Updating with information related to Lance's Iron Overload condition he was diagnosed with last year. Note: He's doing well. He's in college. Still under treatment at the Children's Blood and Cancer Center (CBCC).

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Secondary Iron Overload

*** AWARENESS/ADVOCACY POST – THIS IS NOT MEDICAL ADVICE ***

Sharing Lance’s experience/impact related to receiving red blood cell (RBC) transfusions during his cancer treatment for T-Cell Acute Lymphoblastic Leukemia (ALL) with hopes that, at a minimum, it provides an education perspective for others.

Lance’s chemo treatment plan ended December 29, 2017. He has been under either primary treatment or follow-up care at the Children’s Blood and Cancer Center (CBCC) at Dell Children’s since September 1, 2014.

NOTE: A common side effect of chemotherapy treatments is low blood counts. In response to low blood counts RBC transfusions are a necessary treatment.

Our Message: If your child is receiving RBC transfusions during cancer treatment, advocate for complete monitoring and detailed understanding of the impact of these transfusions on their body. Your care team likely is monitoring the key liver, kidney, and heart function indicators, but may not be understanding the whole picture that, in Lance, went hidden and resulted in “life threatening” (care team comment) Liver Iron Concentration (LIC) levels. Tools that brought focus for Lance’s condition were:

• Abdomen MRI assessing LIC and Hepatic Iron Index (HII)
• Cardiac MRI assessing for iron concentration and disease
• sonogram-like device called a FibroScan that assesses fatty liver disease and fibrosis/scarring of the liver.

Background: In September of 2020, Lance was clinically diagnosed with Transfusional Hemosiderosis which is the accumulation of iron in the liver and heart but also endocrine organs, in patients who receive or did receive frequent blood transfusions. This diagnosis is also called (Secondary) Iron Overload (IO) and is often mentioned with (Hereditary) Hemochromatosis. Severe IO causes the same symptoms as in hemochromatosis and can lead to conditions such as: fibrosis/scarring, cirrhosis, diabetes, heart failure, infertility, joint pain, and liver cancer.

The reason we are raising awareness on this condition is:

• When discovered, five (5) years had passed since Lance’s last RBC transfusion. Time is an enemy.
• Care team didn’t think Lance had *that many* RBC transfusions. Discovery on what *that many* or the term *frequent* means led to seeing multiple variations of guidance. Lance had 20 RBC transfusions. Different articles/medical professionals give different guidance. Some say once you pass 10 transfusions you need to be concerned, some say 20, some say 40, …
• Care team thought 2 or 3 therapeutic phlebotomy sessions would “clear things up”
• We were not medically advised to get a level-set of where Lance was at diagnosis of the IO condition. Treatments started with no understanding of what his LIC level was, or what his HII was, or if any other organs were involved.
• After 3 treatments and discussions of Lance transferring care to some other team, we (parents) strongly advocated for MRIs of Lance’s liver (abdomen) and heart (cardiac). In December of 2020, an Abdomen MRI measured Lance’s LIC at 13.3 grams which is in the moderate/severe range. It also showed iron concentration in Lance’s spleen and bone marrow, and this was AFTER 3 phlebotomy sessions.
• This was shocking not only to us, but to his care team. A care plan was put in place with specific goals based on measurable numbers, chelation was added, and additional care team members were brought on board (GI, Cardiologist, adult Oncologist).
• NOTE: Calculations put Lance’s LIC at 20 to 23 grams in September of 2020 when his IO condition was initially diagnosed. This is in the severe LIC range, and Lance was in this severe range for five (5) years.
• NOTE: a 20-year-old liver should have under 1 gram of iron stored in it.
• As of the writing of this post, Lance has received 10 therapeutic phlebotomies. Goal is to get Lance’s Serum Ferritin below 100, at which time an abdomen MRI will be performed to measure his LIC and assess if treatments can be stopped.