Topic: New Diagnosis

Hi my name is Susan, my husband (Le, 41 yrs old) was diagnosed with stage IV intrahepatic cholangiocarcinoma in January 2013.  I've read how rare this cancer is and how horrible the prognosis is for those that are not candidates for surgery.  I am still grappling with the reality of my husband's diagnosis.  We have two beautiful daughters (13 &9) and we are doing what we can to extend the time he has with us.  We are very glad to find a community that can help us kick CC's butt!!

A brief timeline of events:

Jan 2: Went to primary care doctor because of severe itching

Jan 10: Became jaundiced dr ordered labs, ultrasound, & CT scan.  Bilirubin was at 18

Jan 16: We were told it was cc but still needed a biopsy to confirm and ERCP to place stent to relieve symptoms

Jan 21: Went in for outpatient ERCP for stent placement to relieve symptoms of the blocked duct - Procedure failed and was hospitalized for a week due to severe pancreatitis

Jan 24: Had biliary drain place due to the failed stent placement and a biopsy was done to confirm cc - I wish I had known that performing the biopsy would exclude Le from a liver transplant.  I hated that one treatment option was crossed out and I couldn't do anything about it.  Bilirubin levels at 22.4

Jan 25-Mar 1: Discussed options with primary care doctor and she said that we really don't have any oncologist specializing in cc referred us to MD Anderson.  Insurance didn't think we needed to be at MDA so they didn't approve enough coverage for MDA to accept my husbands case.  So we had to find an oncologist in town to agree and call insurance to advocate on my husbands behalf.  After our oncologist spoke with our insurance company, they amended the coverage and MDA accepted my husbands case in days.

Mar 21: We met Dr. Thomas Aloia for an initial consult.  He said that he's 70% confident that Le is a surgical candidate.  CT scans didn't show any metastasis and labs are stable.  CA 19-9 and CEA markers are normal.

Apr 2: Day of surgery.  After 3 hours Dr. Aloia aborted the surgery because he found that the cancer had metastasized to the peritoneum.  He did remove the gall bladder to prevent possible spread of cancer due to proximity it to the bile duct.  Biopsy on lymph nodes were all positive for cancer.  Hospitalized for a week for recovery.

Apr 8: Met with Dr. Javle to discuss our options.  He prescribed gemzar/cisplatin to be administered by oncologist in our hometown.  We will be back to restage in July and discuss targeted therapy.  Dr. Javle said prognosis is 6 month without chemo, one year with chemo.  It felt like a ton of bricks just came crashing down when he shared the typical prognosis for stage IV cc. 

Le started chemo May 1st.  He had his fourth round this past Thurs.  For the most part, chemo fatigue and the body aches are the symptoms he's experiencing.  It seems that Le has more problems with the biliary drain then anything else (excluding the actual cancer).  He's has had the drain replaced 4 times since January.  He still has constant pain at that site, which he controls with tramadol and he takes oxycodone for the breakthrough pain.

Le's bilirubin is down to 1.3 which is phenomenal compared to were it was at back in January.  But his CA 19-9 and CEA was negative and is still negative.  Our oncologist said he really can't tell if the chemo is working because Le has no tumor markers even though the cancer has already metastasized.  Has anyone else heard of such a thing?  We will be back at MDA in July to restage to see if chemo worked for Le and also discuss targeted therapy.  Only the primary tumor in the bile duct shows up on images, so I don't really know how doctors will be able to track the progress of treatment and such.

Re: New Diagnosis

Dear SNNLE welcome to our remarkable family, sure wish you didn't have to join. You and Le have been through quite a journey all ready. I usually go with my gut feeling and the first thing that jumped out at me was to get a 3rd opinion. I know that CC is very difficult to diagnose but I have trouble when there are so many yeses and Nos. I have to say I am a big supporter of MDA and am surprised of the indecision. Many Members get 3rd and 4th opinions. I would gather all his tests and reports an send them to another large Cancer Hospital. Also please keep in mind that we don't pay much attention to time frames as we were not born with expiration dates stamped on our feet. I know that others will be chiming in and lets see what they think. In the meantime be very strong and know that you have come to the best place to be for this nasty CC, and please keep us updated 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: New Diagnosis

Hi Susan!
I'm so sorry to hear about your husband.
It looks like y'all are on the right path right now. Dr. Javle is an awesome doctor, I see him myself! I can't believe he told you only a year with treatment. He has never told me that.
Did you ask him about transplant? He had send me to the Methodist hospital in Houston, and I'm now about to get a new liver.
Please keep us updated.

~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: New Diagnosis

Hi Susan,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about Le. But you have come to the right place for support and help and I so know that you'll get a load of that from everyone here. Thanks for sharing everything with us, you and Le sure have been through so much already.

I'm sorry to hear that your husband surgery was aborted after it was started. Unfortunately that is quite common and it has happened to people here or to their loved ones. But please do not give up hope. My fingers are crossed that the Gem/Cis gives the best possible results and please let us know how that goes.

We are glad that you have found us too and we will do all we can to help in kicking CC's butt, we like doing that here!!!

