Hi, my name is Linda. I am 54 years old and live in the Boston area and I own a Staging and Design company. I am originally from Maine and moved to the suburbs of Boston 30 years ago. I am a wife and a mother of 3 great kids.
I was diagnosed Memorial Day weekend of 2018, with HER2+ Breast Cancer. My treatment was Taxol for 12 weeks, Radiation for 30 treatments, and Herceptin for 1 year. For me losing my hair was not an option, I didn’t want my mother who is 88 see another daughter go through cancer without hair and I knew this was the armor I would need to fight this. When I was diagnosed and my Surgeon told me I would 100% lose my hair with Taxol - I told her immediately that there must be another way - my Mom could not see that.
My Chemo started in July at a Boston hospital. It is new, happy, and has private rooms. My first go around I did not think I was going to be able to do it. It felt like a vice-like grip and it was cold. Initially my cap was sized to small, but the following week the nurses had had a sizing class and changed my cap out. The experience changed for me and I committed to the product. Paxman was great replacing my small cap for a medium and it arrived before my 2nd treatment. Returning it was easy as the label was inside the box.
I think that making sure your nurses are educated is key, my nurse was great - I also think that the roots of your hair being wet gives a better result. BUT when you put your cap on if you don’t think that it’s on right, it is OK to let the nurse who is helping you adjust the cap, because this is important.
One tip I would give is to take a hat or head covering with you to treatment, to cover your wet hair when you leave the hospital.
In terms of hair loss, I certainly had shedding but I also was very careful - I only washed my hair on Saturdays and really didn’t scrub just patted, I also NEVER put it back in a ponytail until the 11 week (very lightly with a scrunchy). I was so so careful when I brushed it I used a detangle product and started at the ends and worked up. I never felt the need to wear a wig. I waited 6 or 7 weeks after my last treatment before I had it colored and cut. It was a commitment but one I was willing to go through for the results I wanted. I think that the most important thing is that you need to separate the cooling system from the chemo treatment - both work together but both are separate and both need a commitment.
I do, and would recommend scalp cooling to other - I feel that it’s not just training the nurses that is important, but also following up with those going through the treatment, answering questions that they might have during the process. Knowledge is power and a good outcome will make more people want to use this cap, and I hope eventually will be part of the standard practical for cancer treatment.