Topic: Husband Diagnosed in Early March with this...

Hi there.... My name is Dorien (Door * E * N).  My husband was diagnosed with this cancer (stage IV) in early March.   (spread to lungs--possible lymph nodes--but PET scan was not 100% clear on lymph node spread)  He has never been sick a day in life--quite literally--and went from thinking he had bronchitis or some crazy flu (he had a cough, fever, night sweats and weight loss for most of Feb.) to stage IV cancer in a few days time. After A LOT of freaking out by me (because he never gets sick) ...we went from a physical to a CT scan to a liver biopsy in the space of 48 hours.

He has lots of tumors in his liver and he is not a candidate for surgery or anything really other than chemo (Gem/Cisplat.) combo to help improve quality of life/prolong his life.

We have 4 kids ages 9 to 19 and this has been quite the blow.

We are now 3 rounds into chemo w/o (really) any other side effects other than fatigue and my husband feels better than he has in a few months.

Mostly looking for a little support.... and to hear others stories.

We've had two opinions (we live in SLC with the Huntsman Cancer Institute) and BOTH Dr's there and at IMC have been really great.

They say they've both seen "better odds" in healthy younger people--but insist that Kyle will make his "own numbers".

I've started a blog I will post in the blog section if anyone wants to follow along.

That's it for now.  We keep plugging along.  Some days are very hard and some days are actually good.

I also have to say that he is still working and living a pretty normal life and will choose that until he can't.  He's a fighter and sees no reason to sit around "waiting to die" when he can live life for as long as he can!

Re: Husband Diagnosed in Early March with this...

Dear Dorien, welcome to our extraordinary family, you have found the best place to be. First I want to say what a beautiful Blog you have started and what a gorgeous couple you are. Then I want you to know we do have Miracles around here. We have had some Stage IV, no surgery patients and after a few courses of Gem/CIS chemo-sabi (love that one on your Blog) the Stage IV became operable! We are huge believers in 2nd and 3rd opinions and have many success stories because not all eyes see the same things and all minds work differently. Please think about it. You can even Fax Kyle's records and tests to another ONC and they will usually come back with a reply. Kyle has a great attitude and that will certinly help in dealing with this crazy CC. If you can, try to read up as much as you can as knowledge is our most powerful tool for fighting CC.  Also make sure that where ever you go for treatment that they have treated quite a few CC patients. Please keep us updated on Kyle's progress. I love his name as I have a Grandson named Kyle.

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: Husband Diagnosed in Early March with this...

Welcome to the site and sorry you had to find us.  Please keep up us posted on how your husband does with chemo. Glad to hear he doesn't have many side effects.

Take care,

Susie

Re: Husband Diagnosed in Early March with this...

Dear Dorien, Welcome and sorry you had to find us. I am a CC survivor with an amazing story to share. I am almost 4 years cancer free due to 2 liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman. Please read my story at www.catherinedunnagan.com it is full of HOPE. I realize not everyone can quailfy for a transplant but I share my story because I can honor my donors and hopefully show there is HOPE when the odds are against you. Miracles due happen!
Lots of prayers and HOPE-Cathy

Re: Husband Diagnosed in Early March with this...

thanks for your comments.

we have had 2 opinions-- 2 drs, 2 diff hospitals.

they both recommended the exact same course of treatment.

we have heard (and read) that once it's spread a transplant is never
an option since the cancer has already spread from the original spot.

is this not the case??

we have entertained the thought of sending records out of state but not
exactly sure how to do that...

anyone have a good recommendation?

Re: Husband Diagnosed in Early March with this...

Dorien...correct, transplant is not possible at this point. You may consult with the University of Utah transplant team.  http://healthcare.utah.edu/transplant/liver/
Also, you might want to consult with a radiation oncologist. 
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: Husband Diagnosed in Early March with this...

Transplants are not the answer for ICC. The protocols are very strict and very clear and almost nobody with cholangiocarcinoma can qualify. It has to be small and hilar, I think. Besides, if you really research it, the anti-rejection drugs required after transplant often lead the cholangio to turn up elsewhere in the body, where the body's own defenses had been fighting it before. I have been told this by both Dr. Kato and Dr. Facciutto, top CC surgeons and liver transplant surgeons in NYC. So it is a false hope for almost all of us to go chasing the dream of a transplant, at least for now.