You said that you are grappling with the reality of Le's diagnosis, that is very normal. There is a webinar video here on the site that may be of use to you. It is by our Dr Giles and should you want to view it it can be found here-

http://www.cholangiocarcinoma.org/media.htm

Keep coming back here and if you have any questions feel free to ask and we'll do what we can to help in answering them for you. We know what you are going through right now and we care.

My best wishes to you and your husband,

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: New Diagnosis

Welcome Susan,

I am so sorry you had a reason to be here and that Le and you have been through so much already.  Sounds like you both have your gloves on and are in fight mode.  That is such an asset when fighting this cancer.

It does take awhile to come to grips with this type of diagnosis so you are not alone there. Many on this site have described their disbelief and how unreal getting this news is for them. 

I think you are doing great, getting a second opinion is paramount with this rare cancer.  I have heard great things about Dr. Javle, so sounds like you and hubby are in good hands.

Take care and stop back and update us often.  We are here for you!!
-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: New Diagnosis

Dear SSNLE,

I am sorry to read your news regarding your husband Le.  There must be so many questions and thoughts you both have.  This forum has support, advice and credible information in abundance. 

Please let us know how your husband and you/your children all are and I truly hope that the chemo produces some good results for Le.

Clare

In the stars now . . . .

Re: New Diagnosis

Hi Susan,
Please don't let that prognosis freak you out.  There are several members on this board that are living with stage IV CC for a lot longer than 1 year.  That chemo cocktail can be very effective at shrinking the tumors and sometimes opens up other treatment options that were not thought possible in the beginning.  The most important thing is to do your very best to keep a positive attitude and take excellent care of your husband. The rest is up to God and the doctors.  Sounds like you're seeing the best.
Dianne

Re: New Diagnosis

Susan....I echo everything said - welcome to our site, stay strong and try to stay positive.  Your question regarding the tumor markers has been addressed frequently on this site.  The CA 19-9 also called the Lewis antigen is not expressed in about 10% of patients.  I mainly is used to track responses to treatment; on it's own is hat little value, as other biological reasons can cause the markers to rise.  Given the lack of this marker, and that is the case for your husband, physicians have to evaluate responses by patient symptoms and scan results. Don't be too concerned though, doctors know how to track this.
Hugs to you,
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

9 (edited by snnle Mon, 17 Jun 2013 17:00:48)

Re: New Diagnosis

Thank you all for your support. This community is such a wonderful place for knowledge and experience. Going through cancer is so very isolating as it is, but something like cc when no one around has heard of such a thing is even more isolating and daunting.  We are ready to learn what we can and kick cc's butt.

@ champion - So happy that you will be getting a new liver soon, prayers that everything will go as planned.   Le is not a candidate for a liver transplant bc he had a biopsy done back in January to confirm cc.  Had I'd known that a biopsy would exclude him I would have requested they confirm it a different way to keep that option open.

Re: New Diagnosis

snnle....excluding biopsy for diagnoses of this disease generally is not practiced for many reasons however; I agree with you in that many people would decline a biopsy. 
Good luck,
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: New Diagnosis

Susan,
Don't stress over the biopsy and the loss of the transplant option. It's likely that the cancer had already begun to metastisize even though it was too small for the PET scan to pick up and this would have ruled out that option anyway.  The treatment choices made did not close that door, the cancer did.  Forge ahead, and don't look back.
Dianne

12 (edited by snnle Sat, 13 Jul 2013 17:12:44)

Re: New Diagnosis

Thanks everyone for your encouragement.  We are making the most of the situation. Since we have two young girls we are trying to keep things as normal as possible and not let this thing consume us. All of their activities have been a welcome distraction for us.

After 5 rounds of gem-cis my husband had his restaging at MDA this past week and the results were not what we were hoping for.  New CT scans show some possible lesions on the liver that weren't there in March and the peritoneal metastasis are visible now so that means it growing.  Lab results still negative for tumor markers.  Dr. Javle is "engineering" a PET scan to imaging the primary tumor.  He explained that given the location it's a very difficult cancer to image and therefore PET scans are not approved for this type of cancer.  This baffles me as I would think that when someone is diagnosed with something like icc that resources like PET scans would be available.  I guess I just don't understand.

Dr. Javle will be switching Le to FOLFIRI + Tarceva.  My understanding is that this cocktail is not approved for cc yet so I not looking forward to battling with insurance for coverage.  I'm working on looking for info on this combo, but I'm not coming up with much.  Any help will be greatly appreciated.

