Topic: 37 year old male diagnosed with stage 4 CC - welcoming any advice

This discussion forum board is absolutely wonderful.

After experiencing jaundice and stomach pain for over a week, I checked myself into a local Orlando hospital's ER in early April 2013. After MRI and CAT scans, drs noticed bile duct obstruction. Utilizing ERCP (endoscopic procedure) and interventional radiology procedures (PTC), specialists were unable to placed a stent at the obstruction area and had to put in an external biliary drain. Drs were unable to identify the cause of the blockage but had serious suspicion that cancer was involved.

My wife and I then decided to fly out to the highly regarded MD Anderson of Houston for 2nd opinion from Dr. Jean-Nicholas Vauthey. Dr. Vauthey ended up admitting me to the hospital so they can attempt to install the stent & determine the cause of the blockage. After successful install of the stent and taking sample of very tiny "nodules" near my liver/abdominal area (peritoneal area) for biopsy, we were given the devastating news by Dr. Vauthey that I have been diagnosed with stage 4 CC. Dr. Vauthey is unfortunately unable to operate on me and the onsite oncologist is recommending chemotherapy (Gemcitabine & Cisplatin).

I'm 37 years old and happily married with two daughters (3 yrs & 11 yrs).

I would be grateful for any feedback or ideas on what the next step should be. I was wondering should I get 2nd opinions first before starting on chemo treatment? Maybe there's a chance that a different surgeon would do surgery? I also hear that Mayo Clinic offers more than just chemo treatments like radiation & photodynamic therapy.

As you can see, lots of thoughts/ideas running thru my head smile

-Jason

2 (edited by Darla Fri, 03 May 2013 09:53:25)

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Dear Jason,

Glad you found this site, but sorry for the reason why you came looking.   I can't be of much help, except to say that second opinions are always good and I have heard a lot of good things about Mayo.   I'm sure that others will be along soon that can give you some good advice.

My heart goes out to you and your family.   I have 2 sons in their 40's  and my husband passed away from this disease, so I guess it hit's me closer to home.  You have your age on your side and also your determination. 

Hoping you get some good advice and that things go well for you and your family.  Stay with us as there are a lot of good people here willing to share their experiences and information with you. 

Take care and know that you and your family are in my thoughts and prayers.

With 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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Dear Jason, I am so sorry you had to find us but WELCOME to our remarkable family. You have done everything just as a pro would do it. There are some amazing Hospitals East of you like NY Presbyterian,  Sloan Kettering and a few others where they are a tad more aggressive than most. MDA was a great place to start.  Gem/CIS is usually the 1st cocktail of choice. I want you to know that new things are popping now in the treatment of CC, we are being heard! Know that the decisions you make will be the right ones, we all graduated on this journey from GUT 101!  Never heard anyone being steered wrong by their gut. You have come to the best place to be as everyone is free here to rant, rave. question or advise others. It is very cathartic to write how you are feeling. I hope the drain is working well for you, my husband had an external drain. He got used to it just fine. My best wishes to you and your family and I know more will be welcoming you to our Site.  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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason maybe this will help on Hospitals!


On our home page click on Discussion boards → Hospitals → Treatment Centers/Physicians at the bottom of the Home Page.

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Your responses, this discussion & website is a blessing. I'm still learning everyday what this type of "Cholangiocarcinoma" cancer that I'm dealing with.

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason, I promise you that once a treatment is in place the fright will turn to fight. Do not be thwarted by the words Stage IV as we have had quite a few Members beat the odds! A good attitude and being strong will get you far. Not to mention those 2 Munchkins of yours!

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Cool, appreciate it

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

I just want to say hello Jason and welcome to the site although I am sorry that you have been given the news that you have CC.

This site is the most credible one I have come across and the support, advice and information is truly remarkable.  There is always someone that can answer a question or say just the right thing to make it all seem just a little more bearable.

There is so much information to take in and emotions to deal with - you are doing so well Jason.  Use the board to its full potential and ask away.

Clare

In the stars now . . . .

