Mets Day 1048: Swollen nodes

Today I had a follow-up appointment with Dr. Hahn at Johns Hopkins. He fondled the nodes on the left side of my neck and agreed that they appeared to have grown in size in the past week. He said that the objective of the nivolumab PD-1 drug was to "rev up" the body's immune system and hopefully get it to attack my metastatic cancer. Swelling around the tumors in my shoulder and neck is a sign that the drug is doing what it's supposed to do. Or it's a sign that my cancer has shifted into high gear and is growing faster than ever before. Dr. Hahn said that there was no way to know at this point which one it was, although he preferred to think the enlarged nodes were because the immunotherapy drug working as intended.

I will continue to get nivolumab infusions every other week for at least the next 12 weeks. To determine if the nivolumab is working, I will have a CT scan on March 24, and another 6 weeks later. A team of about 5 doctors will closely compare those scans to my baseline scan of February 10, as well as my earlier NIH scans. If the size of the tumors has decreased, or is stable, then I will keep going with the infusions. If the tumor size has increased by more than 25% from the baseline, then we will have determined that nivolumab does not work on my metastatic cancer, and I will be released from the trial. In that event, I'd be free to pursue other therapies, such as Dr. Apolo's cabozanatib trial, or another second-line therapy, such as a taxene.

I asked Dr. Hahn whether surgery or radiation might be an option in the future. He said that most doctors would not favor surgery to remove tumors in lymph nodes, because such surgery is not curative, carries its own risks, and would not improve my quality of life. He said that radiation therapy might be an option if the nodes were impacting my nerves or blood flow, or causing excessive pain. Pursuing that would mean that I would have to first drop out of the trial. I'll give the nivolumab time to work, but will continue to educate myself regarding my options.

I told Dr. Hahn that one of the consequences of the swollen nodes was that I had a constant dull ache on the left side of my neck, running from the bottom of my jaw, down my neck, and running along the top of my shoulder. My left clavicle is being pressed up by the tumor underneath it. Another tumor at the base of my neck is pressing down on my clavicle. And the two other tumors in my neck are pressing my skin out. Dr. Hahn said that any pain could be managed with painkillers, but I'm not close to that point yet. It just feels like a pulled muscle.

I also have recently developed a pain on the left side of my abdomen, which also feels like a pulled muscle. The scans did not show anything unusual going on there, so neither I nor Dr. Hahn could say what it was. Again, it's not a debilitating pain - no more than 2 on the zero to 10 pain scale - just enough to let me know that it's there.

Fortunately, I have so far avoided any of the other side effects of the nivolumab trials - no constipation or diarrhea or joint pain or anything else that I have noticed. I'll continue to carefully monitor my status, and will report to Hopkins next Tuesday for my next infusion.