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!
Saturday, April 15, 2017
Sunday, February 5, 2017
NIH on NBC
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:
There I am, undergoing apheresis to supply dendritic cells (antigen presenting cells) and "feeders" for the TIL. Gahhhhhhhh!!! Five hours of lying completely still is not exactly fun.
New York Times article (this is how Today learned of the story): 1 Patient, 7 Tumors and 100 Billion Cells Equal 1 Striking Recovery
The WSJ and Philly Inquirer also ran stories.
Cancer Breakthrough Aids One Patient, Raises Hopes for Many
In a first, immune therapy tames mutation in colon and pancreatic cancers
and a follow-up by the Philly Inquirer:
Cracking the cancer code: Can immune therapy treat tumors?
To find out more about the treatment I had, this web page answers some questions about TIL therapy. It includes a link (see item 5) to start the application process too!
A post on Joan Lunden's Face Book page:
Here's the Today Show segment:
There I am, undergoing apheresis to supply dendritic cells (antigen presenting cells) and "feeders" for the TIL. Gahhhhhhhh!!! Five hours of lying completely still is not exactly fun.
New York Times article (this is how Today learned of the story): 1 Patient, 7 Tumors and 100 Billion Cells Equal 1 Striking Recovery
The WSJ and Philly Inquirer also ran stories.
Cancer Breakthrough Aids One Patient, Raises Hopes for Many
In a first, immune therapy tames mutation in colon and pancreatic cancers
and a follow-up by the Philly Inquirer:
Cracking the cancer code: Can immune therapy treat tumors?
To find out more about the treatment I had, this web page answers some questions about TIL therapy. It includes a link (see item 5) to start the application process too!
A post on Joan Lunden's Face Book page:
Monday, December 12, 2016
Grateful
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:
Our Lady of Guadalupe, pray for us.
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...
Incomprehensible.
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".
Incomprehensible.
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!
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...
Incomprehensible.
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".
Incomprehensible.
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.
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 knows how that tumor progressed in spite of TIL therapy! His work was published in the NEJM (see link below).
It may be helpful to understand 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 the 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. (Update 6 years later: my scans show no remnant of any tumor.) They were killed by my immune system! Killer T-cells infiltrated the 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). Pieces (called "peptides") of mutated KRAS proteins are the stuff that my HLA binded with to mark my tumor cells for destruction. KRAS is vital to our cells, but mutations in this gene can lead to cancer.
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 mutated 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 an HLA molecule. 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 term "possible detection" 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 that mutation. Killer T-cells are the immune system's soldiers, but they are highly specific in what they "see." Most types, it seems, are blind and deaf to cancer cells, even when HLA is doing its best to let the T-cells know there is a problem. Why?
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). These receptors are the embodiment of programmed randomness. Our bone marrow churns out millions of T-cells in our lifetimes, each equipped with unique TCRs that are constructed (as far as we know) at random in order to comprise a host of potential future armies against an equally stunning array of potential onslaughts. Each TCR 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 threat 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 (KRAS G12D), and I inherited an HLA type (C*08:02) that has the ability to show that bad guy to the killer T-cell.
When the killer T-cell connects with its target, the HLA-bound mutant 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, he was able to expand 30 million of my mutation-specific T-cells to 148 billion. These are the cells that comprised my TIL therapy. These are the cells that killed six known tumors in my lungs. Perhaps even more astounding: These are the cells that are still circulating in my system, keeping the KRAS G12D mutation from causing any more tumors for (I pray) the rest of my life.
Tumors are a collection of cells that have lost at least one important capacity that normal cells have--the ability to die. As tumors change over time, mutations accumulate. Tumors can evolve in ways that give them an advantage over the immune system. That is exactly what happened in the case of the one tumor that progressed even after TIL therapy. That tumor's cells developed an advantage that allowed them to escape detection.
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 present, it must mean that the hero HLA allele resided on the copy of the chromosome that went missing from the progressing tumor's cells. The other chromosome of the pair was a different allele; one that doesn't recognize the mutation, and so the sneaky tumor left it alone.
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 the HLA complex to shout, "Look here!" the T-cells passed on by as if those tumor cells were normal, healthy cells.
I can only echo the Psalmist who wrote:
The End, A Surgeon's Knife:
Similar to the way cancer didn't eliminate just the single version of the HLA gene that threatened it (C*08:02) but the entire copy of chromosome 6 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.
Links to media:
Read the Lab Guru's article for the NEJM
Three newspaper reporters interviewed me for articles:
New York Times
Wall Street Journal
Philadelphia Inquirer
Joan Lunden interviewed The Guy and me for the Today Show.
Sneak peak for that story on FaceBook here.
Tom Marsilje's blog about my case.
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 knows how that tumor progressed in spite of TIL therapy! His work was published in the NEJM (see link below).
It may be helpful to understand 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 the 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. (Update 6 years later: my scans show no remnant of any tumor.) They were killed by my immune system! Killer T-cells infiltrated the 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). Pieces (called "peptides") of mutated KRAS proteins are the stuff that my HLA binded with to mark my tumor cells for destruction. KRAS is vital to our cells, but mutations in this gene can lead to cancer.
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 mutated 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 an HLA molecule. 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 term "possible detection" 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 that mutation. Killer T-cells are the immune system's soldiers, but they are highly specific in what they "see." Most types, it seems, are blind and deaf to cancer cells, even when HLA is doing its best to let the T-cells know there is a problem. Why?
