Today was my 61st infusion of nivolumab. After 3 needle sticks, the nurse was finally able to draw blood. My labs were utterly boring. My consultation with Dr. Maughan and his fellow were routine, only they were excited that I was planning on proceeding with radiation therapy. I brought in the leftover shirts from the BCAN walk and made them available to staff. They were excited for the freebies. The pharmacy rapidly prepared my drug, and after a 30 minute push I was done. It took less than two hours -- one of my fastest infusions yet.
Regarding radiotherapy, after reading more than a dozen articles, I've decided that it's worth it to eliminate the persistent tumor at the base of my neck. The odds of having any long-term harm from radiation seems very low. The benefits are harder to quantify. Since my disease is systemic, radiation is not curative. But it will eliminate the singe largest location of metastatic activity, and that can't be a bad thing. So what the heck, I'll give it a shot. Next week I'll have a simulated treatment, where they'll locate the exact places they want to focus the radiation beams. I'm told I'll get three dots tattooed across my chest that will be used as reference points to exactly place the beams. (I asked whether I get to pick the tattoo design, and was politely refused. The dots will look like small moles, they said. After they're done I can go to Fat Bob's Custom Tattoo Parlor and have him connect the dots however I want.) The actual radiotherapy will be spread over 3 sessions during the week of June 10. I'll have my next CT on June 27, so I should know pretty quickly if the radiation worked.
In other news, I've been moving forward with plans to build a small house in Huntsville. The architectural plans are done and the engineer is reviewing them. The well and septic permits are in hand, and the driller should start on the well next week. Garrett is home from college, and has been helping me move fences and build gates for the 250 yard driveway connecting the street to the building site. I hope to break ground in a month or so, and can hopefully get the roof on before next winter. It all goes to plan (and it never does), I could be moved in by next spring.
Thursday, May 30, 2019
Wednesday, May 22, 2019
I'm thinking about having my persistent tumor nuked
Today I met with Dr. Shane Lloyd, a radiologist at Huntsman Cancer Center, to discuss whether radiotherapy might be appropriate for my supraclavicular node. That cluster of lymph nodes, located on the front of my left clavicle near the base of my neck, has been where distant metastatic activity has most often shown up: first in 2013, propping me to have ddMVAC chemotherapy; again in late 2014, which led to the discovery of and treatment for pulmonary embolisms; in early 2015, when it was the base of a string of tumors growing up the left side of my neck towards my earlobe (and which shrunk dramatically when I started nivolumab immunotherapy clinical trial). In March 2018 that cluster of nodes again lit up, showing my cancer had returned, and I resumed immunotherapy. Since then the tumor had beens stable in size -- not growing, but not shrinking either. It's still showing metabolic activity. Aside from a small node in my lung which may or may not be an active tumor (and which we're monitoring), that supraclavicular node is the only tumor in my body. The question is whether I should have radiation therapy to kill it.
Radiation is usually not used on systemic metastatic cancer, like my TCC. I know that cancer cells are spread throughout my body, and radiation can't be used on every cell unless the goal is cremation. In my case, however, I have this single persistent tumor that flares up every time every time my mets are growing. So my doctors are proposing to use radiotherapy to kill that tumor. Today's meeting was an initial consultation with the radiologist to discuss whether to proceed.
Dr. Lloyd explained that he proposed using a total of 30 grays (Gy) of stereotactic body radiation therapy (SBRT), spread of three fractions (or rounds), every other day. Sometimes this SBRT is called Cyberknife, or Gamma Knife, or X-Knife, or TomoTherapy -- all are merely brand names for similar equipment. Each treatment would last about 30 minutes. The treatment area is defined using a CT scan; multiple beams (up to 30) are focused on the target (the cluster of metastatic supraclavicular nodes), and the parameters of the radiation are closely defined. The intent is to minimize any side effects to adjacent areas. Since the supraclavicular node is close to my throat, I may have a sore throat for a few days. It may be hard to swallow and my skin might be tender. Those side effects are usually transient.
Longer term risks include a 10-20% of a thyroid deficiency (I'd be tested annually, and would have to take a pill if that occurs). Other risks (all less than 5%) include radiation pneumanitis (scarring in lung), shortness of breath, dry cough. Those can be treated with steroids and usually resolve. Dr. Lloyd also mentioned a number of other risks that were less that 1%, and which I immediately forgot. Dr. Lloyd said that there was no evidence of which he was aware that this type of radiotherapy could cause or contribute to an autoimmune disorder.
In addition to getting rid of a persistent tumor, Dr Lloyd said there is a chance that radiotherapy could have a synergistic effect with immunotherapy, and boost my immune system's ability to recognize and fight cancer. This is called an abscopal effect. He said that there were no Phase III clinical trials that had definitely shown an abscopal effect between radiation therapy and immunotherapy. He noted, however there were recent articles and studies that suggested radiotherapy might have an abscopal effect on immunotherapy. I'm going to do some more reading about this.
