Cancer Survivors Network

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 My oncologist verbally shared his as-yet unpublished results from phase I and they are very encouraging, although I didn't take notes and don't remember the numbers he spouted.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