On the other hand, a good response to chemo and you may qualify for liver resection surgery. It has happened many times, and this can greatly prolong your time and health over chemo alone. And even chemo, if well-tolerated, can buy a ton of time. We are all different, and as Lainy always says, we do not have an expiration date stamped on our feet! Good overall health is a tremendous asset in this fight.

Re: Husband Diagnosed in Early March with this...

Thanks holly22a

we agree and BOTH our oncologists said to my husband "Kyle you will make YOUR OWN NUMBERS!!!  forget about all the statistics we gave you!"


we loved hearing that twice!

Re: Husband Diagnosed in Early March with this...

Hi Dorien!  Welcome to this amazing site.  I am so sorry you had to find us, however.  My husband was diagnosed in January this year.  He went to his family doc with a chronic cough which resulted in an x-ray (nothing) then an MRI to rule out a blood clot (nothing in the lungs) and an enlarged lymph node was found in his abdomen.  That was the week of Thanksgiving and started test after test, biopsy after biopsy.  Finally, in January, we got the devastating diagnosis of CC.  Ken is 58 and all our children are mostly grown (our last is finishing her junion year of college) but it has nevertheless been frightening.  I have never worked full time since the children were born so thinking about medical insurance for myself and a way to simply survive alone has been overwhelming.  Ken has stage IV so he is not a candidate for surgery so we are counting on the chemo (gem and carboplatin) to do everything possible.  After his first scan since starting chemo, the onc said "he is trending in the right direction."  Ken was hoping she would say, "We can't find any evidence of the cancer!"  I'm sure everyone with this awful disease has hoped for that.  But I have decided to do what everyone on this site recommends...live each day to the fullest, stay positive, hope for the best and laugh often.  I still cry almost every day but for the most part I try not to dwell on all the unknowns.  They can literally make me crazy.  What I know is I have 4 amazing kids and 3 amazing in-law kids who are there for both of us which makes this a little easier to  deal with.

My prayer for your husband is that the chemo will work with amazing results and at some point your husband will become a candidate for surgery.  And for you that your family will draw close and celebrate every day you have had as well as wonderful days to come.  God bless you!

Jayne

Re: Husband Diagnosed in Early March with this...

Holly....Although rare, we have seen successful transplants on this site.  The majority of patients however; are PSC related.
All in all, I believe that transplantion for CC should not be ruled out:
http://onlinelibrary.wiley.com/doi/10.1 … DA0.d03t03
also, you would want to read Helen's posting:
http://www.cholangiocarcinoma.org/punbb … 1776292245
and
http://link.springer.com/article/10.100 … 012-1007-8
and
http://www.cholangiocarcinoma.org/punbb … hp?id=4993
and
http://www.mayoclinic.org/news2010-sct/6081.html

Also, our Cathy has been a survivor of transplantion for several years now.
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: Husband Diagnosed in Early March with this...

Thanks Jayne

Yes life will change a lot at some point in the future--i too have been a stay at home mom for many yrs.

those same thoughts of work, medical insurance, being a single mom (our youngest will be 10 in two weeks) are OVERWHELMING to me..

along with EVERYTHING else.

trying to take a day at a time...but i cry often when i think about our future.

i just know cancer TOTALLY sucks (esp. THIS cancer!!!)--

trying to find the joy in each moment and each day--some days are
easier than others!

Thanks for your kind words though!
dorien

Re: Husband Diagnosed in Early March with this...

Welcome,
I am a stage IV survivor of 2.5 years. I have had two liver resections, many types of chemo and several rounds of steriotactic radiation. The steriotactic radiation has been successful in killing four tumors. If you would like to talk I can be reached at 330-903-6868.
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

Re: Husband Diagnosed in Early March with this...

WOW lisa! that's incredible!

Re: Husband Diagnosed in Early March with this...

Dorien,
This is my first post and I am sorry both you and your husband have to travel this path.  My wife was first diagnosed on Feb. 13, 2013.  Her Tumor was 15.9 cm x 9 x 8.  She started Cisplatin/Gemzar and her tumor is now 6.9 x 5.9 x 5.4.  She is a fighter and this seems like good news.  At one of her last sessions, she met Kevin who had a large tumor on 11/11/11 and started Cis/Gem.  He is going in for surgery today.  His tumor started out the size of a grapefruit and the Chemo cut it in half also.  As resection or transplant seem to be the only chance of extending life past 2 years, I am hoping his surgery goes well and my wife's tumor continues to shrink.  Hang in there and lets hope your husband's treatment can also beat up the tumor!