For now, I've given the green light to move forward. I want to consult with other doctors about this, however, and may change my mind. But the risks seem low and the idea of nuking millions of cancer cells in my body has some appeal.
[5/23/19 edit: Here are some additional articles on this subject that I'm reading]:
Harnessing the Immunomodulatory Effects of Radiation in Urinary Bladder Cancer, Cureus. 2019 Feb; 11(2): e4108
Abscopal Effect of Radiotherapy in the Immunotherapy Era: Systematic Review of Reported Cases, Cureus. 2019 Feb; 11(2): e4103.
Immune mechanisms mediating abscopal effects in radioimmunotherapy, Pharmacol Ther. 2019 Apr;196:195-203
Radiation is usually not used on systemic metastatic cancer, like my TCC. I know that cancer cells are spread throughout my body, and radiation can't be used on every cell unless the goal is cremation. In my case, however, I have this single persistent tumor that flares up every time every time my mets are growing. So my doctors are proposing to use radiotherapy to kill that tumor. Today's meeting was an initial consultation with the radiologist to discuss whether to proceed.
Dr. Lloyd explained that he proposed using a total of 30 grays (Gy) of stereotactic body radiation therapy (SBRT), spread of three fractions (or rounds), every other day. Sometimes this SBRT is called Cyberknife, or Gamma Knife, or X-Knife, or TomoTherapy -- all are merely brand names for similar equipment. Each treatment would last about 30 minutes. The treatment area is defined using a CT scan; multiple beams (up to 30) are focused on the target (the cluster of metastatic supraclavicular nodes), and the parameters of the radiation are closely defined. The intent is to minimize any side effects to adjacent areas. Since the supraclavicular node is close to my throat, I may have a sore throat for a few days. It may be hard to swallow and my skin might be tender. Those side effects are usually transient.
Longer term risks include a 10-20% of a thyroid deficiency (I'd be tested annually, and would have to take a pill if that occurs). Other risks (all less than 5%) include radiation pneumanitis (scarring in lung), shortness of breath, dry cough. Those can be treated with steroids and usually resolve. Dr. Lloyd also mentioned a number of other risks that were less that 1%, and which I immediately forgot. Dr. Lloyd said that there was no evidence of which he was aware that this type of radiotherapy could cause or contribute to an autoimmune disorder.
In addition to getting rid of a persistent tumor, Dr Lloyd said there is a chance that radiotherapy could have a synergistic effect with immunotherapy, and boost my immune system's ability to recognize and fight cancer. This is called an abscopal effect. He said that there were no Phase III clinical trials that had definitely shown an abscopal effect between radiation therapy and immunotherapy. He noted, however there were recent articles and studies that suggested radiotherapy might have an abscopal effect on immunotherapy. I'm going to do some more reading about this.
For now, I've given the green light to move forward. I want to consult with other doctors about this, however, and may change my mind. But the risks seem low and the idea of nuking millions of cancer cells in my body has some appeal.
[5/23/19 edit: Here are some additional articles on this subject that I'm reading]:
Harnessing the Immunomodulatory Effects of Radiation in Urinary Bladder Cancer, Cureus. 2019 Feb; 11(2): e4108
Abscopal Effect of Radiotherapy in the Immunotherapy Era: Systematic Review of Reported Cases, Cureus. 2019 Feb; 11(2): e4103.
Immune mechanisms mediating abscopal effects in radioimmunotherapy, Pharmacol Ther. 2019 Apr;196:195-203
Abscopal effect of radiotherapy combined with immune checkpoint inhibitors, Journal of Hematology & Oncology201811:104
Radiation, Immune Checkpoint Blockade and the Abscopal Effect: A Critical Review on Timing, Dose and Fractionation, Front Oncol. 2018; 8: 612.
Immunotherapy in Urothelial Cancer: Recent Results and Future Perspectives, Drugs. 2017 Jul;77(10):1077-1089
The role of PD-L1 in the radiation response and clinical outcome for bladder cancer, Sci Rep. 2016; 6: 19740
Exceptional Response to Nivolumab and Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Cervical Carcinoma with High Tumor Mutational Burden: Management Considerations from the Center For Personalized Cancer Therapy at UC San Diego Moores Cancer Center, Oncologist. 2017 Jun;22(6):631-637
Report of an abscopal effect induced by stereotactic body radiotherapy and nivolumab in a patient with metastatic non-small cell lung cancer,
Radiat Oncol
v.13; 2018
Monday, May 6, 2019
Utah's first BCAN Walk!
