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.”

Tuesday, October 20, 2015

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 macine, 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.

Thursday, October 15, 2015

Anticipating Follow-Up 3 at NIH

In a few days, I will be heading out to Bethesda again.

In store for me:  three scans in one day.  The PET will require a modified diet for the 24-hours leading up to it.  According to the written instructions, I may eat "meat-only sandwiches without bun or bread and without vegetables or other toppings" "meat", then?  I guess?  Who writes this stuff, I wonder.  Sugar and carbs are a no-go.  I will stick with eggs and bacon.  Or (to simplify) bacon and more bacon the day prior to the PET.

Fasting will be the name of the game on scan day!  Scan 1 (PET) requires 6 hours of fasting prior.  Scan 2 (CT) requires 4 hours of fasting.  Scan 3 (MRI) requires 4 hours of fasting.  That is a lot of fasting in one day.  It will mean the downing of extra contrast, too.  gack!

Since my last post, I've gotten word on three people in various stages of participating in this same trial.  I am filled with hope for each one of them!

If you're a crc patient and wondering, "What is all the fuss about?", watch this in-house lecture given by The Guy himself, in April.  He gave a more-recent (but shorter) talk in September (the immunotherapy presentation is the second half of the video).  If this approach to curing metastatic cancer interests you, please check out this link.  The trial is open to many types of cancer--go look!

Life these days is sweet.  Chemotherapy started for me in October two years ago.  Since that time I've never been able to walk more than about two miles at once mainly due to neuropathy in my feet/legs (a side-effect of oxaliplatin).  Yesterday though, I was able to go further!  I went 3.7 miles, and today I managed 3 miles (over some wicked hills, too).  My energy is back, and the beast of cancer is losing its hideous grip on me.
I am so thankful!