Follow-Up #5 RESULTS

Earlier this week, by RECIST criteria, the target tumors in my lungs measured 46% smaller than they were pre-treatment. This puts me officially in the "partial responder" camp.  wooHOO!

I captured one image from the CT scan to post here, so you could get an idea of how "Target 3" is changing.  The white areas inside the blue oval are cancerous tissue--a nodule right next to my heart.  The darker areas within the tumor show that it is becoming less dense! (The white blob above the text in the image is a cross-section of a normal blood vessel.)

One tumor (not shown) still looks pretty gnarly on the CT, but it is in an area clouded by scar tissue, so it's difficult to determine what is what at that location.  All of the rest of the tumors seem to be breaking up, becoming hollow, or shrinking. No new tumors were seen, and my CEA level remained at 1.1 (same as in November).

Excitement!  Relief!  Gratitude!  HOPE!

Happy New Year

Yesterday we took down our Christmas tree.  I was dreading that event, not only because it involves a lot of mess, but because having a fresh, fragrant tree decorated in memories and multi-colored lights smack-dab in the center of our home is, to me, one of life's most glorious peculiarities.

I am happy that Christmas 2015 left a wake of joy behind--not at all like 2014.

On the very last day of 2014, I met with a Big Deal physician at a branch of a university hospital here in Michigan to get a second-opinion on my case, and to find out if that institution offered any clinical trials that might help me.

It was a frustrating visit. The doc seemed to contradict himself. He said that I was "extremely healthy", but also that I was suffering from "a disease for which there are no known therapies." He agreed that the National Institutes of Health would be "the best place" for me, but tempered that with, "The chances of getting into a trial there are about 2%."

Thanks for nothing, doc. One thing I've noticed--and this doc is not the only one who did this--is that once they realize my case is "terminal", I become invisible to them. Instead of talking to me, they talk about me. No longer are we making eye contact, though I try. Usually, the physician will turn toward my husband and start speaking to him. Maybe it's a coping mechanism. Maybe they aren't aware that they're doing it. I notice. I am not dead yet. Look me in the eye and you'll see...

I tried not to let this guy's comments and manner affect me. I'd rather hope for the best than expect the worst. Where there is life, there is hope!

At the end of this month, I'll be back at NIH for follow-up #5. Last visit, I met criteria for Partial Response, pending a confirmation scan.  Follow-up #5 will include that confirmation scan. Suspense takes on a new sort of gravity when it's your own story being written! I will let you know what the docs discover.

Flashback to Wildebeest

I'm living too much "in my head" these days, thinking back to where I was a year ago.  Saturday (12/12) will be the first anniversary of the day the cancer was confirmed metastatic.  The medical world had a new term for my condition, terminal.

I think a flashback to my visit with the ophthalmologist during chemo two years ago is in order.  It was a crazy time that I don't want to re-live, but it shows that even in chemotherapy treatment, there was a lot to laugh at if you looked for it.

It is mind-boggling to think of myself going from a diagnosis of "terminal disease" to the brink of "partial response to TIL therapy" in the space of a year.  Craziness!  Some describe cancer as a journey.  For me it has been a riot--ludicrous in a way, but dreadfully serious in another.  What to make of it?  I have no idea!  I just hope that I can help someone else along the way.  I think that's the overarching goal of every human life:  service.

Speaking of helping...

Update on the TIL trial.  NIH has added what is referred to as a "check-point inhibitor"* (an anti-PD-1 antibody) to the protocol.  Pembrolizumab will now be given to patients who are enrolled on this trial in addition to tumor-infiltrating lymphocytes (TIL).  See the updated trial description here. Note:  I have not, and will not receive pembrolizumab. My treatment phase is over; I'm now in the monitoring phase.

*My friend, Tom^†, wrote an excellent article describing check-point inhibitors in Part 1 of his Fight CRC article.  See Part 2 for more on immunotherapy.

^†super genius

Follow-Up #4 Results

Meet the tumor my doctors call "Target 3". I call it "José".  This a CT image of an inoperable, cancerous lung tumor. It is much too close to my heart. (That blobby-looking thing just beneath the blue oval is a normal blood vessel, and the massive thing in the upper left is my heart.)

The first image shows how Target 3 appeared in June, 2015, prior to the TIL immunotherapy trial. At that time, it measured about 3 cm from end to end. RECIST criteria is concerned with only the measurement of the longest dimension, which hasn't changed much in five months, however, it's plain to see that the tumor is starting to change. The TIL are still doing their job!

disintegrating tumors = most grateful patient!

Officially, I'm now at 30% reduction from baseline. If next visit we see similar results, I'll enter the world of "partial responder" (PR). Can't wait!

Happy Thanksgiving!!!

Scanning Time Again

Scans during Thanksgiving week?  Yes.  I scheduled that.

Last time, the oral contrast did a number on me, and so now I worry that it will happen again.  I asked my doc if he would let me skip this unpleasantness at the upcoming visit, but he rejected the idea.  I wonder if his opinion could be swayed by 50-pounds of Halloween candy.

hmm...

