Follow-Up #20

Hello again!

I'm back with another report of NED--no evaluable disease. Huzzah!

On clinic rotation this time I met with Dr. Yang, who was the first-ever attending physician that I met at NIH. It was Dr. Yang who screened me for the TIL trial back in 2015. I often recollect his parting words of that day, "Mrs. Ryan, the stars really seem to be aligned for you." He was referring to the slow-growth of the tumors thus far, the fact that I had declined more chemotherapy after the first line failed, and that I had found the TIL trial at all.

At that time, I did not consider that my path to NIH was "aligned" in any way (they rejected me twice after all), but Dr. Yang's use of the word "stars" that day did make me remember the miracle of Our Lady of Guadalupe (the stars on her cloak match the constellations as they were when she appeared to Juan Diego). It was a comfort to me.

This clinic visit was a happy one! Though Dr. Yang wore a surgical mask* his smile was evident nonetheless. He decided that my next scans should happen in two years' time rather than annually. "After that," he said, "we'll discuss whether any more scans are necessary."

Imagine that!

Today marks the 8th anniversary of being declared NED. This is the day, eight years ago, that I woke up with one fewer lung lobes and zero cancerous tumors. I shall toast with a celebratory G&T this evening!

*NIH still requires masks in all "patient areas." Mask stations were in place at all reception areas, and we were expected to change to a fresh mask each time we entered a different patient area.

Follow-Up #19

Greetings, readers. I am late to update.

In October last year, I suffered a compression fracture to my spine. When I could bear the thought of riding in a car, I saw my G.P., who Rx prednisone, which was a problem. After undergoing TIL treatment, we patients are to avoid steroids in perpetuity (and I have the Medic-Alert bracelet to prove it...I'm not actually wearing it anymore, however. Shhh...).

Me: I can't take steroids.

G.P.: You can't? Why not?

Me: Because of the clinical trial. They told me "no steroids, forever because they are bad for lymphocytes."

G.P.: I am more concerned with your spine right now than with your immune system. Here's the Rx. Have a nice day.

What to do? Usually, I trust this G.P., but I wasn't keen to contradict the instruction given by The Guy at NIH. I sent my immunotherapy fellow an email. His response:

Steroids are an immunosuppressant and could therefore interfere with the key mediator behind your amazing response. For that reason we kindly ask that you continue to avoid steroids...

And so I didn't take the steroids. Instead, I lived with an ice pack pressed to my spine almost constantly for weeks. I swallowed lots of Advil and Tylenol and it was no fun! No fun at all. To date, this pain was worse than even the accidental spleen biopsy of 2014. Thank God for the numbing effect of ice, or I may have lost my mind. 

In the spring I was feeling much, much better and took the annual trip to NIH for follow-up nineteen. I met the new attending doc, and had a little chat about the news regarding my former Lab Guru and the success he had when using my T-Cell receptors to treat a patient with pancreatic cancer. 

Me: It seems they're being very careful not to tie this case to mine, or even to the NIH. Why do you suppose that is the case?

Doc: Well, there are a lot of rules about what they can and can't say. I mean, it's not like you're Melinda Bacchini. Her case was written up in the New York Times! Anyone can talk about her! 

Me: << confused silence because, hello: NYT Article >>

That conversation ended right there. The doctor went on to say, "Maybe it's time we stopped your follow-ups. You're doing so well. I will look into that."

A week or so later, after not hearing from the attending doc on this point, I reached out again to my fellow. As I suspected, NIH is not stopping my follow-ups yet. I will return in the spring for another one. I have to say, I'm feeling invisible to this new attending doc!

The good news is: I am still NED! and still very, very thankful to be. This month marks ten years since my initial diagnosis. All glory to God, and thanks to the NIH and the amazing people who worked on my cells, and who took care of me so well.

Follow Up 17

I'm happy to report that my scans were clear!

This visit was a little different, due to COVID-19 restrictions. First off, my longsuffering husband was not allowed in the building with me.

The building seemed quite empty with no visitors. COVID screening and mask-donning happened just inside the entrance. I imagine these precautions will continue for quite some time.

You might think that after six years of visits to Building 10 that I'd know the place like the back of my hand. Well. That is not at all the case. I am a person who could get lost on her own doorstep. Thankfully, I did make it everywhere I had to be. Most people will be able to use NIH's "Take Me There" app (found here) to navigate inside Building 10. However, I am not most people. My ancient Tracfone cannot accommodate such new-fangled wizardry.

Another change from standard protocol is that I was not required to drink oral contrast prior to my CT scan. Oh frabjous day! It was music to my ears. Instead of drinking a liter of iohexol, I was treated to four cups of refreshingly cool, clear water. I was instructed to drink it with a straw, leaving my mask in place as much as possible.

I will return in one year's time, God-willing.

The Five Year NED mark was reached on Wednesday.
Five years of good health. Five Christmases. Five Birthdays. Twenty-Five kid-years--so much happens in a year. I am so thankful to still be here, and a part of it all.

To God be the glory!

Follow-Up #15

Follow-up #15 happened at the end of February.
Still NED!

Earlier this month was the anniversary of the first-ever time I was clinically recognized to have "No Evaluable Disease". Three years ago, a thoracic surgeon at NIH removed the only remaining living cancer from my body. I remember waking up in the ICU disoriented, weak, and heavily-drugged, but more-importantly, cancer-free.