Thanks,
SL

Re: New Diagnosis

SL....depending on your income you may qualify for "compassionate use."  It is best to contact the manufacturer personally.  But there is a chance that the insurance company "may" cover the chemo protocol.  Your physician will receive reiumbursement notice or if not covered, denial notice.   
In re: to PET vs. CT, Percy posted this:
http://www.cholangiocarcinoma.org/punbb … hp?id=6543

and on chemo agents this:
http://www.cholangiocarcinoma.org/punbb … hp?id=7843

and here are a few other postings concerning FOLFIRI/Tarceva.
http://www.cholangiocarcinoma.org/punbb … hp?id=8386

I hope this helps. 
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: New Diagnosis

Dear Susan I am so very sorry to read about Le's latest reports. I am not understanding about the PET Scans either. My husband had them every 6 months for 5 years, no problems with Insurance. A few were turned down then the ONC called the INS CO and the PETS were put through. Does Le have a metal stent or plastic? My husband had plastic and unfortunately they have to be exchanged like every 2 - 3 months  as they can get infected which seems to be normal with this monster CC. If the Insurance will not cover the Chemo cocktail that Dr. J wants to do you might ask him if another could be comparable, something that is covered. I guess I would want to ask Dr. J if this chemo is Palliative or does it give Le a chance. This is an extremely tough decision for Le to make. While we are not marked with expiration dates Teddy wanted to know from his ONC how long  he had with the Palliative chemo vs not having the chemo and then he made up his mind. There is nothing that says you can't still get another opinion. You go until you feel comfortable in your own gut. Please keep us posted and 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: New Diagnosis

@ Marion - thx for the links this is very helpful.  I may need to contact the manufacturer to see if we can get some type of assistance. Base on our income level (since we both work) we have yet to be able to qualify for any type of financial assistance.  I've realized that no amount of planning can prepare you for the expense of a cancer diagnosis.  In a matter of 4 months we have wiped out our emergency fund and dipping into our retirement savings.  sad
At this point I'm praying insurance will cover the protocol.

@ Lainy - Le has a biliary drain tube and not the stent. He's had the catheter replaced every 4-6 weeks as it clogs up and/or gets infected. My understanding is chemo combo is to stabilize and hopefully shrink the tumors.  I didn't ask if it was palliative.  Actually, it never occurred to me to ask that. So thanks Lainy, I will be asking that of Dr. J going forward.  Dr. J doesn't think radiation is the route to go right now because he can radiate the liver but he would not be able to radiate the metastasis in the peritoneal.  I'm Starting to feel like our options keep getting smaller & smaller. sad

Re: New Diagnosis

Dear SNNLE, try not to think of options as getting smaller, they are just changing to hopefully pave any bumps you hit. For Insurance, they denied Teddy a few times for a PET Scan and the ONC stepped in and got it pushed through. Please let us know what happens at this next meeting. Wishing you the very best and 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: New Diagnosis

Susan.....it is one of the worst travesties befalling this country in that a major illnesses can wipe out the faineances of the family.  In fact, the majority of bankruptcies are due to non-paid medical bills.  Something wrong with this picture? 
Susan, some insurance have case workers called "advocates" who will work directly with you.  Not that they can make big decisions, but it can be helpful with speeding up the process of approval or denial. Additionally, as has been mentioned, the physician can speak with the insurance representative (most likely a physician) and argue the case for you based on current, available data. Hang in there.
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: New Diagnosis

Lainy - thx for the positivity. It's so easy to forget that in the mist of this battle.

Marion - Le does have a complex case mgr that was recently assigned, I think I may need to utilize her more going forward. Thx!
I still feel like I'm in a fog most of the time - trying to figure out what to do and where to go. I wish there was a flow chart that says if you are here, go here...


Dr. J was able to push for the PET scan and Le is going in on Wednesday. smile
Looks like they will have to request prior approval every time they do a PET scan.  Hopefully it will provide more answers then questions...

Re: New Diagnosis

Susan....good luck for Wednesday.  Susan, this is such a complex disease that I don't believe anyone is prepared for what's coming there way hence we just struggle through it. 
BTW: make sure to retrieve all medical records.  You want to have it in your possession.  I don't know how it works at MD Anderson, but if there is a social worker then you will be able to obtain advice.   Otherwise, go to the medical record department, pick up the Request for Medical Records form, and have your husband sign. 
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: New Diagnosis

Dear Susan, yea for PETS! Don't know why these Insurance Companies give people such a hard time, as if they don't already have enough on their plates. Can I make you smile? Teddy was going for his 1st PET Scan. It as a huge Hospital downtown Phoenix, and parking was jammed. There were 2 open spaces and they were reserved for PETS. I said that much be for those visiting Pets! After a long while of circling it dawned on me that meant PET Scans! Ay, ay, Yi! Talk about where your brain goes....Wishing for the best on Wednesday and sending all good juju your way.

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: New Diagnosis

Marion - Medical records are now on my list of to dos for Wednesday, thx!  I will find out on Wed how MDA works. smile

Lainy - that's a great story.  I laugh because I can totally see myself doing that too!!

So glad I found this little community. Ya'll are awesome!!!  The knowledge, experience, stories....heart is happy.  smile

Re: New Diagnosis

Hey there,

I love this forum, you have come to a great place for support and advise. I sent you a message, maybe we could visit soon. Your husband is lucky to have you!

Heather

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: New Diagnosis

Susan,
Good luck this week. Sending prayers.
Hugs
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: New Diagnosis

Good luck this week Susan. I'm in this CC battle with my sister. It's so frustrating to go through all the ups and downs of this horrible disease. I pray for all the best for you guys

Suz

Re: New Diagnosis

Susan,

Our best to you and your husband as you work through both the medical and financial challenges.

Carl