• From: Winston-Salem, NC
  • Registered: Fri, 03 Aug 2007
  • Posts: 376

Topic: Chemo only option?

My husband Charlie (52) diagnosed 6/07 with Stage IV cholangiocarcinoma after 2 months of not feeling good, low energy, weight loss.  Dr. says surgery, RFA, all the other options are NOT an option for him.  (Cancer in both lobes of liver). Only way to get rid of cancer completely is with a liver transplant.  Univ. Phil. Med. Center @ Pittsburgh said NO, he doesn't meet criteria for t'plant.  Sending all husband's med. info. to Mayo Clinic to see about a clinical trial.  I know there's no cure at this time for this cancer, but now what....feeling lost in this crazy medical maze.  Any suggestions, help or info. would be greatly appreciated.  We're in NC, 2 children, ages 19 and 16. 

So far, Charlie's had 1 round of Gemzar (7 wks) and is doing much better.  Little more energy, gained all the weight he lost back.  Had 1 wk. off and just started another 7 wk round of Gemzar.  CT scan showed no reduction in size of tumors in liver.  It was our understanding tumor needed to reduce to be considered for t'plant. Dr. tried it, but they said no.  Thanks!

Carol

  • Registered: Sat, 19 May 2007
  • Posts: 142

Re: Chemo only option?

Hi Carol-we have been going through this same experience since Feb. when my husband Dave (64) who had never been sick a day in his life, started feeling tired all the time and losing weight.   Doctor thought he was just out of shape and that he needed more exercise......CC diagnosed 3/31.  He has had 5 doses of Gemzar and Oxiliplatin, but now he is having a month off because he almost died July 3rd with a cardiac problem.    Anyway, we went to Mayo Clinic in May but he was not a transplant candidate either because of the many liver tumors he has. 
I read every post on this site hoping for some other alternatives, but for right now he is feeling well and we are living each day to its' fullest. I work full time, but am taking this week off while he is feeling so good off chemo.
It seems some folks on this site have had surgery, some radiation, and most some sort of chemo, with various results.
I can't really give any advice but share in your search for more answers.  Wishing you both answers and success in beating this nightmare of a disease.  We're all in this together.
Patrice

  • From: Winston-Salem, NC
  • Registered: Fri, 03 Aug 2007
  • Posts: 376

Re: Chemo only option?

Dear Patrice, thanks so much for sharing your and Dave's story.  Just knowing we're not alone helps so much.  I'll try to find out about Oxiliplatin. Charlie's just been on Gemzar.  Thank you for your comforting words and I pray that Dave will continue to feel good and for strength for you both. 

Carol

  • Registered: Sat, 09 Dec 2006
  • Posts: 514

Re: Chemo only option?

Hi Carol,
I sympathize with how frustrated you feel right now! My mother was given chemo as her only option because of the "uncountable" tumors in both lobes of her liver. She tried Xeloda and Gemzar, but she was too far gone for it to make much of a difference. It works very well for some people, though. Also check out the people on this site who use a special diet and herbal supplements and mushroom extract - I think it's under "Alternative Treatments." Different things work for different people, so don't give up hope!

Much luck to you!

- Joyce

  • From: Winston-Salem, NC
  • Registered: Fri, 03 Aug 2007
  • Posts: 376

Re: Chemo only option?

Hi Patrice, I hope the month off of chemo has been good for Dave.  Please update us when you can.  We care.  Charlie's hanging in there.  This 2nd round of Gemzar is not going so great.  He is so weak, has absolutely no energy.  Put him on Prednisone and is feeling better.  His red blood counts continue to decrease with the chemo.  Going for 2nd opinion at UNC next week, maybe get a fresh perspective, can't hurt.  We're blessed to have good health care in NC.  Anyway, I've rambled long enough.  Just had you and Dave in my thoughts and pray you are both doing well!

Carol

  • bill
  • Senior Member
  • Offline
  • Registered: Thu, 12 Oct 2006
  • Posts: 57

Re: Chemo only option?

I really like the 2nd opinion idea.  From my experience with my wife, Kathleen, there is no one "right" way of treating this.  She has had varying levels of success with a variety of treatments over the past 5 years so I encourage you to keep exploring your options.  (The transplant rejections are tough because it seems like the only long-term "cure" but I have come to understand the reasons after several rejections for Kathleen).

Good luck to all of you.

  • From: Winston-Salem, NC
  • Registered: Fri, 03 Aug 2007
  • Posts: 376

Re: Chemo only option?

Hi Bill, I saw your wife's Care Page.  What an amazing lady and what great support you are!  I read that she had Theraspheres.  We've contacted Dr. Kennedy in Cary, NC about this procedure for my husband Charlie.  They did tell us right away that our insurance may not cover it because it's considered experimental.  Did you run into any problems with this at Mayo?  From what I can gather, it worked well for Kathleen?  We feel like the 2nd opinion at UNC will be good also.  Best wishes to you and Kathleen.

Carol

  • bill
  • Senior Member
  • Offline
  • Registered: Thu, 12 Oct 2006
  • Posts: 57

Re: Chemo only option?

Carol,

http://www.y90support.org/News.html

Check out this broadcast about fighting for coverage for Therasphere.  We did not have any problem getting in covered by Kathleen's heatlh plan but not everyone is a candidate for the treatment.  In fact, this was not even discussed with Kathleen until it was discovered that she had a mixed CC/HCC tumor so I don't know if this is available for CC patients.

Best of luck and I hope you are provided with some good options to pursue.

Bill