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). These receptors are the embodiment of programmed randomness. Our bone marrow churns out millions of T-cells in our lifetimes, each equipped with unique TCRs that are constructed (as far as we know) at random in order to comprise a host of potential future armies against an equally stunning array of potential onslaughts. Each TCR 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 threat 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 (KRAS G12D), and I inherited an HLA type (C*08:02) that has the ability to show that bad guy to the killer T-cell.
When the killer T-cell connects with its target, the HLA-bound mutant 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, he was able to expand 30 million of my mutation-specific T-cells to 148 billion. These are the cells that comprised my TIL therapy. These are the cells that killed six known tumors in my lungs. Perhaps even more astounding: These are the cells that are still circulating in my system, keeping the KRAS G12D mutation from causing any more tumors for (I pray) the rest of my life.
Tumors are a collection of cells that have lost at least one important capacity that normal cells have--the ability to die. As tumors change over time, mutations accumulate. Tumors can evolve in ways that give them an advantage over the immune system. That is exactly what happened in the case of the one tumor that progressed even after TIL therapy. That tumor's cells developed an advantage that allowed them to escape detection.
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 present, it must mean that the hero HLA allele resided on the copy of the chromosome that went missing from the progressing tumor's cells. The other chromosome of the pair was a different allele; one that doesn't recognize the mutation, and so the sneaky tumor left it alone.
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 the HLA complex to shout, "Look here!" the T-cells passed on by as if those tumor cells were normal, healthy cells.
I can only echo the Psalmist who wrote:
I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well.
Psalm 139:14 NASB
The End, A Surgeon's Knife:
Similar to the way cancer didn't eliminate just the single version of the HLA gene that threatened it (C*08:02) but the entire copy of chromosome 6 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.
Links to media:
Read the Lab Guru's article for the NEJM
Three newspaper reporters interviewed me for articles:
New York Times
Wall Street Journal
Philadelphia Inquirer
Joan Lunden interviewed The Guy and me for the Today Show.
Sneak peak for that story on FaceBook here.
Tom Marsilje's blog about my case.
Wednesday, July 6, 2016
Milestone
Last Friday was the anniversary of "Cell Day". I sent my husband out for a Pepperidge Farm Chocolate Cake just like the one they gave me on the day of the transfusion.
On Sunday we packed up the kids and headed for Frankenmuth, where I was registered to participate in a 5K Walk. That evening, I raised a glass to toast my esteemed immunotherapy fellow, who soon would be turning over my case to someone else. I chose a drink that he likes best. (This was less of a sacrifice than I was expecting!)
We watched fireworks with our kids, and some dear friends. Our youngest was enthralled by the spectacular explosions and declared his appreciation (loudly) after almost every round. As the smoke from the finale cleared, he announced in the darkness of the night that it had been "the best day of (his) life".
The 5K took place the following morning. I was nervous! It seemed to me that all of my health problems began after I ran a 5K in 2011.
Maybe 5K races are bad luck!
My oldest daughter and my husband accompanied me. They kept me to a challenging-enough pace for me, but one slow enough for them to chat effortlessly with each other. Neuropathy in my feet (from stupid FOLFOX) caused some pain, and my lungs...well, they did OK. I wasn't breathing like I felt I needed (wanted) to, but I was breathing adequately, apparently. I could not chat! My lungs would let me walk, or talk, but not both. We walked at about 3.5 mi/h and I finished in 51 minutes.
In movies sometimes a dramatic moment is depicted as happening in slow-motion. That is what happened to me at the finish line. In slow-motion, I saw my foot hit the mark, and it felt like a literal weight had lifted. I could almost hear the woosh as it flew off my shoulders. I've never experienced anything like it before.
When I crossed over the finish line, it felt like a new beginning.
On Sunday we packed up the kids and headed for Frankenmuth, where I was registered to participate in a 5K Walk. That evening, I raised a glass to toast my esteemed immunotherapy fellow, who soon would be turning over my case to someone else. I chose a drink that he likes best. (This was less of a sacrifice than I was expecting!)
We watched fireworks with our kids, and some dear friends. Our youngest was enthralled by the spectacular explosions and declared his appreciation (loudly) after almost every round. As the smoke from the finale cleared, he announced in the darkness of the night that it had been "the best day of (his) life".
The 5K took place the following morning. I was nervous! It seemed to me that all of my health problems began after I ran a 5K in 2011.
Maybe 5K races are bad luck!
My oldest daughter and my husband accompanied me. They kept me to a challenging-enough pace for me, but one slow enough for them to chat effortlessly with each other. Neuropathy in my feet (from stupid FOLFOX) caused some pain, and my lungs...well, they did OK. I wasn't breathing like I felt I needed (wanted) to, but I was breathing adequately, apparently. I could not chat! My lungs would let me walk, or talk, but not both. We walked at about 3.5 mi/h and I finished in 51 minutes.
In movies sometimes a dramatic moment is depicted as happening in slow-motion. That is what happened to me at the finish line. In slow-motion, I saw my foot hit the mark, and it felt like a literal weight had lifted. I could almost hear the woosh as it flew off my shoulders. I've never experienced anything like it before.
When I crossed over the finish line, it felt like a new beginning.
Subscribe to:
Posts (Atom)