I came upon another 6 month scan to review progress on the parotid tumor and submental node. The node has stopped growing and is holding at the same size or 1 mm smaller. I think this is probably measurement error. I am reminded of the old "silly mm longer" cigarette commercial and glad it is a silly mm shorter in this case. The soft tumor in the parotid still does not show up on scans and maybe because of the metal crowns on the pre-molars.

Probably more noteworthy is what happened after the contrast was given. I received Gadavist which is a based on gadolinium, a paramagnetic rare earth element that is highly toxic in its original state. It is chelated to allow the body to process it through the kidneys. If the gadolinium does not flush fast because of any kidney impairment it becomes highly toxic once it gets into tissue. Part of the process involves creation of scar tissue in skin, connective tissue and organs that is often fatal. Creatinine should be checked before using this contrast. I discovered this was used on several scans I had post treatment when my creatinine was elevated.

Fast forward, I have thousands of muscle twitches (fasciculations) per hour head to toe. It started in the neck and branched out from there. Total muscle atrophy and fibrosis of the muscles is what happens after the fasciculations. When they gave me the contrast within 60 seconds almost all the fasciculations ceased for the first time since 2006! I understand how this could have happened and I believe the Pentoxiphyllene was critical to improve vascular flow to allow the chelated gadalinium to pull out the magnesium and calcium from places it was accumulating. Regardless, it has greatly improved some neuromuscular problems. Of course, I immediately went to the gym to see if I could get more blood pumping into the nerves and muscles.

I am able to lay on my back now without feeling like a fish out of water and I can lay on either side without my arms constantly jerking from the back muscles fasciculating. I wake up every day in amazement that everything is still calm. I have very infrequent and weak fasciculations in some of the same spots but nothing near the magnitude or frequency of the past couple of years.

Pentoxiphyllene is one of the additional missing links as well as Gadavist. Funny how we stumble on things unexpectedly. My legs are nearly rebuilt completely and about 50% of the upper body. No pain meds this year and no laxatives after 20 a day from September 15, 2012 up to January 14, 2013. Lifting almost the same weight as I did after treatment recovery. Riding the bike more than ever. I could probably do 120-150 miles a week but the docs are saying to ratchet back to 2 x per week...30 miles max.

Amazing life testimony, Uptown, who "Lives life LARGE with no quit in this guy!" Thank you for your inspiration!
Barbara (CG)

Overall gooc news, Ed. I can't have CT contrast due to my creatine levels, but did have a MRI with some type of contrast or dye that doesn't effect the kidneys, so I was told. If a CT is needed, I would need to have IV before, and after, to flush the kidneys out. My last PET/CT scan they were setting me up for the CT contrast, and told them no, and had to call the doctor, so it wasn't given, but made me drink that fruity cocktail mix. Keep up the good work.

Paul, all MRI contrast using gadalinium were given an FDA Black Box Warning to screen for kidney issues before using. Gadavist was only approved in 2011 and is the 6th gadalinium contrast product and received a "less sever" risk of NFS (nephrogenic systemic fibrosis) on its Black Box Warning. NFS was only discovered around 1997 and although classified as a skin disorder, it can also include organs and muscles plus increase mucin production which would cause excess secretions, i.e. mucous.

The chelation process removes heavy metals and is believed, in theory, to remove residual radiation from the body although I don't believe it can be verified through testing.

Gadalinium based products are used for CNS scans.

Thank you Barbara.

Great to read about such a positive outcome to a seemingly benign event. You and many others have dealt with much more adversity than I and yet continue to inspire and live life to the fullest.

Thank you for the inspiration.

"T"