Alice Knowles Alice's Journey of Hope

First post: Jan 4, 2017 Latest post: Sep 5, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.

This journey started like this:

On August 10, 2016 , KathyAnn and I met with a urological oncologist because a renal mass was discovered in a CT Scan.  In the subsequent days, we received so many prayers and good wishes.  Two weeks later I had a  radical nephrectomy - removal of my right kidney.  The size of my kidney and tumor were just a bit smaller than a regulation size football.  On September 10, we met with the same doctor and were told that I do have renal cell carcinoma of an undifferentiated type, an aggressive cancer.  The margins were clear.  At that time the course of action was to follow-up with regular CT Scans to ensure that the cancer has not metastasized.

In November, at the first 3 month CT scan, the cancer had metastasized to my lungs.  At this point, a sample of the tumor was sent for  genetic/metabolic testing and  we would wait for another CT scan to monitor changes.  The diagnosis was still renal cell carcinoma of undifferentiated type - which does not lend itself to effective treatment.  

On December 15, the results from the metabolic test were completed - and 2 genes showed mutations - SMARCB1 and KEL.  We now have a more definitive diagnosis - Renal Medullary Carcinoma Stage IV.  The CT scan showed little change.  We were then introduced to a clinical trial.

On December 29, I enrolled in a Clinical Trial at Mass General Hospital.   I will be taking a medication, Tazemetostat, which is not yet FDA approved.  I take four of these tablets twice a day.  Everyone in the trial has the medication.  For the first 12 weeks, I will be monitored every 2 weeks at the hospital; I will receive a CT Scan every 8 weeks while enrolled in the study.  

It has been part of our journey that we had not anticipated.  The outpouring of love and support has been very kind, your kindnesses shielded us from frustration and discouragement, we were embraced by your warmth and sincerity.  Our gratitude can not be expressed in words. Each of you will be in our prayers and thoughts.  We believe that your spirits allowed us to lift our spirits

Alice and KathyAnn

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