Listen to HER2: Side Effects Can Be Tough, but I’m Grateful for My Body’s ‘Exceptional’ Response to Metastatic Breast Cancer Treatment

August 9, 2017

Jessica Leip was diagnosed with estrogen receptor-positive, HER2-positive metastatic breast cancer in 2013. For Listen to HER2, Jessica writes about her diagnosis, HER2-targeted therapies and advocating for yourself.

My name is Jessica Leip. I am a stay-at-home mom living with metastatic breast cancer. My family is the most important thing to me and my fuel to keep fighting this disease and never giving up. Some days I want time to slow down but most days I silently pray for a fast-forward button so I can see my children grow up and be there for all their important milestones. I cherish my life and all the time I have with my family and make the most of every moment. 

July of 2013, a lump was detected by my OB-GYN in my right breast. Other than the lump, I had no pain or symptoms. That same day, I was instructed to go straight to the hospital where I had my first mammogram followed by a sonogram and then biopsies of the lump and axillary lymph nodes. I went home that day with assumptions that this was probably a cancer diagnosis and that it was not looking good. After pathology confirmed stage IIB triple-positive breast cancer, with 90 percent estrogen receptor-positive and a high, 3+ expression of HER2, I started neoadjuvant [pre-surgery] chemotherapy treatment. After a breast MRI, I experienced chest pain and went into the emergency room to get checked. The pain turned out to be muscular but I was given a CT scan to make sure and that is where many tumors were found in both lobes of my liver as well as bones in my back: my thoracic and lumbar spines and my sacrum. My cancer was then determined to be a de novo diagnosis: metastatic breast cancer from the beginning.  

My treatment approach started as neoadjuvant chemotherapy until the mets were discovered and then I needed heavy doses of taxane chemotherapy along with targeted therapies and aromatase inhibitors. I also had a bilateral oophorectomy [removal of the ovaries]. I have had a tremendous response to the targeted therapies and have gotten 3 years of mileage so far out of the trastuzumab (Herceptin)/pertuzumab (Perjeta) combination. I have surpassed the median survival rate of 3 years and some may call me an outlier at this point.

The treatments were really hard on me. I was on heavy doses that gave me fevers and dehydration. I had to have a couple dose reductions because there were some weeks that I couldn’t tolerate it. The drugs made my fingernails and toenails lift up and some fell off completely. The neuropathy [numbness, pain, burning, tingling or loss of feeling in the hands or feet] was also bad and I had trouble tying shoes or using buttons. I started weekly acupuncture which helped tremendously and brought back a lot of the feeling in my hands. I do still have mild neuropathy that is permanent but it is not disabling anymore. Water retention in my legs was painful and I had to wear compression stockings whenever I was out of bed.

Letrozole (Femara) was the first aromatase inhibitor I took. I was on it for over a year and it caused my joints to be so stiff that I could barely walk each morning when I got out of bed. My oncologist switched the aromatase inhibitor to anastrozole (Arimidex) about 10 months ago and the joint pain has significantly decreased.

The Herceptin/Perjeta combo is tolerable every 3 weeks although I know my heart is slowly paying a price. My ejection fraction [a measurement of how well the heart is pumping blood] fluctuates and dances on the threshold of normal for the most part. It definitely drops below the threshold and I get easily winded when walking too fast or climbing stairs. My oncologist has told me that until I become significantly symptomatic, I will not stop the H&P cocktail. As long as it doesn't fail me, I can stop for a few months and let my heart get stronger and then jump back on the Herceptin and Perjeta.

There are other, smaller problems with the targeted therapies, like gut issues. They rip my stomach apart for the the 24 hours after treatment. The Herceptin gives me a constant runny nose. I've had in-depth conversations with my oncology team about being HER2-positive and the fact that I have responded to treatment exceptionally well. My body was loaded with tumors but currently I have no evidence of disease. I am so grateful for targeted HER2 therapy because it has given me the last 4 years with my family and I pray it will give me another 40.

Nothing about living with metastatic cancer is easy. For me, the most important piece of advice I could give is to be your best advocate. Know your complete diagnosis and know all your options. Never stop asking questions and getting answers and have a trusting and open relationship with your oncology team. Also, support is so important. I didn’t know anything about metastatic disease when I was first diagnosed. I certainly didn’t know about subtypes and what a HER2 protein was. I scoured the internet and pretty much had my coffin nailed shut, mentally. My oncologist specializes in HER2-positive breast cancers and she assured me that with the targeted therapies available at this time, I didn’t have an immediate death sentence. I found online support groups and attended national conferences for people living with my disease and the loneliness of a stage IV diagnosis quickly went away. I got answers for my questions about symptoms, drugs and side effects from people who were walking in my shoes.  

Jessica Leip is 41 years old and the mother to 8-year-old Hannah and 7-year-old Isabel and stepmother to 20-year-old Justin and 15-year-old Courtney. She lives in Framingham, Massachusetts with her husband Scott and the children. Read more Listen to HER2 stories here, including Scott’s story of being a caregiver for Jessica.

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