Topic: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Good morning everyone.  I'm very hapy to have found this board.  I was a member of a similar group when I was diagnosed with Renal Cell Carcinoma and had my kidney removed in 2005.  I found that group to be extremely helpful and prayed I'd find one for my wife.

She was diagnosed on Sept 10 and it seems like our life has started falling apart since then.  We've been married 30 years and she's everything in the world to me.  Janet went to the Dr in late August because her legs were hurting her.  The Dr' ordered a PVL to take a look at her legs and she also thought that Janet's abdomen seemed bloated and ordered an ultrasound for her ab as well.  The PVL showed clots in her leg, she was sent to the ER and prescribed cumadin and Lovenox.  This was the day before we were scheduled to go on vacation.  Janet wanted to go anyhow so we did but by the time we returned her legs were feeling worse and were quite swollen.  She was also very short of breath. She went to the Dr and was informed that she had suspected Pulmonary Embolisms and immediately sent her to the ER to be admitted to the hospital.  Her Dr. also informed her that the ultrasound showed a 'spot' on her liver. 

The spot on her liver was confirmed by CScan at the hospital.  She was admitted and spent 11 days while they tried to figure out what was wrong for her.  When they biopsied her liver and found cancer there and several other tumors in her small intestine they determined that the cancer was causing the clots. 

In less than a month she's gone from just a couple clots to a major problem with new clots forming one after the other.  She's had a screen implanted in her Vena Cava to prevent anymore PE's but her legs are extremely swollen and painful.  She's started Chemo and they put her on Gem/Cisplatin on a 21 day cycle.  She's had one round.  The Dr. told her that if we treated the cancer it would probably help slow down the clots.  So far she's getting 2 Lovenox shota a day and there's no let up in her legs.

Is this common with CC?  Are blood clots a  typical issue and if so can anyone give me some idea as to treatment options other than Lovenox?  She's been getting 2 shots a day for 3 weeks now and her abdomen is one solid furious looking purple bruise.  It looks awful and I'm running out of places to inject her.

I'm also wondering what we can expect from this awful disease.  My wife has always been healthy.  She exercises, eats right, works hard and has always taken great care of herself and she's ALWAYS cared so much for me!  She's my angel and I want to do whatever I can to help her through this.

Her Dr. told her that because her cancer is inoperable her prognosis would probably be less than 6 months without chemo but 9 to 11 months with treatment.  I know that these are averages and statistics are difficult to apply to individuals but what can she realistically expect?  She doesn't feel sick at all...her only problem is in her legs.

Any insight would be greatly appreciated.  I feel like I'm in a bad, bad dream and just can't wake up...

Sorry to have rambled on so long.

2 (edited by PCL1029 Mon, 30 Sep 2013 11:53:13)

Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Hi, Dan,

Blood clots are a common problem for CCA, Lovenox is a good choice for PVT,DVT  at home, Coumadin and other newer kind of anticoagulant  works fine too without routine monitoring of PT/INR level like Coumadin required.
Since I do not know about your case,like tumor size, location of the tumor, associated disease(comobidities ), I cannot provide more info and experience to help you more. BTW, I am only a patient and not a doctor.
Cholangiocarcinoma is a tough one to swallow and treated, but unless your wife were treated at at one of the hospital familiar with CCA, most of the oncologists do not have a clue but just follow the book giving GEM/CIS  standard chemotherapy.
Other way to extend the quality of life besides using chemotherapy is interventional radiology and immunology  clinical trials like anti PD-1
No body know how long a CCA patient can live with a good quality of life, I live for 4 and half years, some live 6 or seven more years . And of course some live just for a shorter period of time. But knowledge of this disease can help, in my opinion, to provide a better outcome.
So, if you do not have a second opinion on your wife'CCA, you can try MD Anderson at Houston For a GI cholangiocarcinoma  consult, or MASS GENERAL  or John Hopkins for a consult that involved GI oncology, interventional radiology and radiation and liver specialist ( multidisciplinary consult). Good luck and
God bless.

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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Dan....welcome to our site.   I spoke with a physcian and he pointed out the Trousseau sign of malignancy.  It activitates the clotting system. You may read up on it:
http://en.wikipedia.org/wiki/Trousseau_ … malignancy
As Percy has mentioned, second or third opinions from a major cancer center is advised.  You will need to compile everything and anything pertaining to the diagnoses.  This includes, blood tests, scan results, physician's notes, etc.
Good luck and 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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Our son has just been diagnosed; confirmation came in early Sept on his 22nd bday.  He got his first dose of chemo a week ago gem and cis (so new to this I can't spell this). Where are test studies being done?  How do we find out about them?

