Yesterday I returned to Hopkins for my fourth nivolumab infusion. We moved it to Monday instead of my usual Tuesday so I could fly to Florida for spring break. Jennifer and Garrett had flown down on Saturday, and Kirsten and I were planning on joining them after my infusion. I found that Mondays at Hopkins' cancer center was much busier than Tuesdays. My blood was drawn an hour late, which meant that my labs were an hour late, which meant that the pharmacy was delayed in preparing the custom-made nivolumab dose. All this would have been fine, but I had a plane to catch!
While I was waiting, I met with Dr. Dung Thi Le, the principal investigator at Hopkins for this trial. I asked her about the math in the supplemental reading of my CT scan, which showed that the size of two of my targeted tumors had decreased from 32 mm to 16 mm. She explained that 32 mm was the sum of the short axis measurements of those two tumors as shown in the baseline scan on 2/10/15. 16 mm was the sum of the the short axis measurements of those same two tumors from my 3/24/15 scan.
I knew that Dr. Le did not specialize in bladder cancer -- she's a GI oncologist -- so I asked if she was surprised at the 50% reduction in size of my tumors after just three infusions. Although I was her first bladder cancer patient in this trial, she said that she had received favorable reports from other trial locations regarding the effect of nivolumab on metastatic bladder cancer. As a result, she said that she was not surprised by the reduction in my tumors, because "we know it works on bladder cancer." Then she smiled and said that she was still very pleased to see the results.
She added that the trial had originally sought about 400 patients, and more than 800 have enrolled. There has been very high demand for this immunotherapy drug. And in seeing my results, one can understand why.
Dr. Le pulled up the side-by-side images of the before and after CT scans of my tumors on the computer screen, and showed how the nodes had reduced in size. Her researchers previously had carefully made the measurements and saved them on the scanned images. I asked about the size of my supraclavicular node -- the original metastatic site -- but she was unable to pull up that image. It was apparently not one of my target nodes, so I'm not sure how much that has changed in size.
We discussed how long I would keep going on the trial. She said that their goal was for me to have a "complete response" (or CR) on all of my tumors. CR is defined as the tumors shrinking to less than 10 mm on the short axis. CR is not the same as being "cured" of cancer, however -- the traditional definition of a "cure" is five years with no detectible disease. If and when I achieve CR, then we will discuss with the oncologists how much longer I will stay on the nivolumab. That decision will be influenced by the guidelines for the clinical trial. One of the things that Bristol Myers Squibb wants to find out is how long the drug works to keep the metastatic cancer suppressed. There is insufficient data on how long nivolumab works on mets BC after CR has been achieved, and the trial can last as long as two years, as long as the drug appears to be working and the patient is willing.
But we're getting ahead of ourselves. My new goal is to get to CR first. So I made my way over to the infusion area and waited. I was supposed to start my infusion at 12:30, and my flight from BWI to Florida was at 4:20. Infusion takes at least an hour. I was still waiting at 1:30. My nurse said that the nivolumab had still not arrived from the pharmacy. I told my nurse about my flight, and so he got me set up in a chair and went to bug the pharmacy. Finally, at 2 pm the drug arrived and I was hooked up. I was calculating times in my head - how long to drive from Hopkins to the airport, how long to park and get to the terminal, how long security would take, etc. It would be tight.
At 3:02 pm, the infusion was done, and I bolted out of the hospital. Kirsten was waiting in the car, and we took off for the airport. Traffic was light, parking was easy, the shuttle was waiting, no one was in the security line, our flight was at the closest gate to security, and we arrived just before boarding started. Another faith promoting rumor is born.
Tuesday, March 31, 2015
Thursday, March 26, 2015
Mets Day 1078: More CT analysis shows 50% tumor shrinkage
Last night Hopkins posted another analysis of my CT scan. The clinical trial team apparently wanted to measure as precisely as possible the sizes of the two target tumors. I'm not sure I understand how the math is done, but the bottom line conclusion is that these two tumors have shrunk by 50% after three rounds of Opdivo.
Here's the language of the supplemental analysis:
______________________________________
Exam 1: CHZ 8080 - CT SUPPLEMENTAL READ R0 - Mar 24, 2015 13:47
RESULT: This report is dictated with specific measurement of index
lesions as RECIST 1.1. Please see the original clinical report of the CT
scan of the neck from 3/24/2015.
COMPARISON: 2/10/2015.
RECIST 1.1:
Longest unidimensional measurement in mm for non-nodal disease.
