lainy
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Nathalie, If I was your mother, daughter, sister, husband. The first thing I would do is have you change doctors!! There are things you can do for the itch. They may not help but you can try. Teddy used to have me put ice bags on his arms when they got too bad. There is also a cream at Walgreens called Sarna. You cannot use it for more than a couple of weeks as its very strong but worth the try. I don’t have all the terminology and I am sure everyone chuckles at my descriptions but I have learned more than you can imagine. Who would have thought. You can find Teddy’s story under the Lainy posts.
Not sure but if it is near the Pancreas that is where Teddy’s was but contained in the bile duct valve. Its true that they cannot possibly know what is in there for sure until they get there. Teddy had a Whipple 4 years ago and he is now 77. He is our Miracle Man. Mayo Rochester is one of the very best. You will soon be in much better hands than you have been in with your doctor. The way she has talked to you and treated you makes me so very angry and also upset for you. You will learn to become a very strong advocate. If something doesn’t feel right to you, it usually isn’t. Trust your gut in this and above all have lots of HOPE and Attitude. Ditto what Kris said. She knows all too well.Hi Nathalie and welcome to the best little club in the world that no one wishes to join. What an awful journey you have been on. You have done the very best thing by getting into Mayo. When is your appointment? I too hope your diagnosis is not CC. I am wondering if you have ever jaundiced through this. Usually with Bile Duct Cancer the itching is caused from the bile not flowing which in turn causes the jaundice. Also chalky looking stools. Best of luck to you and your Mayo visit. Please keep us posted.
Dear Elizabeth, welcome to the best little club in the world that no one wishes to join. Yes, it is very scary but the more you read the more you will know how to fight this. Once the scary has passed the fight begins and takes over. You are perfectly normal in what you are feeling, its all still so new to you. The best RX is HOPE and ATTITUDE! You never know, everyone is different. Sounds like your doctor has a good grip on things and that’s a major part of the battle. Please feel free to come here to vent, ask or advise. These Board members are the most caring and loving people in the world!
That is good news that may open the door for more communication now. The scariest part of anything is not knowing. Still not sure I would not see what another doctor says. Just am not comfortable with the waiting as this monster loves to stretch its wings.
Heather, one cannot begin to even guess what the treatment will be without knowing where the CC is. What symptoms did your sister have? You are at a great Medical Center but know this….we totally believe in 2nd and 3rd opinions if you are not sure of what you hear from the first doctors. One must act fast with CC, read up on it, go with your gut feelings as they are usually right. It is extremely scary at first then the more you understand the more you will become your sister’s best advocate and that will overcome the fear. Please keep us posted and write as often as you like.
Hi Heather, YES Bile Duct Cancer is CC. Signs of it depend on where it starts. My husband’s started in the Bile Duct Valve. He started itching for about 2 weeks. You know, you think at first its an allergy or something. There were no other signs for him. Then at the end of 2 weeks he totally jaundiced, stools were almost white, he felt absolutely horrible, like a horrendous flu. The minute they put a stent in so that the bile could drain he perked up. At the top of our page is a search engine and all you need do is type in a word and posts will appear talking about anything you would like to know. Please feel free to ask away. While we are not doctors we have a myriad of experiences and a host of caring and loving people who will be glad to help.
Dear Ashlea, please accept our deepest sympathies. I know that your dad was very thankful of the way you walked this road with him and he was proud to have you as his daughter. Our thoughts and prayers to you and your family.
Hi Jolene, You are such a wonderful daughter. What a beautiful tribute from a daughter to her father. I am sure he is reading it over and over. I have one from him to you. Its long but I love it:
To my dearest family, some things I’d like to say.
But first of all, to let you know, that I arrived okay.
I’m writing this from Heaven.
Here I dwell with God above.
Here, there’s no more tears of sadness;
here is just eternal love.
Please do not be unhappy just because I’m out of sight.
Remember that I am with you every morning, noon and night.
That day I had to leave you
when my life on earth was through.
God picked me up and hugged me
and said, “I welcome you.
