I was supposed to be at Johns Hopkins at 7 am this morning for my first infusion on the nivolumab (Opdivo) clinical trial. The most exciting part of the day was getting up there. It started snowing the night before, and the forecast was calling for 5-10 inches, which for the DC area is enough to shut down the city. I planned on driving the Jeep Wrangler. For some reason, I did not sleep well, and at 4 am decided to get up. I plowed the driveway, cleaned off the hot tub, then enjoyed a pre-dawn soak. I was on the road by 5 am. Our gravel road was unplowed, but the Jeep had no problems. The paved roads were mostly plowed but snowpacked. The beltway and I-95 was snowpacked, with lanes invisible. Fortunately, there was little traffic at that hour.
I arrived at JHU just before 7 am, and from that point on, everything went smoothly. My port was accessed, and the nurse took 17 vials of blood (I did agree to this experiment, I reminded myself). I met with Dr. Hahn and the clinical trial nurse, then was told to get some breakfast while the pharmacy prepared the right mixture of nivolumab, since dosage is custom-tailored to each patient's weight the day of treatment.
The JHU infusion room is older and more crowded than GW's infusion room, where I did my two prior chemo regimens. I planned to close my eyes and rest during the infusion, but the first chair that I was placed in would not stay reclined. I asked to be moved to another chair, and that one reclined so far it felt like my feet were higher than my head. But it did the trick. The actual infusion took only about 60 minutes.
While the PD-1 drug was being pumped into my body, the nurse told me that they had been getting some remarkable results from these new immunotherapy drugs. He also told me to make sure that I immediately reported anything different - hives, rashes, difficulty in breathing, tingling, changes in the GI tract, telepathy, etc. Listen to my body, I was told. Hopefully, the side effects should be minimal.
I was back on the road by noon, and by then the roads were all clear. I came home and took a nap - not because of the infusion, but because I had not slept much the night before. Jennifer and I went over to some friends for Pancake Day dinner. I'm yawning as I type this, so I'm going to listen to my body and go to bed.
My husband, Todd, was treated by Dr. Hahn at the IU/Simon Cancer Center and the Roudebush VAMC. We both liked him quite a lot.
ReplyDeleteMy husband has been battling bladder cancer since Dec 2008, and his most recent chemo has stopped working. A Medical Oncologist has suggested that Opdivo might help, but Blue Cross Blue Shield says they will not cover it because it is not yet approved for bladder cancer. Any suggestions???
ReplyDeleteYour husband may be able to enroll in a clinical trial that is testing Opdivo on bladder cancer patients. Talk to your oncologist about clinical trials. You can look for yourself at clinicaltrials.gov and search for locations that are testing nivolumab, review the eligibility requirements to see if your husband qualifies, and if so, look to see if one is close to you. There is no financial cost to a patient who participates in a clinical trial, so your insurance status is not relevant.
ReplyDeleteSo thankful to hear this good news!
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