[VDC]

So Cal Gal,
Honestly I have been very hesitant to share my story because it is so very simple and doesn't compare in any way or shape to most of the things all of you have gone through. I cannot begin to compare to your lives. Even, now when requested, I hesitate.

I was diagnosed in September 2016 with high grade (grade 3) , ER-, PR- DCIS. That was after a rather traumatic stereotactic biopsy where I developed a 3.5 inch by 1.5 inch by 1.5 inch hematoma....in about two hours. Quite painful to say the least.

Due to mishandling at my local facility I decided to travel to the Mayo clinic for a second opinion. A new biopsy revealed HER2 3+, KI-of 30%, and extent of disease about twice what my local facility had said 2.7 cm. or a little over an inch. There was a "rush" to go to surgery but I found a clinical trial that I really wanted to join. By early December I was found to be a good candidate for the study but with the holidays was told I should wait and fly there in early January. Over the Christmas vacation I started doing research of my own and decided to add supplements to my life. I added things like Melatonin and Curcumin as well as others that were currently in clinical trials to determine their efficacy. I figured if they had enough merit to be in clinical trials, then it couldn't hurt to add them to my life.

In January I was informed that the PI (principle investigator) of the study was moving his research team to Moffit and the trial would be on hold for as long as 18 months. That was simply too long for me to wait so I asked my Mayo oncologist for another evaluation to determine how much my disease had grown. Early February imaging revealed no change in extent of disease. My oncologist was stumped and just kept muttering that high grade SHOULD have progressed.

I found the experience encouraging and since there was no other explanation decided that the supplements must be helping to make this cancer unhappy. I then applied to another clinical trial that was due to start March 1st. (this was early February) ...and while I waited I did more research and branched out with supplements that were not currently in clinical trials. When the clinical trial had not gained IRB approval as of April, I asked my oncologist for more imaging. Results of the imaging on May 8th, showed 30% decrease by volume or 20-25% in each of two dimensions.

My continued decision to wait for the clinical trial caused my oncologist great consternation and frustration. She would have liked me in surgery the next day! But I decided given the regression in disease, I would wait until either the trial was given IRB approval OR my imaging showed progression of disease.

The trial was granted IRB approval this week. But,....now I'm wondering if I want to wait until July to see what new imaging shows. If this disease has shrunk, what could happen in two more months? Obviously I"m doing something right?

Now, as for the research that I do. Yes, you are correct that it takes a LOT of time and I have had to learn a new vocabulary to do it. But it can be done. In our cases we need to look at not only what the research says but also if it is in vitro (in the petri dish), in vivo (in the body), or ex vivo (blood or other fluids taken from the body after a treatment and then applied to a petri dish sample). Of course the in vivo carries more weight than the other two. The other factor that has been much harder to ferret out, has been the effect of any given supplement on ER, PR positive cancer versus ER,PR negative cancer. Sometimes it is near impossible to find any reference to it. In the in vitro and ex vivo cases you can look at what cell lines are used. Those cell lines each have their own hormone, and HER 2 status. Once you know which ones are which, it becomes easier to tell how a given supplement MIGHT affect our "brand" of cancer.

And in some cases, there are mixed research that contradicts each other. That appears to be the case with Trans Resveratrol although most of the PRO cancer aspects appear to be associated with hormone positive cancer. Very few appear to be associated with hormone receptor negative cancers, although there are some.

Since my last appointment on May 8th, I have continued to research and add to my repertoire of supplements. With each addition I do wonder if I am making the correct choice on that particular supplement. The human body is SO complex that it is impossible to predict every reaction. But I am willing to take those risks.

Anyway, sorry for the rather long winded response. If you have any questions about any particular supplement that I take, feel free to ask. Each one was researched extensively! I can probably point you in the direction of the research that caught my attention!