Topic: My Husband My Hero

Hello from the Space Coast of Florida,
My husband who is my hero..... My husband, age 47 was over weight, diabetic and had high blood pressure. While participating in a corporate 5K a little over two years ago with his co-workers he wobbled over  the finish line an hour later. Determined to participate the next year, but in shape he began his journey to change his lifestyle. And did her ever!
With hard work, eating healthy, exercising and running  he had lost over 120 pounds.  All signs of his diabetes, high blood pressure were gone. He was taken off all medications by his doctors.
Participating in 5K races, workouts were now part of his life. He trained and successfully completed a Tough Mudder Race which is one the most challenging fitness competitions out there.
Wanting to share his love for fitness he became a Certified Personal Trainer. Looking good, feeling good nothing was going to stop him.
Until......five weeks ago, suffering from some chest pain and mild stomach pain I insisted I take him to our local ER. One hour later, the doctor comes in and said they had determined his heart was fine but they located a 10 cm mass on his liver. Our lives changed that very moment! Our nightmare began.
Admitted to the hospital, a biopsy was performed. When that doctor with the white coat came in the room and I saw the word Oncologist embroided on his coat.... my heart sank.
Then that word, Cholangiocarcinoma......became part of our lives.
We were referred to the Lee Moffitt Cancer Center in Tampa for a consult. Once there he was admitted because  he was going into liver failure as his bilirubin was at 30. After four blood transfusions, an external biliary drain was placed in him allowing drainage. Doctors determine that resection, liver transplant, and internal stent are not options at this time.
He has begun Chemotherapy in hopes that the tumor shrinks enough that they can get an internal stent in place. If that is done, he will have more options for treatment.
I have noticed additional symptoms arising almost daily in this past five weeks. He's declining in front of my eyes.
Boy.... this damn Cancer is horrible. It has changed our lives in so many ways.... I cannot believe this man can run a 5K on a Sunday and be so ill with this cancer by Wednesday with really no symptoms before that day. Our community has rallied around us. Benefits are being planned, A 5K is in the works, and the local Newspaper is going to do an article on him. I want people to be made aware of this terrible cancer called Cholangiocarcinoma!

Re: My Husband My Hero

Dear Gramos and her Hero, welcome to the best place to be for CC support. WOW! What a roller coaster ride you have already had. Most of us don't understand this monster CC so your feelings are sadly normal. BUT with that said I am so glad you found us.  I know you both feel as if you have been slugged in the stomach with a baseball bat but I promise once a treatment  starts your fright will turn to fight. Attitude, its all about attitude. We have quite a few family members here who were DX much like your Hero and ended up having surgery, our favorite word. So don't despair as we try to remain optimistically realistic. You are not alone, we are all here for you and please keep us updated on Hubby's progress..

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: My Husband My Hero

Dear Gramos and Hero -
Welcome to our little family. So sorry you had to join us and you are so right this cancer is horrible and upsets your life so badly. It has been referred to as a roller coaster and that's probably the best description.....and it's one you don't want to be on.
I would suggest that you get a second opinion if you haven't already. Since this is such a rare cancer you have to have a doc who has treated many cases of it. The other thing with second opinions is that one doc may be willing to do something that another is not. They all have different ideas.
I wish you strength as this goes on for both of you. And remember we are always here.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My Husband My Hero

gramos.........this cancer takes on a silent posture until it blocks the bile ducts causing symptoms as the ones you describe.  So sorry to hear that you too had to experience this as well.  The drainage of the bilirubin should allow your husband to feel better soon.  He physical training has prepared him well to take on this race.    Therefore, stay strong and hopeful, and focus on him winning this race as well.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Husband My Hero

Dear Gramos,

I am so sorry for what you and your  husband are dealing with.  Know that you have found the best place to be for help & support.  This disease just sneaks up on you , grabs hold and doesn't let go.   Glad you have found us and welcome to the club no one wants to belong to but are so grateful to have found.   Let us know how things are going and know that we are all here for the two of you.

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband My Hero

Gramps,
So sorry you have had to find us. But this is the best place to find answers, as we are all connected as either patients or caregivers from around the world. There is an abundance of knowledge, experiences, and support here. Please consider a second opinion, as there are a limited number of experienced centers around the states. And please don't hesitate to ask anything here! I'm sure you will get feedback from everyone who can help you.
Good luck. I hope the chemo treatment your Hero is receiving gives some relief quickly.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My Husband My Hero

Hi Gramos,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband as well, but glad that you've joined us all as you're in the best place for support and help here and you will get loads of both from everyone. Sadly what you describe about how your husband was diagnosed with this cancer is all too common and far too many people have had that happen to them, my dad included. His CC showed no symptoms at all until the jaundice started to show with the bile duct getting blocked then once diagnosed we were told his CC was inoperable.

On hearing my dads diagnosis I too felt much the same as you did and it felt like getting hit in the head with a bat. To say that it all came as a shock would be the biggest understatement ever. But please do not give up hope here. From what you say it sounds like you are getting geared up for the fight and a positive attitude will help so much here. I agree that 2nd or 3rd opinions are a good idea and I hope that that is something that you will consider.

Please keep coming back here as well and let us know how everything goes. If we can help then we will so please just ask and we'll do what we can. We are all here for you and we care.

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.

8 (edited by lulu07 Sat, 21 Jun 2014 05:04:56)

Re: My Husband My Hero

Gramos.....So glad you posted on this website...it literally saved my life...deemed inoperable by a very reputable NYC hospital almost 5 years ago...I sought out a 2nd opinion and low and behold had not 1 but 2 resections! by Dr. Myron Schwartz at Mt. Sinai. (my hero) Had just a little bump March 2013 where I had a laparoscopy and the CC had traveled to my ovary so that and the fallopian tube were removed.  I had a clear PET scan in January 2014 and a clear CT in May...I do receive chemotherapy once every 3 weeks I consider it maintenance...just not comfortable not doing anything.....My oncologists are Dr. Howard Bruckner and Dr. Azriel Hirschfeld....Bronx NY...they do things a little different and I've at least had great success with their treatments.  They do work with several oncologists in FL although they are on the west coast and of course I can't find their  name and number right now! So I will leave you with Dr. Bruckners # and if you were interested Jackie at the front desk would be more than happy to give you their # Dr. Bruckners # is 718-732-4050...Lots of smart cookies on this website so I know you will be getting lots of good suggestions....That your husband was is good health prior to his diagnosis is a really good thing....keep fighting, keep hoping, things are changing all the time! Keeping you and your husband in my thoughts and prayers!
Nancy

Re: My Husband My Hero

Gramos,
When I was diagnosed I wasn't given many options until I was referred to a multidisciplinary team at The Cleveland Clinic Foundation. I have had two resections. Please consider a second opinion at a medical facility that has experience with CC and also a team of doctors so that all treatment options and clinical trials are reviewed. I'm sorry you had to find us but also thankful since this is such an amazing group of people.
Hugs
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider