Penguin Cold Caps Success Story

Since I have used Penguin Cold Caps I have been in contact with many other wonderful women that have used them too.  In my communications a fellow cold cap user has agreed to let me share her story and photos on my blog so that people can see that other women have had success with them too.  Here is Laura's story in her own words.

When I heard the word chemo, I don’t think I heard another word the oncologist said. I did not want chemo. All I knew about chemo was that it makes you sick and even worse, you lose your hair.  The thought of losing my hair was devastating. I would not look like me. I would look like a sick person.  I felt I would lose my privacy. My health should be something that is my choice to tell.  Once you lose your hair, that choice is gone. I did not want the sad looks and questions. I felt despair.

My daughter sent me a link to a website that she just happened to come across. It turned out to be the Penguin Cold Cap website. Neither of us had heard of cold cap therapy, but we couldn’t wait to find out about it. I immediately got on their website and inquired about cold caps. I was so excited to hear back from Frank (the inventor) that very day. Could I really keep my hair?  I couldn’t believe it!

I have completed my chemo treatments and have kept all of my hair. Seeing myself throughout chemo looking like my old self helped me get through it with a positive attitude; look good, feel good!  The people I work with told me they couldn’t believe I was going through chemo, I looked so healthy.

I read that 10% of women will not undergo chemo because they don’t want to lose their hair. Most women say losing their hair was the most difficult side effect they faced, far more difficult than they had imagined. I am so happy I found out about the cold caps. When I look at myself and see my hair, I still can’t believe it!

Laura

Here is Laura before chemo

Laura wearing a Penguin Cold Cap on chemo day:

Here is Laura three weeks after her final chemo:

Studies on Penguin Cold Caps

When I was deciding on whether I should use Penguin Cold Caps or not to keep my hair through chemotherapy, I reviewed as much information that I could find.   I needed to understand things clinically and make sure I was making a good choice.  I first started with the Penguin Cold Cap website for studies and general information.  http://www.msc-worldwide.com/scalpmets.html

I also read about the Rapunzel Project which is a great organization that donates freezers to infusion centers so that patients have an easier time using cold caps.  http://rapunzelproject.org/News.aspx

I also read various studies.  Here are some links to the clinical studies I reviewed online regarding use of scalp cooling and cold caps:


http://www.ncbi.nlm.nih.gov/pubmed/21431870

http://www.ncbi.nlm.nih.gov/pubmed/19241158

http://annonc.oxfordjournals.org/content/16/3/352.full

http://www.ncbi.nlm.nih.gov/pubmed/10762750

http://annonc.oxfordjournals.org/content/17/2/350.1.full

http://articles.sfgate.com/2011-01-26/news/27049661_1_cancer-patients-hair-loss-hair-roots

http://cancerres.aacrjournals.org/cgi/content/abstract/69/24_MeetingAbstracts/5040


Again there are many misconceptions about scalp cooling and cold caps.  Most physicians are not educated well about them and don't take the time to even explore the technology.  While I realize their main goal is to treat cancer and not hair issues, hair loss is a very real side effect to chemotherapy.  A patients overall well being, emotional attitude and physical well being should all be considered.  I do believe that if you feel better about yourself while you are going through the worst experience of your life it directly effects your attitude and how you feel physically.  I hope as time goes on more medical oncologists will realize this and have more compassion for cancer patients that lose their hair.  Based on how clinicians act now, we have a long road ahead to change the way they think.

My Hair Eight Months Post Chemotherapy

I know I have not posted a hair photo in a while so here you go.  As I mentioned in my blog a while ago, I finally broke down and got my long hair cut back in November.  It looked good except for because it was so long the ends looked very thin and very dry from the chemo.  I went to an all organic hair salon and consulted with a hair stylist there and asked her for help in doing something with my hair.  She was so kind and patient and gave me her best advice and best haircut. I trusted her and she did me right!  Here is what my hair looked like when I got it cut back in November:

You can see the bangs there which is the regrowth from the hair I lost at my hairline.  My hair stylist cut a few more bangs to blend them in.

Here is what my hair looks like now:

I have been using Naturtint Hair Color (available at Whole Foods or online at Amazon) which has less chemicals in it.  The color I am using is Light Chestnut Brown.  I have used it now a few times and it covers well and has not been harsh on my hair.  After completing chemo, I did not use permanent hair colors.  I started out using a wash out type hair color.  I used Clairol's Beautiful Collection.  I purchased it at Sally's Beauty Supply.  It was OK but did not cover well but it had no ammonia or peroxide and my hair was so fragile I made it work.  I was glad to have some color at that point as my roots were a few inches long from how much my hair grew during chemo.  The color does wash out after 6-8 washes and it will stain towels (so use old towels).  It worked for me at that time but I am much happier now that I am using the Naturtint which is permanent.

Tips For Using Penguin Cold Caps

As I mentioned I wanted to share more about my experience using Penguin Cold Caps to keep my hair through chemotherapy.  I in no way work for the company or anything, I am just a patient that used them and had success.  I want to help other women that may be considering using the cold caps to keep their hair through chemo.  Here are a few tips.

