The first blizzard of 2016 to hit the Washington D.C. area dumped 29.2" at the airport we hoped to fly into. All flights were cancelled on the weekend leading up to my appointment (on Monday) at NIH. Happily, by Monday morning the snow had stopped, and the airport had been plowed. Our plane landed at BWI just a few minutes past its scheduled time.
We knew something was up when we reached the rental-car desk. We were the only customers in sight. "Maybe it's an early Monday thing," we thought to ourselves. No. It was a "snow" thing. When we got onto the beltway, heading to the hospital, we had the entire highway almost all to ourselves. This was a first! Lanes were sometimes disappearing into snowbanks, but the areas that had been plowed were clear and dry. "What's the problem?" we wondered.
We found out later that the problem is snow removal, or to be more accurate: poorly managed snow removal. I will spare you my ranting on this subject, except to say: A little training could go a long way.
At phlebotomy, I took a number, as usual. What was not usual is that the automated voice that alerts the next patient to come forward was announcing my number even as I was taking the ticket from the tech. That's service! When I confirmed what I was hearing by glancing up at the digital monitor attached high up on the wall, I was surprised to see the screen blank, except for one number. Mine. This never happens. Usually the screen is filled with numbers; the waiting room full of people. Not today. Today, the hospital was a ghost-town.
Off I went to cubicle #1. Guess who was waiting for me there? It was the Celine Dion fan himself. Of course it was. I was ready for him this time, though. I answered all of his questions in song. haha, no I didn't. That would be crazy. I just spoke in French. (I am lying. I only know swear words in French.)
Later on, we decided to head over to the CT area to see if they would take me early. I walked up to the desk. The waiting area was almost empty.
Me: Hi. I'm a little early. My appointment isn't for another 30 minutes. I was wondering if you could take me early.
Tech [calling up my record on her monitor]: OK. Um. See. (furrowed brows) Your appointment has been cancelled.
Me: Cancelled?! Does it say why?
Sleen's Brain in a split-second: OMG. There is only one reason they would cancel my scan. I'm pregnant! Whaaaaat??!?!!! omgiampregnant wait. no. AAAAACK! couldibepregnant?!? What will Pat say? What will the doctors say? ohhhhhhhhhhhhhh.my.goodness.
Tech: No, it doesn't say why. They've rescheduled you for tomorrow.
Sleen's Brain: OK...OK...OK. I'm not pregnant then (virtual collapse onto the floor) But...tomorrow?! This is a Big Deal scan. The one that will confirm my response to the treatment! If I don't get scanned until tomorrow, then there is no way I'll get the images before I meet the doctors in clinic and I'll have to hear the news first-hand from them. I can't take that kind of suspense. I will have to stalk my doctor and watch him as he reviews the scan. He won't allow that. I'm doomed!
Tech: Well. Ima going to get you in now, since you're here. Have a seat.
I've never been so happy to drink contrast as I was just then.
It turns out that the rescheduling was due to the snow. Snow. Not pregnancy. Just snow. Way to give a cancer patient a heart-attack.
Friday, February 5, 2016
Thursday, January 28, 2016
Follow-Up #5 RESULTS
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!
Monday, January 11, 2016
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.
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.
Thursday, December 10, 2015
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
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
Wednesday, November 25, 2015
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!!!
Friday, November 20, 2015
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.
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.
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.”
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.”
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