Topic: Through my husband, i join this very scary world of cholangiocarcinom

Five months ago we were sailing in the BVI's and three months ago my husband had chest pain, leading us down a path to stage four cholangiocarcinoma,  tumor on his liver and many many spots all over his lungs! 

How does this happen!  He just turned 61 last week.   We have to many plans for many years to come!  Because we have read all the stuff on this very agressive cancer, we are having a Celebration of Life party for him this weekend. 

I am so thrown off by all of this, my world feels like it is spinning out of control.  I need to know what to expect.  His belly is growing, he is having elimination problems, water retention. We have met with a doc from the local Hospice Program about care and gave good advice but dealing with this, seeing him SO uncomfortable I am looking for advice.

Re: Through my husband, i join this very scary world of cholangiocarcinom

Welcome Susan, to the club no one wants to belong to, but is happy to have found.  I much understand your total bewilderment and disbelief of the situation.  Susan, symptom control is available for you husband such as: pain medication, diuretics for water retention and, if your physician agrees (not all do) an abdominal tap (Paracentesis) can remove the fluid from the peritoneal space (the area between the belly wall and the spine, in the abdominal cavity. 
Susan, I wish that I had done what you are preparing for:  A Celebration of Life.  What a bittersweet affair,  powerful and yet the most meaningful of all.  Please, know that we are here for you to help guide you, support you, educate and “hug” you.  I am sure that our great members will chime in real soon and welcome you also.
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: Through my husband, i join this very scary world of cholangiocarcinom

I too would like to follow Marion in welcoming you to our special group.  I don't have much advice to add, but agree that I too wish I had been lucky enough to do what you are doing.  I think it is something that will always mean a lot to you.   

We are a very interesting group with a whole lot of knowledge when it comes to this disease and know there will always be someone to help and support you and your family along the way.

Take care and stay in touch.  Let us know how things are going.

Love & 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: Through my husband, i join this very scary world of cholangiocarcinom

Thank you, yes have tried all of the above without much sussess. Thinking there is a major obstruction.  Thinking of checking with the oncologist on Tuesday.

Yes bitter sweat party, but a chance to say goodby to friends while he still feels.....fair and looks good.  Just wish I knew what to do for him!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan,

Just be with him, love him and share things.  Make memories that will help you through all of this.  I only wish I had been given the time to do all of that.   Just do the best that you can.  That's all anyone can do.  Your bitter sweet get together will mean more than you know to all involved.

Love & 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: Through my husband, i join this very scary world of cholangiocarcinom

What are your two situations?  I assume you both lost you hsbands to this very wild cancer?  How fast?

Re: Through my husband, i join this very scary world of cholangiocarcinom

Dear Susan, welcome to our extraordinary family but sorry you had to join us. I was lucky to have Teddy for 5 1/2 years after diagnosis he passed 1 1/2 years ago at 78 years old. For those 5 years he called it our Honeymoon. You are doing all the right things, just being there and shoing him how much he is loved and that you will be OK is the very best you can do. I would have a talk with the ONC about the symptoms he is having. Hospice can be called in up to a year ahead of time and having them in does not mean the end. They will make him more comfortable and your time will free up a little more to just spend it with him. I am curious as to where he has been treated and is he under the treatment now of an ONC? My Teddy's biggest concern was me and that I would be OK so the best advise for you I can give is to be very strong! Keep letting him know you will be OK. You never know how strong you are until "strong" is the only choice you have!
P.S.ospice has a booklet that has an excellent section on what to expect, please ask them for one. I know Teddy followed it pretty closely. Big hugs coming your way and know that we are all here for you.

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: Through my husband, i join this very scary world of cholangiocarcinom

We have two boys ( my step sons -grown), we took family photos this weekend.  at his Celebtation of Life party this weekend (you can come) I hired a vidotographer to interviw friends, family and coworkers so our future gandchildren can met grandpa!  He will also interview Peter ( husband) what are you proud of, what do you wish you had done, etc. 

His "wake" while he is still here!  I can't believe I am talking like that -like he will be gone soon but that is what I read!  true - short from a miracle

Re: Through my husband, i join this very scary world of cholangiocarcinom

Laing, thank you for your kind words. Wow 5 plus years. All I read is usually 10 months. Can I ask at what stage he was at and where it manifesteded itself?  I would love to think of having that time!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Sorry you had to find us.
This cancer knows no age. I'm 30 with two small children, and fighting stage 4 cc also.
Hang in there for you husband, it is a long crazy ride.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Through my husband, i join this very scary world of cholangiocarcinom

