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
Thursday, December 10, 2015
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.”
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 machine, 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.
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 machine, 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"...so...just "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!
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"...so...just "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!
Friday, September 18, 2015
Second Follow-Up part 2: Good News
Read Part 1 here.
Tuesday morning we got up bright and early to hopefully attend Mass at the National Shrine, which the website listed as happening at 7:30AM. Unfortunately, when we got there, all of the entrances were blocked off. We guessed it had something to do with Pope Francis' impending visit, but I can't say for sure. The website says the shrine is open 365 days, so...hmmm.
We headed over to NIH to grab a coffee from Au Bon Pain (it may be French, but I think the letters p-a-i-n should be stricken from all signage at a hospital). We sat in the open dining area on the ground floor, waiting for my CT images to be copied to CD.
We got our hands on the disk at 11:00 a.m. and headed to the Business Center to investigate. The radiologist's report, which had been so encouraging last time, gave no new information this time. My impression of it was, "Patient has a bunch of lung nodules. Other organs OK." The report contained no mention of the clinical trial at all.
Patrick loaded the images onto the computer and began measuring lung tumors while I compared his findings to the previous scan's data. We had hoped that this time we might have trouble finding some of the smaller tumors because they had disappeared, but no. They were all still there.
Some tumors, especially in the right lung, measured smaller this time. Tumors in the left lung were a little harder to pin down, but it looked like there had been some shrinkage there, too. RECIST criteria, which is what the researchers adhere to, dictate that the measurement is to be taken along the tumor's longest axis.
I was expecting to see big changes, like the ones we saw during the first follow-up, and so I was not sure what to make of the data we were gleaning. I was glad that it was almost time to meet my doctor so that I could get his take on the situation. To be honest, I went into the clinic feeling like a kicked puppy.
A nurse took my vitals, and weight, and showed us to an exam room. Upon the doc's arrival, he brought us out to the hallway, to a giant computer monitor. He pulled up three sets of images, one from March (prior to treatment), one from August (first follow-up) and the set from the previous day. He showed us how the target tumors (four of the seven tumors are considered "targets" for the purposes of the study) were measured. He confirmed that the tumors had decreased in size since the prior scans.
Back in the room, it wasn't sinking in. My concern was that the rate of decrease had apparently slowed down. It seemed like a bad sign. The doc said that "everyone in this whole department is happy about these scans, except for, apparently you..." He said that the tumors are at 25% reduction. We talked about the difference between the first set of scans and this one. Ever-so-slowly I was able to agree that what he was telling me was good news.
An attending physician joined us later, and happened to notice the plotting of data points related to the tumors' sizes that Patrick and I have done. I explained my tumor-naming convention (which I admit is a little "out there"). At that point my doc commented on the "Nerd Level" in the room. hahaha... When the attending physician asked, "Just what kind of engineers are you?" My doctor piped up, "Circus. They are circus engineers."
Good one, Doc.
Later, The Guy (principle investigator) visited us in the exam room. He said things like, "We could not have expected results any better than what we've seen." He was smiling. A lot.
Whoa...what?!
They want more scans in a month. I'll be there.
Tuesday morning we got up bright and early to hopefully attend Mass at the National Shrine, which the website listed as happening at 7:30AM. Unfortunately, when we got there, all of the entrances were blocked off. We guessed it had something to do with Pope Francis' impending visit, but I can't say for sure. The website says the shrine is open 365 days, so...hmmm.
We headed over to NIH to grab a coffee from Au Bon Pain (it may be French, but I think the letters p-a-i-n should be stricken from all signage at a hospital). We sat in the open dining area on the ground floor, waiting for my CT images to be copied to CD.
We got our hands on the disk at 11:00 a.m. and headed to the Business Center to investigate. The radiologist's report, which had been so encouraging last time, gave no new information this time. My impression of it was, "Patient has a bunch of lung nodules. Other organs OK." The report contained no mention of the clinical trial at all.
Patrick loaded the images onto the computer and began measuring lung tumors while I compared his findings to the previous scan's data. We had hoped that this time we might have trouble finding some of the smaller tumors because they had disappeared, but no. They were all still there.
Some tumors, especially in the right lung, measured smaller this time. Tumors in the left lung were a little harder to pin down, but it looked like there had been some shrinkage there, too. RECIST criteria, which is what the researchers adhere to, dictate that the measurement is to be taken along the tumor's longest axis.
I was expecting to see big changes, like the ones we saw during the first follow-up, and so I was not sure what to make of the data we were gleaning. I was glad that it was almost time to meet my doctor so that I could get his take on the situation. To be honest, I went into the clinic feeling like a kicked puppy.
A nurse took my vitals, and weight, and showed us to an exam room. Upon the doc's arrival, he brought us out to the hallway, to a giant computer monitor. He pulled up three sets of images, one from March (prior to treatment), one from August (first follow-up) and the set from the previous day. He showed us how the target tumors (four of the seven tumors are considered "targets" for the purposes of the study) were measured. He confirmed that the tumors had decreased in size since the prior scans.
Back in the room, it wasn't sinking in. My concern was that the rate of decrease had apparently slowed down. It seemed like a bad sign. The doc said that "everyone in this whole department is happy about these scans, except for, apparently you..." He said that the tumors are at 25% reduction. We talked about the difference between the first set of scans and this one. Ever-so-slowly I was able to agree that what he was telling me was good news.
An attending physician joined us later, and happened to notice the plotting of data points related to the tumors' sizes that Patrick and I have done. I explained my tumor-naming convention (which I admit is a little "out there"). At that point my doc commented on the "Nerd Level" in the room. hahaha... When the attending physician asked, "Just what kind of engineers are you?" My doctor piped up, "Circus. They are circus engineers."
Good one, Doc.
Later, The Guy (principle investigator) visited us in the exam room. He said things like, "We could not have expected results any better than what we've seen." He was smiling. A lot.
Whoa...what?!
They want more scans in a month. I'll be there.
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