lainy
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Oh, Cookie (Kris), imagine me at a loss for words. I can hardly believe what I am reading. The crazy thing about this is that we know a lot of patients do not even look ill. 2 Months ago at the conference, I could have sworn you beat this monster. I am also sending your post to Mel. He is so interested in everyone he met and especially YOU. Please keep in touch and I am crossing everything I own for your miracle to happen! I AM SENDING PRAYERS AND GIANT HUGS!
I hear you! Fay, I just looked at some past posts and I believe the hospital that has a lot of experience in Seattle is the Swedish Cancer Institute. (Dr. Philip Gold with Swedish Cancer Institute in Seattle). Family, please correct me if I am wrong. Don’t be shy.
Fay, it is very simple actually, you only want an ONC who has had quite a bit of experience with CC since it is a rare Cancer. You will know right away if he fits you and your Mom with the comfort level you get from him. You have enough going on without making your head swim too. I am putting out a note also to our members in Seattle and lets see if some suggestions come rolling in. Hello, Seattle, what say you?
Fay, you can do what ever she is comfortable with however, ALWAYS make sure her ONC knows what you are giving her that is different than what she has. The jury is still out on supplements.
Hospice told me to give Teddy (a few years ago) Carnation Instant Breakfast and it can take the place of a meal or you can drink it with the meal. It has all the nutrients in it and he really loved the Vanilla with a banana blended in.Good Morning, Brigitte. Congratulations on your last Chemo! My husband did not have Chemo but had Radiation. His ONC put him on B12 shots and what a diff. they made! You could always tell when the month was almost up as he would again get tired. But for him, they really helped. I think when we get that tired it does tend to make us feel out of sorts. Also congrats on the new apartment, I am moving this weekend as well to a new apartment. Very excited as sometimes change is such a good thing. Wishing for you to have great results from the Scans. Enjoy your forest as you may see some wonderful creatures coming in to view.
Dear Megan, My husband had internal and external drains and could the problem be the drain is pulling on her skin? I know it sounds like a small thing but we used to pin the drain to the bottom of Teddy’s undershirts so they did not hang so low and pull on him. You may also ask for Home Nurse to come take a look at the set up to make sure there is nothing causing the pain. Wishing you the very best.
Dear Steve, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Knowledge is the most important tool for this fight. It sounds like your ONC has experience with CC which is so important but I am wondering if he has ever talked about surgery for later. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Don’t be shy about getting 2, even 3 or 4 opinions. Diff. DOCs see things differently. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on your progress as we truly care.Dear Trish , Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Have you ever asked the ONC why they can’t consider surgery? It is your right to know.
Stay strong, take each day at a time and you will LOVE Arizona. I live in Phoenix!
Please do keep us updated on Eric’s progress as we truly care.Dear Cassandra, I am so very sorry to read about your Mom and what she has been going through. Is her Oncologist aware of all these things. There are MEDs she can take for pain, nausea and depression. Have you tried to get a 2nd opinion. Last but far from least I have a list of the 10 signs the journey’s end is near. I found it to be very helpful and feel the more you know the less scary it is. I will send them to you if you email me through this site. Just click on my name and it will take you to my email. Also has the Oncologist suggested Hospice? They will start coming in months before the end and would be of great help to Mom and you.
Dear Dawn, is Dr. Javle a good thing? It is the best thing!!! Doesn’t get any better than him. He is also on our CC Board. You couldn’t be in better hands. I am sue that April 18th cannot come soon enough. I am excited for you as well!
Tiah, I understand your frustration. Even at the end of Teddy’s journey people thought he looked good. Must have been the Sicilian in him! I always say that the only thing we know for sure is that we don’t know enough about this crazy monster. Can you get another opinion at this point just to see what another DOC would say or recommend? Hang in and hang on, we are all with you! I know you will keep us posted.
Dear Tia, I am so very sorry to read about Mum. I cannot help but know that I am thinking about you both and sending prayers and the best wishes your way.
WOW, Jill, what a great story!!! Congratulations to your BIL on his very successful surgery and you had a wonderful Surgeon as we know of his great reputation with CC> Now with Spring I am hoping every just keep springing forward for our newest miracle warrior. Please keep us updated on his progress and we truly care and posts like this one are very much needed.
Dear Dawn, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
I am so very happy you got in at MDA Houston and would the Dr. happen to be Dr. Javle?
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on your progress as we truly care.Gail, all sounds good and know that you are doing all the right things. We love to hear that pain is going down. Ensure is good too. My Teddy liked the Carnation Vanilla Instant Breakfast and I would blend in a banana. You can drink it in place of a meal or with a meal. Keep that gret news coming. Slow but sure!!!!!