Re: Husband Diagnosed in Early March with this...

hey thanks Treysam!

looks like we are both utah folks as well!!

do you mind me asking where she's doing treatment?

are you staying south or do you come up to SLC for treatments?

Re: Husband Diagnosed in Early March with this...

Hello, Treysam and a warm welcome to our extraordinary family but sorry you had to join us. WOW! It sounds like GEM/CIS is your wifes best friend. That is a great shrinkage and you will read here on many posts that shrinkage is one of our favorite words. Is she handling the side effects well? We do not listen to many stastistics as everyone's CC seems to have a mind of it's own. My husband never had Chemo and he survived  5 years. We have a gentleman on Board who is in his 14th or 15th year. Others at 10 years. Remember we are not  stamped with expiration dates. You have come to the best place for CC as we offer hope, care and the finest people from all over the World. Be strong and welcome to your wife also and give her our best.

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: Husband Diagnosed in Early March with this...

Treysam....a quick hello from me to you also;  wishing the absolute best for Kevin today and continued shrinkage of your wife's tumor.
I hope you don't mind us butting in on your conversation with thebompie4 and for her to be able to read your posting. If we accidentally have caused a disruption please accept my apologies.  In that case, you may want to repost your message to her.
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: Husband Diagnosed in Early March with this...

Hi Treysam,

Welcome to the site. Sorry you had to find us all but glad that you have joined us. You're in the right place for support and help here. Thanks for sharing with us and that is great news about your wife's shrinkage of her tumour. My fingers are crossed for that to continue! Hope to hear more from you on here as well and please let us know how everything goes.

My best wishes to you and your wife,

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: Husband Diagnosed in Early March with this...

Thank everyone for your kind words.  It is an interesting phenomenom to write on these boards.  I thought I was past being emotional.  It is so sad that people are having to deal with cancer.  Not just the people with cancer but their spouses and family, friends etc.  We need to be supportive of our spouse while handling a million questions of "how is your wife doing?" and "my cousin's friend's uncle ate this star fruit from madagascar and it cured him so...."  It is good to have a release from people that really understand what is going on.  Insurance, schedule, pain management, trying to say the right thing, all while finding the right balance of access for my wife that was the nurse for an OB/GYN for 28 years (70x3x52x28), 12 siblings on her side and 9 on mine, not to mention 200 church members has been a challenge.  It was good and tough to here from Dorien here in Utah.  I will try and be as positive as possible as I post, as this is a real factor in a cure!
Best wishes to all!

Re: Husband Diagnosed in Early March with this...

Treysam:  with such a large family plus church family number of phone calls is tiring.  There are sites available for free to get email system in place where you write the newest info and automatically set to all your list.  Idea to save you time and energy.

Gregg

Re: Husband Diagnosed in Early March with this...

Hi Treysam,

We so know what you mean with regards to what you say about my cousin tried X,Y or Z stuff! And also with trying to keep so many people informed of what is going on with your wife. It can get very tough trying to do that and also take up a lot of yours and your wife's time. If I may suggest, how would you feel about writing in a blog? Many of our members do that and find that it helps them in many ways, and also, it can be a good way of keeping a lot of people informed at the same time. You could just tell them all to read yours or your wife's blog if they want to know stuff! Here is a link to our blog page if that idea interests you -

http://www.cholangiocarcinoma.org/punbb … .php?id=31

And as far as all of us really understanding what is going on, yep, we sure do and that certainly helped me when my dad was sick too! Keep coming back here and I am sure that it will help you too.

Best wishes,

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: Husband Diagnosed in Early March with this...

Hey Sam

i started a blog ...which helps to keep everyone up to date.

and it is very helpful to me (in writing this experience down)
as great release (i also love to write as well--so there's that).

i listed it in the blog section of this board.

and those "magic cures?"....they're my favorite.

I always think to myself "so doctors are keeping all the REAL cures
for cancer under wraps JUST SO all these people can keep dying
from it?"  (seriously?!?!?)

it blows my mind.

best wishes for you and yours!