My husband (Le) was dx January 2013.  Started gem/cis May-13 (3 month) didn't do anything.  Javle put him on FOLFIRI+Tarceva July 2013 and significant shrinkage (from 2.5cm to 7.5mm) and at his appt Dec-13 & yesterday Javle says Le is stable.  Javle doesn't know which (or both together) is working but based on genetic testing Javle thinks it's the Tarceva.  So he said that he's taking Le off FOLFIRI (if we choose). He also said he wasn't expecting Le to respond to this treatment (so glad he was wrong!) and that it's rare for someone to be on FOLFIRI long term (9+ months) - I am not quite understanding that, as my thoughts would be "it's working, let's keep going." But quality of life with FOLFIRI is tough to handle because of the severe side effects. Radiation is not on the table for Le as he has mets to the peritoneal (not visible on yesterday's MRI) - I don't understand this either as I know several people that's had radiation even though the cancer has spread outside of the liver. 

At this point we are to choose quality of life and gamble that the Tarceva is the one that's working or continue same treatment and my poor husband continues to endure the side effects.  We also know at some point Le will develop resistance to FOLFIRI anyways. 

I'm trying to gather as much info as possible to make the best educated decision possible and any experience/knowledge that anyone can pass along, we'd greatly appreciate it.

Thanks so much!
Susan

Matt,
Praying that Lisa responds well to FOLFOX. 
My husband (41) was dx with CC in Jan-13 and it's been a roller coaster for sure.  Five rounds of gemcis didn't work on him at all and now he is on FOLFIRI+Tarceva.  Best wishes to the both you and your family.

Blessings,
Susan

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(41 replies, posted in Introductions!)

Hi Heather.
When we met Dr. Aloia in March he gave my husband a 70% possibility that Le would be resectable, the 30% he will confirm with his retinal scan once he opens Le up. Le's labs were normal with negative tumor markers. CT scans only showed the primary tumor in the bile duct.  So we scheduled the surgery for April.  When Dr. Aloia opened Le up, he said he could see abt 20 metastasis in the peritoneal so he had to abort the surgery after 3 hrs. He did remove the gall bladder though and said that should prevent the metastasis from spreading to the gall bladder and having the possibility of dealing with that in the future and it also helps with the chemo side effects.

Prayers for a successful surgery for your hubby.

Blessings,
Susan

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(26 replies, posted in Introductions!)

@ Heather - I do love this forum also - so sorry that you have to come here also. Such wonderful people so willing to share their knowledge, experience, stories, etc...so very grateful!!!  Prayers for your hubby and his surgery.  I didn't get the message from you but I did send you an email with my number. Please call or text when you are ready to talk.

@ Lisa, Suz, & Carl - thanks so much for the prayers - we will take all that we can get!!!

@ Dorien - so sorry abt your hubby. Prayers that he continues to have good response to chemo.  I am learning that very little is known abt this awful disease

@ Heather - I do love this forum also - so sorry that you have to come here. Such wonderful people so willing to share their knowledge, experience, stories, etc...I'm so very grateful!!!  Prayers for your hubby and his surgery.  I didn't get the message from you, but I did send you an email with my number. Please call or text whenever you want to talk.

@ Lisa, Suz, & Carl - thanks so much for the prayers - we will take all that we can get!!!

@ Dorien - so sorry abt your hubby. Prayers that he continues to have good response to chemo. I am learning that very little is known abt this awful disease. Hang in there.

Blessings,
Susan

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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

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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...

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@ 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

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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

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(26 replies, posted in Introductions!)

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.

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(26 replies, posted in Introductions!)

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.