Not as We Had Hoped

The results of today’s CT imaging procedure were not as we had hoped. Ideally, the dozen or so tumors in my lungs would have shown signs of shrinkage – indicating that the investigational drug was having a positive effect on the cancer. Instead, several of the tumors actually increased in size and a new spot even appeared in my spleen.

One of the hallmarks of immunotherapy, such as the checkpoint inhibitors, is the potential for a “delayed” response, which is not routinely seen with chemotherapy or other cytotoxic agents. Another biologic phenomenon unique to immunotherapy is “pseudoprogression,” or the initial radiologic appearance of an increase in tumor burden subsequently followed by tumor regression¹.

The CT imaging study cannot distinguish between cancer progression or inflammation as the reason for the increase in tumor size, so there is a chance that it’s due to inflammation and subsequent imaging tests in a month could demonstrate a reversal. However, it is also possible that the cancer isn’t responding to the investigational treatment.

To get more details, I’m undergoing a biopsy this Friday so that one of the lung tumors can be sampled. The preliminary information from that biopsy, which should be available next week, will help guide between cancer progression and inflammation. Decisions regarding how to proceed will depend on that outcome.

Needless to say, everyone’s hope was to have seen some sign of cancer regression on today’s CT scan and many teardrops were shed. The chances for a favorable outcome have diminished and must be acknowledged, but for now I’m persevering and will evaluate next steps following the biopsy results.

Sincere thanks to everyone who has offered their positive thoughts, prayers, and support. It is difficult to respond to each and every communication, but please know that I read “everything” and your time and effort is greatly appreciated. Special thanks to everyone at NIH for being so wonderful — even when faced with delivering bad news.

Now, more than ever, please keep all those positive vibes coming my way.

¹ Amidst the excitement: A cautionary tale of immunotherapy, pseudoprogression and head and neck squamous cell carcinoma. Baxi SS, Dunn LA, Burtness BA.
Oral Oncol. 2016 Nov;62:147-148. doi: 10.1016/j.oraloncology.2016.10.007. Epub 2016 Oct 21.

7 thoughts on “Not as We Had Hoped

  1. Oh Michael. The time and effort you speak of is inconsequential compared to your strength in facing each challenge your cancer presents. You truly are an inspiration to take one day at a time. None of us know what the future holds. All we can do is stay in the moment and cherish each one.

  2. Michael – Watching your battle from the sidelines here. Praying for you and so sorry to hear about today’s turn. Your writing is courageous and I expect cathartic for you – we all appreciate the updates. Good luck with the biopsy and my best to Lori and the girls. Chris

  3. Michael, our hearts go out to you. Jeanette said it best – you and your strength are such an inspiration. We will keep praying for you (and your ladies.) Stay strong and hopeful – one day at a time. Our love and thoughts are with you constantly.

  4. So sorry things are not going as you hoped. Lung biopsy is a bit unpleasant, but getting information is crucial for you on many levels. Best wishes for success with those results.

  5. Bro, U have been fighting it & with resolve shall overcome.
    Things will take a positive turn.
    Take care and my thoughts & good wishes r with U

  6. I’m cheering for you Michael. I just found your blog from a Twitter link. I’ll be following you. I’m in a similar fight, urethral cancer (SCC) metastatic to my lungs. I also was in a Phase I trial that didn’t work out. I’m in the process of figuring out next steps. Thank you for sharing your story on this blog. May you find peace and strength with your family.

    Onward and upward!


  7. I am inspired by your positive and realistic attitude. This will be your savior as time moves forward.
    I am here for you!!


Leave a Reply