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Brandon Suttles is a father of two young children. A husband. A horror fan. And for the past two years, Brandon has risen to the challenge of becoming something else. A warrior.
Diagnosed with Myelodysplastic syndrome (MDS), a form of bone cancer, in 2019, Brandon has been brutally honest about his battles and struggles on his Twitter account @BrandonSuttles6, posting daily updates on his condition and, when feeling up to it, his thoughts on the latest horror movies he’s been watching. While in the hospital recently, Brandon watched a series of movies including Psycho Goreman, Host, Willy’s Wonderland and Brian De Palma’s Sisters, finding an escape through the world of fictional horrors.
But this isn’t an article about Brandon’s favorite horror movies, which perhaps he’ll be kind enough to share with us soon. At the time of writing this article, Brandon is getting ready to begin a new round of chemotherapy that may keep him in the hospital for another month. And Brandon and his family could use our support as he begins this latest round of the fight.
The #FightWithB campaign asks fellow horror fans to join Brandon in his fight with cancer, a battle all of us here on BD are fighting with him. But first, a bit about Brandon and what he’s been going through these past couple years. Together with his brother-in-law Dr. Brad Beeler, an Oncologist/Hematologist – “He is a big part in helping to save my life right now,” Brandon tells me – Brandon wanted to recount his story in the hopes that it will help others facing down the same fight, as well as bring awareness to the disease he is prepared to beat.
“I’m grateful that my wife will be able to be with me during this process, but not being able to see my kids really hurts,” Brandon tweeted earlier this week. “I’ll let it get to me tonight and wake up tomorrow ready to take on the world and kick cancer’s ass!” That same positive spirit is present in Brandon even on his toughest days, no matter the odds or challenges.
That’s Brandon, and this is his story.
“Myelodysplastic syndrome (MDS) is a form of bone marrow cancer. Myelo – meaning marrow, and dysplasia – meaning abnormal blood cells. The bone marrow is responsible for making all of our blood cells, and this includes the following; red blood cells (RBC’s), white blood cells (WBC’s), and platelets. MDS is generally a disease of the elderly. The average age for diagnosis is actually 70 years old, and in fact being diagnosed with this disease before the age of 50 is a rare occurrence. I like to explain MDS using an analogy of cars being manufactured on an assembly line. Something goes wrong on the assembly line, and the cars that are being manufactured have notable abnormalities. It can certainly still make the cars, but they are defective (hence dysplasia). It is a pre-leukemic condition that presents very heterogeneously. What I mean is… some folks may be mildly impacted, and some folks may be severely impacted (that’s me). The fear is that the assembly line continues to perpetuate abnormal cars (cells), and ultimately stops making any normally functioning cars (cells), metaphorically turning into acute leukemia, which is again, me.
“As mentioned MDS affects individuals to a varying degree. It is classified into the following risk categories; very low, low, intermediate, high, and very high (again, me). Some folks with low risk disease may be observed for years before any intervention is required. Some folks, very high-risk, require chemotherapy and ultimately stem cell transplant, which remains the only cure for this disease. In fact, transplant is recommended for any patient with intermediate, high, and very high-risk disease.
“I was diagnosed with this condition in October of 2019. I presented to a local ER with symptomatic anemia and was found to have pancytopenia. Pancytopenia – means low everything… Low RBC’s, low WBC’s, and low platelets. Low RBC’s is termed anemia; most males live with a hemoglobin around 12-16g/dL, but mine was 5 g/dL, and I was constantly short of breath and exhausted. My WBC was very low, in fact my absolute neutrophil count (ANC) was essentially zero. Neutrophils are part of the innate immune system that gobbles up pathogens, critically important for preventing bacterial and fungal infections. Most folks have an ANC greater than 1500; it gets of critical concern once it is less than 500 (my ANC has been lower than 500 for essentially a year). Not long after I was admitted to the ER for work-up of the pancytopenia, I was re-admitted for a complicated pneumonia, which was indirectly related to my immunosuppressed state. Platelets are responsible for preventing bleeding sequelae; most individuals have a platelet count around 150,000 – 450,000, mine… were 12. So, as you could imagine I was at risk for spontaneous bleeding.
“Given my age, 36 at diagnosis, and the rarity of this disorder in individuals fitting my demographic, it actually took a couple of months to establish the diagnosis. It also took many bone marrow biopsies, which are not very fun to experience, and I have had this procedure done countless times now. My molecular work up revealed the presence of TP53 mutation; a very high-risk mutation, as TP53 is a critical tumor suppressor gene. Essentially this is a guardian gene, and if something is defective within the cell (car in our analogy) it forces apoptosis, which is programmed cell death. So, if the cell has an abnormality apparent, then this gene forces immediate cell death. It does this to not propagate abnormalities. My gene is mutated; thus, I can’t stop the abnormalities, making my situation all the more critical.
