It has been several years since I visited the site.  I just want to share some information and perhaps a couple of suggestions to folks who have recently joined the group.  I am now 75, having been tagged with HH in 1993 at the age of 47.  15 months of aggressive phlebotomies to get my ferritin down under 30.  Five years later the extreme arthritis started.  I've had 4 joint replacements and a fused L5/S1.  As some of you know, ankles are the toughest because there is no easy fix.  After seven years of hobbling around with excruciating ankle pain, the third rheumatologist I saw informed me that I had pseudo gout crystals in my ankles which were  causing much of the pain. I considered myself somewhat well informed, but had never heard of pseudo gout, which is now referred to as CPPD disease.  Little known, it only gets one short paragraph in the older Merck Manual.  He prescribed an old drug, Colchicine, now often called Colcrys and it changed my life.  No immediate relief but within a month much of the sharp pain had subsided.  Doesn't' always help everyone, but worth a try.

The main reason I am writing this is to explain how important the AFP test is.  It has saved my life.  After 24 years of periodic phlebotomies and AFP tests, the number spiked from always low single digits to 39.  My oncologist immediately had me get an MRI and it showed a small tumor.  Within weeks I'd had it blasted with RFA, radio frequency ablation which was a painless day procedure. Unfortunatley, the dr. informed me that it was now in my DNA and that I could someday produce another tumor. 

After 2.5 years tumor free, another one showed up last June in an MRI.  It was in the middle of covid lockdown and because it was small and newish the dr. said we would monitor it which meant waiting another three months to the next scheduled MRI.  In July I had my last joint replacement surgery, my right knee, which was day surgery!  I didn't resist because with the covid I didn't want to linger in the hospital.

About the time of surgery I started to feel lousy.  GERD, reflux indigestion etc.  It got worse so I pressed for a CT scan which the radiologist had suggested in his June MRI report.  It was late September by the time it was scheduled.  Unfortunately the tumor had lodged near a good blood supply and the tumor had more than tripled from 1.5 cm to over 4.5 cm.  Because it was close to a blood supply surgery was eliminated.  a TAE or trans arterial embolism was suggested.  That is one without chemo infused in the beads.  I had that in mid November.  My nausea was increasing gradually, but after the embolism I suffered profound, constant nausea.  Even water made me gag.  From late November to early January I dropped from 180 to 145lbs.  Thought I was on my way out and was making my peace.  In January my AFP number was 386!  A month later it had dropped to 216.  In early March I met with the oncologist and a doctor from the radiation clinic.  They suggested that I get a radioactive bead inserted into the left lobe of my liver, then a month later have the surgeon remove much of the right lobe including the tumor.  I politely declined.  Having had  six major surgeries and unintended consequenses like MRSA infections afterwards, I would not allow myself to endure another.

I personally believe in the power of fasting.  It can have profound effects.  I also believe in RSO or Rick Simpson Oil.  I also decided to attack the tumor metabolically with a combination of IV vitamin C, and tried Ozone Therapy and Intermittent fasting to 'starve the sugars,' in the tumor.  I had nothing to lose.  

After nearly two and a half months of the, "I think it would rather die than to continue enduring this nausea," I would wake up for a nocturnal shishi (Hawaiian) in the early morning and be thinking of breakfast.  That was the first sign of some improvement.  So now in early March the same day I met with the MDs who suggested surgery, I had my third monthly AFP test and it was 14!  I wanted a more defined picture of what was happening since the scans were not clear, and requested a Petscan.  

Three weeks ago my latest AFP test was >2.  A week later I had the Petscan and the report came back, " No active cancer in the liver and no cancer anywhere else in the body."  Amen and thank you Universe.

So if I've learned anything from all this it is the value of the AFP as an early warning signal for tumors.  It is easy to feel victimized by HH and suffer depression, but nothing like a close brush with dying to spring you out of any funk that you're in.  I am humbled, grateful and happy to still be here.  As they say in Hawaii, IMUA.  Forward.  Now I can get on with bugging my wife and friends.

Best of luck to you all and stick with the phlebotomies and AFP tests.