The phone lines at Penguin Cold Caps are ringing off the hook, or in business speak, “we are currently experiencing a high volume of calls due to our appearance on Good Morning America”. While the producer/supplier of the cold caps was not named in the GMA story, the idea that an icy head cap might prevent chemotherapy-induced hair loss seems to have sent some women running for the phone.
While still in clinical trials and little known in the United States, chemotherapy cold caps have been more widely used and studied in Europe. The headgear is stored at temperatures well below freezing and worn before, during and after chemotherapy sessions. The freezing temperature constricts the blood vessels supplying blood to the hair follicles, thereby limiting the ability of the follicles to absorb the chemotherapy drugs.
“You essentially put the hair follicles in hibernation,” said Shirley Billigmeier, breast cancer survivor and co-founder of The Rapunzel Project, a non-profit with a mission to increase American women’s access to cold caps. “The minute you have an option, your outlook switches,” said Billigmeier.
Patients need to rent the cold caps from the manufacturer, usually through a hospital intermediary. During chemotherapy, the caps are changed approximately every 30 minutes in order to maintain the optimal temperature of 22 degrees below zero Fahrenheit. It takes either a biomedical freezer or about 159 pounds of dry ice to maintain the caps at that temperature. Only a couple of hospitals in the U.S. currently have biomedical freezers.
Billigmeier had to get through her first chemotherapy and cold cap treatment with coolers of dry ice and a team of supporters. With seven family members and friends on hand to carry coolers and change the caps, Billigmeier got through her first treatment and returned for a second with a full head of hair. Friends and supporters of Billigmeier ultimately raised the funding to purchase a biomedical freezer for Abbot Northwestern, the Minnesota hospital where she was being treated. The cold caps go on about an hour before treatment and stay on for four hours following treatment, so cold cap users are looking at long days of treatment with no guarantee that the caps will work.
After six rounds of chemotherapy and cold caps, Billigmeier still had a full head of hair. The freezer she helped to raise funds for at Abbot Northwestern had already been used by about a half-dozen women as of last spring, according to an April 2010 article that appeared in the Minnesota Sun newspaper.
While there has been little to no research in the United States exploring the effectiveness or potential side effects of cold cap treatments, there was reportedly a 1990 study conducted in France that found them to be 90 percent effective in preventing hair loss. While some doctors are open to the idea if it helps their patients accept their prescribed chemotherapy regimen, cold cap treatments are not deemed safe for all cancer patients. Breast cancer is expected to pose little risk of blood borne cancer cells that could travel to the scalp, so preventing chemo drugs from reaching blood vessels in the scalp is perceived to be safe.
Hair loss is often one of, if not THE most devastating side effects for women undergoing cancer treatment. It is not unheard of for a woman to refuse a prescribed chemotherapy regimen due to her fear of hair loss. One of the major reasons that hair loss is such a devastating side effect is that it denies a woman the ability to keep her cancer diagnosis private is she so chooses. With this in mind, it is not hard to understand why some women may go to great trouble and expense to keep their hair.
Cancer diagnoses, hair loss, health and emotional well-being are all very personal themes. Each woman’s needs and responses to her treatment are her own. Even among those women who would like to be able to go to any length to save their hair from chemotherapy, the cost may be prohibitive. The fixed monthly rental cost of a Penguin Cold Cap is $429, along with a refundable $600 initial deposit. If your hospital does not have a biomedical freezer, then you will need a lot of coolers, a whole lot of dry ice, and a team to help you get the caps on and off quickly and smoothly enough that the chemo drugs do not make it to your scalp in the interim. According to The Rapunzel Project’s website, the caps are quite cold for the first 5 minutes after the new cap is applied, and the discomfort dissipates after that.
If you’ve never had cancer, never faced that kind of fear for your life and well-being, cold caps may sound like an automatic must-have. Having faced that fear of death by cancer, I personally think my fear of anything that prevents chemotherapy from circulating in my blood vessels would trump my fear of hair loss. It’s all about killing the cancer in my mind, as devastating as hair loss is. What about you? Would you put your follicles on ice to save your hair?
Susan Beausang, 4Women.com
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment11 Comments
Cold caps - Penguins do work better than elasto or Advanced (super bad). Scalp mets are rare in any case, with or without caps. Yes. caps work for the tough chemos. Frank calculates the times based on your treatment.
May 18, 2011 - 4:36pmThis Comment
I wonder if cold caps would work in the case of chemo drugs known to cause permanent hair damage - I don't know. I also don't know what impact, if any, cold caps would have on chemo brain. I suspect they would do nothing. Cold caps do not cut off blood supply to the brain or nervous system. If they did, they'd be deadly. They only limit the blood (and hence chemo) supply to the scalp.
May 18, 2011 - 11:11amThanks for writing.
Susan
This Comment
When you read that docetaxel may cause permanent hair loss after chemo, then I would definitely consider it for that particular drug. If the hair will grow back after treatment, I'm not concerned about it falling out during chemo. I would like to know if any research has been done to see if the cold caps could prevent chemobrain.
May 18, 2011 - 10:53amThis Comment
Thanks for sharing Joyce!! I suspect your detailed instructions and tips will help someone/s. Have to say, I can't imagine covering all those bases while feeling good, let alone when feeling sick and consumed with fear, but I'm guessing a good support team can make all the difference.
April 11, 2011 - 10:13amBest to you,
Susan
This Comment
Yes, it takes a village to get through it, not something one would want to take on without support. Fortunately, my daughter has had few SEs from chemo (TCH). What boosts her is the comments from the nurses and doctors - Breast surgeon said he didn't feel like he was talking to a cancer patient and when she goes to work- professional office, she feel confident and healthy. One caps user said when she looks in the mirror she doesn't see a cancer patient. That said, it is a rigorous procedure and I wish it were free to all who want it.
April 12, 2011 - 2:50amThis Comment
Information on using cold caps: someone requested but with my poor computer skills, I hit the wrong button and lost the e-mail:
We started with Penguin then switched to elasto gel (order on line at HPMS or other site, @$85 each, need at least 6) but use the penguin protocol for hair care and times. I did testing of caps out of a -23C freezer and found elasto heat up more quickly so we cut the times: use the elastos 15 min for the first 3 caps (45 minutes total) before chemo and start chemo after you get the 4th one on. Then change every 20 min through chemo. For the 4 hours after, change every 20 min.
Do caps for several hours the day after chemo.
Keep each cap in a 2.5 gallon zip lock freezer bag when ever it is in the cooler to keep ice crystals off caps.
Take the cap out 15-20 min before you need it, check temp. If too cold, kneed it to get it ready. When at right temp, replace in cooler until needed. After a few caps, you’ll know how soon you need to take each out to have it ready on time.
Adjust time as you need. The sides with either type of cap tend to get warmer than the top. You might put a cut-to-fit piece of cloth or something in the top of the cap to keep it from getting too cold while the sides are exposed to the full ice treatment while in the cooler.
You will need at least 70lbs of dry ice. I get 40lbs in pellets and the rest in 2” thick 10x10 blocks. Put dry ice in zip lock freezer bags: pellets in one gallon bags and blocks in 2 gallon bags – zip ONLY part way. Dry ice will explode if it is sealed up.
Do not store dry ice in your living area – it sucks the oxygen out of the air. When traveling with it in a van or SUV – keep windows open enough to circulate air.
Place one gallon pellet bags inside of caps. Use ice blocks to line bottom and side of cooler. On the bottom put a towel over the ice blocks before placing the caps. Coleman Extreme 60 qt works for us. You might find that two smaller coolers work better because you can leave one tightly closed while using caps from the other.
Keep the cooler closed - the vapors suck the oxygen out of the air.
With Elasto Gels, have the chin strap hanging on your RIGHT side – this put the thicker part in the back where you need it. Do not put any cap over the cold cap. Make 2” wide elastic straps (21 to 23” long) with Velcro to go around the circumference of the cap and one to go under the chin and over to the crown of the head. Straps must fit tightly so don’t make them too long.