Short axis measurements for nodes.
TARGET LESIONS:
TL1: Left level 5 lymph node measures 9 x 12 mm at slice position 208
compared to 16 x 18 mm previously.
TL2: Left level 4 lymph node measures 7 x 9 mm at slice position 256
compared to 16 x 20 mm previously.
NON-TARGET LESIONS:
None
NEW LESIONS:
None.
______________________________________
This is amazing news. I am humbled and filled with gratitude. I am grateful to God, and all those who continue to show faith on my behalf. Thank you.
Here's the language of the supplemental analysis:
______________________________________
Exam 1: CHZ 8080 - CT SUPPLEMENTAL READ R0 - Mar 24, 2015 13:47
RESULT: This report is dictated with specific measurement of index
lesions as RECIST 1.1. Please see the original clinical report of the CT
scan of the neck from 3/24/2015.
COMPARISON: 2/10/2015.
RECIST 1.1:
Longest unidimensional measurement in mm for non-nodal disease.
Short axis measurements for nodes.
TARGET LESIONS:
TL1: Left level 5 lymph node measures 9 x 12 mm at slice position 208
compared to 16 x 18 mm previously.
TL2: Left level 4 lymph node measures 7 x 9 mm at slice position 256
compared to 16 x 20 mm previously.
NON-TARGET LESIONS:
None
NEW LESIONS:
None.
IMPRESSION: Decrease in SOD from 32 mm at baseline to 16 mm.
______________________________________
This is amazing news. I am humbled and filled with gratitude. I am grateful to God, and all those who continue to show faith on my behalf. Thank you.
Wednesday, March 25, 2015
Mets Day 1077: Awesome CT results
I just got the results of yesterday's CT scan, and the results are really, really good. The overall size of the cluster of tumors in my neck and shoulder have decreased by about 20% after three infusions of Opdivo. I'm doing a little happy dance here. This is the first time since my cancer was diagnosed that that any CT scan has detected a decrease in tumor size. I must say that I like this type of report far better than the other 20+ reports I've receved over the past three and a half years.
Before writing this post I texted the news to my family. The responses are like the Lego Movie theme song. Yay!
Here's the language from the findings section:
I'll be curious to see how other metastatic bladder cancer patients are doing on this drug. I'm the first mets BC patient on this trial at Johns Hopkins, so hopefully the drug can provide a lot more patients with this kind of response.
I forwarded the reports to Drs. Apolo and Aragon-Ching, with this note:
Before writing this post I texted the news to my family. The responses are like the Lego Movie theme song. Yay!
Here's the language from the findings section:
Since prior studies dated 2/10/2015, there is slightly decreased lymphadenopathy in the left posterior triangle, lower jugular chain, and anterior mediastinum. Index measurements are as follows: (outside study dated 1/8/2015 was reconstructed in the axial plane to provide index AP x TV measurements):I am so grateful to hear this news. I don't know whether the nivolumab drug will keep shrinking my tumors, or how long the effect will last, but I'll take all I can get. I'll of course stay on the clinical trial for as long as there are good results (or two years, whichever comes first).
Largest level IV lymph node (22/68) measures 1.4 x 1.2 centimeter (previously 1.8 x 1.5 cm).
Largest level 5 lymph node (22/57) measures 1.2 x 0.9 cm (previously 1.5 x 1.8 cm).
Largest anterior mediastinal node (22/76) measures 1.0 x 0.8 cm (previously 1.1 x 0.5 cm).
No new or enlarging lymph nodes are seen.
I'll be curious to see how other metastatic bladder cancer patients are doing on this drug. I'm the first mets BC patient on this trial at Johns Hopkins, so hopefully the drug can provide a lot more patients with this kind of response.
I forwarded the reports to Drs. Apolo and Aragon-Ching, with this note:
Enclosed are the results of the first scan since I started the nivolumab clinical trial (three infusions so far). Yeah, I'm happy. I'll keep riding this horse as long as it will carry me. Next scan is 5/5/15. I'll keep you posted. Thanks again for your ongoing care.They each responded within an hour ("awesome news" and "wonderful!"). I agree. Everything is awesome!
Tuesday, March 24, 2015
Mets Day 1076: How not to do a CT scan
Today was my first CT scan since I started the nivolumab clinical trial. The scan is intended to provide a status report on the sizes of my various tumors. It will be a couple of days before I get the results. The trial protocol requires two scans before the doctors can make any determination of whether the Opdivo drug is working, so today's scan will not be definitive.
