. You need an architect. Hope you get some resolve soon, I would be scared too so do not apologize for that. Keep us posted.
Oh my! Not had that happen. Once they did send Teddy home with the IV needle still in his arm. I (yuck) pulled it out. Another time he had to have a stent put in near the kidney and the radiologist missed the mark and he had to have it done all over again. Have you noticed no one is ever responsible for what they do? Sometimes a “sorry” would be good. Don’t think anything is NOT important, it all is when stuck with this craziness!
Robyn this is more than a bad dream, its a nightmare! But honestly you are still going through the bad news and soon that scared feeling will turn to strength and fight. Really it will. Your mom already knows you are scared. Everyone reacts differently. We have found n our family that what works for us is to talk about it. We talk out loud and often. Somehow it seems that once a plan is in place you start to move forward. I don’t always know where the strength to be a caretaker comes from and just when it seems I am ready to toss in the towel, something turns around to give me some hope. So hang in and stay strong.
Hi Robyn (my daughter is Robin) and welcome to the best little club in the world that no one wishes to join. You are already doing all the rights things. All you can do is read, read, read and be very strong with lots of hope. You do not have to take “NO” as an answer. We are here for you and your mom and as far as I am concerned Robins/Robyns make the best daughters!!!!
Hi Robyn (my daughter is Robin) and welcome to the best little club in the world that no one wishes to join. You are already doing all the rights things. All you can do is read, read, read and be very strong with lots of hope. You do not have to take “NO” as an answer. We are here for you and your mom and as far as I am concerned Robins/Robyns make the best daughters!!!!
Hi Kris. Wow! What a visit. Have you tried Mylenta. Its pretty gentle. But clearly that all doesn’t sound right. MAN! $800 for stools! What a load of B.S.!! (couldn’t resist) Do you think it could be a change in atmosphere or eating. I know when we travel I never feel the same as at home. Whine all you want thats what we are here for. Sure hope things calm down for you!
