Wednesday, August 2, 2017

Follow Up 12

Once again, I traveled to NIH in Bethesda for blood work and scans. All is well--I am still NED. What's more, the attending physician (at long last) has extended my next visit to six months out instead of three. Hurray!

Life is GOOD and health is a tremendous gift that I pray I will never again take for granted.

Saturday, April 15, 2017

Eleventh Follow-Up

Follow-up eleven (what?!) happened earlier this week. No cancer was found on any scan. On the seventh of this month I passed the one year NED mark. This amazes me!

BEST PART of the visit was eating ice cream with friends.

WORST PART was saying good-bye to my dear former fellow. The gravity of the event hasn't sunk in yet. I don't think it will until the next time I go back and he isn't there.

Today I got to experience one of the milestones that cancer often steals from families. I witnessed my oldest child receive an award from the Honors College at her university. I remember well the day she started her college career--it was the same day that I was told, "You have cancer." I wondered then if I'd see her graduate. I wondered if my disease would interrupt her education. I so did not want that to happen. I thank God that she did such excellent work, and that I am here (!!!) to write about it.

Easter Sunday is only a few hours away. I cannot wait to celebrate!
He is risen, just as He said. Alleluia! Alleluia!

Sunday, February 5, 2017


Joan Lunden visted the National Institutes of Health early in January. She interviewed me and The Guy (together, because I am a big chicken) on my 10th follow-up post TIL therapy.

Here's the Today Show segment (thanks, Maia!):

apheresis. It's not as fun as it looks.

This web page answers some questions about TIL therapy. It includes a link (see item 5) to start the application process too!

Here's a promo clip for the sake of posterity:

Monday, December 12, 2016


Welcome to the 100th post.
Today is the Feast Day of Our Lady of Guadalupe! I have a special devotion to Mary under that title. The words she spoke to Juan Diego in 1531 gave me courage in 2014, when I learned that chemo had failed me. "Do not fear this sickness...," she said to Juan, referring to his uncle. I believe those words are meant for all of us.

I am humbled and honestly a bit overwhelmed by the attention that is coming my way because of the recent article in the NEJM. Other outlets have picked up the story, and it has been a little crazy for the past couple of days.

I am thrilled for the scientists and other medical staff whose work has been recognized in this public way. My greatest hope is that they will continue to see more and more successes in immunotherapy. The men and women who worked on my case are much more deserving of the kindness and attention that I am now receiving--I was just trying to stay alive, as any one of us would do. The authors of the NEJM article--and many others who were not named--have my ongoing and deep respect. In truth they had it long before the results of my case were known to anyone--even them.

I am so grateful to everyone who prayed for me, and especially those who shared the story with others and asked them to pray, too. In the Christmas letter that I wrote in 2014, just after learning that my case was considered terminal, I wrote:

I joyfully anticipate the day when we'll all "be amazed and glorifying God", saying together, just as the evangelist recounted, “We have never seen anything like this.”  Mark 2:12

Our Lady of Guadalupe, pray for us.

Thursday, November 17, 2016

Follow-up #9

My scans were good! The radiology report included the word, "unremarkable" a total of five times. That is a record number of times for me.

When a radiologist deems an organ "unremarkable" it means that no evidence of injury or disease is seen on the scan. It is one of those DoctorSpeak words that mean something completely different to the uninitiated.

Question: Who wants to be "unremarkable"

Answer: Cancer patients

Overshadowing this visit, sadly, was news that my friend and fellow cancer patient, D., had passed away suddenly. We had made plans to meet at NIH this week. Our visits overlapped, just as they had last winter. We were in contact weekly--often daily--for over a year. It didn't make sense. She was supposed to be visiting NIH for harvest surgery and scans...


Consistent with the roller-coaster theme of this visit (the highs were as extreme as the lows) The Guy met with me at my clinic appointment. He confirmed that the New England Journal of Medicine will be publishing my case. He also told me that I am "an historic figure in medicine".


Also this trip, I said good-bye to my dear Lab Guru. He has exhausted every extension that The Guy could arrange. I am confident that he will continue to do great things in his very own lab, just as he did during his time at NIH. I look forward to the opportunity to visit his new digs one day (and hopefully not for the purpose of apheresis).

Finally, a story of hope. Tonight, a friend on 3NW at NIH awaits her TIL with sheer joy (and maybe some fatigue after the conditioning chemo). It will happen soon! I pray she sees success. I believe that she will!

Wednesday, August 10, 2016

Follow-Up #8

We are home from another follow-up at NIH. It was all good news! The clinic meeting, for the first time, was boring. My scans showed nothing new, and nothing growing. I won't be scanned again for four months. Woo! I can live (literally, ha!) with boring follow-ups.

A highlight of this visit:  I got to meet a fellow patient who became a fast friend. I have high hopes for her, for great success with this trial. She's as curious (maybe moreso!) as I am about all things TIL, and our visit slipped away too quickly. We will meet again!

News:  The Lab Guru has submitted an article about my case to a journal. I hope to have more news on that later.

Another highlight: Visiting with my Top 3. Two docs, and a nurse. So happy they were all available!

If you're interested in enrolling in the TIL trial, the link is here.
A recent post on how cell therapy works is here.

Under "Highlights" on the right side bar, you'll find a link labeled "Key Posts" which can serve as a short-cut to navigating the blog for particular steps in my cancer Riot.

