lainy
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Hello, Hazel. I am afraid none of you will like my view, but it is just my view. One of my dear friends in Milwaukee is a Doctor of research, basically stem cell. Years ago on one of her visits, I was taking a bunch of vitamins that I thought I could not live without. She asked me if it ever showed on my LABS that I was short of anything and I said never. So I stopped taking them and long after my LABS remained the same. I just feel if you need something the Doctor will tell you. Also my daughter used to get upset with me as I used a sweetener instead of sugar and I asked Jeanne about that and her answer was you would have to consume a truckload for it to harm you. So, when it comes to something like the broccoli I would say what ever makes one feel better to be using it, but ask the DOC first before you consume a lot of anything! P.S. When Home Hospice was here for Teddy they said the same as my friend did.
Kernos, that sure sounds like a revolving door! The important thing is that they are happy with your response to the SIRT and I am excited to hear the results as well. Here is wishing and hoping for the very best!
Perfect! Ashley, we so understand as we have all been where you are now. What you are going through is unfortunately normal! You feel like you have been hit in the stomach with a bat but I swear to you once a treatment is decided on your fright will turn to fight! Glad you have been doing a lot of reading as knowledge is really our best tool for fighting this rare monster. We are also big believers in 2nd, 3rd and even 4th opinions. Follow your gut it will not steer you wrong. I also want you to know we have other members that were in your husband’s category and they are doing so much better. I just get so upset with the amount of young people that come on here and I consider your hubby young, which helps. Also make sure that where ever you go for treatment, they and the ONC have experience in dealing with CC. We have made great strides with treatments and new things are coming around the corner all the time now. Wishing you both the very best and please keep us updated on his progress as we truly care. Be kind to yourself too, it is a long haul!
P.S. We have a SEARCH engine at the top of the page and you can type in some of the questions you have and if someone else has been there and done it most likely a post will appear on that subject. At least its a start until more members join in here. One last thing, BELIEVE. Never stop as we do have Miracles on our Board!
Dear Ashley, welcome to our remarkable family and the best place to be for CC support. I cannot help you on the trial but I have a suggestion. I almost didn’t see your post and was wondering if you could kindly repost it under INTRODUCTIONS but not connected to a thread of other subjects. That is where everyone looks for newbies and I think you will then get more answers to your questions. Sometimes they just don’t view the older posts and hang on as we have the smartest people ever in our family. It sounds like it took a while for your husband’s DX and I am sorry for that! May I ask where he is being treated? When first diagnosed you will start out walking slowly and before you know it you will be running with the pack! Below is a site you may find helpful and please do keep us updated.
http://cholangiocarcinoma.org/newly-dx/
LOL…OMG! I don’t think we will EVER forget that Chinese Place that I can’t even call a restaurant. Talk about a nightmare. And you taking pictures of a possible tornado headed our way. Or the whole day Stan spent with us! BTW he always asks me about you. I do miss that “lake house” nut have not travelled since then. Now there will be a change and I want my life back, We will fight for the right to enjoy our life.
Julie & Deb, I also like “guarded optimism” and the other one, “realistically optimistic”. So true about anything in life. And again, life is for the living.
Debbie, I would never say to others some of the things I say to Kris. I was at a Lake for 2 weeks one summer 2 years ago and Kris drove down to spend some time with me. She is a riot and a very good sense of humor. An awesome lady!
WOW! Kris, if they got a ginormous mold you could be the next statue of liberty. Tell them also you want to go seamless. Love You! I will give you another type of goal. When this part of your attention getting is over (LOL) come for a visit.
YIPPEE, VICTOR YIPPEE! You just made my day! Just know that each day is a new step to feeling better. I am over the moon about your successful surgery, and for you to already post to us! AMAZING! Keep up the good work and think about some hugs, thinking only, as I don’t want to hurt your tummy! YIPPEE!
Dear Brigitte, we all wish we knew more about this crazy thing we call CC. I am sorry you have to go the chemo route but it is good that they caught these little monsters so early! Try to stay calm as you need your energy for other things. Put on your pink boxing gloves and give those uninvited guests heck!!!!! Wishing you the very best.
Hi Catherine, mine is on the Menges which is the covering of the brain and above (frontal) the left ear. My Neuro said I will have stitches from over the ear in to the forehead so I am getting the side and back of my hair “buzzed” and keep the top spiked. In style, right? Yesterday I was reading up on Meningioma surgery and thought it in my best interest to stop. Which I promptly did. figured what I don’t know won’t hurt me. I have had so many crazy surgeries that the good news is after this there is NOTHING left in my person to take out anymore! The funny part is everything removed wasn’t needed anyway. Now I plan on enjoying life for the first time in years and will probably live into my 90’s like both my parents did. I hope Dad is doing well and I am purposely not asking you any questions. There is a good part to staying ignorant!!! Also this Neuro reads like he should be in the Neuro Hall of Fame so I have complete faith in him. You whippersnappers all think growing old is easy. One has to be very strong to grow old.
Holly, I just love the way you have made yourself at home here! I think 37 and 40. Everyone lives in Summerlein. They also have a younger Brother in Seattle but he would be your age and their names are Sari, Elissa and Jaron. It is so ironic how things work out like your Mom not having to go to Qatar! Sounds like some divine intervention there! I must say we get so upset when we get a person so young, like yourself. Just don’t understand it. I swear my husband got his when he served in Korea and others when they served in Asian countries but where the heck would you have got yours???? Before I forget please tell you MOM THANK YOU for keep us all safe and serving your country! I can see “strong” runs in your family.
Sherry after my Teddy had his Whipple Surgery he had continuous hiccups so bad they just drained him and this went on for 3 months. No one and nothing helped. Finally we met a Pharmacist who recommended Brioske (SP). It is over the counter and usually in a blue container. It looks like alka Seltzer but is an old Italian remedy. After 3 months and no help, ONE, that’s ONE dose and he never had hiccups again. We continued to keep it in the house as it also worked well for upset stomachs. For nutrition you might try Carnation Instant Breakfast. Teddy like that one best and I would buy the vanilla and blend in a banana. It can take the place of a meal or have it with a meal. It was actually Home Hospice that recommended it. Also I found that comfort food worked well. Omelets and add some cheese, homemade soups. Pastas, Mac N Cheese……you get the idea. Instead of large meals have him graze all day on small portions. The eating habits and taste for food really does change. Best of luck on everything.
