Sunday, October 25, 2015

Third Follow-Up at NIH

My scans this time showed some shrinkage.  By RECIST criteria, wherein the longest axis (only) is measured, my fellow arrived at a value of 2% reduction from last month's measurements.  This puts me at 27% reduction compared to baseline.  "Partial Response (PR)" begins at 30%, so I have a little bit to go to reach that benchmark.

What was most encouraging was to see how one of the biggest and least-resectable tumors appears now.  On the CT scan, it looks like a hole is developing right through the middle of it! In reality, it isn't an actual hole; certainly it is less dense in the middle. Its longest dimension remains the same, however, so this is an example of where RECIST criteria falls short.  Measuring only the longest diameters fails to capture the sort of disintegration that is obviously happening.

More worrisome for me was the fact that one tumor showed "hot" on the PET scan. I asked about scar tissue (it is very close to the staple-line remaining from April's lung wedge surgery), but the doc is confident that it glowed because of cancer, and not scar tissue (and not due to TIL infiltration either). I had hoped the PET would show the lungs dark, indicating that the tumors are all necrotic now, but that is not the case.  Soon!  Maybe soon the cancer will all die.

No new lesions were identified, thank God.

Since I didn't reach Partial Response (I was 2mm short by my husband's reckoning) I will return in November for the next follow-up.

Two millimeters! The length of a mustard seed*. Like last time.

Here is a link to a presentation that Dr. Rosenberg gave, where he mentions my case (he is the second speaker on this video). Here is a talk that he gave a few months earlier.

*Matthew 17:20: "...if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”


  1. This sounds like overall encouraging news, especially the way you describe the RECIST criteria not necessarily being a good measurement for things like a tumor disappearing from the middle outwards. I would imagine that you are well under a standard deviation within 30% (ie. statistically 27% might well be 30% considering the power, if I am wording this correctly and remembering my statistics class correctly haha!). My point is that I'd want to know how they selected 30% for partial response (arbitrary? based on follow-up studies of patients? based on response in cell culture?). I'm sorry they found one hot tumor in the PET (thank God for no new ones!!) -- at this point in the trial, do they do anything else for that?

    Sorry if I am asking too many questions!

    I am really so glad to hear of a positive update!! Continuing to keep you in my prayers!

  2. Never too many questions! : )
    RECIST = Response Evaluation Criteria In Solid Tumors. It's a published protocol that is widely used. I haven't researched it, so I don't know how they came up with the numbers. In immunotherapy though, a patient reaching 70% reduction is considered "CR" (complete response). In other therapies (surgery, chemo) the patient must reach 100% for CR.
    As far as my treatment goes: NIH has done what they will do. If I need any other therapy or treatment, it will happen outside of NIH. I think they are "done" with me, except to monitor my response.

  3. Oh I see! I didn't realize it was a measurement that is generally used (ie. beyond this trial). Thanks for your answers. Cheering you on as always from Philly! :)