Topic: My introduction

A friend just sent me this link....can't believe that after all this time, I finally found it.
Anyway, I was diagnosed early last Nov with HCC/Cholangiocarcinoma...60/40. Very rare...approx. 1.5% of all liver cancers. There was one tumor, approx. 3.5cm which was resected at the Mayo late Nov. Op went well. Then in late Feb,they found two more tumors....less than a cm each..which were ablated. Then last week they found approx. 7 very, very small tumors plus some indication that it may have spread to two lymph nodes.
So...here we are.
Reading and listening between the lines at Mayo, I was led to believe that there wasn't much that could be done with this type of cancer. Maybe some chemo to treat the Chol part...but even that is complicated by the fact that I have very low platelets. So I'm seeing a local Oncologist here in Hilton Head to see where we go from here.
Like many on this board, I had had no symptoms except for some minor upper chest discomfort. and that was all it was....discomfort. The cancer was found by some persistent and careful Drs. 
I really don't know what to do. I'm tempted to do nothing...be grateful for a full life, loving extended family. I'm 69. And in , excuse the expression, in great health. Walking 5 miles a day, eating well, sleeping well,  and, oh yes,  have my handicap down to a 10.

Re: My introduction

Dear Frippislander, welcome to the best place to be for CC support. And what a beautiful place you hail from especially when it's hailing golf balls! Yes, this is an extremely rare cancer but how you want to do your Journey is all up to you. I just want to mention that an ONC with experience in CC is much needed
and 2nd and 3rd opinions are highly regarded. We really try to stay realistically optimistic as well. Please keep us updated on your new ONC and your progress as we truly care. Now go play golf!

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: My introduction

Hi Frippislander, my dad with the same disease has very low platelet count as well.  Even before the disease it was hovering around 100 and now it's down to 50.  I think there are some chemo drugs you can use despite of that.  He's on 5-FU and Avastin now.  Sending our best wishes for you from HongKong,
Val

Re: My introduction

Hi, Frippislander,

I am 64, have this CCA for more than 61months. I am doing the minimum in just hoping to slow down the tumor progress and metastasis . Personally I believe a better treatment plan will not be available within the next several years unless immunotherapy such as TIL@NIH( I called them and they told me I have to exhausted the available chemotherapy( ie: Gem/CIS ) first, and the disease is in progress before they will consider my request and there are a lot of inquiry since the success of treating the CCA for one of our members there. In short, they are very busy.
I know Mayo is one of the best place to go for treatment . I went there had all the oncology( general and personalized),hepatopathology GI consult and
radiology(interventional and oncology) consults. I came down with the ideas that Mayo is good but lack of coordination between different practices and therefore a a good  and special or personalized  follow up plan is some what difficult  for the general public. Gem/CIS was what they recommended , no personalized or clinical trial was available as of Feb.2014. I do not want to do GEM/CIS, so my local oncologist put me on Xeloda. Next scan will know whether it works or not.
I enjoy my life, kids grown, no more liability, happy to wait for whatever God ' s grace lies ahead.  I guess I am in the same boat as yours may be . Good luck 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.

Re: My introduction

Hello and welcome to the site...and I am sorry you had a reason to be here.  I second what Lainy wrote, experience with CC and 2nd, 3rd and even 4th opinions are in order with this rare disease.  Good luck and update us with your progress.  Wishing you the best.

Percy:  So nice to see you posting here.  Hope you are feeling ok and from your post it sounds like you are enjoying life these days.  take care, you are never far from my thoughts.

Hugs,
-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: My introduction

My husband chose no treatment when his CC was discovered because it was  Stage 4, nonresectable and spread to lymph nodes and possible pancreas and upper GI. He came home from the hospital on December 20th, 2014. He had several good months at home with no treatment. He never complained about pain until about a month before he died. Morphine did the trick but made communication difficult because he was quite loopy.  On March 25th, he entered a hospice home when I could no longer care for him at home. The hospice home was a good choice as my husband needed a two person assist and eventually a mechanical lift to get him out of bed. They did a great job keeping him comfortable. The hardest part was the last week when he was too weak to speak so we didn't know what he wanted. He passed on May 8th and I wish I could say it was quiet and peaceful but if was not. I still feel we show more kindness and compassion for our pets than our human loved ones. I miss him every day. Love you so much Frank!

7 (edited by marions Wed, 04 Jun 2014 09:42:52)

Re: My introduction

horses....If you can do it and feel up to it, would you please share with me your husband's last week?  You may e-mail me at: marion.schwartz@cholangiocarcinoma.org

End of life issues are my pet peeve (so to say.)  I have plenty of interaction with physicians and researchers worldwide as well as with the NCI, FDA, and NIH and my position as patient advocate as well as a research advocate allows me to actively push for changes within the medical system.  No one should have to suffer and if someone does suffer then someone is to blame. It is cruel not only to the patient but to the caregiver and loved ones as well.  I recall LisaS mentioning her Veterinarian's comment that animals suffer less than humans in the end of life setting. 

We must know though, that given the disease progression not all people have pain or have endless vomiting.  It is those select few that do and it is for this select group of patients that we need to fight for changes in the system.

I better get of my soap box and relax.
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: My introduction

Dear Horses, I am so very sorry that Frank went through an awful journey. There is NO reason to suffer today with all that is out there to help. We started out with Home Hospice and they were wonderful. The last 4 days of Teddy's life I also felt I could not handle him. I am small and even though he was very short he was extremely strong even in the end and he said OK to a Hospice Facility. They did not do their job and without asking anyone took him off the heavy morphine and Ativan he was on. When I brought him in he was pain free when he went out I can honestly say it was barbaric! I too do not understand some of these systems. I felt if they had to pay for what they did to him it would prevent it from happening to others. Not so as I heard down the road they did it so someone else.  I so understand where you are coming from and sorry I had to join Marion on the soap box. I do promise you that eventually the bad memories soften as the good ones take over. It takes time. I feel grief is like a river and will flow until it decides to stop.

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.