• pak001
  • Senior Member
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  • From: Cleveland, OH
  • Registered: Fri, 04 Nov 2011
  • Posts: 77

Topic: What was your treatment?

I am interested in getting information on what type of treatments you all have been through and currently receiving.
My mother went through 28 sessions of IMRT radiation in conjuction with half strength Gemzar for 4 treatments. After radiation was completed, she has been receiving full strength Gemzar for the past 5 months.  She has 2 more treatments of Gemzar then they will give her a break for 3 weeks, then PET/CT scan.
Would appreciate any information on your treatments thus far and was it effective for inoperable tumor.

Anna

Anna
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: What was your treatment?

Hi Anna,

This is a great post. I hope a lot of people respond. My daughter, Lauren, is the one with CC. She has had 21 or 22 chemo treatments so far. It's hard to remember. She was diagnosed around a year ago and started out with Gemzar, Cisplatin, and 5-FU. The 5-FU was in a pump that she wore for 48 hours. She had good tumor shrinkage after the first two scans. The only side effects she had were being tired and achy for a few days and her platelets would drop a lot from the Cisplatin. After about six months, her oncologist dropped the Cisplatin to give her kidneys a rest. She continued with the Gemzar and 5-FU until she had Theraspheres in May. We did not get the good news we had hoped from that procedure. The scan said her tumors on the side she had done had grown and there was a new 5cm. tumor. We find it hard to believe that a 5cm. tumor could just pop up and Lauren and I both wonder if it is a dead spot from the Theraspheres. She was then put on Oxaliplatin and Xeloda. She has had 2 rounds of that and will have one more and a scan to see if it has helped. She has been way more tired on this chemo regimen and sleeps a lot. I hope I have given you the info you wanted and wish you and your Mom all the best.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: What was your treatment?

I was diagnosed in September 2010. I had a liver resection removing 70% of my liver followed by six months of  5FU and lucavorin.  Three months later I developed two new tumors  so I had another liver resection removing 35% of my liver followed by 3 months of Gemzar. They stopped the Gemzar because I had developed two new tumors on Gemzar. I then had steriotactic radiation which destroyed both of the tumors. At the nextk scan I had developed one new tumor and an area of concern so I was put on Cisplatin and 5FU for three months followed by steriotactic radiation. I am off chemo till my scan on October 5th to see if the radiation was successful. If any new tumors have developed I will be considered for a clinical trial at The Cleveland Clinic.

Everyday is a gift

lisacraine's Website

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: What was your treatment?

We were visiting our kids in Milwaukee and Teddy Jaundiced after 2 weeks of  itching. August 15 2005. Was DX with CC in the bile duct valve. He had a Whipple that was aborted after  4 hours as  dye from the Endo leaked on the pancreas and literally destroyed it and the Surgeon needed a healthy pancreas to cut the head to get to the valve. Went back to my son's for 2 weeks and he developed a double e coli infection and that almost did him in. After 9 days in the hospital the real deal was done and he had an 8 hour surgery for the Whipple. Our 2 week trip had turned into 2  1/2 months!  5 different Docs from ONC to Radmen said no to chemo.
He had 2 tubes externally still draining him and yes, on the flight home to PHX they blew out! Don't ask. He then developed a small hole in the incision and a surgeon here just didn't want to do more surgery on his poor body so he went in to rehab for 3 weeks on NOTHING but an IV. The hole healed and we went along fairly well for 3 years.  The CC returned where his duodenum used to be and he had radiation then Cyber Knife and it worked. 2 years later it returned again to the same place. He was brave and strong and never complained.

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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: What was your treatment?

Hi Anna,

My dads CC was also inoperable and he had Photodynamic Therapy (PDT) as his treatment along with a metal stent. He had no chemo or radiation and the PDT that he had he only had it once. I wrote a bit about his experiences with that treatment and if you want to read more about it you can do so here -

http://www.cholangiocarcinoma.org/punbb … hp?id=1940

You ask if it was effective as a treatment. I would say in one way no as it didn't get rid of the tumour but then again, we weren't totally expecting that it would. But in another way yes it was effective as it stopped the growth of the tumour for a bit and it gave my dad what he wanted from that treatment, and that was quality of life for the time that he had left. And that is why he chose the PDT over chemo.

I hope some of that is useful.

My best wishes to you,

Gavin

  • Registered: Sun, 28 Nov 2010
  • Posts: 139

Re: What was your treatment?

Hi Anna,  my husband was dx oct 2010 atnthe age of 47 with intrahepatic cc , inoperable.  His first treatment  was
Gemzar and cisplantin for 8 months.  The tumors shrunk.
He then switched to Gemzar and oxaliplatin and avastan for 6 months.

In jan 2012 he stopped chemo since he could no longer tolerate the side effects.
But remained on avastan only for 4 months. 
He also had radiation for mets in his spine. And continues to get Zomeda.

In June he started a 6 week clinical trial in NYC.  After 8 weeks the results were inconclusive. 

The original rumors have not had any significant growth, however he has additional mets to the spine and involvement in the Omentum.

I wish you and your mom all the best.

  • pak001
  • Senior Member
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  • From: Cleveland, OH
  • Registered: Fri, 04 Nov 2011
  • Posts: 77

Re: What was your treatment?

Thank you all so very much for responding.  You all are so wonderful and strong. You've all been through so much and it always amazes me every time I come on this site how everyone is staying positive in the fight against this cancer.
My mom has been through numerous issues, readmissions to the hospital, sometimes she loses hope, frustrated due to so many issues this cancer causes. But I realize that you all have gone through so much thus far and we're just starting our journey.  Where ever this journey takes us is in God's hands, but I thank you all for your support, encouragement, and knowledge that we don't get from doctors.

Anna