Hello...I've described my situation previously on this board. Diagnosed with HCC in
August 2010, large 18cm mass in right lobe of liver with right portal vein branch
invasion, unresectable, not a candidate for Tace or therasphere due to excess shunting
into lungs etc. AFP initially very high at 160,000+.
I started on sorafenib in september at full dose, have maintained that dose at least
98% of the time with varying side effects but none too severe to force discontinuation.
tumor responded well with initial shrinkage down to 12 cm and a significant drop in AFP
levels down to 3500 then 1200 then 160 by the 6th month on nexavar.
After reading about studies concerning nexavar in conjunction with Vitamin K as an
adjuvant, I decided to add daily doses of vitamin K1 (phytonadione) 100 mcg and
vitamin K2 (menaquinone) 50 mcg to my nexavar regimen.
The first month produced no changes in my bloodwork results and the tumor remained
stable; However, after a few more weeks my doctor called and said that my AFP level
had dropped to 4.3, which is normal!
Whether this has to anything to do with the added vitamin K or just a result of being
on full dose nexavar for 8 months I can only speculate.
The nurse who I contacted at the Bayer website says most peoples responses are more
modest, with drops in AFP levels down to a few thousand or few hundred points and
they then fluctuate from there.
My oncologist has presented my case to the tumor board again and now the surgeons
say that I'm a candidate for resection...but they want to remove the whole right
lobe and leave me with only the left lobe which has stage 4 fibrosis.
I'm torn between just staying on the present treatment or going all in with the
surgery....which realistically would give me about a 30% survival chance at 5 years,
but could lead to a possible transplant later on.
I am leaning towards the surgery at this point...but I may wait a while for more
imaging studies....my last MRI showed much more necrosis than previously, but my
doctor says that's not unusual with large tumors, which tend to die from the inside
out as they outgrow their blood supply.