Confronting a Hopeless Future Head-On: a True Example of Hope

by Brittany McNabb

WhatNexter of the Week PO18Guy was diagnosed with lymphoma after finding a lump behind his ear seven years ago. After a family history of cancer he thought, "This is it." He faced many fears as he was misdiagnosed, told that doctors couldn't fit him into their schedule, and that his specific type of lymphoma was almost too rare to treat. 

Po18guy What Nexter Of The Week

After seven years of fighting, James realizes that nothing can get him down. As long as he is living and breathing he is still fighting and working diligently to give hope to those that may feel hopeless.

  PO18Guy's specific diagnosis is AngioImmunoblastic T-Cell Lymphoma (currently in third relapse).

Family History of Cancer

Where to start? Chronologically is probably the best. My father and two of his four sisters all succumbed to cancer. As sad as this was, it had the beneficial effect of preparing me to hear that diagnosis at some point in my life. The only connection between all of us appears to be in an inclination of our bloodline toward weak immune systems.

Signs of Cancer

That having been said, I found a "lump" behind one ear in late April of 2008. I remember thinking to myself "So, this is it" when I discovered it. That preparation meant that I was not devastated to suspect cancer. My doctor of 25 years had retired the month before (of course!) and his replacement was relatively inexperienced. After blood tests, I receive the normal antibiotics. However, I soon developed fevers, night sweats, fatigue, and visible lymph nodes in my neck - highly reminiscent of the mononucleosis I had 35 years before. At my request, further blood tests showed that I once again had active mononucleosis.

Discovering Cancer

This told me (if no one else) that my immune system had failed, as mono is normally a one-time occurrence, with the immune system keeping it dormant thereafter. Since I was still thinking "cancer", the inexperienced doctor gave me anti-anxiety medication, which I still have. I made an appointment with my ENT doctor, as he had experience with immune systems and responses. He first mentioned the word "lymphoma" and said that we had to get one of those rapidly growing nodes out. However, his surgical schedule was filled for the new two weeks.

Hearing the Words "Don't Wait"

My wife called a major hospital seeking a surgeon, and was referred to an independent surgeon not far away. We met with him and he was able to perform an excision biopsy of a cervical lymph node the same week. He had worked with Fred Hutchinson Cancer Research Center and had a good basic knowledge of cancer. He said, "nothing against the older doctors, but as they near retirement, they may not be at the top of their game" and recommended a mid-career oncologist. Then, he gave me the advice, "If you ever hear the word 'wait' from a doctor, run for your life." That advice later saved my life.

Misdiagnosed

Tcll Address

We called for an oncology appointment, but the recommended doctor had just gone on vacation. We were referred to his partner, an experienced doctor who was nearing retirement age. After pathology results and a bone marrow biopsy, I was told that the lymph node exhibited "abnormal B and T cells" but the pathologist found no malignancy. This was later found to be a mis-diagnosis. Doctor said that he wanted to "wait" and see what developed. I ran for my life.

Receiving a Poor Prognosis

Even though I had no diagnosis, my wife (angel in disguise) had already made an appointment with a hematologist at Fred Hutchinson in Seattle, about an hour away. We met with a doctor in his 30s (still my doctor) who displayed an amazing level of knowledge regarding cancer and treatment. He ordered more sophisticated testing of the biopsy sample. The results were Peripheral T-Cell Lymphoma, Not Otherwise Specified (an unknown sub-type similar to AngioImmunoblastic T-Cell Lymphoma). This is a rare and aggressive lymphoma for which there is no standard treatment outside of a clinical trial. The prognosis was poor, with median survival of about two years.

Cancer Treatment Plan

"Coincidentally", this same doctor was their specialist in T-Cell Lymphomas. A bone marrow biopsy showed cancer in my marrow. Scans revealed that I had in excess of 50 tumors - the pathologist simply stated "innumerable" All of this within two months of finding that first lump. My wife asked him if he would treat me and the plan was begun. Treatment would have to be guessed at, since so little is known about T-Cell malignancies. I received four cycles of CHOEP-14, followed immediately by four cycles of GND. Treatment was tough, but against all odds, I received a full response.

Entering a Clinical Trial

Two months later, a scan revealed that it had immediately relapsed and four new tumors were developing. A relapse within six month of treatment drops the prognosis even further. I was scheduled for what remained: salvage therapy and palliation at home. Shortly thereafter, doctor called with information about a clinical trial of a new drug called Romidepsin, aimed at the exact cancer that I had. Entering that trial was a very easy decision.

A Third Relapse

I received a full response again and was asked to remain in the long-term study of the drug. I was in full response for four years (2009-2013), but then apparently relapsed with numerous auto-immune symptoms in July 2013. No longer responding to Romidepsin, treatment was stopped in early 2014, and the symptoms resolved on their own. Biopsies now confirmed that the cancer had morphed into AngioImmunoblastic T-Cell Lymphoma. A third relapse occurred in September 2014 and we briefly tried Belinostat before entering a trial of Alisertib. Failing the trial, we are now trying what is essentially a clinical trial with me as the only patient. My prognosis has been "very poor" since 2009 and my future is completely unknown.

Seven Years and Still Going Strong

Yet, entering my seventh year of this journey, I realize that I have nothing to complain about. This is difficult on the family, but has drawn us closer together. Our marriage is stronger. My faith prepared me for this journey, has sustained me through it, and is preparing me for the next stage, as well. I no longer believe in coincidence, as there were far too many providential aspects along the way. The bottom line is that this battle is not over until it's over.

Reflection

What Nexter Po18guy

WhatNext has helped me to connect with others and to share the journey. Most of all, WhatNext has enabled me to provide and restore hope to those who are confronting what appears to be a hopeless future.

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