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Stage 4 HCC - starting new clinical trial

Posts: 15
Joined: Dec 2010

Hi all. Here's my brief history for reference. All treatment except chemo performed @ MD Anderson, Houston. Chemo performed @ home in Melbourne, FL.

March 2010 - heavy pain in upper right quadrant caused me to see my GI doctor (i also have ulcerative colitis) which turned out to be a 20cm malignant tumor from HCC. No Hep A or B, no cirrious.

June 2010 - Underwent TACE to shrink tumor and provide surgical margin. Successful but stressful from fatigue point of view.

July 2010 - Underwent PVE to "bulk-up" left side of liver to prepare it for it's increased role.

August 2010 - Liver resection removed 75% and tumor; also several previously undiscovered lesions under my diaphram.

Oct 2010 - Statred 1st chemo round - drug regimen called PIAF. CT scan in FL highlighted a suspecious 1.5cm nodule.

Nov 2010 - Houston CT scan confirmed disease progressing thru nodule growth. Chemo halted and told to return in late Dec.

Dec. 2010 - Lesion now 3.3cm. Scheduled needle biopsy for Jan. which came back as malignant.

Feb. 2011 - Prescribed Nexavar. Started 2 x 400mg on March 10. MOTHER OF GOD, what side effects!

April 2011 - CT scan confirmed what I knew from my pain level - Nexavar didn't work and tumor continues to grow. Now 4.9cm and a new one found that measures .6cm.

I'm fortunate in several respects...
>>> My employer very quietly provided $10K of cancer insurance to us. It enabled expenses for my treatment @ MD Anderson in Houston to be mostly reimbursed.
>>> My GI doctor said right off that this was beyond him and suggested MD Anderson.
>>> My Houston oncologist has/had several trials running.
>>> I have a very healthy liver - no Hep or cirrious. Moderate alcohol consumption, which I easily quit.
>>> I have a terrific support network, particularly by my wife of 41 years (tomorrow), Kathy.

I'm now starting a phase II clinical trial (NCT01180959) to measure the effects of Avastin + Tarceva for HCC patients who tried but did not benefit from Nexavar. My oncologist verbally shared his as-yet unpublished results from phase I and they are very encouraging, although I didn't take notes and don't remember the numbers he spouted. We did not discuss and alternative treatment and I'm guessing because there is very little he could offer. The goal is for this trial to arrest the growth of the lesions they are tracking which would then make me a candidate for surgical removal of the two known lesions. What will be, will be.

I'm new here although I have gotten much information from reading all of your posts. My reason for posting now is in case any of you may be going thru the treatments I have and have questions that I might be able to answer. However, it is very true that each case is unique and we all respond to these treatments differently. Let me know if I can help anyone with similiar issues as mine.

Good health!
Darryl V.
Melbourne, FL

SarahD's picture
Posts: 139
Joined: Jun 2010

Hello Darryl my father is very similar to you. He is 55 no hep ABC of cirrhosis, he is very healthy. March 2010 was diagnosed with 11 cm tumor on his liver after several months of abdominal pain. april 2010 he had a bland embolization to shrink tumor and beef up left side of liver. may 2010 he had a resection 75% of liver as well as gall bladder removed with clean margins. Well his 3 month follow up revealed several new lesions in hins liver and lungs. Sept 2010 started on a clincal trial combining tarceva and nexevar vs nexavar and placebo, nov 2010 CT revealed disease progression, trial stopped. Dec 2010 new clinical trial combining 3 IV chemo agents avastin, gemzar, and oxaliplatin every other week through a portacath. Scans in Feb reveald mixed results, liver was respoinding lungs werent. So he is scheduled for scans this thursday to see where we are! It really sucks I love him so much never in a million years do we ever think this wiill happen. Best of luck.

Posts: 15
Joined: Dec 2010

Hi SarahD,
I remember reading your posts and wondered how the trial went for him. I'm learning to hate that word "progress", at least as it relates to cancer. I hope that he gets good news from Thursdays scans.

I saw my FL oncologist this AM, just to backcheck the treatment I am getting from TX. Our discussion made me feel good about entering this new trial, hopefully it will be a breakthrough.

He also told me that he would have suggested a combination of two drugs for me at this point. Avastin, which I will get in this trial, and Xeloda, which I have never heard of but will research tonight. However, after reading the trial literature I gave him and refreshing his knowledge of Avastin and Tarceva, he feels that this combination is promising.

Good luck

Posts: 1
Joined: May 2016

I was diagnosed in early 2013 with HCC. I had a tumor (felt no pain at all until it burst) and was rushed to Hopkins for emergency liver resection. The surgery was successful but as the tumor had burst my prognosis was not good. I had no history of cirrosis or hepatitis. After 6 months of recovery ASP (cancer marker) started moving up and over the past three years i have had 4 TACE procedures, SBRT and one ablation. There are small tumors that don't seem to be growing but one major one keeps coming back. While i am still "here" the TACE procedures really havent been successful and they are now looking to possible trials. I have had ulcerated colitis and I am unlikely to tolerate Nexavar. We are still at Hopkins and have had wonderful doc s although Hopkins has been going through some financial difficulties in terms of monies for research and both my primary oncologist and liver surgeon have moved on. I am not a likely candidate for furthere surgery. When i have recovered from TACE procedures i have felt fine and am not ready to call it quits. We think it is time to consider other hospitals (Mass General, Anderson) and wondered whether anyone on the site knew of any trials that have proved successful or and immuno therapy for HCC

Posts: 2
Joined: Jun 2016

What is the drug with your TACE?  Is it DC beads?  What are the side effects? 

My 89-year-old mother who has liver cancer is going to have the TACE procedure with DC beads in a few weeks.  My Stage IV bladder cancer brother is brought back from the brink of death with the immunotherapy drug, keytruda.  Please read my only other post.

Posts: 9
Joined: May 2015

My father have HCC met to lung with nexavar for 9 months living in bangkok. 

Now he is joining the clinical trial - using CRCL-AlloStim™ is a personalized, anti-tumor, therapeutic vaccine made from a sample of a patient's own tumor.  

Pls share and update your clinical result. eager to know and will share my father's update as well. 

This program is still accepting more patients but you need to be based in Bangkok for one month. you can check out ( http://www.immunocare.net/)  

Hope it benefit for HCC patient out there :) 

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