Topic: My husband just diagnosed with cc

My husband was diagnosed with PSC 20 years ago.  The day we had been dreading happened early this summer when he began to get sick and experience jaundice.  We returned to the Mayo Clinic in Rochester, MN where he had first been diagnosed.  The ERCP to put in the stents caused pancreatitis.  At the same time the doctors diagnosed cholangiocarcinoma by way of the DIA FISH test.  The biopsy was negative.  The doctors felt that the cancer had been found early, which would give us time to treat the pancreatitis.  Meanwhile one of the ducts in his pancreas burst, spilling fluid into his abdomen, which quickly became infected with staph.  He spent the next two months in and out of the hospital and ultimately finishing up at home on IV antibiotics.  He finally had the picc line removed ten days ago.  Within three days, he was back in pain.  This time the stents were blocked and the liver was infected.  Back to Mayo for the 6th ERCP in three months. 

Now he is ready to have the EUS in which they can determine whether or not the cancer has spread.  I am so scared for the results.  There is a pain deep in my chest that I cannot dislodge.  Even though the doctors are fairly certain they caught the cc early, I am shaking with anxiety.  What happens if it has spread?  If it hasn't spread, and he is okay to get a transplant, how likely is it that it could come back?  Are there any others who have gone through a similar process as us?  I need to hear some encouraging words.  We need some prayers. 

I would appreciate any information anyone can share.

Sincerely,

kimk

Re: My husband just diagnosed with cc

Kimk,
All of us here understand your pain.  I have had the same deep pain in my chest since my husband was diagnosed in March and sometimes the anxiety is more than I can handle.  This site is wonderful, if you have questions or if you are looking for some support, there is always someone who has information or something to lift your spirits.  Although I can't give you answers to your questions about a transplant or spreading as my husbands cc wasn't found early and he isn't a candidate for either,  I will keep you in my thoughts and prayers.
Colleen

Re: My husband just diagnosed with cc

Kimk,

My Thoughts are with you and your husband. I am a newer member to this forum, as my Dad was recently diagnosed with CC. I do not have alot of information to offer, but will tell you that there are alot of people here that can possibly help you with information. My Dad's disease is to far progressed to warrent alot of treatment options.

Best of Luck in whatever you have to do to fight this disease.

Lisa

Re: My husband just diagnosed with cc

Kim,
A good friend of mine has a saying:   "Don't bleed until you're shot."  All of us here know how hard it is to put that into practice and i understand and sympathize with your fears.
When you do know what you are up against please know that there are options and therapies that can help.  It's a dreadful disease but each day we find ways to sustain ourselves is a day closer to finding new help and eventually cures.
Keep us posted.  There is lots of information and experience here if  the time should come that you need them.
My best wishes and prayers.
-Peter

Re: My husband just diagnosed with cc

Thank you all so much for your responses.  My husband, John, goes in for an EUS on Friday.  I am praying they will find that the cancer is localized.  The doctors have seemed hopeful, and now the day will finally come when we will know for sure.  It has already been a long road with John recovering from prancreatitis and the subsequent staph infection, which the doctors later told him could have easily been catastrophic.   John is a very fit 49 year old, who has always been a strong athlete.  This has helped him so far.  He has already lost 30 pounds (he has never had any extra weight to lose).  His appetite is unpredictable.  Does anyone have any suggestions on diet?  Do some foods work better than others?  Are there foods to avoid?  He is trying to put weight on, but he gets full after only a few bites of food.  He tries to eat more small meals.  I make him smoothies full of good, healthy supplements.  Is anyone trying milk thistle?  How about probiotics?  I add medium chain trycligerides b/c I hear it is easier for the liver to digest these fats.  Any thoughts?

kim

6 (edited by JeffG Tue, 25 Sep 2007 12:19:33)

Re: My husband just diagnosed with cc

Hi KimK,  I am sorry of your husband's situation.  He has been through quite a rough time for sure.  It sounds as though you are doing all that you can at the moment.  It takes a while to rebound and gain weight back after all he has been through.  Kim here is a web site with some good food and supplement ideas.  I eat and use a lot of the stuff they mention.  You can check this site as well for links with more information by clicking on( other web sites) , (alternative treatments),or (nutrition).
www.cancure.org/cancer_fighting_foods.htm
I hope John's tests prove to be the best news possible.  I know it is a scary time for you right now, but try to stay as positive as possible. Kim you asked for prayers so mine is coming your way.  He has to drink plenty of fluids. especially after all he has been through.
God Bless You Both,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My husband just diagnosed with cc

Hi Kim.  My name is Dianne.  My husband also has PSC and cholangiocarcinoma.  He was diagnosed 13 years ago with PSC.  And like you, what we feared happened.  We just got our diagnosis 6 weeks ago and were also told that it's in an early stage.  He is currently at the Mayo in MN finishing up a round of chemo and radiation.  While there, he developed an infection in the bile duct which required a stent be put in.  He currently has a drain as well.  My husband has had 4 ERCP's in 4 months (not as many as your poor husband)

I do know your fear!!  I feel the same anxiety, sadness and pain and I can sense the panic you are in.  I'm there too and I have never been so overwhelmed in all my life.

I'm not sure how old your husband is, but mine is 43 years old.  We have two children (girl 8 yrs. and a boy 5 yrs.).  We live in MA so Rochester is quite a distance away.  I couldn't be with him during his treatments which was very difficult.  I've been juggling between being a good wife and a good Mommy and been struggling with the fact that I can't be in two places at the same time.   

Jim should be home in time for Christmas and then we head back out in Jan for another phase of treatment and hopefully, soon enough, we get a liver. 

