Birthday week

Birthday week

Yay!!! It’s birthday week and Grace turns 28 tomorrow (10/24/18).  We have much to be thankful for as her last scans showed improvement and she is physically doing well.  Other than the eliquis for her pulmonary embolism, she is not needing any medications and her only symptoms are a cough. Over the weekend we were able to spend some time with my brother and Grace’s cousins. Grace is looking forward to her birthday dinner tomorrow, but we now have to be extra cautious as she has low white blood cell counts making her incapable of fighting off infections (WBC 1.9, ANC 0.6).  Even the common cold could send her to the hospital.

This past Friday 10/19/18 we visited our City of Hope Oncologist to discuss our plan after she completes her 4th and possibly final cycle of chemotherapy on 10/29/18.  As we said before, because of the rarity of her cancer we do not have established treatment guidelines so we were making her chemo regimen based upon lung adenocarcinoma guidelines. Upon completing this 4th cycle of chemotherapy and obtaining a repeat CT, there will be three real options in no particular order of significance: 1) Continue through 6 cycles of chemotherapy and re-evaluate with imaging. 2) Stop chemotherapy and just continue immunotherapy with pembrolizumab if the next scan shows significant improvement or 3) Enroll in a drug trial with targeted immunotherapy that has shown potent preclinical application. Unfortunately, the local trial at City of Hope has been postponed until the end of November, which means we would likely need to relocate for a month or so to enroll in the only active trial for her disease.  This would mean moving to Houston to enroll in the MD Anderson trial (CUDC-907 HDAC inhibitor) or also San Francisco, which has the same trial.  In preparation, we will be traveling to the University of California, San Francisco 11/6/18 to discuss enrollment, as it would be an easier adjustment for Grace to move to Northern California than Houston.

NUT Midline Carcinoma facts

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