January 2, 2016

New Year Update, 2016



Back in September I wrote that I was taking a chemo break until December in order to improve my strength and energy.  I wrote about a program that I had signed up for at the Anschutz Health and Wellness Center.  I have been following their program and have more energy and strength, and I’ll write an entry describing the program and my results later in the month when I get my final results.

Back to Chemo

In the middle of December, I had a CT and resumed chemo on New Year’s Eve.  The CT before by doctor’s appointment came back with scary word such as,

“interval worsening of the patient's…neoplasm with increase in overall tumor burden as seen by increased thickening and progressive necrosis,”

”extension into the chest wall,”

“intubation of the diaphragm with extensive mass effect upon the underlying liver,”

”near-complete collapse of the right middle lobe and partial atelectasis of the right lower lobe,”

“significant mass effect upon the superior vena cava which is almost completely effaced”  (meaning collapsed),

“frank invasion of the pericardium,” and

“suspicious thickening of the anterior medial left pleura and left sternalis muscle, concerning for metastatic disease.”

The report was arresting because there had not been any such language, at least not in the ones that were released to me.  This report came from a CD of my images which differed from the one automatically released to me through the hospital’s website..

The report seems to have gotten my oncologist’s attention as well because he came in and talked about a clinical trial that I might qualify for (I didn’t), and he said he had some other options in mind as well.

National Cancer Institute Clinical Trial

In response, I started looking at clinical trials online and came across one at the National Cancer Institute (NCI) in Bethesda, MD.  I sent an email asking for information earlier in the week and completed my screening questionnaire yesterday.  I should hear from a referral nurse on or before next Thursday.  I am excited about the trial and want very much to be included.  Here’s a link for anyone who might be interested in the trial: https://clinicaltrials.gov/ct2/show/record/NCT01583686

And here’s a summary of what I understand the trial involves.

1.  If I am accepted, I’ll go to the NCI for a thorough workup.

2.  Then they will remove white cells from my blood and raise billions of new, experimental white blood cells which will be infected by a retrovirus.  The virus inserts DNA into the white cells which will allow them to kill my meso cells.

 3.  Cells display signaling molecules on the outer surface that tell the immune system what kind of cell they are, friend or foe.  When the immune system has been exposed to a foreign cell, it becomes sensitized and kills others as it finds them.  As normal cells change to become cancer cells, they have to mutate in some way to hide from the immune system or they would never develop into full-blown cancer cells.  My kind of mesothelioma cells express an almost unique signaling molecule, called mesothelin, that identifies them, but they also tell the immune system that they are not foreign.  Supposedly, the experimental white cells will have the ability to identify the mesothelioma cells and kill them.

4.  When the experimental cells are ready, drugs will be used to kill many of my white blood cells, and they will be replaced by an infusion of the experimental cells back into my bloodstream.  I will also be given a drug to stimulate the new cells.  I would be in the hospital for probably four weeks as they monitor my progress and problems.  It will not be pleasant, but it could be lifesaving, and I am excited about the possibility of being involved in this research, even if it is as a subject.

If I am accepted, I will document my experiences on the blog.

David