March 2024 - Therapy-Related Acute Myeloid Leukemia (AML) with Myelodysplastic Syndrome (MDS)
AML/MDS is cancer of the blood-forming tissues, including the bone marrow, occurring after previous exposure to radiation or chemotherapy for another cancer…essentially a direct consequence of genetic mutations over time induced by chemotherapy treatments. So yes, the very treatment that saved Kevin's life and sent him into remission 4 years ago has now played a significant role in creating a completely different monster. We are gearing up for a battle that is anticipated to last upwards of one year, but we aren’t rookies at this cancer fighting thing and plan to give it everything we’ve got! Giving up is NOT an option, but many prayers are needed to support this fight as it is not going to be an easy one.
January 2020 - Burkitt's Lymphoma
And the journey begins....
After nearly a month of "just not feeling right" and a trip to our family medical provider, a string of blood work, tests and referrals led to a biopsy of some abnormal appearing tissue in the abdomen. On January 29th we returned to our primary MD and received the results....a diagnosis of lymphoma had been confirmed. The biopsy sample had already been forwarded on to the Mayo Clinic for further testing to confirm the specific type of lymphoma even before we had received the news.
An immediate referral was made to the Coborn Cancer Center and the first appointment scheduled for the following day. On January 30th, we walked into the initial consult expecting to learn more about what lymphoma was, what a treatment plan might look like and what exactly that meant for our future. Partial Mayo Clinic results had been returned and the oncologist informed us that it was Burkitt's Lymphoma, a very rare form of lymphoma that that accounts for only 1-2% of all types of lymphoma cancers (white blood cell cancer). The good news....it appeared to be isolated to the intra-abdominal lymph nodes, with the largest mass being the approximate size of a grapefruit. The bad news....this type of lymphoma grows and spreads rapidly due to ALL cells dividing at once repeatedly (rather than 1x1 in many other forms of cancer) with a high prevalence of occurrence in the spine and brain.
As if this news was not enough to absorb, the oncologist went on to explain that due to the rapid progression of Burkitt's along with high risk of travel through the spine to the brain, treatment would need to begin immediately. High density chemotherapy was the plan to hit it hard....and this was going to require an immediate admission to the St. Cloud Hospital.
Once at the hospital, CT scans of the chest and neck, MRI of the brain and bone marrow biopsies were ordered to confirm that it had not spread to any other locations in the body....in addition to an extensive amount of bloodwork. The procedure to place the implanted port in the chest through which chemotherapy would be administered was also completed.
On January 31st, the first cycle of chemotherapy was started (with the expectation that this will require 4-6 cycles total throughout the course of treatment). Day 1 included not only 3 different chemo medications via IV into the port, but a 4th medication administered intrathecally (directly into the spine) to help prevent the spine to brain risk. Days 2 and 3 included chemo delivered via IV only.
The first cycle of chemotherapy covers the course of 10 days...all to be administered in the hospital. Due to the intensity of the chemotherapy treatment that the oncologist has prescribed along with the potential risks that could result, several additional days will need to be spent in the hospital for monitoring (anticipated 2-3 weeks total). Our goal release date from Cycle 1 is February 14th.
4 weeks after the start of Cycle 1, we return to the hospital for Cycle 2 (so approximately February 28th). Fortunately, the plan for this Cycle is 5 consecutive days of chemo treatment...so hopefully a much shorter hospital stay. From that point forward, the remaining Cycles will alternate between the 10 day regimen to the 5 day ….with the plan for all of these to be completed as an inpatient at the hospital.
Side effects and risk factors are extensive....so much so that we are not really sure what to expect at this point. One of the most common, however, is the certainty that chemo will significantly decrease the white blood cell count and increase the risk of infections and other illnesses.
Despite a whirlwind 4 days and the devastating news, we have so much to be thankful for. We are thankful that we got the answers that we needed and that this was diagnosed so soon. Scan results were that this is indeed isolated to the abdomen....there is no indication that this has spread to the chest, neck, spine or brain. Though we still await the bone marrow biopsy results, we are optimistic that this too will be positive news. We are thankful that treatment could begin immediately and that this is a type of cancer that responds very well to chemotherapy. We are also thankful that there is a high success rate with treatment and the prognosis is good and overall cure rate is high.
We are ready to face this fight head on....with every intention to win it!
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