Living With CLL Archives

December 7, 2023

Update 7.75 Years – Captivate Trial

I am pleased to give a 7.75 year update. I was first diagnosed in January of 2016. You can see my 3 year article update here. I unfortunately progressed quickly having large lymph nodes and my FISH test revealing 55% 17p deleted and trisomy 12.

November 28, 2023

Art Is Long Life Is Short: What Matters in My and CLL Society’s Work

Hippocrates said: “Art is long, and life is short.” The creation outlives its creator. How does that translate to my work and the work of the CLL Society?

November 27, 2023

Cycle 4, Epcoritamab Trial for CLL / SLL

I have been mostly silent on my blog as there has not been much to report related to my phase 1 clinical trial for my relapsed chronic lymphocytic leukemia (CLL). No news is good news.

November 15, 2023

Finding Support in CLL Society as a CLL Care Partner

As a caregiver to my husband who currently has three cancers, I can truly say that the most significant help I have gotten has been from CLL Society.

November 14, 2023

CLL Society’s COVID-19 Action Plan Continues to Help Years Later

I’ve kept my filled-out copy of the COVID-19 Action Plan pinned to my home office bulletin board for the past couple of years. It seemed superfluous since I have a very responsive oncologist who is a CLL expert.

October 31, 2023

Cycle 3, Dose 1 Day 4 Epcoritamab Trial for CLL (Chronic Lymphocytic Leukemia): All Good

My last three doses of full-strength epcoritamab (48 mg) have been nonevents. There was some mild fatigue and itching the next day, but there is really nada to report. No cytokine release syndrome (CRS), for sure. All good.

October 16, 2023

Tim Landry’s Journey with Chronic Lymphocytic Leukemia: Ten Treatments and Counting

When Tim started to feel ill, the exact cause was unknown for a long time. It wasn’t until he presented with enlarged lymph nodes that he was referred to an oncologist who diagnosed him with CLL

October 13, 2023

GREAT NEWS: Results of Restaging Scans for My Epcoritamab Trial for CLL

I am very close to complete remission, with only one node still greater than 1.5 cm in its longest diameter.

October 12, 2023

Restaging My Chronic Lymphocytic Leukemia (CLL) After Seven Doses of Epcoritamab for My CLL: Your Mileage May Differ

I will soon be rescanned to see if my total of seven doses, with the last three being the full therapeutic dose of 48 mg of epcoritamab, has shrunken my lymph nodes.

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Living With CLL

Update 7.75 Years – Captivate Trial

Art Is Long Life Is Short: What Matters in My and CLL Society’s Work

Cycle 4, Epcoritamab Trial for CLL / SLL

Finding Support in CLL Society as a CLL Care Partner

CLL Society’s COVID-19 Action Plan Continues to Help Years Later

Cycle 3, Dose 1 Day 4 Epcoritamab Trial for CLL (Chronic Lymphocytic Leukemia): All Good

Tim Landry’s Journey with Chronic Lymphocytic Leukemia: Ten Treatments and Counting

GREAT NEWS: Results of Restaging Scans for My Epcoritamab Trial for CLL

Restaging My Chronic Lymphocytic Leukemia (CLL) After Seven Doses of Epcoritamab for My CLL: Your Mileage May Differ

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