It’s good to have you back again,
you were missed while you were gone.
As for your dearest family,
they’ll be here later on.
God gave me a list of things,
that he wished for me to do.
And foremost on the list,
was to watch and care for you.
And when you lie in bed at night,
the day’s chores put to flight.
God and I are closest to you…
in the middle of the night.
When you think of my life on earth,
and all those loving years.
Because you are only human,
they are bound to bring you tears.
But do not be afraid to cry:
it does relieve the pain.
Remember there would be no flowers,
unless there was some rain.
One thing is for certain, though my life on earth is over.
I’m closer to you now, than I ever was before.
There are many rocky roads ahead of you
and many hills to climb;
Together we can do it by taking one day at a time.
And now I am contented….
that my life was worthwhile.
Knowing as I passed along the way
I made somebody smile.
When you’re walking down the street
and you’ve got me on your mind;
I’m walking in your footsteps
only half a step behind.
And when it’s time for you to go….
from that body to be free.
Remember you’re not going…
your coming home to me.OMG! I hate this expression but I knew it!! You go girl. That’s the Kris we know. Put on those pink boxing gloves and that sequined pink robe and get in to the ring and give it what for! We are all betting on YOU!
Hi Sally and welcome. The more you read the posts on this sight the more armed you will be. To be fore warned is to be fore armed and will help you become a great advocate for your sister. Unfortunately with CC there seems to be many answers which is why we pursue 2nd and 3rd opinions until it feels right in the gut. I don’t understand the long wait either. It is not a cancer that should just be waiting for someone to do something. Everyone has their favorite treatment centers but 2 of the best are Mayo Clinic in Rochester MN and MD Anderson in Houston. Another thing to remember is we know nothing for sure about CC except that it does return. Vigilance is most important. I would ask the doctors why they are waiting instead of starting something now and if it can grow considerably while you are waiting. Best of luck to you and please feel free to come here to vent. ask or advise. The most important thing is a winning attitude and tons of hope.
WHAT ABSOLUTE WONDERFUL NEWS!!! Keep up the good work. Like old Beetles song, “I’ll get by with a little help from my friends!”. Yesiree, the kind of news we love to read about.
AW, Kris, we are so sorry to hear the latest news. KRAP plain and simple!
I wish there was something we could all do for you. If I know you though, from your postings, in a few days your red headed fighting spirit will return and you will be off and running again. You know the routine….HOPE and ATTITUDE!
Who knows, maybe the change in cocktails will help, you just never know. You are entitled to your down time but hope we see the old Kris back REAL soon. Will have you in our prayers and thoughts.Hi Donnie & Dawn and welcome to the best little club in the world that no one wishes to join.
My husband had a Whipple 4 years ago at the age of 73. That surgery alone is something else, is it not? We opted for no chemo or radiation at the time as the doctor got it all and 5 doctors all said it will not help for that area and why make him more sick. It did return where his duodenum used to be April of 08 and with radiation to shrink it and then cyber knife last December we got it zapped. If you look up under Lainy you can see the road we have traveled. For right now the best advise I can give you is to read as much as you can on this site about CC. The more familiar you are with it the less frightened you will be as it is a very strange animal. You will then go into a fight mode and become your husbands best advocate and that over takes the scare as well. At this point we have adopted the role of vigilantes with LAB work every month and the Oncologist every other month. You have to have a lot of hope to get through this. Please feel free to come here often to ask, vent or advise. Also please keep us posted.No forgiving needed as you are doing just fine with your description. Sounds like the doctor is on the right track. We always encourage other doctor’s opinions if you are not secure with your doctor, sometimes even if you are. Wondering how long it would take you to set up insurance in California. With the chemo and all it may not be the time for a big move. Perhaps someone on this Board can recommend someone in your mother’s area if that would make you feel a tad more secure. I know, not fair is it? We have to fight a monster and then the insurance companies also. Hope your mother feels better after the fluid is drained. You might try our Search engine in the box at the top of the page. Type in water retention and also Oregon and maybe some thing there can be of help to you.
