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Trusting in Treatments -- and Living With Side Effects

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Beth Ayen - Blogs
By Beth AyenJune 02, 2021

Everyone’s myeloma treatment journey is different, including mine, but I find sharing experiences to be helpful and comforting. It spurs conversations with doctors about questions and concerns. It's common for myeloma patients to try multiple regimens throughout their journey, and I’m no different. In 23 years, in addition to numerous radiation treatments, I have undergone nine different chemotherapies.

Early Days: Radiation, Chemo, Steroids, and a Stem Cell Transplant

When I was first diagnosed in 1997, at 29 years old, I was only offered one type of chemo. It was called Red Devil because it was bright red in color and was extremely harsh on the body. I got the chemo in a vein and took steroid pills along with it. I had two small children at home, which made the fatigue, nausea, and diarrhea difficult to deal with. I relied on nausea meds, which at that time cost $50 a pill. I also lost my hair for the first time. My 5-year-old daughter couldn’t stand to look at my baldness, so I would always wear some sort of covering in front of her. My 3-year-old son, however, loved to rub his hands all over my smooth head.

After 5 months with no progress, the oncologist recommended an autologous stem cell transplant. We used a different type of chemo for that process. It killed my bone marrow. Because of what it does and how you get it, there are extreme side effects. Nausea, diarrhea, and fatigue to the point of not being able to get out of bed were constant for 30 days while I was in the hospital. I vomited almost every day for the year after my transplant. I was thankful for my husband’s flexible job. He could come home at the drop of a hat to take care of the kids when things got bad.

Remission, Then Relapse

After my transplant, I went into a 12-year remission with no treatment, and my body returned mostly to normal. Then I relapsed. The first line of treatment was radiation followed by systemic chemotherapy. I got it orally, which allowed me to keep my hair. What a blessing! A second drug that I got as a shot caused a small amount of skin irritation. The only other side effects were a little fatigue and some minor weakness. I worked as a full-time teacher, but then began to develop severe neuropathy in my hands and feet, so I stopped treatment for about a year.

Lesions Return

Eventually I began developing more lesions. After radiation, we began a new combination treatment, and I had some serious side effects.  I developed cataracts that worsened over time. I developed, and was treated for, a pulmonary embolism. I also had an extreme infusion reaction to my first dose of targeted therapy. The normal pre-meds didn’t help, so my husband went to the pharmacy  for a different type of allergy medicine my doctor had just read about. It worked great to slow down my severe rash and shortness of breath.

Another Relapse

After 3 years, I relapsed again. Radiation was followed by chemo. This regimen did not work for me. After four rounds of treatment and three hospitalizations for pneumonia, in pre-COVID 2020, we discontinued the chemo to let my body heal. During this time, a lesion on my sternum began to grow into a 4-by-3-by-3-inch tumor.

The doctors weren’t comfortable doing radiation on my sternum. They felt they had treated it too many times and more could adversely affect my bone marrow. They tried a drug especially for relapsing multiple myeloma, but it didn’t work. There were no side effects, just the fear from it not working and wondering what to do next.

I tried another new drug designed to help with relapsing or recurring multiple myeloma, but it severely affects your corneas and causes excessive dryness and blurriness.  I was required to see an eye doctor before each treatment to make sure this side effect would remain reversible.

My sternum tumor continued to grow and other lesions came back. There was no improvement to my myeloma after 4 months, and the side effects to my eyes were serious. My cataracts were so bad I could no longer drive or read. I have since had cataract surgery.

A New Combination

My current treatment, also a combination targeted therapy, is new to the market. After 1 week, I could feel the sternum tumor melt to half its size. By the end of the second week, it was completely gone.

My light chain numbers incredibly dropped from 70 to below 1 within a month (numbers are higher when multiple myeloma is active). I have experienced some mild nausea, low blood counts, neuropathy, and lack of appetite. I am grateful for mild side effects -- many people have experienced much worse on this regimen.

Radiation and Chemo: Long-Haul Treatments

Two things have been consistent throughout my journey: radiation and that very first steroid I received.  Multiple myeloma responds well to low-dose radiation, so it has been the first course of treatment every time. I’ve had 193 treatments through the years on my sternum, skull, orbital bones, spine, iliac bone, heel, foot, femur, scapula, ankle, and several ribs. Because of the low dosages, the side effects have been minimal, usually just some fatigue.

The steroid is a different story. I swore after the first time that I would never take it again because it’s horrific. I was wrong. It has been part of every treatment. All of them. That means years of sleepless nights, weight gain, sweating, excessive talking, and moon face. I remember doing a lot of crafting in the middle of the night, like making new Christmas stockings or scrapbooking.

After my stem cell transplant, and the 12-year remission, the steroid caused severe emotional issues. I would get angry very quickly, especially with my husband. My filters were no longer working and there was a lot of yelling and crying. My doctor decreased the dose, which helped, and I learned  to recognize the warning signs so I was able to step away from the situation before any damage was done. Now I’m back up to the full dosage and all the other side effects and more are still there, but the anger is mostly under control.

Looking to the Future

It’s a difficult journey navigating through these treatments and not knowing if they’ll work or not, or if I’ll be really sick. I’ve discovered I need to trust God and know that whatever comes next is meant to help me and continue my life.

We may run out of options someday, but we aren’t there yet. Side effects are just a part of the process, and my medical team is there to help me manage and get through those. I will just keep fighting and trying anything I can to get me through.

 

Photo Credit: Cavan Images via Getty Images

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About the Author
Beth Ayen

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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