lainy
Forum Replies Created
-
Posts
-
Dear Jack, ATTITUDE is everything and it will not only help you it will help everyone who reads your posts here and on your website! Thank you so very much.
Dearest Amy, I am so very sorry for the loss of your husband. It is bad enough getting the CC diagnosis let alone loosing a loved one so quickly. Please accept my heartfelt condolences. In time it is true that the grief subsides and the good memories take over.
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.
For everything beautiful that you see
will bring a memory of me.Dear Lynn, when Teddy had to make the decision of to chemo or not he simply asked the ONC for a “guesstimation” of how much time the chemo would buy him and the ONC said a month. That was after a 5 year tough fight. Teddy said he would rather have quality time (some kind of quality, right?) Then he asked the ONC what would you tell me to do if I was your Father and the ONC said, not to do it. You and Greg should have a heartfelt talk and then take what he feels to the ONC. No question is silly so when you next see the ONC ask away! Like chemo vs no chemo what are the guesses to time limits. We know that nobody can really say when it comes to timelines but according to what everything shows the ONC may be able to help in your decision.
WONDERFUL! Kernos! It would be so exciting if you and the other patient on Keytruda could meet. There is almost no better feeling than to meet a fellow CCer to know you are not alone in this. And of course it will be amazing and awesome when we read that the Keytruda is working! Happy dance time! As always wishing you the very best!
Hello Lis and a big welcome to you as well. Cyber space is so awesome as I feel you are just in the next city! can you tell us a little more about your Dad. I am happy to hear you are seeking other opinions since this CC is still so very rare. What form of treatment are they offering? You never know how strong you are until “strong” is the only choice you have!
OOPS. Sorry, Should have reread your first post. Let me try to remember what we asked after Teddy’s Whipple. I would think the basic thing would be what kind of follow up care and treatment the ONC would advise. I remember that the first 2 years were spent with Scans every 3 months. This was 10 years ago and they said no chemo at that time as he had clear margins. Guess there are 2 schools of thought on that even now. To chemo or not is one of the biggest questions, always. You might ask what could happen with chemo vs without chemo. This is hard as so many things have changed in 10 year, thank goodness. You might go to our search engine above and type in ‘questions for ONC’. Perhaps you can find some ideas there.
Megan, you posted just right! I don’t think we encountered it until we heard what the ONC had to say. Suggestion: Take notes so you can recap and from the notes may think of questions for the next time. What you want is the norm. Like, Treatment suggestions, will surgery be an option. Please let us know how it goes. Best of luck!
Pat, Great and interesting post on the pesty bile duct. Glad you are still doing so well, you are our HERO especially for giving all the hope you give to others. Keep on keeping on as life is for the living!
Dave, YEA for heading to MSK! That is great news as when one gets enough opinions to satisfy themselves they never look back and use the words should have could have. If you feel you get more nutrition in you just ask them for some nutrition shakes. Can’t wait to hear what MSK says.
Patty this sounds like you are in essence a Miracle as you keep slamming them down one at a time and then you are lucky enough to go on to a new treatment. Just keep kicking that CC to the curb as more treatments seem to be popping up all the time now. You have a great spirit and outlook and that my dear, is just what you need to win! Looking forward to your next PROGRESS report!
Dear Lynn, welcome to our remarkable family but so sorry you had to find us. It sounds like all the right steps are being taken and I want you to know others have had the same diagnosis and chemo has helped.
We don’t listen to statistics, we get a couple of opinions as different Docs see things differently and I know how you are feeling right now, like you were hit in the stomach with a base ball bat!
For me and Teddy we had humor on our side which got us through a lot. We made the most of our time and he would tell everyone that we were on our honeymoon. I would suggest talking to your own Doctor and see if he can give you a mild relaxant to help you for awhile. You never know how strong you are until “strong” is the only choice you have! You are not alone now so just call on us whenever you need us. Please keep us updated on Greg’s progress.Morgan, it sounds like you are in good aggressive hand but never discount a 2nd or 3rd opinion! Very important to keep that in mind so that you never second guess AND different ONCs see different things. At least you seem to have a lovely view there. I so understand how you feel. Please keep us in your loop.
Dear Megan, welcome to our remarkable family and as you have already seen, the best place for CC support.
Megan, I could not believe what I was reading as your husband parallels what mine went through like a twin! Unbelievable. 10 years ago Teddy had all the same including the head of the pancreas. In all these years there has not been one patient that I can remember who walked exactly the same way. He also was staged at 2B.
The Whipple takes quite a bit of recovery and Teddy was closely watched with Scans every 3 months. They decided no chemo. May I ask where your hubby is now being treated? Please let us know if they decide to follow up with Chemo and also how he is progressing. Take a deep breath as it truly is a long journey but there are so many new treatments now. Wishing you both the very best. Below is a site you may find helpful.http://cholangiocarcinoma.org/newly-dx/
Dear Dave, welcome to our remarkable family and the best place to be for CC support. Sorry you had to join in on this roller coaster ride. I would guess that the first stents were not placed properly or slipped. We are big believers in 2nd and 3rd opinions and like Catherine said make sure you are at a hospital that has experience in treating CC. Do you mind telling us where you are being treated now. We do not listen to statistics as this CC is still very rare but I am also concerned that at 5.5 cm they felt you would not get treatment to help. At 5.5 you may be able to do chemo to bring the rascal down to an operative size. In the beginning of this journey it takes patience and sometimes a few different ONCs to get on the best treatment plan. Persevere until you feel totally in agreement with the options as you are your own best advocate. Please keep us updated on your progress as we truly care.
