A week before starting my chemotherapy I had a follow-up visit with my surgeon. As part of our conversation he gently reminded me that two weeks after starting chemo I would lose my hair. “Doc, I didn’t tell you? I’m not going to lose my hair. I’m doing cold cap therapy.” He had never heard of it. Which is something that I feel compelled to change. So I humbly invite you to go with me on this journey in all it’s raw, beautiful details wherever they may lead. I will share it all in hopes that it will provide value to you or someone you love.
My oncologist has prescribed four rounds of Cytoxan and Taxotere given every three weeks. As of this post I am one week past my second infusion. I should have already had the empowering “go ahead and shave your head so you’re in control” moment. Which I would have totally rocked had I needed too. I’m happy to say that Mr. Clippers is staying in the drawer for today. This is a shot I grabbed this afternoon.
I still have hair! I’m not dancing a jazzy jig just yet. I still have two rounds to go…. but I’m feeling pretty good. My infusion nurse says she is amazed. I think my oncologist expected me to be bald at our last meeting. He asked, “Is that your real hair?” The real deal baby…YES IT IS!
Let me explain what is going on here. Cold cap therapy is the technique of temporarily freezing the hair follicles so that blood flow to them is restricted. If there is no blood flowing to the follicles then they are spared the damage of the chemotherapy drug. Oh No! That means I might get cancer in my scalp if the chemo doesn’t go there! No need to worry sweet Chickadee. Cold cap therapy has been used for the past two decades in Europe and studies have shown that scalp metastasis is rare and does not happen more frequently in those who use scalp cooling than those who do not. It was introduced in the US back in the 1980’s and it flopped. Why? Neither the technology nor the technique were adequate at the time. So it flopped and we forgot about it. (OK, here is where I send a honkin’ BIG karmic hug across the pond to the Dutch, the Finnish and the French scientists who DIDN’T forget about it….You guys ROCK!) Scalp cooling is now regaining popularity here in the US and we should have new studies released in the near future.
But you don’t have to wait on US studies since Europeans have been using this technology successfully for years. There are two companies in the US that provide this service. Chemo Cold Caps and Penguin Cold Caps. I went with the folks at Chemo Cold Caps. One of the partners lives in my state, could get me the equipment before my first chemo round and the package included everything I was going to need. Steve came up on the day of my first treatment and instructed my husband on how to become the Cold Cap Master.
This is what it looks like wearing the cap. There are a lot of details about how to manage the caps for the most effective outcome but I won’t go into all the boring details. I’ll save that for another post if there is interest. The bottom line is this. You have multiple caps that are rotated out. Each one needs to be -20F when they reach your head. You start about an hour before your first infusion and you swap these puppies out every 20 minutes until four hours after your last infusion. Start to finish? About 8 hours every time I have a chemotherapy infusion. Annoying at times but a small inconvenience to the alternative.
Now don’t think for a minute that my hair hasn’t changed in this process….I’m shedding like a wooly dog in high summer. They told me I would. They told me not to freak. They said everyone does it. I still swallow hard when I see little wads of hair in the sink in the morning. The goal here is to have the MAJORITY of my hair at the end of this process. I was told I had a 90% chance of keeping 70% of my hair. So far I am definitely on track for that to happen. The main area where I notice the thinning is at the top of my head. Apparently this is very typical. I am VERY careful not to mess with my hair much at all….especially the first ten days after the treatment. Anytime I mess with my scalp it gives me a gift of hundreds of broken off hairs. Why go there? I wash it the night before treatment and then I don’t wash it for five days. I use dry shampoo to extend time between washings. I don’t blow dry it. I don’t brush it. I use a really wide tooth comb if needed. So far I’m very happy with the results.
I will continue to report on my progress through the next two treatments, give tips I have learned along the way and answer any questions that you may have about the process. In the meantime, I wish you peace and healing along your journey. I encourage you to find ways to calm your worried mind through all this craziness because it will allow your body to help you heal and manage your chemo treatments better. Cancer can not touch your sweet soul and I’m sending your soul and big, warm, long hug right now. Peace, Cynthia