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason....Obtaining second or third professional opinions are warranted.  Hence, I would contact other centers with a high volume of CC patients.  Most likely you will be asked to forward CT, MRI, etc. doctor's reports, blood test.  Gathering this information will take some time therefore; you would want to get on it immediately.  From what I have seen, Jason, peritoneal invasion "excludes" resection however; you would want to have this confirmed by another specialist.  And, additional treatments may be recommended to you.  Please reach out to this great community for help, suggestions and support.  We are in this together.
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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Hi Jason! I wanted to welcome you to this site and let you know I am very sorry to hear about your diagnosis. My daughter, Lauren, has CC and was diagnosed at the age of 25. She is now 27 and about to go for her 2nd surgery of a two part resection. She was inoperable at the beginning but sometimes thing change. We were lucky to know we were at the right place and had the right doctors. But, if you are not sure of what to do, then definitely go for a 2nd opinion, if for nothing else but peace of mind. It seems almost everyone starts out on Gem/Cis and goes from there. It hurts my heart to see someone new with CC, especially so young and with small children. If you would like to know anything specific about Lauren's care, feel free to ask. We are an open book. I wish you much success in finding the place that makes you feel comfortable and well taken care of.

Hugs,
-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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,
Sorry you have to be here. It sucks, plain and simple.
I went for a second opinion and stayed with them for 2 years. After 2 years, I started to feel my onc didn't really care about me... Just statistics, etc. so I went for a 3rd opinion 2 years into this fight. I am now being treated by a new onc, closer to home, and feeling this is where I am supposed to be.
Don't ever hesitate to get another opinion if you don't like what you hear, or feel your onc is not listening to you...it's your life, after all.
Many prayers for you...

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason, sorry u had to find us this way. Everyone here is wonderful. My husband was diagnosed with stage 4 cc in August of 2009.  He was a candidate for surgery. He had a recurrence of his cc in June of 2012. He's still fighting. He too was on the same cocktail of chemo as you. It worked really well. He's now on xeloda and gemzar. He leads a normal life, works and his normal activities. Some days he's get tired but he's a fighter.
We have 2 kids also, a little older than yours but our kids I believe is what keeps him fighting.
Be stronger than the cc. Prayers being sent your way for you and your family.
You found a great place to come for support.

Hugs,
Michele

13 (edited by Jason Fri, 03 May 2013 15:22:21)

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

This is really incredible to hear your stories and responses. Amazing, I feel a little LESS lonely now. You guys are the best. smile

Just an update as of today:

I saw Dr. Ahmed Zakari - Medical Director of Gastrointestinal Oncology at Florida Hospital. I felt comfortable with his introduction, he demonstrated his knowledge of Cholangiocarcinoma at great length. From what he can read from the radiology report, he thinks I have hilar cholangiocarcinoma (HCC), also known as a Klatskin tumor. So far radiologist can only found nodules in my stomach lining and the "blockage" in upper common bile duct, no where else (I will get the official results from MD Anderson).

Dr. Zakari is recommending that I go with "gemcitabine and oxaliplatin (GEMOX)," instead of the standard chemo treatment "gemcitabine/cisplatin." GEMOX will be easier on my kidney since I only have one. I start chemo either next Tuesday or Wednesday.

After reading thru your replies, I think I will continue to see that specialist next Friday for 2nd opinion, it can't hurt, right?

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

JASON, 2ND AND 3RD OPINIONS NEVER HURT, we are huge believers in that. Those kind of opinions have changed many Members minds and with very good results. The ONCs do not mind as they are well aware what they are dealing with. I would definately go with at least a 2nd opinion. Also you really need to go to a Hospital that has a ton of experience with CC. I would want another ONC looking at my records and that way I will never look back with any regrets. I will know that I checked it all out, and like my husband would say, "Now we know what's wrong...let's fix it!"

