Sunday, July 27, 2014

National Institutes of Health, Bethesda, MD: Got back from a whirlwind of a trip on early Saturday morning. It's not official yet, but it sounds like I've been accepted (they had me obtain an extended visitor's pass). The team of doctors I met with on Thursday will go over my case with the study's principal investigator on Monday, and I should get a confirmation by the middle of the week.

[For those interested, a link to the clinical trial may be found here.]

A very positive thing that I found out is that I have far fewer tumors than I was led to believe; the team informed me that there are only two (the "dotting" or "spotting" that my local oncologist tells me that I have turns out to be either small cysts or scar tissue). The less-positive news is the discovery that I have a small tumor in my lung (it was first noticed in June from my scan at the Center in Eugene, and was confirmed at NIH). As the first doctor I met with said, this is a "technical" Stage IV (the very thing you don't want to hear with a cancer diagnosis) but it isn't widespread throughout my body as is typical with this designation.

The first tumor is scheduled to be completely removed via surgery sometime next month. From that tumor, they'll remove lymphocytes that, for whatever reason, are present within the growth but unable to attack it effectively. A further step the team plans to take with me that is beyond the limits of the trial is to genetically sequence the tumor (this will take about two months), then code the extracted lymphocytes to attack the sequenced tumor. This will be method to shrink the small tumor in my lung and any remaining cancer in my body. From the quick overview they gave me, it sounds like the process will take at least three months.

It's a highly experimental treatment, but it's something I told the team that I'd like to pursue. Unfortunately, they have no results to give me about previous successes or failures; I'd be a bit of a pioneer in this regard.


2 comments:

Eliza said...

Yay(?) for being a pioneer! (?) :-)

Big good thoughts for you. It's hard to get good and bad news...

Unknown said...

Pioneers get all the arrows, as someone clever once said.

Thanks. You'll have seen the above post by now, but the news seems overwhelmingly good at this moment. I chatted with my patient navigator around noon today (Monday) and she said that this particular study is *the* one that the doctors were all excited about.

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