“I started out with decitabine, a form of chemotherapy. I got this via IV infusion for 5 days, and spent the remaining weeks recovering. My counts were not recovering as quickly, and I had evidence of blasts (leukemic cells) in my marrow. Just because I have the leukemic cells noted in my bone marrow it was not quite enough to establish the diagnosis of acute leukemia (which requires 20% blasts). In fact, many individuals with MDS may have some blasts in the bone marrow ( this is not an uncommon occurrence), but the more you have, the higher the risk. In addition to the decitabine, I was started on venetoclax. This is a small molecular inhibitor of bcl-2. The original data that came out about venetoclax was with chronic lymphocytic leukemia (CLL). Recent data shows some excellent progress made with leukemia and high-risk MDS. The bcl-2 gene, if expressed, is an anti-apoptotic gene; essentially if present it gives cells immortality. I did a few months on this therapy and progressed. The first transplant was tentatively scheduled but this ultimately was not pursued.
“I think it important to remember that these events were all ongoing during a global pandemic. I had to be extra cautious about transmission of the COVID-19 virus. It is well known that people with cancer simply do worse if they have this. Unfortunately, this pandemic probably delayed volunteer donor willingness to pursue transplant.
“After the progression I was placed on a clinical trial at Vanderbilt with pevonedistat and azacitidine. Pevonedistat is an HDAC inhibitor used for various malignancy, and azacitidine is a brother to decitabine; both are hypomethylator agents. Unfortunately, I progressed on this regimen, and I was admitted to the hospital for further evaluation after progression. Right around Christmas in 2020 I was diagnosed with acute leukemia, specifically acute myeloid leukemia (AML). Technically, if I wanted to get more specific, I would say AML-with antecedent MDS. This specification essentially signifies disease that may be refractory to standard treatment options.
“During this process I received countless transfusions for exceedingly low hemoglobin levels, and low platelet levels. I was admitted about once every 2-4 weeks for infectious complications. I was admitted for pericarditis, a heart attack, various procedures, and pain related to my disease. All the while being a father, and amidst a global pandemic. To say that it has been difficult for my wife and I, is an understatement, but I remain steadfast and resilient.
“I was admitted on 12/29/20 for 7+3 chemotherapy. This is 7 days of continuous infusion IV cytarabine (24 hours/day for 7 days), along with 3 days of idarubicin. This gets about 70% of patients in a complete remission, meaning no more leukemia. My bone marrow unfortunately revealed refractory disease. I then started CLAG-M (cladribine, cytarabine, G-CSF, and mitoxantrone) about three weeks ago. Fortunately, the bone marrow biopsy revealed remission, and we are awaiting the follow-up bone marrow to see if the remission was complete (all gone) or partial (mostly gone). But as it stands for now, these are results I have been wanting to hear. “Something worked!”
“Next my team in Vanderbilt will mobilize volunteer donors from the NMDP (National Marrow Donor Program)/Be The Match, and hopefully I will have a transplant in the coming weeks. I will likely have a course of consolidative chemotherapy prior to the transplant to maintain my remission status.”
“All in all, thank you for reading. I am happy to chat any time about this. It is my livelihood and passion.” -Dr. Brad Beeler/Brandon Suttles
If you’d like to #FightWithB, a Go Fund Me page has been set up to help Brandon and his family with medical expenses. You can also buy a #FightWithB t-shirt to show your support, which can be purchased through the Fight With B Facebook page. T-shirts in adult sizes are $20, with a horror-inspired graphic on front. You’ll find an image of the t-shirt design below.
As Brandon makes sure to point out, there are others battling MDS and other forms of cancer who need your help just as much. “A good way to help is to become a bone marrow donor at BeTheMatch.org. They send a kit to your home and you swab your mouth and send it back in,” he tells us. “Fortunately, I have a match. The chances of having a match on the registry is 77% if you are Caucasian, 46% for Hispanic, and a dismal 23% if you are African American.”
Brandon continues, “The reasons for the under representation of minority folks are likely multi-factorial but one could conjecture that issues such as access to care, and medical distrust (understandable), are some form of systemic injustice.” Brandon isn’t just fighting AML/MDS for himself and his family. He’s fighting for everyone touched by the disease.
If you’re able, join the battle and #FightWithB.