Oh Tiffany stage four also with young children. You are a few months a head of us. Is the father in the picture. I can't imaging how down my husband is to also be a primary care giver to young children!  I only hope you have a good support system there!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan, Teddy itched and Jaundiced when we were visiting our kids out of town. Our 2 week trip turned in to almost 3 months. Teddy's CC was contained in the bile duct valve that connects the bile ducts to  the Pancreas. He had an aborted Whipple then 3 weeks later had the Whipple again and had successful margins. We were told by 5 ONCS and Radiologists that Chemo would not work for where his CC was located. Everything went along fine for 3 years and then the CC returned where his Duodenum used to be. We opted for CYber Knife (a miracle) but they had to use Radiation first to shrink the tumor to under 7 cm. It worked and we had bought another 2 years. The CC then returned to the same place again. It never went to his liver. They suggested palliative chemo but Teddy asked the ONC how much more time it would buy and when the ONC said maybe a month Teddy opted for quality over quantity if one can call a month quantity. When first diagnosed he was Stage II. We do have a member on here that we met and Bob is in his 15th year! Susan, it was a 2nd marriage of 17 years and the true love of my life. He has yet to really leave me, I believe he is all around me. I may have missed it but where are you all from?

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: Through my husband, i join this very scary world of cholangiocarcinom

Lainey, We are from Muskegon MI.  I guess that since we found Peters at stage four that we do not have the options you two did.  Not sure what a Whipple is ...so new to this stuff.
Planned on sailing to Chicago this summer to see our youngest son, not sure if that will work out.  I am the executive director of a small mon profit but will be able to take some time off.  Just am so lost in the trees!

Re: Through my husband, i join this very scary world of cholangiocarcinom

We are originally from Milwaukee. I know what you mean about lost in the trees. You feel as though you have been slugged in the stomach with a baseball bat. Have you thought of getting another opinion? We are strong believers in 2nd and 3rd opinions. Once a diagnosis is made and a regime of some treatment begins the fright turns to fight. Sadly it doesn't sound like these Docs have a plan. Peter really needs to be seen at a major Cancer Center. We HAVE had Stage IV members who after being seen by another ONC/Cancer Center  are doing pretty good. Do not live now as if Peter is leaving, make your plans as they can always be canceled. Think about seeing someone in Chicago at a major Cancer Center. You do need to act quickly if you plan on seeing someone else.

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.

15 (edited by Darla Tue, 29 May 2012 04:50:54)

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan,

My husband passed away less than 2 months from his first symptoms and ER visit. Until then he appeared to be a very active, strong, healthy person.  Hardly ever even sick.   He was 62 and we had been together for almost 45 years.  I met him when I was 15.   Together pretty much 24/7. Because he deteriorated so quickly there was no time for anything.  He wasn't even positively diagnoised with CC until 2 weeks before he passed.  He never was able to build up enough strength for any sort of treatment options.  The day he died I had been planning to take him home and was in the process of setting up home hospice.  His was a very aggressive interhepatic cholangiocarcioma.  Also at stage 4 when diagnoised.  It has been almost 4 years and in that time I have seen a lot of progress and changes in diagnosing and treating this disease.  It is very unpredictable and therefore no one can say what or when things will occur.  Everyone is different.    We never had a chance to do the things you are doing and I am so glad that although you are in a bad situation you are doing the best you can and making those memories.  I'm sure it seems surreal to you, but I am happy you are able to do these things.

I also have 2 sons, in their 40's.  I'm in Plymouth, WI.  Not that far from you.  smile

I will be thinking of you this weekend as you celebrate Peter's life.  I am also hoping you will be making that trip to Chicago.   As Lainy mentioned, you may want to try to get another opinion ASAP.   

My best suggestion is to take things as they come.  Live for today and take it one day at a time.  Otherwise it will overwhelm you.

Take care.
Love & 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: Through my husband, i join this very scary world of cholangiocarcinom

Hi Susan, sorry to hear about your husband, as you can see CC hits different people in different ways. My husband was diagnosed in January, he just turned 28 years old in March. We have two children ages 2 & almost 4. We have seen a few different doctors, we are in easturn Canada where not many doctors know much about CC so we opted to travel to Milwaukee to see a wonderful doctor that is from here. Unfortunatly because we were put on hold for a couple months here with doctors trying to figure out what to do, the cancer has now spread through his abdomen. We are doing chemo and he seems to be feeling better. he, like your husband, seemed to retain water and his pants were getting tight...... I don't think the chemo is helping this but other problems that he had, like a sore shoulder, sore back and "upset stomach" feeling have almost gone. He goes for chemo every other week and for a whole week after chemo he feels aweful, but we live for those good weeks where we do as much family stuff as possible. This is our good week and he is taking our kids camping on a "no moms allowed" camping trip with a bunch of dads and kids from our church. This also gives me a chance to go for a spa weekend with my girlfriends..... all of this CC stuff can really mess with a person's head and a little break from "cancer life" is much needed! My husband is battling a bit of depression at the moment too, the more people treat him like he is dieing the more he gets depressed, so live life to the fullest, but not like it's your last day either! I hope you are pleasently surprised with a lot longer than doctors have given you! Good luck and have a great weekend smile

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan,

Hi and welcome to this site. My daughter, Lauren , age 26 is the one with CC. I wanted to know where your husband sees his oncologist. We live in Ohio and travel 3 1/2 hours to University of Michigan Hospital. It is a major Cancer Center and I didn't know if you knew about it or if you went there. I didn't see anything in your posts. I would be more than happy to tell you about it if you are interested. The doctors and nurses are awesome and they have been able to help Lauren a lot. I wish you and Peter a miracle and many more happy times together.

