1 (edited by ladybug Fri, 08 Mar 2013 12:03:47)

Topic: Quite the wild ride!

Hi, I am new to your Forum. I want to thank everyone for taking the time to share your stories and information. You have no idea how comforting and empowering you all are!

My adventure started Jan. 11, when I got a text message from my husband saying he had made a doctor's appointment. He'd just gotten home from a business trip the night before, and I didn't know what was going on. He said he was itchy and yellow.

Four days later a CAT scan revealed his bile duct was almost totally blocked. A week after that we were inRochester, MN, discussing installing a stent and biopsing the mass. Then we were told it was a cancerous tumor wrapped around the main vein in the liver and it was not operable. A few days later, the same day my husband realized there was internal bleeding, his doctor called to tell us a different Mayo surgeon said he thought he could successfully remove the tumor.

So we went back to Rochester to treat the bleeding and have the surgery. The doctor was able to remove 99 percent of the cancer. A couple of weeks later we made our third trip to Rochester to have infections treated. We head back Monday to have the drain removed. Monday, march 18, chemo and radiation will begin at a Mayo facility a half-hour from our house. Rochester is about 2-1/2 hours away.

I have been spending my time trying to learn all I can about xeloda and radiation therapy. and this cancer I cannot spell or pronounce.

My husband is 57, and outside of this, in excellent health. He has been trying to regain strength and weight (he'd lost over 20 lbs since the first of he year). He is able to work remotely as well as going into the office, so he is keeping busy. The only symptoms were mild indigestion once every 3 weeks or so, and some fatigue and irritability, which we both thought was job related.

Re: Quite the wild ride!

Hi ladybug,

Welcome to the forum.  I'm sorry that you've had to come here but as you've found, the support and information is outstanding.  Others will be along soon to offer their wisdom.  Good news that your husband was able to have surgery I really do send positive thoughts for the chemo and radiation treatment. 

Clare

Clare

In the stars now . . . .

Re: Quite the wild ride!

Dear Ladybug, thank you for filling us in. It sure sounds like you are doing all the right things and as I said on the other post I feel you are with a great team!  I had to chuckle when you talked about learning how to pronounce and spell CC. My Teddy was a tried and true Sicilian. One night while dining out with friends from Milwaukee (he was wearing his CC bracelet) the other guy says, "Teddy what does the bracelet say?" Teddy answers, "Oh, that's my Cancer....Angelo Carcinoma". Leave it to a Sicilian to make everything Sicilian". Sometimes it does help to look at some humor. Best of luck on the drain removal and the beginning of the chemo regime!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Quite the wild ride!

Hi Ladybug,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband. But I am glad that you have joined in with us here as you are in the right place for support and help, and I know that you'll get loads of both.

Thanks for sharing your story with us all and your husband is certainly in great hands at the Mayo clinic. And that is great to hear that they were able to do surgery and get 99% of it removed. Loving hearing you say that you are reading up on stuff about all of this as the better informed you are the better you will be armed for making decisions. If we can help in any way then just ask and we'll do what we can to help.

I hope that the drain removal goes well and my fingers are crossed for the radiation and chemo treatments. Please keep us updated on how things go and I look forward to hearing more from you.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Quite the wild ride!

Hello Ladybug!  I am so glad you found this site but sorry you had to.  My husband also was diagnosed with CC in January, just turned 58 on Monday.  Without these people, I wouldn't know half of what I do now.  They are an encouragement and support in ways you will not believe.  My husband did not have any symptoms before being diagnosed and in fact, went to the doctor for a cough which led to an MRI of his lungs and the finding of an enlarged lymph node.  Several biopsies later, we finally got this diagnosis.  We started with possible lymphoma (would have preferred that!) to pancreas cancer (cried all weekend) to this (not a whole lot better).  He was not eligible for surgery since it had already metastisized to his lymph nodes and his doctor thought it unwise to delay chemo for 3 months so he started chemo of Gemcitibine and Carboplaten.  He has had 4 treatments.  He has tolerated them pretty well although this last one has left him SO tired.  He has been working almost every day but this time he has only worked two days all day and then comes home and crashes, sleeping on the couch or in his chair.  I'm concerned his blood counts have dropped but he goes in Tuesday so they'll know.

This is surely a roller coaster ride.  Some days are good, some not so much.  Hang in there.  You are not alone.

Jayne

Re: Quite the wild ride!

Hi ladybug,

I would like to welcome you to this site, but I am sorry you had to find us. It sounds like your husband is doing well, which is great. Good luck with the chemo and radiation. My daughter has been on Xeloda, so if you have any questions, feel free to ask. Take care.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.