Topic: New Member

Hi all, I've been checking this site for a little over a year. My story started back in 4/2011. Had a cold..coughed up a storm..had terrible sternum pain. Was diagnosed with costochondritis. Had X-rays nothing else just let it rest. Got a bit better but it repeated again in Oct. another X-ray and steroids but sent for CT Scan when it didn't heal. They found a lesion on my sternum and a mass in the liver. By Dec 2011 I was diagnosed with an unknown primary that had metasticized to the liver and a few bones. I was told I was not a candidate for surgery.
We spent about 2 months trying to figure out a primary through biopsies and scopes and blood tests. Nothing was abnormal or too high or low or hurt or etc. with an unknown your chances are only as good as what they try. I was seeing a Doctor at Siteman Cancer center in St. Louis and asked him where the best unknown Doctors were and he sent me to Sarah Cannon Research Center in Nashville. So I went for a second opinion there, during one of the biopsies I had some results for tumor markers. It matched up to one of the studies they were conducting there. We also sent my liver tissue off to California to be genetically tested.
The Nashville doctor said that only about 2% remain unknown primaries and we went ahead with the study. I was on 3 different chemos..Carboplatin,Etopiside and the study one. I was on that from 2/12-7/12. Initially the liver tumor was shrinking and the bone tumors less active. But after we dropped off the 2 chemos it plateaued and then the liver started increasing again.
From the tissue that was sent to California a diagnosis was made that there was a 67% chance of it be Cholangiocarcinoma , a 25% chance of gall bladder cancer and 5% chance of being about 30 different kinds. So...both my doctors believe that it is CC just because of what they can see and what they can't. Although neither can explain why all my blood tests show no cancer markers.
So in July I came back to Siteman and started a standard of care chemo regime for CC. I have had 12 cycles of Cisplatin and Gemzar. I had liver tumor shrinkage after the first 4 and after the second 4. I go next week for my 3rd scans. The bones they believe are looking better but they have said that is more difficult to measure.
I have also had 4 bone areas radiated to keep them from causing problems.
I am 52 now..was pretty healthy before I found this out and currently don't feel too bad except for the neuropathy in my feet. I enjoy reading all the posts and try to get as much info as possible because as I have read on here before someone needs to be the exception and my plan is for it to be me.

Re: New Member

Hi Cathy,

Welcome to the site. So sorry that you had to find all of us but I am glad that you've joined in here as I know that you will get tons and tons of support from everyone here.

Thank you so much for sharing your story with us all, you sure have been through so much up to now haven't you. I am glad that you sought out that second opinion and we are big believers around here of doing that, or even third or fourth opinions if need be!

My fingers are crossed for your 3rd scan that you have next week and please come back here and let us know how it goes for you. You are not alone in this, we are here for you and we care.

My best wishes to you,

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 Member

Hi Cathy,

I would like to welcome you to this site as well. You sure have been through a lot and I hope more than anything that yours will be a success story. You seem to be very strong and I think that is a great thing!! Can you tell us more such as family, career. I like to know about the person because I don't like anyone to be defined just by their cancer. Please continue to join in conversations since you have taken the plunge and joined this site. You will find that we are family here and really do care. All the best.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member

Welcome Cathy and sorry you had to find us. I am a CC survivor thanks to Barnes!! My doctors were Dr. William Chapman, (surgeon) Dr. Parik, Dr. Suresh and Dr. Aliperty. I have an amazing story to share please read it at www.catherinedunnagan.com there is HOPE.
Please call or write if there is any thing I can do to help since we are neighbors ! I will be at CAM center wednsday for scans this week, so if you are there jusg let me know. I am alive today becasue of God, 2 strangers, Dr. Chapman and Barnes

Lots of prayers and HOPE-Cathy
(love your name!!/618-567-3247)

Re: New Member

Cathy...I would like to follow the others and welcome you to our site.  Your attitude is great and you are so right, statistics only mean so much - someone has to be in the upper equation and no reason to believe that it won't be you.
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 Member

Hi Cathy,

I just want to add my welcome to the site and so sorry you had a reason to
find us, but the support here is amazing.

I was diagnosed with CC in December 2009 and like you my markers have never been high so it is not a good indicator for me either.

Take care and good luck with your next scan!

-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 Member

Thanks all for the welcome and encouraging words. My scans were good. My liver tumor is continuing to shrink and my bone mets are stable with nothing new showing up....so I call that good! Just need to focus on what will be next after the gem/cis. I only have 3 treatments left of that combo.
Always need to keep ahead of this...

Cathy

Cathy and if you don't mind I probably will give you a call since we are both in STL.  I'm out at West County and Dr. Stephen Sorscher is my doctor.

Re: New Member

Dear Cathy, welcome to our extraordinary family but sorry you had to find us. Your splendid attitude has got you far and will continue to take you further. You know by now how much we love the words stable and shrinkage which puts you among our super heros! Wishing for your good success to continue and looking forward to your continued updates!

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 Member

Hi,
a positive attitude is most by far one of the  good medicine that keep me going. I hope it will be the same to you.
cholangiocarcinoma ,to me, is a chronic disease and it requires knowledge and courage to navigate on this winding road. Like many other members on this board,all of them are very smart and know what they have to do in order to survive for as long as possible and in turn contribute their experiences to other people who will come by for encouragement and knowledge and  to smooth their future journey; we may not get  there in time for us but it may be in time to find a cure for the future generation to come. and trhis is why we all work so hard. Welcome aboard.and
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.