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,
Im on here almost daily to get info, support and ideas for my sister (who is too afraid to read these blogs for fear of scary stories).  it is reassuring to see many many members managing to live very full, wonderful lives even with this horrible disease. it seems to be episodic for many who view and treat it like a chronic condition and get aggressive when it "acts up" but then have long periods of calm/stability or better! read Tiffany's story! and Cathy's! No one tx seems to fit all. It certainly can't hurt to send all your records to different CC specialists in be US, even while you start chemo. If they decided to do rad or surgery for example, they would have you stop the chemo for a couple weeks till its out of your system and then proceed. That's what they did w my sister (who also has a young son).... She did gem/Cis then Y-90 radioembolization and now on Xeloda (a pill form of chemo). She is also stage 4 and was diag almost a year ago. She is doing ok but fatigues easily and had trouble keeping platelet counts at a healthy level while on gem-Cis. Anyway, sounds like you are in good hands but definitely send your complete records off for more opinions!
Sincerely, Willow

Willow

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

And several became operable after being told they were not. Sometimes chemo is why tumors shrank/died enough to allow resection . Sometimes lymph nodes will react to chemo differently than the "main" tumors. Also, there are many mutations of CC, so some get their tumor biopsy samples sent out to find out which mutation it is and this can sometimes be used to eliminate specific chemo agents they know DON'T work on that specific mutation. Ok, too much info overload!

Willow

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,

Welcome to the site, but I am so very sorry you had reason to find it.  I am a CC survivor of 3.5 years.  This site was an incredible support for me and the best advice is to always seek another opinion. It can never hurt.  I got 4 opinions at different points in my treatment and I've never regretted traveling to get peace of mind.

Please keep us posted on your progress.  We do care.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,

I see the real experts have come through as I knew they would,  to share their experiences and give you some good advice.  The more information you have,  the better armed you are to fight. 

In the past 5 years I have seen a lot of improvement in both research, knowledge and treatment of this disease. 

It sounds like you are moving in the right direction and already have a treatment plan in place.  I agree with you and the others that another opinion can't hurt and if necessary maybe even a few more.  Go with your gut.  You'll know when it's right and you'll also know when it's not.

Good luck on your journey.  I am hoping things will go well for you.  Keep us updated as to how things are progressing.  We all care and are here to help you in any way we can.

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,
Have you heard of Dr Kato at Ny Presbyterian? He does surgeries that no one else would attempt. I'd contact him for another opinion. Holly22a on this board is seeing him and is very impressed from what I gather. There is also a great onc at NYP named Abby Siegel, who we saw for a second opinion.

You are in my prayers...my husband was dx a year ago, and Dr Fong at sloan operated on him. (margins weren't clean and he had nodal mets--BUT...he's doing great at the moment, so we're just enjoying each and every day!!)

Audrey aka betzeegirl


I googled Kato just now and here's his contact info:

Dr. Tomoaki  Kato
622 W 168th St # 105  New York, NY 10032
(212) 305-5101

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Once again I appreciate all of your responses. Very powerful advice and stories.

21 (edited by kris00j Fri, 03 May 2013 21:32:15)

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,
Gem/Ox will eventually cause neuropathy. Make sure you have warm socks, gloves, possibly a scarf handy. Your onc should tell you this, but... Don't drink cold beverages until your throat can handle it. For me it was about 4 days. Good thing I don't mind room temp liquids! And you will possibly have nausea. My second round I felt nauseous. I used the meds to control it but fought it for a couple of days. By the 4th treatment, I just let it go. 4 hours after treatment, I felt so much better after! And didn't have to fight it for days!
It is much easier on the other organs than cisplatin. Sloan Kettering uses it before cisplatin now.
I also have Dr. Fong at Sloan, and he is wonderful! I wish I had been able to see how well the resection went, but I was inoperable for the first year. Then he thought he could try it... But before my surgery, it spread so surgery was out.
There are a number of clinical trials that you might be able to participate in, too.

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: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason,

I am not a specialist however wished to pass on what I have learnt in the short time since my father was diagnosed. I have found helpful to read other people's approach.

He just started a clinical trial with GEM/CIS and panitumumab.

This is what I did after reading and getting advice from the wonderful people on this site.