Cancer-free! I remain so today. To God be the glory, now and forever. Lord, never let me forget what good was done to me. I reiterate my deepest thanks to every person who worked on my case at the National Institutes of Health--what an outstanding facility--and to those who still follow up with me. I pray that many more lives will be saved by the work of those dedicated to solving cancer's mysteries.

To celebrate the anniversary, my former immunotherapy fellow--though separated by miles--and I each raised a glass "to NED." I toasted every NIH doctor and nurse that I could remember, starting with him. My glass emptied before I could name them all (even with small sips, haha).

New this week: Dr. Yang requested some blood. They now know how to build (for other patients) the particular HLA that successfully attacked the cancer that was threatening my life. Now they want to study the other five HLAs in my blood to see if any of them also recognize cancer mutations, particularly G12D. If so, they'll sequence those genes in order to add another "recipe" to their cancer-killing agents catalog. "We want to build a library of sorts," he said. To that end, a local phlebotomist drew some blood and then FedEx transported it to the NIH in Bethesda, Maryland. Go, Science!

I didn't want to post a picture of blood (gahh!), so here you go instead.

Three Year Celebratory cocktail

FIVE YEARS and follow-up 14

At the end of August Patrick and I drove to Bethesda for follow-up #14. All of my scans came back NED. WooHOO!!!

This time, to my great delight, I was joined in the CT waiting area by my dear former fellow, who happened to be at NIH for a visit that day. To be polite I offered him some of my oral contrast, but he wisely declined.

Pro Tip: Crystal Light On the Go packets make iohexol (oral contrast) much, MUCH more palatable. I highly recommend the wild strawberry flavor.

Also this visit:  I finally got to meet the person whose news story led me to the NIH. She was the first patient with solid tumors who responded to TIL therapy back in 2014. We had been in contact many times before, but had never met in person--until this visit!

We even took a photo with The Guy, himself.
Here we see Responder 2 (me), The Guy, and Responder 1 together for the first time.

OP3 at NIH--August 21, 2018

But wait, there's more! Here's a link to an article that mentions my case:
 

Moderna thinks the immune system can be recruited to help fight KRas where small-molecule drugs have failed. In 2016, researchers at the National Cancer Institute reported on discovering a person whose immune system developed a T-cell response to cancers with KRas... “That was really the watershed moment for the field,” says Tal Zaks, Moderna’s chief medical officer.

 

Cruel November

My dear friend Tom Marsilje died this week. I spent the wee hours of the morning today re-reading some of the many texts, emails, and facebook messages we shared since 2015 when we "met" online.

In January of 2015, Tom went public with his Terminally Optimistic blog. He, my husband, and I met at an online support group called The Colon Club. That same month, I started a thread on The Colon Club pertaining to the clinical trial that I was hoping to (and eventually did) get into. Tom was one of the first to reply to the thread. He was excited about the trial, and stated that he had been considering it a possibility for himself, if needed.

Our community on The Colon Club celebrated when Tom was filmed for part of Ken Burns' documentary, Emperor of All Maladies, because of his work on the cancer drug, LDK-378 (ceritinib). Fellow Colon Clubbers flung good-natured jabs at him after the show aired. He always responded with humor and grace. He took fighting cancer completely seriously, but he could always laugh at himself. It was one of his most endearing qualities.

We found common ground beyond our stage IV cancer diagnoses. We both found sleep elusive, which made the time zone difference between us irrelevant; he had two young daughters (I had two young sons...plus three more); we both married engineers; and Tom had lived in Michigan until he left for grad school. We kept close tabs on each other. We joked about arranging a marriage (or two!) between his kids and mine. We previewed each other's blogs, and we prayed for each other often. More times than I can count, he was the first one I'd message whenever I had urgent (good or bad) news to share. He was always there.

After reading his first blog posts, I encouraged him to share his blog with another online community where I hung out, colontown. Initially, he told me he was "spread too thin to join another group". He asked if I would post his blog link there so that he wouldn't have to divide his attention with yet another outlet. I encouraged him (again) to join so that he could post it himself. He finally relented with one caveat: 
"I'll join as long as it's OK if I don't post too frequently."

Funny, Tom.

Tom not only joined the group, he transformed it. That spin-off page started with just three members, myself included, who had participated in a clinical trial. We patients were there to spread awareness and answer questions from other colontown members about the clinical trials we had joined. When Tom came onboard, he turbo-charged that space with unending links to more and more clinical trials almost daily. With the help of a mutual friend and advocate, Maia, plus a couple of research scientists--another dear friend and fellow patient, Danielle Maatouk, among them--who he recruited to help, even more patients would be reached. This Facebook page has become a resource unlike any other in the world. Other trial pages spun off from this first one; each bears Tom's name in tribute to him for his zeal for educating patients about clinical trials.

I had the honor of meeting Tom in person for the first time in July, 2016. He was enjoying what he called a cannonball life that summer, but also investigating potential treatment options in Michigan. My house was a short car trip from his destination, so my husband threw some steaks on the grill in anticipation of his visit. We discussed science, and cancer, and life. We laughed like we had known each other all our lives.

Too often Tom and I grieved when one after another of our mutual friends would die. Several died last November, including Danielle. We both agreed that November was the cruelest month. And now it has taken Tom, too.

Rest in Peace, dear Tom. I hope that the friends we knew were there to greet you. I hope that in the other world, you have found the knowledge you sought so fervently your entire adult life. I wish that you could whisper what you've learned to those you left behind.

I will think of you often, tears streaming at times, but always with your words, "To Life" at the forefront of my mind. You gave so much, and worked so hard. Be at rest now, and live forever with God, the Author of life.

Friends forever.