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Being the Outlier

Dad’s battle against cutaneous T-cell lymphoma.

Goodbye TSEB

Yesterday was Dad’s last TSEB (aka rotisserie) treatment.  Dad had a sense of relief knowing that he no longer had to endure the medieval torture.  Phew! Today, Dad started with a routine blood draw.  His hemoglobin level was acceptable at 8.7.  The two neupogen...

Wash Your Hands

Dad’s Monday started early with a blood draw at 7:30 a.m. at the Moffitt Cancer Center at International Plaza (MIP).  He then met with Mark Honor, physician assistant, at 7:45 a.m.  Dad’s platelets are down to 13.  His white blood cell count is low at 0.4,...

Two Hands

God has given us two hands, one to receive with and the other to give with. Billy Graham It is important that we, recipients of the good works of others, recognize and appreciate the organizations that are making a positive difference in the fight against cutaneous...

A Short Pause

The original plan for this week was for Dad to complete his TSEB (total skin electron beam; aka the rotisserie) therapy. Monday, January 18th:  No appointments on Monday, January 18th, due to the U.S. Holiday for Martin Luther King, Jr. Tuesday, January 19th:  Dad met...

A Full Time Job

At 8:00 a.m., Dad started his Friday at the Moffitt Cancer Center at International Plaza (MIP) with the traditional blood draw, which indicated that he needed platelets and red blood cells. At 10:00 a.m., Dad had an appointment at South Tampa Dentistry to obtain the...

He’s Not Chicken

Dad started his total skin electron beam (TSEB) treatment on Monday.  He will complete 8 sessions, once per day, for this second round of TSEB.  Dad had his first round of TSEB treatments this past summer.  It really did “melt” those tumors away.  We are...
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Who is Dad?

Presently, the risk of an American man developing cancer during his life is nearly 1 in 2.  In 2013, Dad was the 1 in 2 diagnosed with cancer (of any type) and 1 of 3,000 new cases  of cutaneous T-cell lymphoma (CTCL) in the U.S.  Dad was 1 in 450 CTCL cases which were diagnosed as Sézary syndrome.

Who is blogging?

The primary blogger journaling Dad’s roller coaster called “cancer” is his daughter, Jennifer.  Additional bloggers may include other family members.

Why this blog?

We are sharing Dad’s story so that we highlight the experiences of a real patient, a caregiver, and his family affected by cutaneous T-cell lymphoma (CTCL).  We want to raise awareness and share the results of the various treatments attempted for this uncommon disease.  Most importantly, we want to  give inspiration and hope to all families waging their personal wars against CTCL.

What is cutaneous T-cell lymphoma?

“Cutaneous T-cell lymphomas (CTCLs) constitute a group of non-Hodgkin lymphomas (NHLs) of the skin.  CTCLs are cancers of the T lymphocytes (a type of white blood cell) that mainly affect the skin but can also involve the blood, lymph nodes and/or internal organs in patients with advanced disease.  There are many types of CTCL. The two main subtypes are mycosis fungoides (MF) and Sézary syndrome (SS). Initial signs of MF include skin patches, plaques or tumor nodules. SS is a type of CTCL that affects both the skin and the blood.” — Leukemia & Lymphoma Society

What is Sézary syndrome?

“Sézary syndrome (SS) is a more aggressive, leukemic form of CTCL, with widespread skin effects, enlarged lymph nodes and the presence of significant numbers of malignant lymphocytes (called ‘Sézary cells’) in the blood. The disease is characterized by an extensive red rash, itchiness and sometimes loss (sloughing) of the exterior layers of the skin. These patients often have skin infections due to the extensively compromised skin.” — Cutaneous Lymphoma Foundation

Dad’s Cancer Team

Dr. Ernesto Ayala

Blood & Marrow Transplant

Dr. Frank Glass

Cutaneous Oncology

Dr. Michael Montejo

Radiation Oncology

Dr. Lubomir Sokol

Malignant Hematology

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Deuteronomy 31:6