5 (edited by PCL1029 Mon, 30 Sep 2013 14:24:08)

Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Hi, Lisa,
Here is the link about the ABC TRAIL indicated it may be effective for treating cholangiocarcinoma.
The final result will be available hopefully at ASCO 2014 at Chicago.

http://www.cholangiocarcinoma.org/punbb … 470#p77470

If you would like to know about other chemotherapy regimen the link below May help.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

Also the link below for interventional radiology treatment options  for CCA if patient qualified.

http://www.sirweb.org/patients/liver-cancer/


God bless

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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Thanks, PCL1029, she was on Coumadin but it failed.  I guess we'll talk to the oncologist tomorrow, he's also a hematologist and see what he says.  I read the posts that you linked to a dn found them very informative and inspiring. You are a warrior!

Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Thanks for taking the time to replyt Marion.  The info about Trousseau's syndrome is very interesting...gave me a new ave for research and something to talk to the Dr. about.

Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

nickcancer....welcome to our site.  Your son is so very young – my heart goes out to him and your family.   Have you been informed of his stage?  Have any other options been discussed i.e. resection, possible radiation therapy, second or third professional opinions? I hope you don't take offense to my asking.    One important thing to remember is that Nick? has youth on his side. 
The below link leads you to the study conducted in the UK.  It was the largest multinational study ever conducted proving that the Gem/Cis regimen is superior to Gemzar alone in the treatment of biliary cancer. 
http://www.ncbi.nlm.nih.gov/pubmed/19672264

and here is a bit more:
http://medicina.udea.edu.co/gastrohepat … 202010.pdf

The BILCAP Trial has completed and we are awaiting the data.  This trial compares post surgery patients treated with Capecitabine (Xeloda) to those not treated in a neo adjuvant (post surgery) setting.  We expect the data to be released in 2014 possible in time for ASCO, American Society for Clinical Oncology.   
Please continue to stay with us.  We are in this together and we are here to help each other.
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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Hello Dan and welcome to our fabulous family but sorry you had to join us. Janet is already a true warrior as she has been through a lot. The only thing I an say is what has already been said and that is to get another opinion or 2. It is probably the most important thing to do when DX with CC. I wish we could tell you what to expect but since we can't we try to remain realistically optimistic. I have to say that when I went through this with my husband I listened a lot to my gut and it was usually right. Please try to get another opinion as the best would be they find a new way to deal with it all and the other best is you know you will have covered your bases with no regrets. Sending you the very best and please keep us posted as we truly care.

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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Hi Dan,

My brother was recently diagnosed and he has multiple blood clots also. They showed up in his leg, arm, and lungs. That is what sent him to the dr. too in the first place. The dr's at the hospital all seem to act like they have no clue why he is having the blood clots. But of course it is due to the cancer. He has been on chemotherapy and so far it is not working for him. But everyone is different. I agree that it is important to get a second and even third opinion, and to go to centers where they are experts in this cancer. My brother did not (he was stubborn and in denial) and I regret that we didn't push him more. There are so many avenues to check out, alternative therapies to try, and all roads are different for different people.. Your wife is so lucky to have you on her side. It sounds like you are doing all the right things. Stay strong and don't give up. This site is great for information and just support from those who have been there and are living it. We had also never heard of this cancer and never saw it coming. He is only 43 and was pretty healthy. Take care and peace and strength to you and your wife. I hope she gets some relief from the clots in her legs very soon.

Mike, you will live on in our hearts and memories forever...

Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

Dear Mother of Nick, welcome to our extraordinary family but so sorry you had to bring Nick to us. It breaks my heart to say that I believe Nick is our  youngest Warrior so far. On the other hand being so young may prove beneficial. May I ask where Nick is being treated and if you have sought out another opinion. You have come to the best place for support and we hope you will keep us in your loop. You are not alone 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: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb

welcome to this site! First off I don't know anything about leg clots -- that's the way it is with this cancer: different for each person. Second, never listen when they say (guess) how long you have to live. Seems like they tell everybody 6 to 9 months, regardless. Many last an awful lot longer, years, even. Get lots of second opinions -- I got 4! But knowledge is your best friend with CC. Post your questions here, often. Somebody else might be wondering the same thing. We all learn together.
Good luck to all.  Holly (1-year survivor with clean scans but elevated markers)