Supplies For Chemo Days:

• Extra thick moleskin (I used this on my forehead and at my temples while wearing the caps to keep the cold off my skin).  I pre-cut the right sizes I would need the night before and just put them in a baggy.  That way they were ready to go when I got to the infusion center.
• Panty liners - (yes, I said panty liners!)  I cut these to the shape of my ears and stuck them on my ears while wearing the caps so my ears would not freeze.
• Hair pick - I made sure to lightly comb through my hair and change my hair part every time a changed my cold caps.  This prevented me from getting any frostbite along my part line.
• Hair rubber band - I had long hair and I loosely put the rubber band in to keep the hair out of the way so it would not get stuck in the velcro on the caps.
• Ativan (I asked my medical oncologist for a prescription) - this helped keep me calm and helped me tolerate the cold while wearing the caps
• Extra Strength Tylenol - I was afraid I would get a headache from the cold so I took some before my first cap (I did not get any headaches)
• Electric Blanket - I purchased a twin size one from Amazon.  I wrapped it around me all day and it kept me warm!
• Socks, knit gloves and sandwich baggies - I decided to ice my fingers and toes during taxotere to avoid neuropathy.  I filled the baggies with ice (four) and put two on the floor.  I put my foot on them and then folded half of the baggy up over my toes to keep my nails and toes cold.  For hands, I put on my knit cloves and grabbed a baggy full of ice in each hand.  I pushed my fingers down into the ice and then had my husband pull a sock over my hands/forearms.  This way I did not have to hold the bags the whole time.  They would stay in place from the socks. 
• Scissors (in case I needed to cut more supplies)

Supplies To Have At Home:

• Hair pick or wide tooth comb - no use of hairbrushes while going through this.
• Organic Shampoo/Conditioner - I wanted to avoid parabens, sulfates and as many chemicals as possible.  I used Burt's Bees and Organix brand products through chemo. 
• Colormark - I used this to cover my roots.  It is applied like a mascara and washes out when you wash your hair.  I bought it at Ulta.  It is not the best but it does help cover roots.  At the beginning it worked fine but as the roots got super long it was harder to cover them!
• Soft Covered Elastic Hair Rubber bands - the Penguin Cold Cap website does not recommend using hair rubber bands but I did.  I exercised daily and had long hair.  I was very gentle with my hair when I used them and made sure not to put them in tight or pull on my hair when removing them.
• Thin, soft elastic headbands - I used these to just keep the hair out of my eyes.  I got them at Walmart in a six pack cheap.
• Deodorant - PCCs recommends you use organic, chemical free and aluminum free deodorant while using cold caps.  I used Bumble and Bee (I ordered this online) and also Nature's Gate deodorant (I got this at Meijer's).
• Organic or Chemical Free/Aluminum Free Mascara - I figured if PCC's tells you to avoid chemicals in the hair under your arms, why not for your lashes?  I used Physician's Formula Organicwear Mascara for a while.  It was OK bur ran horribly if you got it wet.  It was easy to get off though without using much soap or any tugging on the lashes.  Later I switched to Tarte mascara (from Ulta) which is not organic but avoids aluminum and most other bad chemicals.  I managed to keep my lashes through chemo but they fell out about 7 weeks after finishing chemo.
• Latisse (I had my medical oncologist give me a prescription).  My lashes stayed through chemo but fell out later.  I started using it regularly after finishing chemo.  My lashes grew back so fast and were super thick and long.  It is expensive and not covered by insurance but I believe there are generic and over the counter options available too.  I also used it on my eyebrows which thinned but never fell out (yea!).
• Organic and Chemical Free Hair Styling Products - PCC's probably does not recommend use of these items but for special occasions when I needed to look better I did try some Giovanni and Organix hair styling products to get the frizz under control.  I did also use Aveda's Be Curly to wear my hair wavy/curly on humid day.
• Cute, Lightweight Hat - I know PCC's does not recommend use of hats during chemo but I did use hats on the really bad hair days.  I experienced no ill effects from it and it made me feel better about how I looked. 
• Thick Cotton Headbands - again PCC's probably does not recommend the use of them, but I did wear them to help cover roots as my hair started growing out towards the end of chemo (my roots were at least 1 1/2 inches long as my hair continued to grow at a normal pace through chemo!).
• Satin Pillow Case - I did use this since I had long hair to help prevent pulling on my hair while I was sleeping. 
• Hair Extensions - I had some clip in real human hair extensions I got at a local beauty supply store.  I know PCC's probably does not recommend the use of these, but I did use them towards the end of chemo and after chemo when my long hair looked thinner at the ends. 
• Handheld Shower Sprayer - I got one that attached to the tub faucet and that had a sprayer on it.  I found it helpful to wash my hair since it was so long.  It allowed me to get the cold water right at the roots of my hair easier than using a cup and pouring water over my head.  I washed my hair leaned over the tub once a week with cold water as recommended.

Hear is what I looked like with moleskin and panty liners on before putting my first cold cap on:  (this is definately not me in one of my finer moments in life...)

Once I got my moleskin and panty liners on, I took that ponytail out and put a very loose, low ponytail in to keep my hair out of the velcro on the caps.

Here I am with my first Penguin Cold Cap on:

Penguin Cold Caps

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.