lainy
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Oh, Nancy, I answered your email first but had to tell you how much I love this explanation of butterflies and I want to say, what a BEAUTIFUL Mom you have. I so agree about butterflies as it happened to me last Spring.
My best friend, who was my matron of honor when Teddy and I married, moved out here 2 years ago. Last April we were sitting outside of a restaurant chatting and this “handsome” yellow big butterfly flew a perfect circle around us 2 times and then flew off like an airplane taking off.
I hope everyone sees lots of butterflies.Dear Brigitte, I believe we prefer to think of all our Doctors working together as a team for us. I feel, being me, that I would go to get another opinion on everything from an Oncologist who has good experience with CC. I feel kind of all over the place here with you and for you and perhaps time to find someone not afraid to deal with CC. Unfortunately the chemo tiredness goes with the territory. I hope you feel better really quickly and give some profound thoughts to someone in our field. Best of luck to you and there is nothing wrong with searching and searching until you find the right fit. Best of luck and good wishes coming your way.
Dear Wesley, there is no scientific basis on what anything out of the ordinary does for CC, However, if it makes a patient feel better in any way that is up to them BUT PLEASE make sure the treating Doctor knows what is being taken that he may not have ordered.
Dear Rosina, welcome to our remarkable family and the best place to be for CC support. I had posted yesterday to welcome you but it is gone so I shall post again. I am sorry to read about your brother but wanted to tell you that many have posted who were advised NO to surgery, the ideal treatment. After chemo that shrunk the tumor they went onward and were able to have their surgery. Also we are huge believers in 2nd and 3rd opinions as different DOCs see different things. Wishing you and your family the very best and I know others from Australia will be along to help out as well. Please keep us updated on Jed’s progress,
Hi, Katherine, just wanted to say we LOVE the shrinkage word! Congratulations. Glad to hear you advocate for the port but above all else you seem to be on a good road. Please continue to keep us posted as posts like yours give hope to everyone!
Dear Rosina, welcome to our remarkable family and the best place to be for CC. I am sorry your brother is having to take this CC journey, a trip no one would ask for! Others have been told no surgery but after chemo were able to proceed in that direction. The best thing I can advise is to also seek another opinion. We have quite a few members from Australia and I am sure they will be chiming in to help. Please keep us updated on your dear brother and I am sending the best of everything across the water to your family.
Wyatt, excellent if you can get an appointment for Dad at the Mayo. Best of luck. BTW, I visited St. Paul often as my Mother was from your town!
So My Son from Another Mum,
Today they are with you. Tomorrow they are gone. In the days that follow somehow life goes on. But tears that fell like rain, when souls were torn apart, in time are gently frozen in the corners of the heart. So quickly goes a week, a month will disappear, and then the tears return, its been another year!
As I sit in heaven and I watch you everyday,
I try to let you know with signs, I never went away.
I hear you when you’re laughing and watch you as you sleep.
I even place my arms around you, to calm you when you weep.
I see you wish the days away begging to have me home,
I try to send you signs to show you, you’re really not alone.
Heaven is truly beautiful, just you wait and see.
Live your life, laugh again, enjoy yourself, be free.
Then I know with every breath you take you will be taking one for me.Hey! Susie Q, so great to see your smiling face and a gigantic WHOOPPEE for you!!! I love all the cancer free posts as it goes to show ya we have come a long way in just a few years and that is much to give others miles of hope and Miracles! It is the season of Miracles!
Joe, just a random thought but can another Doctor be called in to discuss what he may think is the best route with the chemo.
Dear Sarah, welcome to our remarkable family and the best place to be for CC Support! My husband had plastic stents which needed to be changed 6 weeks to 3 months. The metal stents stay cleaner longer but if your Mother starts to run a fever and gets chills she really needs to get the stents changed.
I am also living in Phoenix, Gilbert area. May I ask what Oncologist you are going to and at what Hospital Mother is being treated? I am assuming they are doing no treatments due to her age? Please keep us updated on your Mother as we truly care.Dear Wyatt, welcome to the best place to be for CC support and I know you will love our remarkable family. The best suggestion I can make is to get another opinion asap. You want to make sure you are at a very experienced hospital and with a very experienced Oncologist and we are big believers in 2nd and 3rd opinions. Not far from you is Mayo Clinic in Rochester and they are extremely experienced with this rare cancer.
It sounds like his stents may be infected or clogged as that is what causes the jaundice. My husband had to have his stents changed about every 6 weeks. It could be the jaundice that is making your Dad so ill. We have had patients at Stage IV and chemo brought the tumor down in size, was chemo ruled out?
I would check with the ONC about chemo and a change of stents. And please check in to another opinion. Below is a sight you may find helpful:http://cholangiocarcinoma.org/newly-dx/
All of your feelings are unfortunately normal under the circumstances and You never know how strong you are until “strong” is the only choice you have! Please keep us updated on how Dad is doing and be very strong.
Dear Lynn, I am so very sorry to read this about Greg. I can’t remember if you had asked me for the list of Signs that the end is near? Even if it is not it is very helpful to know what you may expect. I believe that we do pick our time to leave and perhaps Gregg is waiting for his sons to arrive. Than again you know how crazy this CC is and time could even be longer. I hope they can improve his comfort level and please know you are not alone we are all here for you.
Dear Lemen, thank you for joining the best place to be for CC support as we do have quite a remarkable family. We will be looking forward to your Scan results and hope for good things from Keytruda. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
When you have a chance could you please introduce yourself on our INTRODUCTION site? I am afraid you might get lost on this thread and it would be nice for others to meet you. Looking forward to reading more from you and best of luck.
