Tuesday, April 24, 2018

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. 

1 comment:

  1. Ken, sorry to hear this news. I wish you all the best in whatever course of treatment you follow. Your blog has helped me so much with my wife's BC journey, so many thanks. God bless you and your family. Marty.

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