Topic: Intro & looking for the facts of cholangiocarcinoma

My husband was diagnosed end of December with cholangiocarcinoma, intrahepatic, stage IVB. It took them 2 months to figure it out. They give him the standard median of 12 mos and palliative chemo of Cisplatin and Gemcitabine. We are on day 17 of cycle 1. We have one more cycle before another CT scan. He throws up bile after huge coughing fits. The mets are in his lymph nodes, lungs, and pelvis bone (which was fractured from the tumor). Believe it or not, no side effects from the chemo. Anyhow...

So I'm looking for second opinions and what to expect kind of stuff. I am a pragmatic person. I need the cold facts. My husband is positive and hoping for the miracle. Which I am too, however, I am a stay at home mom with 2 kids under 4. So, I have to plan every which way. Everyone we know is praying for him and our family. We are being blessed in so many ways, I can't begin to list them. SO I don't want you to think I am ungrateful for not having a miracle as of yet. We have had many. Just not the one that everyone is hoping for. But the immediate needs are being met so we can't complain.

My biggest concern is watching my husband suffer through this. He is a soft, gentle man, who doesn't like pain and discomfort, who doesn't right? But he still cries over pulling of band-aids. I almost can't handle it. My second biggest concern is that I am not going to be patient enough for him. I have taught my kids to brush things off and keep going, as long as things are still attached to their bodies. I am a type 1 diabetic and so i have no sympathy for needles.

I am a survivor of a father who had myelodysplasia, brother who had renal cell carcinoma, aunt who had lung cancer (none smoking), uncle who has glioblastoma, father-in-law who has squamous cell carcinoma of the mouth, cousin who had colon cancer, another cousin who has leukemia and he had a daughter just pass with leukemia last year. My reason for listing this is to show that I am not unaware of the prognosis' and how things work in oncology. I do take the doctors to heart and listen to their expertise, however, I just want to make sure that there isn't anything else we can do to prolong - in comfort and humane way - his life. I know liver diseases are awful awful awful.

I love my husband dearly! We have only been married for 7 years. We aren't the death fearing type, we believe in forever families.

If there is anything I am missing or might need to know, please let me know!

Thanks,
Kathy

2 (edited by PCL1029 Fri, 24 Jan 2014 20:47:05)

Re: Intro & looking for the facts of cholangiocarcinoma

Hi, Kathy,

I appreciate you reach out and want to know about facts of this disease. Of course a lot of our members will give you emotional support as well.
I approach my intrahepatic CCA as pragmatic and sciencitific as possible; like your husband, I am stage IV too. And have survived for the past 57 months relatively free of side effects. Like you, I pray for miracles to happen, but I do not think it will be happened during my life time. Research takes a long time for everything. The relatively good news is that there were a couple highly respected researchers and oncologists during one of the conference that I went to thought that ,in a couple years there will be some or more immunotherapy agents approved by FDA and in "off the label" use ,it may be beneficial to our disease.
Each case of intrahepatic CCa is unique and different due to the stage and location of the tumors,the environmental and hereditary risk factors; and cholangiocarcinoma is a rare disease , therefore it is difficult to find someone's disease presentation exactly like yours or mine; but knowledge is helpful in understanding  this disease and will provide you  guidance to discern ideas and opinions from those who said they know them all from his/her own research  without accepting his/her own responsibility in the  treatment decision making process later.
Let's wait till the result of the CT scan to see whether the GEM/CIS combination will shrink the tumor to what degree.


Blessings.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Intro & looking for the facts of cholangiocarcinoma

Dearest Kathy, welcome to our family, I am so sorry to hear what is happening to your husband. You certainly have seen enough and been through enough in your life! I think you are a little unsure how we would take your letter and I LOVED it. You are a lot like me. Don't know if that is bad or good. I am very happy he is taking to the chemo so well but I am very concerned about the coughing and bile coming up. Is the ONC aware of this? Is your husband on pain Meds? I think we may be too early for this but since you mentioned  the need to know what to expect, I do have a list of signs that the end is near. Only if you want it! I can email it to you right from this forum.
You have come to the right place here and I am sure others will join in soon.

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: Intro & looking for the facts of cholangiocarcinoma

Kathy -

Welcome to the family....not that you really want to belong and we understand that completely. As Percy has pointed out this can be treated more like a disease and there are several here who have lived a long time with it. I always take doctor's prognosis that we have so and so many months or years to survive, we are not born with an expiration date.

What I did when my husband was diagnosed was read everything I possibly could. I quickly hooked up here and started doing searches on anything you want to know.....I had to look up things like night sweats, percutaneous drains and all kinds of treatment.

I am a nurse so I understand about the patience and the just brushing things off. My theory was if there was no blood or bone sticking out then get up and move on. I was sure I would not be able to do it. Most of the time I do fine but there are days when I just melt down. Those are the days you just put one foot in front of the other and keep moving forward. You need to make sure that you still take time to take care of yourself....get away for a few hours and do something that is totally for you.

Hang in there and keep us posted on how things are going. And remember we are always here if you need to vent.

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.

5 (edited by thebompie4 Fri, 24 Jan 2014 17:38:11)

Re: Intro & looking for the facts of cholangiocarcinoma

Kathy

we are in SLC as well.   My husband is Stage 4 w/mets to lungs and lymphs.
we've been fighting this since March of 2012 (so are approaching the 1 yr
mark soon)

He's responded well so far to chemo and had Y90 in November.

Last PET showed some new growth and after a 2 1//2 month break
we're headed back to chemo next week (i say "we" since cancer
is a "we" thing).

Anyway, if you want to contact us at all to talk Dr's or anything
PLEASE feel free to email me:  dorienn@excite.com

My husband is 45, we have 4 kids.  It's been an emotionally
exhausting year.

We've been to the Huntsman w/Dr Sharma and at IMC w/Dr Whisenant.
and have consulted BOTH for every single procedure and every single
step of the way on this journey.

Not sure you'll see this, but wanted to reach out from one SLC person
to another.

Dorien Nielson

6 (edited by kbcusumano Fri, 24 Jan 2014 23:21:48)

Re: Intro & looking for the facts of cholangiocarcinoma

Lainy,
I would love to see the end life stages. He was on oxy, but he has stopped because of the constipation, oddly enough he has dealt better with the pain, but the constipation is still an issue even without taking pain killers. He use to be so regular. Granted, he doesn't move around as he did before his diagnosis. I am sure he isn't close to dying. Unless your telling me something between the lines about the bile and coughing.

Thanks,
Kathy

Re: Intro & looking for the facts of cholangiocarcinoma

Kathy I will send the list to you. No, we don't post "between" the lines, if I thought it was that bad I would e mail you. But with that said I would still tell the ONC as coughing or vomiting bile should not be. Check you email in a few minutes. Be strong!

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: Intro & looking for the facts of cholangiocarcinoma

I had problems with constipation.  Simple solutions suggested by my nurse - magnesium citrate the first time, then sennacot-s (WalMart generic version worked great - took about 3-4 days).

Fighting with dignity, not desperation.

Live, Laugh, Love