Anyway, so I arrived at the Hopkins scan at about 10:30 am, only to have the nurse tell me that Hopkins has not received approval from my health insurance company to do the scan. I explained that this scan was part of a clinical trial, which was news to the nurse. She disappeared to make some calls, then came back and told me that, even though I was in a clinical trial, Hopkins considered this scan to be within the normal standard of care, so it was appropriate to ask the insurance company to cover it. She said that someone was calling the insurance company now to get the approval. She said that someone should have flagged this before, and apologized for the wait.
After an hour of waiting, the nurse came back and told me that United health care had approved the scan. At about the same time, the research nurse for the clinical trial showed up and also apologized for not obtaining the approval in advance. She assured me that future scans would get the approval in advance. I asked about the relationship between the clinical trial sponsor, who was supposed to cover the costs associated with the trial, and the decision to seek reimbursement from UHC for the scans. The answer is that any care that is consistent with the standard of care is billable to the insurance company, regardless of whether it occurs within a clinical trial.
With the approval in hand, I was escorted back to have my port accessed, then led into the CT scan room. I was to have scans of my neck, chest, and abdomen without, then with, contrast. After the scans without contrast, a nurse hooked me up to an infusion pump that would feed the glucose-rich media with iodine through my port and into my bloodstream, where it would be distributed throughout my body in about five heartbeats. I was used to this procedure, having gone through it more than 20 times in the past three years.
Instead of getting that familiar warmth as spread through the body and gather in the loins upon the pump activation, however, the connection between the pump and my port broke apart, spraying my face, arms, torso, and the inside of the CT doughnut with sticky goo. I yelled out to stop the scan, and three nurses and techs came running out bearing shocked expressions. They were more rattled than I was. The nurse who had hooked me repeatedly apologized, saying that had never happened to him before. (Me either.) They hooked another bag of contrast up, double-checking the connection line to my port, then ran me through the scan.
As the table was moved out of the doughnut, the nurses returned to clean me up. The media on my arm had started to harden, like sugar glaze exposed to air. The nurses were unable to find a towel, so they grabbed one of the clean sheets for the table, wetted it, and wiped off my arms, face, and hair. Another one wiped out the machine, then the third escorted me out to have my port de-accessed, repeating her apologies. (Please don't tell the administration, she silently said. Don't worry, I silently thought back. I'll just post it on my blog.)
As soon as my port access was removed, one of the CT techs came running back to get me. It seems that they didn't do the contrast scan of the abdomen - they just did the neck and chest. Since I'd just had the contrast, they said I didn't need more. So they slapped me back on the table, ran me through the scanner, then sent me on my way. They were visibly rattled. I'm glad they didn't decide to crank up the scanner power and nuke me. Or maybe they did and I don't know it.
I'll get the results in a day or two. And next Monday, I'll have another infusion. We'll stay the course until at least early May, when I'll have the second scan after six rounds of infusions, and we'll decide whether this trial is doing me any good.
Speaking of clinical trials, yesterday the New York Times ran an article about he low percentage of adult cancer patients who entered clinical trials. While 80 to 90 percent of pediatric cancer patients participate in clinical trials, the article said, fewer than 5% of adults with cancer participate. I'm amazed at that figure. Upon some reflection, I think it's because adults want to think that their course of treatment will lead to a cure, not an experiment. And their doctors are obliging them, and not telling them about clinical trial options. I think that there needs to be greater humility by oncologists who treat adults, as well as their patients. There is so much we simply don't know about cancer.
Anyway, so I arrived at the Hopkins scan at about 10:30 am, only to have the nurse tell me that Hopkins has not received approval from my health insurance company to do the scan. I explained that this scan was part of a clinical trial, which was news to the nurse. She disappeared to make some calls, then came back and told me that, even though I was in a clinical trial, Hopkins considered this scan to be within the normal standard of care, so it was appropriate to ask the insurance company to cover it. She said that someone was calling the insurance company now to get the approval. She said that someone should have flagged this before, and apologized for the wait.
After an hour of waiting, the nurse came back and told me that United health care had approved the scan. At about the same time, the research nurse for the clinical trial showed up and also apologized for not obtaining the approval in advance. She assured me that future scans would get the approval in advance. I asked about the relationship between the clinical trial sponsor, who was supposed to cover the costs associated with the trial, and the decision to seek reimbursement from UHC for the scans. The answer is that any care that is consistent with the standard of care is billable to the insurance company, regardless of whether it occurs within a clinical trial.
