Infusion #47

Today's infusion was utterly routine. I'm glad that I'm getting my Opdivo at the local Kaiser Permanente facility. It's close by, and I'm in and out in the time that it took me to drive to Baltimore. It's the newest and nicest of any of the infusion centers I've been to so far (GW, NIH, Hopkins, and now KP Tysons). Plus the nurses bring me cold Diet Cokes so I don't even need to put down my recliner.

It looks likely that I'll be moving to Utah by the end of the summer. Jennifer has been suffering from some serious health issues. In light of my precarious health status, I thought it prudent that we get her reestablished closer to her family as well as our doctor daughter. So I've been looking into the availability of continuing by treatments at the Huntsman Cancer Center at the University of Utah. It appears that I should be able to do so. My greater concern is the availability of clinical trials in Utah if the nivolumab does not work. There are a lot more options in the DC area. But I'll cross that bridge when I come to it.

Opdivo infusion #46

After an 18 month hiatus, I'm back on immunotherapy. This time I'm at the Kaiser Permanente facility in Tyson's Corner Virginia, which is only a few miles from my home. It's newer and more spacious than either Hopkins or GW's chemo areas. At the appointed time, I was seated in the recliner and the nurse quickly placed an IV (since I was deported last year) and did a blood draw (I'd done my labs last Friday, but she didn't see a Hepatitis B test on my chart). While that test was running, she scheduled my next 3 infusions. Once the nivolumab arrived, she hooked it up to the infusion machine, and it was no different from my 45 prior infusions. Here's to hoping that the effect likewise is no different, and once more I'll slide into remission.

Niolumab 3, Biopsy 0

Less than an hour after I sent my emails yesterday to my dream team of oncologists, I received a call from Dr. Apolo. She said that in the past week she had reviewed by current CT and PET scans, compared them to my CT scans of the past 4 years, consulted with NIH's interventional radiologists, and had just spoken with Dr. Hahn. She concluded that my new tumor was in a different location that my first supraclavicular node mets tumor that was first observed in mid 2013, biopsied by NIH in September 2014, and which disappeared as a result of my nivolumab therapy in 2015. The new tumor is deeper in my chest, near my trachea, and nestled in between the internal and external jugular veins and aorta. The new tumor shares the same lymphatic drainage as my first supraclavicular tumor. She said that it is 98% likely to be metastatic bladder cancer; the other 2% is that it is a different type of cancer. Her interventional radiologists confirm that it is too risky to biopsy with a guided needle. She and Dr. Hahn both agree that the risks of performing a surgical biopsy outweigh the diagnostic benefits. She and Dr. Hahn agree that I should immediately restart immunotherapy, preferably nivolumab, and see if the tumor responds. If not, then I can investigate my clinical trial options. I asked her whether I should stick with Hopkins, or get immunotherapy closer to home. She said she'd recommend keeping it as simple as possible. I thanked her for comprehensive review and advice. 

Later in the evening, Dr. Hahn emailed, "Given what you have described from your physicians at Kaiser, I would recommend foregoing the biopsy and restarting nivolumab. If we can do that through the study, then great.  If not, then treating you with any of the now FDA approved PD-L1/PD-1 agents would be ok too." The Hopkins clinical trial nurse is in the process of verifying whether I can resume treatment as part of the ongoing study by Bristol Myers Squibb of the drug. Now that nivolumab has been approved by FDA for metastatic bladder cancer as a result of the data from the clinical trial in which I participated, however, I don't have to be in a clinical trial to get the drug.

Today I received a note from Dr. Ferrera, who also agreed that the biopsy was too risky. She has put in orders for me to resume nivolumab therapy starting on Monday May 14 at the local Kaiser Permanente office six miles away from home. No copay, no extra costs, no commuting to Charm City. That's convenient!

Based the unanimous vote of my doctors, my Plan E is that I'm going to resume my infusions with Opdivo after an 18 month break. I'm not sure how long I'll go, but expect it will be for at least 6 months. I hope that the drug works as well this time as it did before.

To biopsy or not to biopsy? That is the question.

This afternoon I met with Dr. Nyen Chong, a Kaiser Permanente thoracic surgeon, about performing a biopsy of my tumor. (Kaiser's Interventional Radiologists have said that a guided FNA not an option for this new tumor location.) We reviewed the location of the tumor, its proximity to 4 different veins, some lymphatic ducts, and nerve bundles. Dr. Chong explained that the tumor location would be very difficult although not impossible to access. He believed he could successfully perform a robotic-assisted biopsy, but that the risks of serious complications (serious bleeding or nerve damage causing paralysis) were about 10%. Regarding scheduling, he would not be able to perform the biopsy until mid-June. I understood him to opine that that he would recommend proceeding with the biopsy only if the odds of it providing information that would change the course of therapy exceeded the odds of the risks.

As I understand it, the odds that this new tumor is anything other than mets BC are very low, i.e., the low single digits. I have sent the following three questions to my three oncologists (Dr. Ferrera at Kaiser, Dr. Apolo at NIH, and Dr. Hahn at Hopkins):

1. Do you agree with Dr. Chong's assessment?

2. In view of the biopsy risks, would you recommend proceeding with the immediate resumption of nivolumab without having a biopsy? 

3. Or, would you insist on having the biopsy prior to my resuming therapy?

I'm leaning away from having the biopsy due to both the risks and the passage of time, but want to hear hear how oncologists answer my questions. Of course, either Dr. Ferrera or Dr. Hahn will have to agree to resume treatment without a biopsy, and for me to enter Dr. Apolo's cabo/nivo/ipi trial, I'll have to first resume nivolumab, then have tumor progression. I'll likely follow their consensus.