Last time I was this close > <  to achieving "partial response" by RECIST criteria.  I don't know what it takes to make lung tumors shrink, but I vowed to walk daily until my return to Bethesda, in an effort to boost my immune system.  It hurts my feet (neuropathy) but I do it anyway.  Maybe walking will kill off some of the damaged nerves for good.  ha.

Other news!  An article about the TIL therapy has been published in Science*.  This one made me realize just how incredibly basic my understanding is.  When I think I know something, I learn another something that makes the first revelation miniscule in comparison.  Still, what I do understand fascinates me.  It must be a very exciting time to be a cancer researcher--it seems like they are on the brink of unlocking cancer's final secrets.

Since my last post here, I got to speak to the lovely Melinda on the phone.  Hers is the case that rocked the world of immunology a couple of years ago.  I read an article about her case before I knew my own was metastatic, and it is because of the publicity surrounding her that I found the trial at NIH.  She is now two years out from the same treatment I received, and doing great as a "partial responder".

Next up:  Results.  Prayers for good news are gratefully accepted!  If swinging chickens is more your style, I'll take that, too.  It's all good.

*the KRAS patient referred to is not me.  This data was collected prior to my treatment.

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.”

So Many Scans

Today I ate a horrible zero-carb meal at the hotel's breakfast buffet.  I am not a fan of the buffet-style breakfast.  Typically when I partake of a hotel's free breakfast, I stick to cold cereal and pre-packaged yogurt.   Those were both a no-go today though.  My PET scan instructions recommended a high-protein, low-carb diet for 24 hours prior to the scan (plus a 6-hour fast preceding the scan).  I was compliant!  Well.  Except for Brussels sprouts at dinner last night.  Not sure how those stacked up carb-wise.  They were prepared with bacon though, so at least that part should've met the mark.

I was at the hospital from 8 AM to 8 PM.  The hospital is chilly, and I decided to leave my coat in the car so I wouldn't be lugging it around all day.  That meant that I was cold and hungry pretty much the whole day, which was kind of a bummer.

First up, blood work.  I was given a cubicle number to report to, which was staffed by a man of few words.  It was too bad, because he had a really great voice!  He didn't smile at all, and he barely spoke.  It was a bit uncomfortable in that respect, but to his credit, I didn't even feel the needle go in.  Yay, Quiet Guy!

I had to ask about the urine-pregnancy test.  Quiet Guy didn't have an order for it.  He thought probably if they needed to know, they could get their answer from some of the blood that was just drawn.  Knowing how procedure-driven NIH is, I decided to check with radiology.  Radiology was quick to call the research nurse who put in an order for a "STAT Urine Pregnancy Test".

Back to the Phlebotomy department I went.  NIH is 0 for 4 at ordering a pregnancy test for me w/o a reminder.  Why this is not part of the procedure, I do not know.  But!  Crisis Averted--the test was done in plenty of time to accommodate my first scan.

Next, I was led to a comfy recliner in a tiny little room.  Radioactive glucose was shot into my veins and I was cloaked with a blanket straight from the warmer.  Being Still was my job for the next 45 minutes.  Lights were dimmed, and the door closed.

The scan itself involved no drinking of contrast.  That was a welcome surprise.  It was over in about 20 minutes.

CT was the next stop, a couple of hours later.  Still no food for me, but I did get to drink 900 ml of Iohexal, which is a clear liquid that tastes like contaminated water.  I had to laugh when the lady gave me the bottle of contrast solution and said, "And now please enjoy three glasses of this contrast."  The word "enjoy" was not one I would use in the same sentence as "contrast".  But OK.  I had fifteen minutes to down the stuff.  I am finding that with each subsequent CT-scan, the drinking of the contrast gets more and more difficult.  It must be psychological, but somehow that assumption doesn't make the process even a little bit easier.

Later, an I.V. was placed in my right arm and I was sent to wait.  Nausea hit, and I willed myself to not vomit, for fear of the knowledge that I'd be required to drink the dreaded liquid again.  That would be hard to endure.  It was a close one!  Thankfully, the CT went without a hitch and I was out of there in an hour or so.  The scan itself was just a few minutes long.

More time went by.  Had I felt better, I would've ventured to the third floor to say hello to the nurses and docs.  I felt truly yucky though, and chose not to move.

I made it to MRI very early and waited, and waited...I was quite early, so the wait was expected.  I was finally led to a machine that was different than any other MRI I've had.  It felt a lot like a coffin.  I am not an overly large person, but this thing was a tight fit, and not pleasant!  I spent forty or so minutes inside the MRI listening to the banging, whirring, dinging, and buzzing of the machine.  When the I.V. contrast was pushed, I could taste it, which was a bit horrific.  I had never had that experience before.  It was not yummy.

Finally, the test was over.  I was released from the machine, my I.V. was removed, I donned my own clothes (I had been wearing disposable "scrubs") and I left the hospital in search of FOOD.  We went to a steakhouse where I ordered a giant steak, and ate almost all of it.  That is probably why I am still awake at nearly 2 AM.  ha.

In the morning, my plan is to retrieve a CD of PET and CT images from the Medical Records office to a) see whether anything glows on the PET, and b) take measurements of the lung tumors. 
Good news would be that the PET is dark and the tumors have shrunk (or disappeared).

We shall see.