With the approval in hand, I was escorted back to have my port accessed, then led into the CT scan room. I was to have scans of my neck, chest, and abdomen without, then with, contrast. After the scans without contrast, a nurse hooked me up to an infusion pump that would feed the glucose-rich media with iodine through my port and into my bloodstream, where it would be distributed throughout my body in about five heartbeats. I was used to this procedure, having gone through it more than 20 times in the past three years.
Instead of getting that familiar warmth as spread through the body and gather in the loins upon the pump activation, however, the connection between the pump and my port broke apart, spraying my face, arms, torso, and the inside of the CT doughnut with sticky goo. I yelled out to stop the scan, and three nurses and techs came running out bearing shocked expressions. They were more rattled than I was. The nurse who had hooked me repeatedly apologized, saying that had never happened to him before. (Me either.) They hooked another bag of contrast up, double-checking the connection line to my port, then ran me through the scan.
As the table was moved out of the doughnut, the nurses returned to clean me up. The media on my arm had started to harden, like sugar glaze exposed to air. The nurses were unable to find a towel, so they grabbed one of the clean sheets for the table, wetted it, and wiped off my arms, face, and hair. Another one wiped out the machine, then the third escorted me out to have my port de-accessed, repeating her apologies. (Please don't tell the administration, she silently said. Don't worry, I silently thought back. I'll just post it on my blog.)
As soon as my port access was removed, one of the CT techs came running back to get me. It seems that they didn't do the contrast scan of the abdomen - they just did the neck and chest. Since I'd just had the contrast, they said I didn't need more. So they slapped me back on the table, ran me through the scanner, then sent me on my way. They were visibly rattled. I'm glad they didn't decide to crank up the scanner power and nuke me. Or maybe they did and I don't know it.
I'll get the results in a day or two. And next Monday, I'll have another infusion. We'll stay the course until at least early May, when I'll have the second scan after six rounds of infusions, and we'll decide whether this trial is doing me any good.
Speaking of clinical trials, yesterday the New York Times ran an article about he low percentage of adult cancer patients who entered clinical trials. While 80 to 90 percent of pediatric cancer patients participate in clinical trials, the article said, fewer than 5% of adults with cancer participate. I'm amazed at that figure. Upon some reflection, I think it's because adults want to think that their course of treatment will lead to a cure, not an experiment. And their doctors are obliging them, and not telling them about clinical trial options. I think that there needs to be greater humility by oncologists who treat adults, as well as their patients. There is so much we simply don't know about cancer.
Wednesday, March 18, 2015
Mets Day 1070: Third Opdivo infusion
Yesterday I spent a long day at Johns Hopkins getting my third infusion of nivolumab. I left my home in Northern Virginia at 9 am and arrive at JHU at about 10:15 am and had a short wait before I was called in for my lab work. The nurse could not get a return from my port, so she ended up drawing blood the old-fashioned way. Since it takes three hours for the pharmacy to custom-make the infusion, I walked over to the cafeteria and read the paper while trying to ignore the inanities of "the Price Is Right" on the TV.
My appointment with Dr. Hahn was at 12:40, so I wandered back down to the waiting room and was called in soon thereafter. Because the clinical trial Sponsor wants to note any possible side effects, I told Dr. Hahn about a strange pain in around left ear that started about 5 days ago. He checked it out - no inflammation to the ear drum - shrugged, and said to let him know if it persisted.
At 1:30 I was called into the infusion area, where the nurse placed another IV for the Opdivo drug mix. At the same time, he fiddled around with my port, flushing a mixture of saline and heparin, and eventually ordered a clot-busting drug that would dissolve whatever was blocking the tip of the port from allowing a return. I'd had a similar problem with this port in 2102 when the tip got lodged in the side of my vein. I eventually had an interventional radiologist snake a line up through my femoral artery to move the tip. This time, after soaking for an hour or so, the clot-busting drug seemed to do the trick and my nurse was able to get a return. I got back home by 5 pm.
The main reason why the visit seemed longer than usual was that I had started to feel sick the day before, and didn't sleep well. I must have picked up a bug while flying home from Utah on Sunday March 15. I had spent 10 days out there spending time with my granddaughter, visiting with other family, and playing with my granddaughter. I went skiing with my brother and was reminded just how out of shape I am. My quads and hamstrings protested for days after. But I'm recovered now.
