lainy
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Way to GO, Scott. Congratulations on your return to living!! Love to hear it. Mud angels, is that what I think? Like snow angels? Lie it up Scott, we only have one life, that we remember anyway!
Yes, Paul, a good attitude will get you through a lot of stuff! Honestly, Teddy and I laugh all the way through his CC journey. He was very strong minded and I didn’t want to bring that down one iota. I am glad you had a second opinion as that is extremely important. And like you said, life is for the living! I wanted to give you the site below as it maybe of help to you. And please keep us updated on your wife. BTW weekends are kind of slow on here as I know you will be getting more responses!
http://cholangiocarcinoma.org/newly-dx/
Hello Paul and welcome to our remarkable family and the best place to be for CC support. I do believe this is the first time I have heard of CC appearing in the spleen. Where is the origin of the CC and what kind of treatments has your wife had. Also where is she being treated. We are BIG believers in 2nd and 3rd opinions and making sure that CC’ers are treated at a hospital and by an ONC with lots of experience as it is still rare and some places have not even heard of it yet. But we are getting there, it’s just around the corner. Below is a site you may find helpful and please keep us updated as we truly care. Hang in and hang on and I know you will feel more secure having found our site.
Dear Meriza, I really understand what you are saying. I am not sure if what I feel is going to come out the right way BUT I get so upset when I hear that someone has been so lucky to go through life so beautifully and then when they are blessed to reach that ripe older age they get encumbered by such a devastating illness. Same goes for someone who is too young but this monster CC has a life and mind it seems of it’s own. Dementia is just plain weird. My Mom lived to 94, pretty darn healthy and dementia started. One day she fell and hit her head and had no pain. She was in assisted care at that time and it seemed no matter what, her pain senses were gone. I LOVE your Dad’s sense of humor. I have to remember that one. Just enjoy what you can for now and later you can depend forever on many loving memories. You never know how strong you are until “strong” is the only choice you have!
Hi Scott! I am with you as I love that little nap when anything unusual is going on! Happy wearing of the Green!
Dear Annabel, Glad to hear your husband could have surgery. My husband had a Whipple 10 years ago and got the same results but with clear margins. I got the same story. For the most part they do not do Chemo/Radiation after a Whipple because of locations of the CC. The surgery bought Teddy 5 years and at the end of the 5 years the Surgeon told him he didn’t think Teddy was going to make the first year. HA, he didn’t know my Sicilian. I wish they wouldn’t concentrate on time frames as everyone is so different. We all really just try to stay realistically optimistic! Enjoy this interval of time and hope that in the interim something is found to help the Whipple patient. All we really need is time and a very clever Researcher! It will come as we are getting closer and closer.
At the end the ONC offered Teddy palliative chemo and Teddy opted to no chemo as it would only buy him a month. He chose quality. So if it comes to that your Dad might want to ask the ONC how much time could it buy and if he is not comfortable with the answer, let it be up to Dad. Oh, Teddy was 78 and asked the ONC what he would recommend if Teddy was his Dad.YEA! We love the word surgery and so glad you are at Vanderbilt. It is true that no surgeon can know exactly what is going on until they see first hand. Learn to take one step at a time. Take each day at a time. You will be at the Hospital, that is for sure, but you will not need to be care giving, just to be giving loads of support and love. What you husband will be going through is not life threatening but it is huge. We will all be cheering for him and it will be a crowded surgery room with all our spirits in it. You never know how strong you are until “strong” is the only choice you have!
Hi Colleen, thank you for the great report on Keytruda! I have read so many good things and am hoping this gives us a turn in the road. Also hoping your Mom is doing well. I know a ton of members are going to really appreciate your post! Take care.
Dear Georgia, I found you! Welcome to our remarkable family and the best place to be for CC support. After all these years I am still not sure how things work across the world, but if you are questioning diagnosis and treatment I feel another opinion is in order. We believe heavily in 2nd and 3rd opinions. A GP and a heart specialist may not be well versed in CC and I am glad you are seeing a GI who may be able to do more.
We know when you first hear the diagnosis it feels like one has been hit with a baseball bat! But when some form of treatment begins the fright turns to fight. You did the right thing by reading as much as you can as knowledge is our best tool for fighting this monster. Please keep us posted and will be waiting to read what the GI says. You never know how strong you are until “strong” is the only choice you have!Not to worry. From what I understand Chemo and Radiation are somewhat like the Eveready Rabbit as they keep on ticking! Try our Search engine at the top of the page and type in “Low Platelets” and some suggestions may appear. Best of luck!
Hello and welcome to the best place to be for CC support. I did write to you but it is gone, so hope I can remember what I wrote. Welcome also to our remarkable family. I would definitely get a second opinion and make sure that where ever you go has had a lot of experience with CC. Where is hubby being tested? All you have to do for another opinion is hand carry the test and LAB results with you. What have they done for testing? As for pain management there is no reason to have pain and I suggest you tell the ONC that the pain is getting worse. For nourishment you might try Carnation Instant Breakfast. My husband loved the vanilla and I would blend in a banana. The shake can take the place of a meal or have it with a meal. You can even have it 3 times a day. It has all the things one needs. Below is a site you may find helpful and please keep us updated so that we are able to help you. You never know how strong you are until “strong” is the only choice you have!
http://cholangiocarcinoma.org/newly-dx/
Melinda, thank you so much for the splendid report, quite a job you did. Thank you too for representing all of us, you are so appreciated. Now tell me, what Politician wouldn’t want to show you around! The pictures are picture perfect as well. Many thanks!
Dear Muchelle, welcome to the best place to be for CC support and also to a most remarkable family. Take a deep breath and know that you are not alone as we are all here for you. Sometimes CC is very difficult to diagnose and with that said please make sure that where ever hubby is being seen that they are very experienced as all hospitals are not experienced in CC. It is the most important thing to be with an experienced ONC and treatment center! Do you mind telling us where he is being treated. PLEASE let the ONC know that he is in pain and it is increasing and at that time ask him if he has treated CC. There are pain relievers and no one should have to suffer. Don’t worry about going to a diff. ONC as all you have to do is take copies of all LABS and tests with you. It is better to get to the right place than to let this go further without the proper diagnosis and treatment. If he is not eating try Carnation Instant Breakfast which can be substituted for each meal or added to it. My Teddy loved the vanilla and I would blend in a banana. It has all the needed nutrients. You never know how strong you are until “strong” is the only choice you have! Below is a site you may find helpful and please keep us updated as we truly care.
http://cholangiocarcinoma.org/newly-dx/Irish, Thank you for this update and of course you know how much we are wishing for the very best for your Dad. You never know how strong you are until “strong” is the only choice you have!
When you have a chance here and there please let us know how Dad is doing. Sending prayers, hugs and the best of everything.