Sunday, July 31, 2016

Sneaky Tumor

Breaking News!
The Lab Guru shared some stunning information about the non-responding, sneaky tumor that was surgically removed three months ago. After analyzing it, he now has a theory about why that tumor progressed in spite of TIL therapy! He cautioned that the results haven't been fully proven yet.

First, I want to cover how immunotherapy did work to kill many tumors.
Disclaimer 1: I am neither a doctor nor a scientist.
Disclaimer 2: What follows is my understanding of the details of my own case.

Many Thanks to the brilliant doctors and scientists at NIH who answered loads of questions at virtually every visit (and between times, too!) with patience and competence.

What worked:
Six tumors in my lungs are now dead, dead, all the way dead. They were killed by my immune system! Killer T-cells infiltrated my tumors to seek and destroy cells that harbored the baddest bad guy. This was possible in part because I inherited a hero HLA allele. It makes a particular protein molecule that worked in concert with killer T-cells to eliminate almost every tumor. HLA has the ability to mark cells that are "broken". Its job is to grab stuff from inside cells, bind it, and then present that stuff outside, on the cell surface.

More on the good guys, later! The villain in my case is a mutation to a gene called KRAS (KAY rass). The stuff that HLA enlisted to mark my tumor cells for destruction are actually pieces of mutated KRAS proteins (peptides). KRAS itself is vital to our cells, but when mutations happen, trouble begins.

Killer T-cells can't peer inside a cancer cell (or any other kind) to see what's going on there, but the HLA lives there. If a cell becomes deranged, as happens in cancer, HLA will grab its evidence (the peptide) that something is way wrong, and thrust it outside the cell while still holding it in its grasp. This is the only way that a killer T-cell can sense its target; it must be bound to an HLA molecule on the surface of a cell.

Hundreds of types of HLA alleles exist, but each person inherits only a few. Each type creates a molecule that has a unique binding surface. Think of molecule-sized Lego bricks--if the peptide can snap together with the HLA molecule, the two form a complex. When this happens, the peptide gets swiftly escorted to the surface, and the courier (HLA) announces to the world outside the cell, "Look what I found!"

Unlike Lego bricks, not all peptides will fit with all HLA molecules. Some won't fit with any. But, happily, it was found that for the mutation that I had, and the HLA type that I inherited, the two did fit together and HLA was able to bind the criminal and set it up for possible detection (and execution!) by my immune system.

Another layer of complexity:
Note the use of the word "possible" above. Just because the tumor cell, thanks to HLA, had the ability to present the mutation to my immune system, it was no guarantee that my immune system could recognize it. Killer T-cells are the immune system's soldiers, but they are highly specific in what they "see." Most types, it seems, are blind to cancer cells.

Each T-cell type is capable of recognizing only one particular antigen (bad guy), which is often referred to as its "target." T-cells sense their target with receptors (TCRs), which are the embodiment of programmed randomness. We each have millions of unique TCRs. Each one is highly specific to its target and to no other. Because TCRs are so hyper-focused, we need lots and lots of varieties of them if we are to remain safe from the constant onslaught of incalculable numbers of viruses, bacteria, and even cancer cells. Lucky for me (understatement!) my body produces a few different types of  T-cells whose target is the baddest bad guy, and I inherited an HLA type that has the ability to show the bad guy to the killer T-cell. When the killer T-cell connects with its target, the HLA-bound peptide, it sends a signal to the tumor cell to self-destruct! Also, when a T-cell finds its target, it replicates itself and can go on to find and kill more tumor cells. Thanks to the Lab Guru's expertise, 30 million of my mutation-specific T-cells were expanded to 148 billion. These are the cells that comprised my TIL therapy. These are the cells that killed six known tumors in my lungs.

Tumors are a collection of cells that have lost at least one important capacity that normal cells have, and that is the ability to die. As tumors evolve, mutations accumulate. Sometimes, they'll mutate in a way that gives them an advantage over the immune system.

So, what about that seventh, insidious, tumor?
What the Lab Guru discovered about the recalcitrant tumor is that it was missing one copy--healthy cells have a pair--of Chromosome 6. Chromosome 6 is where the HLA genes live! Since one copy of the chromosome was still there, the theory is that the hero HLA allele must've resided on the copy of the chromosome that went missing. The other chromosome of the pair most-likely did not include that particular allele.

The Sneaky Tumor's Game:
Any tumor cell that was absent the hero HLA was essentially cloaked from my immune system. The killer T-cells could no longer sense their target (even though it was still present) because the hero HLA--the thing with the ability to display the bad guy--was gone! Any cells that were missing that particular Chromosome 6 (either the one from Mom, or the one from Dad) now had an advantage that would help them survive. When they multiplied, those new cancer cells, too, were missing a copy of Chromosome 6. Killer T-cells wouldn't kill those cells, because without that particular HLA complex, the T-cells had no target.

How's that for Science?! "Amazing" doesn't come close.

The End, A Surgeon's Knife:
Similar to the way cancer didn't eliminate just the gene that threatened it but the entire chromosome the gene resided on, my surgeon didn't just excise the sneaky tumor--he removed the entire lung lobe it resided in.
It was a medical necessity to remove the entire lobe, but also something more: Poetic Justice.

Read the Lab Guru's article for the NEJM about my case here.
My friend Tom Marsilje, medicinal chemist/blogger has a unique way of explaining things. Read his take on my case here.
Joan Lunden interviewed me and The Guy for the Today show. Sneak peak on FaceBook here.