Next week I have a CT scan, which will be the first glimpse of whether the Opdivo has shrunk my tumors in my neck and shoulder. The doctors will compare that scan to my baseline scan of early February, and determine whether my cancer has progressed, held steady, or shrunk. The doctors caution that they want to see the results defined by two scans (scheduled for March 24 and May 5), so next week's scan will not be definitive. It will, however, give some idea as to what mischief my cancer is up to.
My appointment with Dr. Hahn was at 12:40, so I wandered back down to the waiting room and was called in soon thereafter. Because the clinical trial Sponsor wants to note any possible side effects, I told Dr. Hahn about a strange pain in around left ear that started about 5 days ago. He checked it out - no inflammation to the ear drum - shrugged, and said to let him know if it persisted.
At 1:30 I was called into the infusion area, where the nurse placed another IV for the Opdivo drug mix. At the same time, he fiddled around with my port, flushing a mixture of saline and heparin, and eventually ordered a clot-busting drug that would dissolve whatever was blocking the tip of the port from allowing a return. I'd had a similar problem with this port in 2102 when the tip got lodged in the side of my vein. I eventually had an interventional radiologist snake a line up through my femoral artery to move the tip. This time, after soaking for an hour or so, the clot-busting drug seemed to do the trick and my nurse was able to get a return. I got back home by 5 pm.
The main reason why the visit seemed longer than usual was that I had started to feel sick the day before, and didn't sleep well. I must have picked up a bug while flying home from Utah on Sunday March 15. I had spent 10 days out there spending time with my granddaughter, visiting with other family, and playing with my granddaughter. I went skiing with my brother and was reminded just how out of shape I am. My quads and hamstrings protested for days after. But I'm recovered now.
Next week I have a CT scan, which will be the first glimpse of whether the Opdivo has shrunk my tumors in my neck and shoulder. The doctors will compare that scan to my baseline scan of early February, and determine whether my cancer has progressed, held steady, or shrunk. The doctors caution that they want to see the results defined by two scans (scheduled for March 24 and May 5), so next week's scan will not be definitive. It will, however, give some idea as to what mischief my cancer is up to.
Tuesday, March 3, 2015
Mets Day 1055: Second Optivo infusion
I went to Johns Hopkins this morning for the second round of treatment with nivolumab (Opdivo) through the clinical trial sponsored by Bristol-Myers Squibb. In the past few days, I had noticed that the swelling of the nodes in my neck had decreased. This morning Dr. Hahn palpitated my nodes and agreed that, not only were my nodes smaller, but they also were not as firm. He said that this suggested that the swelling was due to the nivolumab doing its thing, ramping up my immune system around my nodes, causing them to swell up, then decreasing in size as the effect of the drug wore off. Hopefully, each time the swelling goes down, the size of the nodes will decrease too.
Today's dose was the same as two weeks ago: 3 mg/kg of body weight. Each batch is custom-made based on the weight of the patient that morning. I can expect my nodes to again swell up, then decrease in size after 10 days or so. In two weeks, I'll do it again, then have a CT scan to see how things are going.
I have not had any noticeable side effects from the infusions. No GI issues, or hives, or other strange things. My neck and left shoulder is still a bit sore, but it is not debilitating. Yesterday I played five games of racketball with Garrett (who had the day off from school due to dangerously icy conditions in the morning), and felt fine. I'm hopeful that this drug works, but I'm also realistic in understanding that it's a long shot. I'm grateful for each extra day that I have with my family.
Speaking of which, later this week I'm flying to Utah for some grandpa time with Rose. There will be other family members and friends I'll also see, but seeing my granddaughter is the magnet that draws me out there. Being a grandparent is a good gig, and I'm looking forward to this trip.
Today's dose was the same as two weeks ago: 3 mg/kg of body weight. Each batch is custom-made based on the weight of the patient that morning. I can expect my nodes to again swell up, then decrease in size after 10 days or so. In two weeks, I'll do it again, then have a CT scan to see how things are going.
I have not had any noticeable side effects from the infusions. No GI issues, or hives, or other strange things. My neck and left shoulder is still a bit sore, but it is not debilitating. Yesterday I played five games of racketball with Garrett (who had the day off from school due to dangerously icy conditions in the morning), and felt fine. I'm hopeful that this drug works, but I'm also realistic in understanding that it's a long shot. I'm grateful for each extra day that I have with my family.
Speaking of which, later this week I'm flying to Utah for some grandpa time with Rose. There will be other family members and friends I'll also see, but seeing my granddaughter is the magnet that draws me out there. Being a grandparent is a good gig, and I'm looking forward to this trip.
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