While Cancer Mutations Are Scary, They Offer Hope for a Better Future

I truly am beginning to hate the word “variant.”

In 2020, our whole world changed, and we began to learn a new vocabulary related to the COVID-19 pandemic. Two years later, these words are commonplace and even small children understand their meaning. Masking up, social distancing, COVID-19, Delta variant, Omicron variant, remote learning and workare just a few examples.

One of these words new to many of us lay people was “variant.” According to the CDC, “Original viruses constantly change through mutations and sometimes these mutations result in a new variant of the virus. Some variants emerge and disappear while others persist.”

I was always interested in these variants because if a new variant of COVID-19 arises, it could be wildly contagious like Omicron and ruin our holiday and travel plans. I've been following the COVID-19 news because I am desperate to go out, visit people, travel and visit restaurants again.

What I never dreamed was that a variant would also affect my cancer journey. I have been battling myelodysplastic syndrome (MDS), a type of cancer in which immature blood cells in the bone marrow do not mature or become healthy blood cells, since 2010 and have been on several regimens, including Revlimid (lenalidomide) and Vidaza (azacitidine). For the past three years, I was fortunate because my cancer stabilized, and my oncologist wisely had me go to the infusion floor every week for Retacrit (epoetin alfa-epbx) and Zarxio (filgrastim-sndz) shots to keep my red and white blood cell counts where they needed to be.

All seemed well until my hemoglobin begandropping, and my doctor referred me to the Cleveland Clinic. I was told that my blood work showed a “suspicion” of a mutation called TP53 but could not confirm it. Of course, I had no idea what this could mean.

But then COVID-19 hit, and I continued getting the shots at my local hospital. In 2021 I had extensive blood work done, which could hopefully rule out the need for a painful bone marrow biopsy. Results showed confirmation of the TP53 mutation. I went back to the Cleveland Clinic under the care of a world-renowned expert in MDS, Dr. Hetty Carraway.

She explained to me that this MDS variant was dangerous and resistant to chemo. She ordered a bone marrow biopsy which gave us more information. Clonal evolution was occurring, which meant this mutation was causing more changes in the cancer cells. Several treatments were recommended, including a bone marrow transplant, clinical trials and other drug regimens.

The study of genomics continues to lead scientists to discover new diseases and more personalized treatments. Unfortunately, my TP53 did not show up until recently and is extremely resistant to chemo. After much consultation, I decided to start a new drug approved in 2020 by the FDA called Reblozyl (luspatercept-aamt).

COVID-19 changed all our lives, and TP53 may potentially change my life expectancy. But I also feel lucky that I am living in an era when there is so much groundbreaking research being done by the amazing scientists. The pandemic is under better control than it was months ago, and we know much more than we did at the beginning of this crisis.

Similarly, I hope the predictive values of TP53 for detecting future cancers will be a huge help in the treatment of cancer. 

Presently there is no treatment to target this deadly TP53, but there may be in the future. The one emotion we all can keep is hope.

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