February 9, 2018 at 7:41 AM #4762
When I was first diagnosed with GCS, I was given Taxol and Carboplatin. Unfortunately, I am platinum resistant and the chemo did not work for me. But for those of you who took Taxol, you know that you lose your hair within 2-3 weeks. I lost my hair in 2 weeks and ended up having what remained of my hair shaved off. I dealt with it by using wigs and hats. It took about a year for it to grow back to a “fashionable” length.
A couple of months ago, I began to experience some breakthrough on the chemo combination I was on for almost 2 years; avastin and cyclophosphamide. My chemo was changed to weekly Taxol and Avastin. Oh no! Not taxol again. Am I going to lose my hair again?
I was very fortunate to learn about chemo cold caps. My sister had breast cancer and along with her taxol, was given the opportunity to save her hair by using cold caps. For those new to cold caps, these frozen caps are applied to your head every 30 minutes before and after chemo administration. Your hair follicles are frozen and you are able to preserve your hair. It worked very well for my sister. I decided to give it a try.
Fortunately for my sister, she was receiving care at UCSF, where they had an established cold cap program. UCSF had freezers to store the caps at -35 degrees and supported the process. My sister Jayne still had to have a support team to change the caps every 30 minutes but that is where having a lot of sisters comes in handy. We all took turns with the caps. At the end of 6 months, Jayne’s hair was thinner but that barely noticeable.
I started by chemo caps at Huntsman Cancer Institute in Salt Lake City. Unfortunately, Huntsman did not have the support system in place to support cold caps. But we were able to rent caps from Polar Caps. The rental included a small freezer that we could use to freeze the caps with dry ice and transport them back and forth every week. I have been using them for a little over 2 months and I still have my hair.
Cold caps are only useful for certain chemo regimens and I do not know which ones. But they are effective for Taxol and Carboplatin which is the primary therapy for women with carcinosarcoma.
Cold caps are not for everyone, but I wanted to share my experience in the event that some people might like to give them a try.
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