I made elastic bands like the PCC ones for around the circumference and one under the chin and over the head. Also make extras for whatever spot seems to need it. Two inch wide elastic with velcro sewn to the ends: one 21 to 23” long for the circumference and one 21” for under the chin and over the top of the head to pull caps tighter. Put a piece of moleskin when the chin hits the elastic on the over-the- head strap (get a roll at Target - Dr. Sholls section) for under the chin comfort.
To see what the straps I copied look like go to Penguin site and watch the video of a nurse putting the cap on a patient.
As for wetting the hair – we did not do this. Dignicap uses this but their system stays at 5 degrees F, much warmer than Penguins or EGs. Elasto gel instructions are all wrong for cancer patients. Times are way to long.
If it doesn’t all come together for you – just use an ace bandage, but cut it so you don’t have to spend so much time wrapping your head with each cap.
Use the moleskin (Target in the Dr Sholls section, it sticks to the skin) to protect forehead. Use something to protect ears - some use cut-to-fit panty liners or Ear Pops - we got Ear Pops from www.improvementscatalog.com for $7.99 a pair (1-800 642-2112).
Get a thermometer from Sears or somewhere like Northern Tool Supply that reads to -30C or -22F. Make a temp chart for reference during chemo - online has a C to F conversion table I find helpful to have with temps from +38F to -30F and the C conversion next to them. Just google it. If you can’t find the laser thermometer, there is a refrigerator one that Walmart had that goes down to 20C that you can hand in the cooler – better than nothing.
Get a twin size electric blanket to keep warm.
MOST OF ALL - I recommend reading the Cold Cap posts about using the caps. The hair care is important. Breastcancer.org, Forum: help me get through treatment, thread: Cold Caps Now and Then
Get an Extreme Cold cooler and keep lid tightly closed. Google “dry ice and safety” to see how to use it – VERY important info.
No washing two days before or two days after chemo.
Use only COLD water.
No blow drying.
Use wide tooth comb and do not pull on hair.
Use organic or very mild shampoo diluted 1:1.
Use leave on conditioner – Sea Chi 760 832-9351.
Use satin pillow care and satin sleep cap to prevent stress on hair. Keep long hair in open weave hair cover – hair net or similar, to keep your clothes from pulling out the fragile hairs. Cotton and other materials have “teeth” – rough texture that grabs hair.
Good luck. Joyce
April 9, 2011 - 2:42amThis Comment
Thanks so much motherofpatient. In my mom's case, she only has hair thinning. You might think at age 89, she wouldn't care, but she does. Fortunately, it's not that major. Her bigger issue is the chemo brain. You said it though, what truly matters is her/our health. All the hair in the world will not matter if we lack health.
April 6, 2011 - 5:46amBest to you,
Susan
This Comment
Yes, the cold caps require coolers and space in America, but centers in England, Australia, and Canada have freezers and caps on site. Here it may be the insurance liability issue although some research centers, while not endorsing cold caps, do have freezers to use. I have seen chemo rooms with barely enough room for a chair next to the recliner and some limit you to only one person. Some centers are willing to work with you and you can do it with the elasto gels if they give you a corner spot and you be very careful not to interfere with chemo. It isn't difficult, just be quiet and careful.
April 5, 2011 - 2:23pmIt is a long process that requires follow up 6 months after chemo and for many it is difficult to stick to the strict hair care protocol, especially washing in cold water and only once a week. My best to you and your Mom. The most important thing is to get well.
This Comment
Hello Motherofpatient. Thanks for sharing. I'm sure there will be women grateful for the tips. My mom is undergoing chemo right now and I accompany her to all her treatments. I cannot imagine how they would accommodate someone receiving cold cap treatments there. It is a very nice chemo suite, but I do not see space for dry ice coolers and the accompanying support people for changing the caps. I guess cold cap treatments might be easier for those getting treatment in more private suites?
April 5, 2011 - 6:51amThis Comment
Cold caps do work; however, there is a couple that promotes Advance Cold Caps and they are terrible- kept in poor condition, don't hold the cold and are really not worth the $200 or more per use that they charge.
April 3, 2011 - 2:43pmThe same caps can be buy on line -elasto gels for about $85 each, then follow the Penguin Cold Cap hair care except leave the EG's on only 20 min at a time.
This Comment