I was a 68 year old retired college professor enjoying my free time and grandchildren in September of 2017 when I had abdominal pain that couldn’t be identified. After a week of hospital tests and then exploratory surgery which turned into a full hysterectomy and debulking, my condition was identified as stage 4b Uterine Papillary Serous Cancer. My life took a horrific turn.
The only approved treatment was carboplaten and taxol chemo which I began in Nov 2017. I was in and out of the hospital during several of the treatments and painfully lost all my hair. They thought the chemo treatment was successful and I was NED (no evidence of disease) until October of 2018 when the cancer came back again. They changed the doses but were going to use the same drugs so I asked about my hair.
The Kellogg Cancer Center (KCC) in Evanston Hospital on the North Shore of Chicago, Illinois was looking for someone to try the new Paxman cold cap. I met with nurses, searched the web, and went through all the Paxman materials I could find. I read the brochures and manuals and searched for individuals and comments on their success. The staff at KCC had a few nurses that were very interested and supportive. I did not want to go through the physical and emotional pain of hair loss again. So I said YES, l wanted to try it. I realized that keeping 50% of your hair was considered success but I hoped for a better outcome.
The first step was picking a cap size. The fit was a bit unsure but we called Paxman and got help deciding what to try. When the cap came, I followed the directions and practiced putting the cap on several times before my first chemo with the help of my caregiver who accompanies me to my chemo infusions. The nurses also helped with encouragement and backup ideas.
We allowed extra time for the first infusion using the Paxman. I was concerned about the cold and the extra minutes/hours that might be added to my infusion session. At the first session, our focus was getting the silicone cap and cover cap on tightly. Wetting my hair was another issue but my hair was still quite short from my first chemo. The headband would not stay up over my ears, even when a Paxman rep came to my second session to help. We designed a cutout from a pad to fit the top of my forehead and match my hairline. It goes just under the edge of the cap and helps with the cold. That initial cold really fades after 5 to 10 minutes.
Sessions have gotten easier with time and practice. The pre-cool time coincides with my pre-med time so doesn’t add much time at all. The only real extra time is added after the chemo for cool down. My chemo sessions are still ongoing and include 18 infusions. The longer sessions are cold and over 3 hours. I use heat pads to keep my hands and nose warm and heated blankets from the nurses also help. The shorter sessions are under 3 hours and much easier to endure.
The process of putting on the cap has gotten much easier. I can almost do it myself with just a little help on tightening the back straps on the cap cover. Taking the Paxman off is a breeze if you just give it 10 minutes to warm up and slide around. The weather has been very cold in Chicago this winter so I am delighted to have all of my hair. I have not lost any noticeable amount. In fact my hair has grown considerably during these months of chemo. I never expected that! People are amazed and I don’t feel labelled as a cancer patient.
My difficulties included the Paxman machine not reading the chip code and one machine not working during my early sessions. KCC now has multiple machines and more patients. I did enjoy talking to one of them and hope I can help others in the future. Having my hair throughout and after this chemo is more comforting than I ever expected. I realize the level of success varies and seems to depend on the drugs you are taking. I would definitely recommend trying the Paxman - the difference between my first and second chemo treatments is huge.