Joellen.

Location: Ohio, USA
Cancer type: Breast Cancer
Drug type: Adriamycin, Cytoxan, Taxol
Hair type: Long, Curly

"Thank you, Paxman for being relentless and compassionate in your pursuit of changing the face of cancer. You helped make this journey so much lighter."

At the age of 31 and a new mother of a 9 month old, I was diagnosed with estrogen and progesterone positive breast cancer. I had found a small tumor in my left breast and further MRI imaging and diagnostics concluded that I also had a small area of DCIS developing in the same breast. I was set for a mastectomy on the one side, with my surgical oncologist being fairly certain that there shouldn’t be anything positive in my lymph nodes. But it was discovered during surgery that cancerous cells had made it to a few of my sentinel lymph nodes. It was an aggressively dividing tumor (grade 3) but thanks to the new staging, it was still only considered stage 1.

We did not hesitate pursuing chemotherapy. As I was recovering from my mastectomy, I was bracing myself and making plans for when I would be losing my hair. My husband saw the sorrow and fear that I felt leading up to this and started researching. He came across Paxman and the same day reached out to our cancer clinic (Stefanie Spielman Comprehensive Breast Center in Columbus, Ohio) and to the Paxman company to get his questions answered. Before I knew it, I was at the clinic being fitted for a cap. It was easy to order and they rushed to ship my kit (even over the Labor day weekend) so I could have it in time for my first infusion.

Between the time of being fitted and the time of starting my first treatment I grappled so much as to whether this was the best decision for me. I knew that one of my chemotherapy drugs (adriamycin, or “red devil”) did not fare as well with the cold capping. I feared the fact that I had no control or certainty over the outcome. In my mind, it would be easier just being bald from the start than to watch my hair fall out and be left wondering how much would be remaining in the end.

My husband was super sweet and encouraging, talking me through it all and I decided to proceed, knowing that I could stop or shave my head at any time if it became too much. My husband found a woman who had gone through the same treatment before me and had success with cold capping and we had a phone conversation with her that gave us a plan and a lot of peace.

She advised us to switch my treatment plan-instead of doing the AC (adriamycin/cytoxan) first, doing the Taxol at the beginning of treatment. Taxol is gentler on the hair and she explained that during the treatments of Taxol, it would allow my hair follicles to become more dormant and less reactive to the harsh AC. We talked with our medical oncologist and she agreed to this since it does not affect the efficacy of treatment. She also advised me to lengthen my pre and post cooling times. (Taxol: 45 minutes of precooling, 90 minutes of postcooling. AC: 90 minutes precooling and 3 hours postcooling). On day one, we discovered I was highly allergic to a chemical present in Taxol. My oncologist switched me from dose dense Taxol to weekly Abraxane, which has the same active ingredient as Taxol, just not that chemical that caused the allergic reaction in me.

Once I was on Abraxane things went much more smoothly. I did not have much shedding outside of the normal, with the exception of between doses 4 and 5, where I lost some hair right above my ears where the cap didn’t quite reach. This was 12 weeks where I had close to perfect hair, and I should have been bald. During that time, I would only wash my hair 1-2 times a week and I used the products that were provided by Paxman. I would only brush it with a brush after washing it. All other days, I would carefully finger comb it to remove any tangles. I have long, average thickness, wavy hair (with some curl). On the days that I didn’t wash it, I would use a spray bottle of water to help reshape my waves. Once I completed my twelve weekly doses of Abraxane, I had over 95% of my hair. I finished it with the thought that even if I lose it all with AC, that was three more months of my life that I got to keep my normal hair.

Once I started AC, I switched to washing my hair only once a week. Around dose 3, my hair started to shed and it shed continuously through the end of my treatment (I had to complete 4 doses). I am about a month out after completing chemotherapy and still experience shedding, though not near as much. I would say I have between 60-70% of my hair. It mainly thinned, with more thinning near the crown of my head. The only true bald spots were the ones that I got above my ears during abraxane.

Shedding during AC was definitely a grieving process for me. It is tough to watch your hair fall out every day, but as the mentor (who I mentioned previously) told me, it’s important to pay more attention to the hair that remains on your head than what you are finding in your brush.

I wear my hair back most days with special silk headbands and scrunchies that make me feel feminine, and I think no unsuspecting person really knows that I just went through chemo! That is such an amazing feat!! I look back on my struggles with deciding whether to go this route, and even the grieving that I did as my hair was falling out day after day, and I am so very very glad that I stuck it out.

When I originally reached out to one of the nurses at the clinic to start the process of procuring a cap, I was answered with “we don’t normally advise cold capping/see success for someone with your kind of chemotherapy.”. Well, I’d like to say that we (Paxman and me!) proved her wrong 😉 I would highly recommend this therapy to everyone in need, even those with harsh chemotherapies.

I am deeply indebted to the community that surrounded me during this very difficult period of my life: My husband is my rock and continually fights for me. My oncology team made chemotherapy an experience that saw me as a whole individual. My medical oncologist, the Physician’s Assistant, and all of the nurses were just as deeply compassionate as they were skilled and knowledgeable. My husband and I had so much fear during this period of our lives, and they held our hands the entire journey. Both my parents and my husband’s parents watched our baby boy during treatments and as I recovered from them. And the countless prayers of our loving community and the faithfulness of God to carry us through those difficult days are things that will always amaze me. They have all made an indelible impact on our lives inspiring us to do the same for others.

Thank you, Paxman for being relentless and compassionate in your pursuit of changing the face of cancer. You helped make this journey so much lighter.