My name is Sharen and I want to talk about my experience using the Paxman cold cap. I was diagnosed with stage 1 Her2 positive breast cancer in February 2018 after my annual mammogram. Everything moved pretty fast after that. I had a lumpectomy on February 15th and after healing for a few weeks I needed to start chemo therapy and Herceptin. As any woman would be, I was concerned about hair loss. I knew I was sick, but I didn't want to look sick. Not only because of returning back to work, but because I am a vocalist and have sung with bands and also have an acoustic band as well. I couldn't imagine continuing to sing if I were to lose my hair. If anyone were able to do that I would give them all the credit in the world, but I just couldn’t.
I decided to do some research as none of the doctors here in New Hampshire even told me about cold caps, some hadn't heard about it until I brought it up. During my research I came across the Paxman story and the Paxman cold cap and it gave me hope. I even had a nurse say to me in an oncologist office not to bother because I was going to lose all my hair within 10 days no matter what. Even so, my husband supported me in purchasing the cold cap as it gave me hope. One road bump was that none of the hospitals in New Hampshire had the machine that I plugged the cold cap into, so I went to Boston Dana Farber, another wonderful cancer treatment center. They process was new to them. They only had it for a few months, so we were learning together. This made me nervous, but they were trained, and I decided that I would help them so that they could help others.
My first chemo treatment also was my first experience using the cold cap. Of course, I was filled with anxiety - how will I feel on chemo and Herceptin, will I need a port, have I practiced enough with the cold cap and will there be someone who can help me? Ultimately hoping and praying it would work on me. I questioned every little thing - is it too tight, did I put the cap that goes over it on correctly, will the machine and token work. You name it, I thought it! As I sat through my first treatment looking out on the streets of Boston, I actually fell asleep because of the medications they add to decrease any reactions. The cap was very tolerable and only once through treatment did I got a mild headache. When I took the cold cap off I simply put a knitted cap on as it was cold outside.
As treatment progressed I cared for my hair as I was told to. When I did wash it, I would take the strands of hair and place them on the side of the shower, so I could see what I was losing. Each time I washed my hair I did shed more than usual, but I never got any bald spots, just some thinning on top. I am so grateful to the Paxman family who developed this cold cap system. I want it to be available for any woman who would be a good candidate. I know every cancer and treatment is different and it may not work for everyone and many people may not be able to afford it. We put it on our credit card and for me it was well worth it. However, insurance does not help with the cost but will help with the purchase of a wig. We need to get the word out so woman who cannot afford it will have access to it. We need to help speed up insurance company’s acceptance of helping with either all or part of the cost. My wish is that my experience will help others who are candidates for the Paxman Cold Cap System to have control over this part of their journey through cancer treatment. God Bless.