I do pray for you and your husband.  I'm told that there is a very high rate of survival with these kinds of tumors if found early.  I'm holding on to that and hope that you can find some peace in knowing that.  I will keep my fingers crossed that your husband's has not spread.  I know this is scary for you.  I'm there too. 

Dianne

Re: My husband just diagnosed with cc

Dianne,

I sincerely hope your husband was home for Christmas.  My husband and I are in the ski business.  He manages ski areas on the West Coast.  We live near Seattle, and both work at Crystal Mountain Ski Area.  The holidays are a busy time for us with work and have always been an extremely important part of our family life.  John has two children from a previous marriage.   Thankfully, they are with their mom during this time.  My heart goes out to you in your struggle to be both a mommy and a wife.  We have decided to get rid of our one year old labrador retriever simply because I can't take care of the dog and my husband.  I can only imagine how it must be for you. 

John is 49 years old.  The surgeon, Dr. Rosen at Mayo, feels that a living donor would be the best bet for John.  To await a deceased donor would be another 9 months or so.  The surgeon thinks that would give the cancer time to spread.  Several of our family members and friends are being considered as a living donor candidate.  I pray that the team can find a suitable donor quickly before it spreads.

Will your husband be undergoing brachytherapy?  John went through that and it was not as bad as the chemo and radiation.  John had twice daily radiation for three weeks and an infusion of 5 F-U.  The first two weeks were not too bad, but the last week was really hard.  The hardest part came afterward, when we expected him to get better.  Instead, he got worse before he got better.  It took 4 weeks until he felt well enough to go to work.  Before that he didn't have enough energy to eat, and spent most of the time on the couch or in bed. 

The brachytheraphy was essentially just an ERCP with a stay in the hospital afterward.  I was only allowed to be in the room for one hour within the 24 hour period in which he had the internal radiation inside him.  For that treatment, there wouldn't be anything for you to do there, so you should stay home with the kids. 

I appreciate your spirit and hope.  I am trying to maintain hope for the future as well as live in the moment and find joy today.  Perhaps we will run in to eachother at Mayo sometime soon. 

God bless you,

Kim

Re: My husband just diagnosed with cc

Kim

I read the article about John in the Seattle Times last month and got a distinct feeling of "deja vu" from it.  I'm 49, too, have had PSC for years, and had friends and family members being evaluated as possible living donors for me last summer when a deceased donor liver became available in August.  I got the call at 2:00 a.m. and was told I had to get from Aspen (where I live) to Denver by six a.m. in order to receive the liver.  I made it with 15 minutes to spare.  I'm now four months' out from tx surgery and feeling great.  I sincerely hope that John gets his soon, too.

BTW, the ski conditions in Colorado are phenomenal so far this season.  I haven't gotten clearance to go downhill yet (probably will in January), but I have done some cross country skiing and it's been wonderful.  While getting chemo and radiation in July, I thought I might never get an opportunity to ski again.  Keep the faith, Kim, and my best wishes to John.

Gene

Re: My husband just diagnosed with cc

Gene,

Thank you for the encouraging words.  While we wait for the living donor process, John and I are able to work at the ski area.  We are in the midst of a great holiday season, with fresh snow every night.  I am on the ski patrol and have been doing avalanche control nearly every day.  Nothing like explosives and powder to keep your mind focused on the moment.

We can't wait to get on the other side of this ordeal, when every day John is getting stronger and healthier.

Sincerely,

Kim

Re: My husband just diagnosed with cc

Hi Kim - I'm going skiing at Baker tomorrow.  Ski conditions are incredible this year - and even though I'm sick and out of shape with cc, I'm going to take at least one run!  I think you have got to keep on doing the things you enjoy as much as you can.  The little things in life are so much sweeter now.

Re: My husband just diagnosed with cc

Lisa , you enjoy that skiing girl.  I never tried snow skiing but have done some boat sking.  I can imagine it's more free going and challenging.  I really get in to watching the ski competitions on television.  Do you do any of those high jumps or are you a zig -zagger (what ever that means Ha!
Bless Ya!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My husband just diagnosed with cc

Just wanted to let everyone know that there was an article in the Tacoma News Tribune today saying that Kim's husband received a liver transplant at the Mayo Clinic last week and that he's doing well and has already been discharged from the hospital.  Congratulations and best wishes, John!

http://blogs.thenewstribune.com/adventu … nic_after_

Re: My husband just diagnosed with cc

I will add my best wishes for a speedy recovery.

Thanksf for sharing the info!

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My husband just diagnosed with cc

Hi Kim,
Being the wife of a cholangio patient who also has been extremely healthy his whole life, and after been given-up last year May, I feel very close to you in your pain. And now how difficult it is to stand by and watch helplessly.
However, I also have good things to say. My Peter is a fighter, and in stead of the predicted 2-3 months to live, he is still with me a whole year later. Though there are some nasty fever attackes, he works again, sports again (squash and running) and since the outcome of his illness, we enjoy every good day and there have been lots, this year. Concerning appetite: to let Peter regain his 10 kilo's weight loss, I bought, cooked and baked everything he likes and gave it in small portions. But every two hours I had something: a soft boiled egg, 10 strawberries, a cheese tosti, a little plate with porridge, and so on. Through the weeks he started eating larger portions. Meat he doesnot like so much anymore, instead I make him fish, omelets, mushrooms.
I hope your husband will do as well and shock the doctors by staying so well, so long. If you are able to enjoy the quality time together, it will help cope with the uncertainty and I strongly believe it will give extra time.
I wish you and your husband strength and all the luck in the world.
Iris (the Netherlands)

Re: My husband just diagnosed with cc

Our best wishes for Kim and John!