New Diagnosis
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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,
SLSusan,
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.
Diannesnnle….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,
MarionThank 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.
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,
MarionHi 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.
DianneDear 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.
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-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
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.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.
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.
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