Love, -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.

Re: Through my husband, i join this very scary world of cholangiocarcinom

Hi Susan,

I am so sorry to hear about your husband. I read on here almost every day, but do not post much... however, I did want to mention that my sister had an obstruction and that is actually what caused her to lose her battle, because by the time they found out she had it, she wasn't strong enough to go through the surgery... so if your husband does have an obstruction and is strong enough, maybe this is something you want to look into or mention to his doctors and/or surgeons...

Good luck!

Karen B

Re: Through my husband, i join this very scary world of cholangiocarcinom

Hi Susan,

I am so sorry to hear about your husband. I read on here almost every day, but do not post much... however, I did want to mention that my sister had an obstruction and that is actually what caused her to lose her battle, because by the time they found out she had it, she wasn't strong enough to go through the surgery... so if your husband does have an obstruction and is strong enough, maybe this is something you want to look into or mention to his doctors and/or surgeons...

Good luck!

Karen B

Re: Through my husband, i join this very scary world of cholangiocarcinom

Thank you all, it is amazing the number of people on this site!  In regard to a second option yes we went to U of M and what they said is because it is stage  4 and the tumor on his liver and spots all over his lung he will get the same treatment in Muskegon Michigan or Mayo, or John Hopkins, or.......so. 

Pam, I am so sorry to hear about your family at such a young age!  I can't imagine with young children!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Nothing like this kind of news to "take your breath away" in the bad sort of way. The bad way is to land on your tailbone and get the wind knocked out of you or the proverbial "getting hit in the stomach with a baseball bat (cricket bat, for those in the UK). My heart strings are pulling tight for you and your husband.

Susan, find out all you can and never "settle". The fight has begun, so give it all you've got.

God bless you both and hang in there.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susancloutier wrote:

Oh Tiffany stage four also with young children. You are a few months a head of us. Is the father in the picture. I can't imaging how down my husband is to also be a primary care giver to young children!  I only hope you have a good support system there!

Yes he is! He is an amazing man, and I proud to call him my husband:)
It is hard on him. I was doing gall the cooking, cleaning, and taking care of the kids while he worked full time.
Now he works full time still, and picks up my slack. Plus I have an amazing family to follow me every step of the way. I'm doing good I must say!
Tell your husband to hang in there!!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan,
I hear and understand your pain.  My husband was just diagnosed Mar 24 2012 with few symptoms leading up to the diagnosis.  Knocks the breath out of you.  This has been a roller coaster ride.  The one thing I consistently hear is this disease varies from person to person.  All I can say is love him, get all the information you can, use what helps you, and throw all the rest out the window.  You have to have a good strong medical team committed to you.  We have that and it means alot.  You fight all the battles with meds that work, meds that don't, procedures maybe or yes or no, insurance issues with auth for this or no it is too soon for refills on nausea meds, etc, etc, etc.  I have been so vocal on this site with lots of anger!!  It is ok, this is a safe place to be.  What I have been able to come to terms with is the fact that this disease varies from one person to the next and some of us go through the same stuff, but many of us don't.  That was hard for me especially seeing positive posts about do this or try this it woks.  Like I said, read it all, use what you can, and don't give up hope.  I am praying for you and your family.  We are stronger than we think.
Prayers and kind thoughts coming your way,
Wilma

Re: Through my husband, i join this very scary world of cholangiocarcinom

Wilma, how is it going for you and your husband?  We have stopped chem -more tumors appeared on his liver. Met with Hospice yesterday. He is doing ok in fact on our sailboat haing breakfast. He is tired a lot however.  His Celebration of Life Party that we had for him was wonderful. Aver 140 people came out to support him. It was not a benefit just a party!  Wonderful friends and he felt really loved. Like you said what a roller coaster!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Dear Susan, I am sorry to hear about your latest news but I admire your attitudes. That is what we did as life is for the living and making good memories to last forever. Hospice is a great plan and they will support you both all the way on this journey. Tired goes with the territory and sadly, CC is still unchartered waters. So happy that the Party was so successful. That was a wonderful idea. Enjoy the boat, live life to the fullest that he can, love more everyday and you will never regret it. We used to call it our "honeymoon". Best wishes to you both and please keep us posted.

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.