• From: Philadelphia, PA
  • Registered: Fri, 11 Jan 2013
  • Posts: 2

Topic: Newly Diagnosed

Hello,

I'm a 31 year old female who was just diagnosed with intrahepatic CC. I have no symptoms. They only found the tumors in my liver (last count was 7) because I went to the ER in November with chest pain (which was unrelated and went away on its own). I've gone through every diagnostic test imaginable looking for another primary tumor. My doctors couldn't find anything, so they have settled on CC.

I'm undergoing IVF now to freeze embryos and am scheduled to start chemo next week. They plan on using gemcitabine, irinotecan and panitumumab. Howeverr, we are waiting for insurance approval because two are off label. All of the tumors are in my left lobe, with the exception of a single "spot" in my right lobe, which the surgeon said he could just ablate. He gave me every indication that they could all be removed. They want to do chemo first because they are afraid that if it isn't CC, then it could spread elsewhere. After chemo then we will begin discussions about surgery.

The last month and a half has been hell for me, my husband and my family, but I'm trying to stay positive. I was reluctant to post on here, but I have read that being a part of some sort of support group is helpful. It's so hard to believe that all of this is happening because I feel generally healthy. The doctors say their goal is to keep me healthy.

I could use some encouraging words and some good vibes because this is all really daunting.

  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: Newly Diagnosed

Welcome to the board but sorry you had to find us.
I am very similar to you.  I am a 33 yr old female, diagnosed with intrahepatic cc at 31 on 5-11.  I went to the ER one day after having some abd/chest pain where they found spots on  my liver.  I was told I had the flu or food poisoning but should get the liver spots worked up.
The spots turned out to be a mass on the left lobe of my liver.  I had  the left lobe of my liver removed 5-11 and that's when I was told I had CC.  After the resection, I had 3 cycles of gem/cic, 6 wks of chemo radiation, and 3 more cycles of gem cis.
I was really healthy at the time of diagnosis and was trying to get pregnant. I don't have any other medical issues.
Where are you getting treated at?  I live in Oregon but used to work at UPMC in Pittsburgh so went there for my surgery.  My surgeon was David Geller and he is excellent.
Did they do a biopsy?  I am not a Dr, so this is just my humble opinion, and I'm sure others will chime in, but I'm a little surprised they are giving you chemo instead of getting you into surgery right away. If it is CC, the amount of patients who are eligible for resection is very small and that is the only chance of a cure.
CC is very rare and members of this board tend to encourage getting treated at a large medical center by someone who has experience treating this disease. We also encourage second and third opinions.  I got 3 opinions on my case.


Best of luck with your treatment and please keep us posted.

Susie

3 Reply by PCL1029 (edited by PCL1029 Mon, 14 Jan 2013 18:01:16)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Newly Diagnosed

Hi,
I agree with Susie. and above all, I am just a patient and not a doctor.

If the tumors are only on the left lobe and just one or 2 in the right lobe without metastasize to other part of the body ; If I were you, I will  definitely seek  a 2nd opinion on surgical oncology at a larger university medical center like Susie suggested or send CT disc and reports to Dr. Kato at New York Pres. Hospital  first before taking the chemotherapy  of gemcitabine, irinotecan and panitumumab. This regimen is tough to take;side effects include cardiotoxcity,nephrotoxicity(kidney),cutaneoustoxicity(Skin) and neuropathy.

Surgery is the only possible cure for cholangiocarcinoma.  I am a patient of ICC for 45 month.  Recurrence is high especially ICC(>75%); and if so, liver resection first and adjuvant chemotherapy to follow is a logical step to treat this cancer if possible. I am just afraid your oncologist wants you to try that regimen because s/he may show great interest on that regimen first compare to other available Level 1 regimens which have been used for a longer period and show efficacy. If chemotherapy is a must before surgery,I will ask for the level 1  regimen like Gemox or Gem/Cis if the oncologist at the the larger medical center agreed.
Since the last scan was in November;it may be of interest  for you and the surgeon or liver specialist  to get a 2nd CT scan at the consulting hospitals for the most up-to-date  condition of your liver in order to make the final decision by the surgeon. Please don't wait too long and missed the opportunity for surgery.
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.
  • From: Philadelphia, PA
  • Registered: Fri, 11 Jan 2013
  • Posts: 2

Re: Newly Diagnosed

Thanks for your replies. I really appreciate the concern. I'm a patient at the Hospital of the University of Pennsylvania and they are my second opinion. My doctors are Giantonio (oncologist) and Drebin (surgeon - Chairman of the Department and did all his training at Hopkins).

I did have a biopsy and both (one from the local hospital and one from HUP) pathology reports only described it as "adenocarcinoma." It seems like they basically have come to ICC by process of elimination. My mammogram, colonoscopy, endoscopy and every other test were all normal. My PET/CT scan in late December only "lit up" in the liver. This is why they want to do chemo first, because they aren't 100% sure whether it is CC or liver mets with an unknown primary.

They are doing a phase II trial of the gemcitabine, irinotecan and panitumumab for advanced CC and have had very promising results so far. It may be a moot point if the insurance company doesn't cover it though. I believe that Gem/Cis is the backup plan. Both my surgeon and my oncologist are in agreement that the chemo should go first and were optimistic about the chemo, so I feel pretty good about this plan.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,212

Re: Newly Diagnosed

Dear Jessrose, welcome to our extraordinary family but sorry you had to join us. It sounds like you have everything under control and that is great. I know that when you first get this DX its like being hit in the stomach with a baseball bat. BUT, once you have a game plan in place, the fright turns to fight. I also agree with what Susie said but we are not Doctors and can only advise, although our members are pretty darn smart! Wishing you the best and please keep us posted!

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.

6 Reply by PCL1029 (edited by PCL1029 Tue, 15 Jan 2013 11:18:23)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Newly Diagnosed

Hi,
My guess is correct,s/he did show great interest on trying to get you on that regimen. With regard to the efficacy, the Phase II trial still have to prove the efficacy of the regimen  is out weight the benefits.Then they need the Phase III to expend the trial and get FDA approval.
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.
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: Newly Diagnosed

Hi Jessrose,
Welcome to this wonderful group of loving and supportive survivors. I have ICC and was diagnosed in Sept. 2010. I am a 48 year old wife and mom of two boys. If you want to talk please call me at 330-903-6868.
Hugs,
Lisa

Everyday is a gift

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