Topic: Recent diagnosis, my mom stage iv

My mom has been feeling great, lots of energy however has lost about 3o lbs. in the last 3 years but she said she just is not that hungry anymore since my dad died 3 years ago of esophogeal cancer.  She, al;so, was about 30 lbs. overweight.  At the end of May, we were in Boston at my nieces graduation when suddenly she had terrible stomach paind, was constipated, extremely tiored and had a lot of confusion.  Once home, she went through a battery pf tests.  First they concluded it was liver cancer with no primary, finally is became cholangiocarcinoma with metatsis to the liver.  She has a large mass on her liver.  She has elevated CA19-9 and positive CEA markers.  We tried Gemzar twice, she reacted very poorly to itespecially the second time, fever, chills, shaking, nausea, etc.  We, with the doctors, felt it was hastening her death not prolonging it so 2 weeks ago she stopped that.  She continues to have bad stomach aches, large swelling below her knees, especially her feet.  Once elevated, they do go down but the minute she gets up, they swell up again.  She, also, has high calcium levels which she has received treatments of Aredia..I assume high calcium is a part fo this cancer???  I am so scared for her, the doctor says on a positive outlook it is 4 months but sometimes she has really good days however tires quickly.  I just don't know what to expect or do.  We recently started hospice however there is not much they can do right now for she is pretty good.  when does it all crash?

Re: Recent diagnosis, my mom stage iv

It sounds like your Mom is still in pretty good shape but not able to tolerate chemo. She might be a candidate for photodynamic therapy (PDT). The side effects are minimal and it is accepted treatment in Europe, there is an article in the Medical Updates section, here is the outside link:

http://www.eurekalert.org/pub_releases/ … 041508.php

I have posted on it before, see:

http://www.cholangiocarcinoma.org/punbb … hp?id=1658

Patty

Re: Recent diagnosis, my mom stage iv

lynns. as always I have mixed feelings when welcoming someone to this site as one wishes for cancer not to be in our life however, it is, and we are glad for you to have found us.  Sounds as if your Mom is troubled by ascities something, not uncommon with liver failure. You might want to discuss this with the physician as he or she could possibly prescribe a diuretic. Cholangiocarcinoma is considered a rare cancer and not many doctors are familiar with it therefore, preferably, one would have several opinions from physicians familiar with the treatment of this disease.  You are mentioning for Hospice to be tending to your Mom.  It is advisable to inquire about their familiarity with this cancer, also.  I am hoping for your Mom to be comfortable and for others to be passing on their experience and knowledge 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