I just wanted to put some posts in here about my experience using Penguin Cold Caps to keep my hair during chemo. I am frustrated by the lack of support by medical oncologists and the misconceptions they have about the use of cold caps to preserve hair. There were caps that were used in the 80's with little success, but this is NOT the 80's! That was 30 years ago for God's sake!!! I am sick of people being uneducated and misinformed about cold caps and discouraging patients from using them or considering them. This is NOT about hair or vanity! This is about dignity, privacy and maintaining some sense of normalcy in your life while everything else is out of control with breast cancer!!!! I wish the medical community would understand that and help their patients deal with this devastating side effect of chemotherapy.
I know that medical oncologists are there to treat the disease, which is cancer. Their goal is not to worry about hair, but I strongly believe there is a mind body connection and the better you feel about yourself and your life while you are going through cancer treatment, the better you will be and the less side effects you will experience. Using the cold caps allowed me to continue to do things I would probably NOT have done bald like going to my son's preschool for events, working out at the gym daily (that would have been comfortable with a wig on....), going out in public, meeting with work colleagues (they did not know I had cancer) and returning to teaching aerobics classes a few weeks post chemo (my class never knew I had cancer and it would have been hard to get in front of a full room of people in a wig or bald for me).
Many of us that have used Penguin Cold caps met resistance or negative comments from our doctors and especially the nurses. It was extremely frustrating to hear "don't get your hopes up...most people don't have success with cold caps" from the chemo nurse at my medical oncology office every week despite the fact that they offered cold caps and a freezer in their office. After my third chemo, I took great pride in being smug and showing her my hair. It was a moment of satisfaction for me to rub it in her face. I don't consider myself a spiteful person but it felt good to prove her wrong.
When I met with a medical oncologist at University of Michigan for genetic counseling weeks after completing chemo, she looked me in the face and told me cold caps don't work despite the fact I had all my hair. Really? I said "I have all my hair though!". She said "well they only worked for you". I can't even believe these people! What is wrong with them??? Can't they look at me as a success? Can't they see I am a survivor that looks healthy and feels good about herself vs. a survivor that is frail and still looks sick?
I am going to put some resources on my blog to help others out there that want to save their hair during chemo. I am not a doctor or affiliated with Penguin Cold Caps in any way. I am simply a patient that used them and strongly believes in their success. I just want so serve as inspiration to someone else going through cancer treatment that wants to keep their hair. I want to offer encouragement and hope when it feels like you are doomed. That is what other Penguin Cold Cap users did for me on the message boards at http://www.breastcancer.org/. There is an active thread of cold cap users there that supplied me with tons of information, support, encouragement and key learning's from their experience using Penguin Cold Caps. If you are reading this and considering cold caps, I strong suggest you read the postings on http://www.breastcancer.org/ under the topics of Help Me Get Through Treatment. There is a thread titled Cold Cap Users Past and Present. There is tons of information there that was very helpful to me.
Stay tuned for details on my experience using Penguin Cold Caps. I am going to post photos and a step by step list of things I did through the process in hopes that it is helpful to others dealing with chemotherapy.
Hi, I also was diagnosed with stage 1 breast cancer May 2010. I used the cold caps and successfully saved my hair. Many of my doctors were totally surprised. It helped me recover quicker and made me feel like I had some control over something I had no control over. I also had a friend at the same time with breast cancer and she saved her hair the same way. There is hope.
ReplyDeleteI helped ladies in California with Penguin cold caps and now I'm in Ann Arbor, Michigan, thinking of starting the business here. Are you in Michigan or do you know any doctors here who are sympathetic? I heard they've finished research at U of SF on Dynacaps and are investing in the machines, so I think oncologists will soon hear about it. I'm told that ice used years ago that did not work was not cold enough or left on long enough.
ReplyDeleteHello Dyane, I'm just catching your post. I am using the caps at Royal Oak Beaumont, have you started helping people. I have 12 more treatments to go and my helpers is going back to school soon. Let me know.
DeleteI use to be in Michigan but we moved to Chicago after my chemo. U of M was not for them at all when I was there. Karmanos does not support them either. Doc's at Beaumont have freezers and caps so start there. I don't know about any other docs of hand that support use as I did not deal with any other oncologists when I was there. If you talk to Geralyn at PCC's she may be able to offer more information. Sorry I could not offer more help!
ReplyDeleteMdg, Thank you so much for this blog. My partner Linda had stage 4 breast/liver cancer, and over the last 18 months had been on 5 different types of chemo. Some were severe, and others on the mild side. She was using cold caps, and had lost her eye brows and lashes and everything else, on two occasions no less. She lost everything except the hair on top of her head. They work. Sadly the chemo held things off, but not forever.amishelvis at msn.com
ReplyDeleteMy sister is currently going through chemo and has her 8th session tomorrow and a head full of hair. I am a big advocate of cold-cap therapy. It has allowed her to do so many normal everyday things like her kids basketball games, grocery store shopping and even lunch with girlfriends. Five days a week, she gets to feel cancer-free. The reflection in the mirror isn't a constant reminder of this disease inside her. During this process, she even started thinking of the caps as part of her armor and each week she got suited up to go to battle with this dreaded cancer.
ReplyDeleteI used them in Grand Rapids, same pessimism from oncologist but I ignored it and wheeled in coolers of caps on dry ice each chemo session. I never lost hair. In fact, it came in thicker and has been growing faster ever since. Go figure. I also had to insist on the blood test (known as 2D6) for tamoxifen-resistance, finally got it, and found out I was resistant so I'm on the right med now for the next 3 years. If I hadn't insisted I'd have been on the wrong drug, with all side effects and no benefit.
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