Mets confirmed by PET; NIH consult

Last Tuesday, Dr. Hahn suggested that I get a PET scan to try to confirm if my enlarged nodes really were metastatic cancer, and if it was, to see if I could get it biopsied. My Kaiser doctor agreed, put in the order, and it was promptly scheduled for Thursday at Kaiser's Capitol Hill location. As I drove into town, I was reminded at how little I miss driving in DC. I had an IV placed and received an injection of fluorodeoxyglucose, or FDG, which is a radioactive tracer that cancer cells love. After the injection, the tech said I needed to wait an hour for the FDG to drawn to any cancer cells, so he covered me with a warm blanket, reclined my chair, and turned off the light. I promptly fell asleep. Eventually the tech woke me up, took me to the next room, laid me on the table and rolled me into the scanner. I would have fallen asleep again except I had to hold my arms over my head. I could feel the magnets pulsing the cells of each section of my body, and marveled in our technology.The next day I picked up a copy of my scan on CD, and saw that my tumor was FDG avid, confirming that it's metastatic cancer.

On Friday, Kaiser's interventional radiology department called and said that an IR had reviewed my CT and PET scans, and didn't think that my tumor could be biopsied with a fine needle aspiration (FNA) without risking damage to the either the surrounding nerve bundles, or the nearby cluster of veins and arteries. IR instead referred me to one of Kaiser's general surgeons to attempt a biopsy the old fashioned way -- cutting me open and trying to slice out a chunk of the tumor. How very 1950's, I thought. Maybe I'll see if the IR's at NIH or Hopkins are up to the challenge. (NIH did a FNA biopsy in a nearly location back in September 2014.)

Today I met with Dr. Andrea Apolo and her team at the National Cancer Institute at NIH's Bethesda campus. (living in the DC area does have its benefits.) I am fortunate that I met Dr. Apolo at a BCAN event in April 2012, just weeks after my cancer first went metastatic. She has been a valuable source of information, second opinions, and comfort ever since. She has steered me into two clinical trials while always looking out for my best interests. She is an example of the best type of public servant.

Here is the list of questions and notes that I prepared for our meeting:

Data re recurrence of mBC after immuntherapy-induced response?
How likely is it that this mBC is the same mutation as before?
Will sequencing tumor tissue for neoantigens assist in therapy selection? (PD ligand, CTLA-4 expression, HER2, inflamed TME, TSC1/2, other immune cytolytic gene signatures)
Kaiser IR is apprehensive of FNA. Can NIH do another FNA? Or Betsy Plimack at Fox Chase https://clinicaltrials.gov/ct2/show/NCT03291028
Does NIH’s analysis of my old sample (9/5/14) give any insight? (high mutation burden, HER2+, PDL expression)
What are my best therapy options?
  Resume Nivolumab
  Cabo/nivo/ipi https://clinicaltrials.gov/ct2/show/NCT02496208
  Enfortumab Vedotin (Nectin-4 expression; Trial EV-201) https://clinicaltrials.gov/ct2/show/NCT03219333
  PCV+Atezolizumab https://clinicaltrials.gov/ct2/show/NCT03289962
Recommendations?
Timing

Dr. Apolo said that getting a tissue sample via biopsy, then getting it sequenced, was the best way to understand what was going on. They could compare it to my earlier biopsy and determine whether it was the same mutation or something new. She'll have the NIH IR's look at my scans and see if they are willing to try to do the biopsy. (She seemed horrified that Kaiser wanted to try to get to the tumor by cutting me open.) She observed that the mets grew while I was off therapy -- I have not had any nivolumab for nearly 18 months -- and that there was a chance that I would again respond to nivolumab. She also said that her cabo/nivo/ipi trial was designed for patients who had progressed while on immunotherapy, so I did not qualify for that trial. (Plus, the chances of side effects were greater than just nivolumab alone.) She noted how some patients who had gone off immunotherapy, then had a relapse, had again responded when they went back on therapy (although the data are still limited.) Her recommendation was that, unless the biopsy showed something unexpected, I should resume nivolumab. She also said that it was not urgent that I do so immediately, as my mets appeared to be growing relatively slowly.We parted with her promising to get back to me in a week or so. It was a great consult.

I've had some time to reflect on the news of the return of my cancer. I'm a bit surprised on how nonplussed I am. I've expected this shoe to drop for some time and now that it has, I've determined that nothing has changed. I had not changed my assumptions on how long I would live: I do not have to deal with altered expectations, because long ago I learned to let go of any expectations. I continue to live one day at a time, giving thanks to God each morning, and gratitude each evening.

My mets are back

This morning, Johns Hopkins MyChart posted the interpretation by their radiologists of my CT scans at Kaiser of March 19. In my neck, the radiologists said that a "left supraclavicular lymph node demonstrates loss of normal reniform shape, and is suspicious for metastasis." In my chest, "increased size of the enlarged left upper paratracheal lymph node, which may represent metastatic disease. Given the location between several vessels, this would be difficult for percutaneous biopsy." It looks like my remission is over, and my mets are back. 

I tend to be proactive and would prefer not to wait for my doctors, so I sent the following questions to my doctors at Hopkins, Kaiser, and NIH:

1. What would you recommend my next steps to be?

2. Does it make sense to do a biopsy of the left supraclavicular lymph node? If so, should that be a JHUH, Kaiser, or NIH? 

3. What is the best type of genetic testing that can be done on the tissue to inform the next therapy?

4. Should I go back on nivolumab immediately (either through the clincial trial or, since it's been approved, outside of the trial protocol), or await testing, or consider a different therapy such as Dr. Apolo's cabo/nivo/ipi trial?

It looks like I'll have a period of uncertainty ahead.