On Saturday, May 4, Utah's first walk to end bladder cancer was held in Memory Grove Park in Salt Lake City. 30-40 people attended. Dr. Ben Maughan of Huntsman Cancer Center (and who happens to be my oncologist) addressed the group before we embarked on a pleasant walk through Memory Grove and along City Creek.We're still a bit short of our fundraising goal of $3,000 -- please consider making a donation by clicking on this link. We're looking forward to increasing attendance and fundraising in 2020. Thank you to all who attended, donated, and sent their support!
 |
| SLC BCAN walk |
 |
| Jennifer, me, and Ben Maughan |
Thursday, May 2, 2019
Infusion 60 and more
I had Opdivo infusion #60 this morning. My labs were normal and I was on the pump for only 35 minutes. I've continued to have no significant side effects - just the ongoing minor rash on my head and calves, and occasional looser bowel movements. I'll take those symptoms over active tumor growth any day.
I neglected to update my last post with the complete CT scan results. Bottom line: no new disease. No active metastatic activity. The supraclavicular node remains unchanged in size (about 2 cm on the short axis). The nodule in my lung is down to 5 mm. So I continue to have stable disease. I'll take those results.
Today, Dr. Maughan raised the possibility of having my superclavicular node treated with cyberknife radiation therapy. Alert readers (hi mom!) may remember that my Kaiser oncologist had proposed that last fall. I had consulted with Drs. Hahn and Apolo, and they both said the same thing: while using radiation to treat metastatic cancer was unusual, given that all of my recurrences have included that same supraclavicular cluster of nodes, neither of them were opposed to the idea. At that time we agreed to table the idea since I was relocating to Utah, and would be continuing my therapy at Huntsman. Seven months later, little has changed. I asked Dr. Maughan about the risks, and he said there was a chance that the radiation could trigger an autoimmune reaction. The odds are low (less than 10%), but worth considering. I said that I'd be interested in hearing what Drs. Hahn and Apolo thought. Dr. Maughan said he would consult with both of them, and if they concurred, he'd refer me to one of the Huntsman radiologists who could discuss the risks with me in greater detail. Sounds like a plan to me.
Utah's first BCAN walk to end bladder cancer is this Saturday. I'm expecting a small turnout since it was planned at the last minute and we have not done much in the way of publicity. But I'm hopeful that we'll lay the foundation for larger walks in the coming years. Maybe I'll post some photos.
In other news, on Tuesday I finally sold my home in Virginia. It took a while and we got less than we were asking for, but that's usually the way it works. I'm glad that Jennifer and I could raise our family there, and I hope the new owners enjoy it. I've moved on. I'm considering building a small home in Huntsville, designed so that Jennifer might eventually be able to safely live there, although she'd likely need ongoing caretaker assistance. I have no idea how long I'll continue to totter on and avoid more metastatic bullets, so I'll just have to figure out what's best for me and my family. Same old story.
I neglected to update my last post with the complete CT scan results. Bottom line: no new disease. No active metastatic activity. The supraclavicular node remains unchanged in size (about 2 cm on the short axis). The nodule in my lung is down to 5 mm. So I continue to have stable disease. I'll take those results.
Today, Dr. Maughan raised the possibility of having my superclavicular node treated with cyberknife radiation therapy. Alert readers (hi mom!) may remember that my Kaiser oncologist had proposed that last fall. I had consulted with Drs. Hahn and Apolo, and they both said the same thing: while using radiation to treat metastatic cancer was unusual, given that all of my recurrences have included that same supraclavicular cluster of nodes, neither of them were opposed to the idea. At that time we agreed to table the idea since I was relocating to Utah, and would be continuing my therapy at Huntsman. Seven months later, little has changed. I asked Dr. Maughan about the risks, and he said there was a chance that the radiation could trigger an autoimmune reaction. The odds are low (less than 10%), but worth considering. I said that I'd be interested in hearing what Drs. Hahn and Apolo thought. Dr. Maughan said he would consult with both of them, and if they concurred, he'd refer me to one of the Huntsman radiologists who could discuss the risks with me in greater detail. Sounds like a plan to me.
Utah's first BCAN walk to end bladder cancer is this Saturday. I'm expecting a small turnout since it was planned at the last minute and we have not done much in the way of publicity. But I'm hopeful that we'll lay the foundation for larger walks in the coming years. Maybe I'll post some photos.
In other news, on Tuesday I finally sold my home in Virginia. It took a while and we got less than we were asking for, but that's usually the way it works. I'm glad that Jennifer and I could raise our family there, and I hope the new owners enjoy it. I've moved on. I'm considering building a small home in Huntsville, designed so that Jennifer might eventually be able to safely live there, although she'd likely need ongoing caretaker assistance. I have no idea how long I'll continue to totter on and avoid more metastatic bullets, so I'll just have to figure out what's best for me and my family. Same old story.
Subscribe to:
Posts (Atom)