My husband Kevin has cholangiocarcinoma he is 44.
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- This topic has 7 replies, 7 voices, and was last updated 13 years, 9 months ago by jim-wilde.
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March 17, 2011 at 11:43 pm #48975jim-wildeMember
Missie I really feel for your circumstances. CC for anyone is a terrible blow, but I can’t imagine what it’s like for a young family like yours.
You will need to act as Kevin’s medical advocate and help find the very best care available, which is almost solely at big city major cancer centers. You haven’t said where you are located, but people here are willing to share their experiences, good and bad, at many facilities. I’m assuming you’re in the USA. Major cancer centers:
http://www.cholangiocarcinoma.org/majorcancercenters.htm
Experiences some of us have had at various US facilities:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126I wish you the best and God bless you and your family at this most difficult time.
March 17, 2011 at 11:11 pm #48974jathy1125SpectatorRick.kamp- I think you said it all “surround yourself with people and Dr’s who believe that you can beat this thing” That is my story there was no discussing planB because he believed in plan A. There was always HOPE!!
Take a deep breath and start fighting-CathyMarch 17, 2011 at 9:53 pm #48973rick-kampMemberMy husband was diagnosed at the same time, he is 33. We have a 3 yr old and 16 month old. I also had to take over running our 2 businesses and our finances. I would much rather be a stay at home mom, but life more often than not doesn’t turn out the way we plan You can do it! Do you have a support system? If so RELY on them! It will be the only way to keep your sanity. Do not be afraid to ask for help and accept it when offered.
Also we go to Mayo clinic in Rochester, MN. I HIGHLY recommend them. We looked into treatment closer to home (MI) but the doctors here held out NO HOPE for us, while the Dr’s at Mayo are doing everything they can to extend and keep a high quality of life for my husband. Hope is a very important attitude to have and you need to surround yourself with people and Dr’s who believe that he can beat this thing.March 17, 2011 at 8:38 pm #48972cathy_aSpectatorYour husband is so young, I am sorry for you and your family. How is he feeling? When I found out that I had CC, I immediately changed my lifestyle. I ate only fruits/veggies/grains and I hired personal trainers and exercised daily. I had to get my body into a fighting machine, ready for whatever is coming towards me. My 2nd doctor told me that cancer does not kill, it is what it does to the rest of the body that you need to be careful for, so I started with me… at least it was something I can do while I wait. Now Lainy suggested go get a 2nd and even a 3rd opinion. I can not tell you how important that is. It has been 3 months and I have not been treated yet, as it was important to talk to many doctors as possible, gather the information, read everything I can and after this Tuesday, I will make my decisions. But I still feel fantastic. While I continue to feel good, I have been teaching my staff how to run my business if I go before my time. They have stepped up to the plate and I am so proud of them. Breathe, it will be ok and please visit this site often as this is the best support on the internet.
March 17, 2011 at 6:50 pm #48971lainySpectatorDear Missie, welcome to our wonderful family but so sorry you had to join us.
We know that this is the most devastating news you can receive and it does take time to wrap your head around it. You have every right to be angry
but as your husband will hopefully start some kind of treatment and game plans are put in to place the anger will subside. You have just been hit by a massive truck that has destroyed your world. We do understand, but know that you have come to the right place. Can you tell us some more about your husband’s prognosis? Where is the CC and has the doctor talked about any treatment? Where would your husband be treated? Please make sure your doctor has treated other CC patients, if not you may want to consider a 2nd even 3rd opinions. We are big on more opinions. Please let us know more about your husband. Looking forward to your posts.March 17, 2011 at 6:02 pm #48970marionsModeratorHello and welcome to our site. You have come to the right place. Our members understand your fear and concern therefore, be prepared for tons of support coming your way.
Additionally you might want to take a few minutes to listen to our Dr. Giles, who addresses the issue of first diagnoses.
Here is the link:http://www.cholangiocarcinoma.org/firststeps.htm
Additionally this link including the podcast may help you reduce your anxiety.
http://www.cholangiocarcinoma.org/firststeps.htm
As Cathy has mentioned please, share more with us. Possibly, we can help you navigate the medical path and of course the emotional path accompanying the diagnoses of cancer. We care.
All my best wishes,
MarionMarch 17, 2011 at 5:33 pm #48969jathy1125SpectatorHi Sooo sorry you had to find this site. I am glad to be one of the first to answer your post because I am a CC survivor!! There is hope. If you can tell a little more of your story, there is so many people that can help on this site. I am sure we all will want to know if you are comfortable and confident with your doctor and treatment.
I was treated by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I am alive because of a transplant.
I understand how overwelhmed you are, this site is great place to vent and learn. There is a lot of HOPE here for you.
Lots of prayers-Cathy (You can read my story on FB under Catherine Sims Dunnagan, scroll down to telegraph article)March 17, 2011 at 5:11 pm #4921missielwhotmail-comSpectatorHi,
I’m new to this. Kevin was diagnosed in August 2010. We have 6 kids and own 2 businesses. I have never taken care of them or the money. I am scared to death to be alone and the thought of him not being here for me and my kids makes me so mad. I lost my mom to cancer 13 yrs ago a week after I had my third child. I know what cancer does I watched it eat her and take her away from us. I don’t know if I can do it again. -
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