I) confirmed with Dr Kato that he was not operable ( to be honest with lymph node metastasis I was rather sure he wasn't but you don't wish to leave any stone unturned)

Ii) spoke to a lot of Oncologists and then decided from the gut feeling approach that many discuss above to try the trial with the so called Standard  of care GEM/CIS with a targeted therapy. Now please note there is no evidence that such drugs EGRF inhibitors do make any difference however I thought it was worth the try. My father has had a very severe rash from this drug which may not be pleasing to everyone however if it increases our response  we wished to try. We have our first scan at the end of May and are hoping for the best result possible.

Iii) despite the fact it is not done in Australia I organized via our Oncologist to get genetic testing done on his sample (caris foundation) so that we have more information. It is not cheap however believe some of the US insurance companies cover this

Iii) I know this may seem crazy but I juice a bitter melon for my dad everyday. Read about this fruit/vegetable in this site.

I note that Tiffany is treated at MD Anderson by Dr Javle and he placed her on another EGFR inhibitor. I would ask your oncologist about this option (there are amazing reports on this website about dr javle and he kindly responded to my email from Australia which I thought was very nice).

In the end believe then idea that you need to look at this like a chronic disease does make you feel better and I truly believe a positive attitude is important.

I wish you all the best for you and your family

23 (edited by PCL1029 Sat, 04 May 2013 02:36:13)

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Hi, Jason,
I agree of what the steps that Rain suggested.
and please remember the treatment plans of cancer  is like a triangle that include three arms of the triangle- 1. surgery;2.radiation treatment and 3. oncology treatment.

1.You start the 2nd opinion or consult for the possibility  of  liver  surgery first.; and DR. Kato is well known for his skill and willingness to go beyond the tradition boundary to give his best to the patient. anyway he is in New York and is closer than Mayo.(Mayo clinics,in my opinion is more conservative .)
2. At the same time get a 2nd opinion by interventional radiologist to check out the  possibility of having RFA,radioembolization,SBRT,TACE etc. that can help you out to extend both the life expectancy and provide you a better quality of life to deal with this disease.(currently interventional radiation plays a big part in treating this disease due to the  fast advancement of the equipments , techniques  and protocols in recent years). You can schedule this at the same place when you see Dr. Kato to save a trip.
3. Even if you can have surgery done to provide you the only possibility of a cure for this disease;or have the radiation done ;you may still need adjuvant chemotherapy and or targeted therapy to mop up the cancer cells that are still inside your body after surgery. GEMOX+targeted agent like Avastin seem to be a good choice if you have peritoneal "nodules".But I am not a doctor,like you ,I am just a patient of this disease for 48 months.
Therefore please consult your specialists in that order(1-3).
4. Do not forget to look into clinical trials by using our web sites; surprising results like the NIH TIL trial(immunology) really gives me another angle to look into the treatment of the future.
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.

24 (edited by jathy1125 Sat, 04 May 2013 06:02:50)

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

Jason, Welcome and sorry you had go find us. I am a CC survivor! I will be cancer free for 4 years on May 24, 2013. I too was stage 4 and inoperable and my only hope was a liver transplant. (I had 2 !!). I have the most amazing story to share and you can read it at www.catherinedunnagan.com There is HOPE. I am alive because of God, 2 strangers and Dr. William Chapman. (The amazing part that is exactly how Dr. Chapman would list it)
My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis, MO. I could fill a book about the heart and soul of this man. Dr. Chapman, Dr. Kato and Dr. Javle are some of the main miracle workers for our CC family. They all have been known to change peoples diagnose to give HOPE!
Please feel free to contact me if I can help.
Lots ofprayers and HOPE-Cathy

Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice

welcome Jason.

My 44 year old husband was diagnosed with stage 4 CC in march.
We have 4 children and were TOTALLY devastated.

because it has spread out of his liver (to the lungs) he will
never be a candidate for surgery...only chemo to "prolong his life".
(we had 2 opinions--both drs said the same thing--we are being
treated at Huntsman Cancer Institute in SLC, UT--a pretty great place).

We just finished our first full round of 2 weeks on and 1 week off
(so 8 weeks total)-- next week we do scans to see how he has
responded to chemo (GEM/CIS combo)--i

good luck...if you ever want to email either my husband or i, feel free!