Lindsay ▶ FL

Lindsay | Florida
Age: 45
Diagnosis: Stage 3 metastatic triple negative invasive carcinoma (spread to lymph nodes)
Chemotherapy Regimen: Keynote 522 (12 weeks of weekly Paclitaxel and Carboplatin) followed by 12 weeks of Doxorubicin (red devil) and Cyclophosphamide every 3 weeks, with Keytruda every 3 weeks
Total Treatments: 16 
Infusion Center: Moffitt Cancer Center

Tell us about yourself.
I was 44 years old when I was diagnosed with stage 3 triple negative metastatic invasive carcinoma that had spread to my lymph nodes. My mammograms for the prior three years showed no abnormalities, and I felt the two tumors myself just prior to my regularly scheduled annual mammogram. To say I was shocked by my diagnosis was an understatement! I was healthy with two young daughters (7 and 11), no family history of breast or other cancer, no genetic markers, and no symptoms whatsoever prior to feeling the lumps.

Due to the aggressive nature of this type of cancer, I was put on the Keynote 522 regimen which is six months of chemo coupled with Keytruda (16 total chemo infusions). The first 12 weeks of chemo is weekly Paclitaxel and Carboplatin, followed by 12 weeks of Doxorubicin (the dreaded red devil) and Cyclophosphamide every three weeks. My treatment regimen also included a double mastectomy after completing chemo with simultaneous total lymph node removal in my arm pit and a lymphovenous bypass surgery, followed by 30 radiation treatments.

How did you find out about DigniCap?
In the early days after my diagnosis, I did a lot of research and stumbled upon scalp cooling information before anyone on my oncology team told me about it. When I discussed it with my oncology team, they were supportive but cautioned me that with the aggressive regimen I would undergo, they did not feel scalp cooling would be successful. I was determined to prove them wrong!

 

“Keeping my hair through chemo was more than just preserving a part of my appearance – it became a symbol of strength, hope, and resilience“

 

Did you have a successful experience using DigniCap?
After my first 12 weeks of chemo, I had hardly lost any hair. My oncology team was encouraging, but again said since my next 12 weeks would include “red devil,” I would likely lose my hair. I was again determined to prove them wrong – AND I DID!!! Through 16 rounds of chemo, I kept my hair! Using the DigniCap was the best decision I made during this process, and enabled me to continue to feel like my normal self throughout all of this. I also feel it was a great benefit to my young daughters to cope with my diagnosis and the upheaval in our lives, as I did not “look” like a cancer patient, which helped make it less scary for them.

I did not quite know what to expect during the first scalp cooling, but it went much better than I anticipated. I experienced a headache during the pre-cooling phase, but quickly adjusted to it and never had a problem or a headache after that during any of the 16 chemo treatments. The extra time was a bit of an inconvenience (the cooling cap must stay on for two to three hours after the chemo infusions end depending on the drug regimen), but was definitely worth it to save my hair. Typically, about a week after an infusion I would experience the heaviest hair shedding, but it shed evenly over my entire scalp and I did not develop any bald spots.

Overall, I experienced hair thinning, but everyone I meet who knows my story says they cannot tell at all that I lost any hair. Prior to chemo/scalp cooling, I washed, blow-dried, and straightened my hair on a daily basis. I also regularly colored and highlighted my hair every 10 weeks. I had very long hair before starting treatment and cut it to my shoulders, as I thought it would be easier to take care of during scalp cooling, and would be less noticeable if my hair thinned. During treatment, I used Native shampoo and conditioner (free of parabens, sulfates, dyes, etc.), washed every other day, did not use a blow dryer or hair straightener, and did not have my hair colored. It was totally worth all of the effort to save my hair. I also discovered keratin hair fiber during treatment, which helped to cover my grays and thin areas, and was a lifesaver!

Why was keeping your hair during chemotherapy important to you?
While the diagnosis and treatment schedule were beyond overwhelming to take in, one of the hardest parts of the entire process was the thought of losing my hair. I felt strong enough to tackle cancer head-on, but losing my hair felt like it would be a constant daily reminder of my diagnosis, and a glaringly obvious sign to anyone who saw me that I had cancer. While I was never ashamed of my diagnosis or felt like I had to keep it a secret, I also had no intention of advertising it and kept it mostly private at work. If I lost my hair, I felt like I would also lose control of being the narrator of my story and of being able to choose who I told and when, as even strangers would be able to take one look at me and assume I had cancer. I did not want to be reduced to my diagnosis by virtue of losing my hair.

How did keeping your hair affect you, and those around you?
Keeping my hair through chemo was more than just preserving a part of my appearance – it became a symbol of strength, hope, and resilience. When I looked in the mirror, I still saw me, and that helped me hold onto my identity in a time when everything else felt so uncertain and uncontrollable. It allowed me to walk into treatment with a little more confidence and face each day with a bit more courage.

It also affected the people around me. My family, friends, and co-workers saw someone who looked strong and not sick, even when I didn’t always feel that way. It reassured them and reminded them – and me – that cancer didn’t define me. I was still living, still fighting, still smiling.  Keeping my hair didn’t take away the pain or struggle, but it helped me carry it differently.  It helped me walk through the journey with dignity and strength. 

I cannot say enough good things about DigniCap to help maintain a sense of normalcy for me and my family during cancer treatment, and I am so thrilled with the results. I know everyone’s experience is different and very personal, but wanted to share my story to let others know it is possible to keep your hair during a very aggressive chemo regimen!

What advice would you give to someone who is going through a similar experience, or who has recently been diagnosed and is considering scalp cooling?
Scalp cooling was not always easy, but it can be worth it. My biggest advice is to go into it with patience, preparation, and perspective. First, be gentle with yourself. The process can be physically uncomfortable and emotionally draining at times. But remember why you’re doing it – holding onto your hair might help you feel more like yourself, and that can be incredibly powerful when so much else is out of your control.

Second, prepare ahead of time – do research, bring blankets, wear warm clothes, ask your nurses and doctors what to expect, bring family or friends with you whenever possible, and give yourself grace. You will need support not just for the cooling itself, but for the emotional ups and downs that might come with it.

Third, take good care of your hair! I was apprehensive about following the recommendations of washing only a few times a week and avoiding heat and styling products, because I was worried I would look unprofessional at work or disheveled in everyday life. However, my fears were unwarranted because no one ever noticed a difference! I would wholeheartedly recommend using a gentle shampoo/conditioner like Native (which is what I used and it worked great), as well as using a satin pillowcase and satin hair scrunchies, and avoid pulling your hair into tight or high ponytails or wearing hats. Be as gentle as tolerable! Have perspective that scalp cooling doesn’t guarantee you will keep all of your hair, but even keeping some can make a big difference in how you feel day to day.

Most of all, know that you are strong for doing this. Whether you keep all of your hair, some of it, or none, it doesn’t define your fight or your worth. You are doing something brave for yourself, and that’s what truly matters. And one final piece of advice I would offer is to spread out purchasing the cards over time. Scalp cooling can be expensive and mine was not covered by insurance at all. Being able to purchase the cards individually (I would do two weeks at a time) was a huge help in managing paying for it. Also, if it ended up not working, I hadn’t spent the entire cost up front and could stop ordering cards if I decided to discontinue it.