Avemar, the first 2 days

I've take supplements before in my day, and never had any problems with them.  Avemar, sold as AWGE in the states, is no different.  At least, so far.  It's only been 2 days and my biggest complaint is the AWFUL taste.  It is supposed to have a "natural" orange flavor, and the first you smell of it is something close to orange, but once you drink it...it is the flavor of rotten orange mixed with yeast and who knows what else.  It makes sense that you get such a fermented flavor, I'll just have to find something to mask it better...

Available in my lifetime?

Could the most effective treatment be available in my lifetime?  Well maybe.  At least I might be in the right place in treatment for it.  According to the following article in salon, immunotherapy has really gained some ground.  And with continued successes (40%) more clinical trials might be available.  I might be in a good place to benefit as most of the trials I might have access to are phase 1.

It looks like the trial from the article was this one
 
On another note, I'm never posting using my tablet again;  tedious.

Interesting supplement

At the stage I'm at, and for anyone on clinical trial, they prefer that you don't take any sort of supplement or herb, basically anything out of the ordinary diet while you are engaged in a trial.  I suppose it is for your safety, but my first instinct is to ensure a quality(accurate) experiment result.  As much as they can with the human being.  I have been diligent in observing the dogma and avoided supplements and herbs, etc, as I've gone along.  Now, as I'm off study and trying to find my next step, I'm free to go ahead and try some of the many supplements I have or have read about.

Believe me, most aren't even necessarily cancer fighting, just health promoting(hopefully).  There are some theories that supplements actually foster a biosystem in which cancer thrives...  I'm not convinced of that.  As far as health promoting supplements go, I have taken multivitamins and trace mineral supplements in the past and don't feel they were to my detriment.  Recently I stumbled upon Moringa, which as a plant is one of the most useful that I can perceive.  Every part of it is useable; the leaves are edible and contain a high amount of nutrients, the roots can be used to filter and sterilize water, and a variety of other things can be done with the plant.  I haven't taken any myself, but am anxious to.

But, I'm most anxious about a supplement I'd never heard of before last night.  It's sold as Avemar, but the supplement is fermented wheat germ extract.  What's interesting about this particular supplement is that it has gone through some clinical testing and been shown to benefit the cancer patient.  Specifically, "it has anticancer, antimetastatic, and immunomodulatory effects."  And those effects have been demonstrated in clinic!!!  I haven't been able to find details about it specific to my diagnosis, but I ordered it, and am anxious to start trying it and hope to benefit from it!

Trying to make plans

I saw on one of the message boards, I am on, that there is a trial out there for an anti-CD-L1 drug, the drug is referred to as MPDL3280A.  The study I found is open label, multi-center, multi-cancer type, etc etc  and there had been one other trial of the drug that showed really promising results and was well tolerated in patients.  The trial I was looking at:  NCT01375842 had two sites close by, within a flight, and I reached out to them for participation.  Only got one response, and although nice to get a response, they indicated sarcoma can't participate.  That seems like garbage to me; the trial indicates solid tumor and for crying out loud, I've got plenty of that.

I'm discouraged by that response, so looking into other options.  I checked MD Anderson, just for the heck of it and, frankly, they don't have anything I'm even remotely interested in trying.  So, I'm writing it down here of any of the things I might want to try:
1.  The SF trial - I still feel I have a good chance to get on, but I'm not going to wait for it.
2.  New Castle Disease Virus (NDV) in Glioblastoma Multiforme (GBM), Sarcoma... - I'm always interested in immune response options, and this could be interesting, but it's only just been approved and travel to it might just be out of reach.
3.  ENMD-2076 - maybe...It's a pill like Pazopanib and I did well on it...
4.  TriN 2755 - sounds like an interesting infusion, problem is it's a dose escalation trial which...I'm not afraid of, but may mean I don't get effective dose for a while.  Not to mention travel might again put it out of reach.
5.  Dendritic Cell Vaccine With or Without Gemcitabine Pre-Treatment for Adults - more immune therapy options...might be worth the travel.
6. Cabozantinib for Adults With Advanced Soft Tissue Sarcoma
7.  alisertib
8.  Her2 Chimeric Antigen Receptor Expressing T Cells in Advanced Sarcoma
9.  Anti-KIR Antibody in Combination With an Anti-PD1 - Sarcoma is accepted, but no slots open now, 50 people on list ahead of me, but I am on the list.
10.  

#.  And the search goes on.

Spoke too soon.

They called me back last afternoon and informed me that I had to wait until I have another scan, showing growth, before I can enter the trial.  I think that's garbage since some areas did show growth while others didn't on my most recent scan.  Need to make a plan of how to proceed, but I'm pretty sure that any trial I try to get on will have this same stumbling block...  Unfortunately, I have to wait a while before a new scan can be performed.

New trial to start soon

I got THE call I was hoping for today!  They have an opening for me on the trial; do I want it?  Heck yes, please, very much so.  They are sending my information to the scheduler and going to try to get me started this week or next!!!  That way we can avoid having to perform another CT and use my most recent one.

I'm anxious to get started, curious how the drugs will treat me, and hopeful that it will work.  One thing I've thought about this trial since I first heard about it, over a year ago, is that HDAC inhibitors might be the answer for me.  Also, the trial is in combination with Pazopanib, which I have had what my old doctor described as a better than most response.

Monday's meeting

Had a pretty good meeting on Monday.  They seem to be a smaller facility, so I'm kind of thinking I'll get better attention, maybe?  Dr. seemed very knowledgeable and caring.  Seemed more patient centered.  But also a bit more cavalier, which, to me is a big plus.  I don't think anyone is solving cancer by following the "rule book." 

They were surprised that I had tolerated full dose Pazopanib considering that to be the limiting factor in their trial.  I though it was weird that people were having trouble on Pazopanib...  I was glad to hear that they should have a spot for me in 1-2 weeks.  The sooner the better.  I'm anxious to start and confident that this trial will treat me very well.  Also, logistically it is already treating me well apart from the tolls in and out of SF.  But that bay bridge is pretty impressive with a huge span.