Cold Caps FAQ's - newbies - how to save your hair from chemo

Want to know more about how to save your hair from chemo with cold caps? Then this thread is for you.

Newbies have requested that cold caps tips be summarized and placed in a new thread. Thus, this thread was born.

Warning...it is LONG. This summary is based upon the collective feedback from the MANY cold cappers who have posted throughout the years on the main cold caps thread. I do not consider myself an "expert" on cold caps. I am just another patient happy with the success I had using them. These tips are from many women. Please verify all information for yourself. The main cold caps thread is located here: https://community.breastcancer.org/forum/6/topic/735873?page=1. Please post specific questions on that thread, not on this one.

Special thanks to the following members who helped me collect this information, assisted with the editing process of this FAQ, and/or have provided links I could use: makingway, pch, mdg, and hope49. You gals rock! (And sorry to anyone I may forgotten to thank!)

P.S. The formatting for the numbered questions won't cut and paste correctly...oh well, this is the best I can do right now!

FAQ about cold capping:

1. Do they really work? How? Can you really do chemo yet keep your hair?
   • YES, they do work - for the majority of patients. Please see this thread for success stories with pictures: https://community.breastcancer.org/forum/6/topic/835766?page=1#idx_2
   • The degree of success varies and is mostly dependent on chemo regime as well as how well you follow the protocol. Chemo regimes that seem to do well are TC X4 (taxotere, cytoxan), Taxol X 12, and TCH X 6 (taxotere, carboplatin, herceptin). Regimens that seem to have more of a unreliable success rate on the cold cap thread here are those that include Adriamycin combined with another drug, like ACT and TAC. (This is based upon following patient stories over the past few years here on bco, not on any formal research.)
   • Caps work by cooling the scalp, constricting the blood vessels, and thereby limiting the amount of chemo that gets to the hair follicle. For an overview of the cold capping process, please see the write up on bco: http://www.breastcancer.org/tips/hair_skin_nails/cold-caps
   • Success does not mean you won't shed hair. You WILL shed hair both during chemo and post, sometimes for several months. However, for the vast majority of patients, the amount of shedding is never enough for others to notice. Most of the hair loss is from behind the ears and at the nape of the neck, where the loss is easily hidden by the hair above it covering it. A small minority do shed enough to develop bald spots - this is more common for those on Adriamycin. Many have used Toppik to cover the spots until the new growth after chemo comes in enough to fill in the areas. A few cappers who have had excessive shedding have decided to stop the capping process part way through.
   • There have been many stories in both the national and local news showing the success of cold caps. Please see this website which provides links to stories and lots of other wonderful information (it is a great nonprofit!): http://www.rapunzelproject.org/
   • Here is also a link to successful user's blog: http://breastcancerwontdefineme.blogspot.com/search/label/Hair

1. My doctor won't let me do the caps. He/she says they don't work. And/or he says they can lead to metastatic cancer of my scalp! I don't think I want to take that chance. I want to do everything possible to fight this and make sure it doesn't come back!
   • Most doctors are behind the times regarding the new cold caps protocols and success rates. Therefore they assume they don't work and are a waste of time and money. These doctors are uneducated regarding cold caps. You can either educate them and convince them to let you try the caps - thereby hopefully paving the path for other patients to save their hair - or you can find a new doctor who is supportive. Your chemo brings your doctor's practice/hospital thousands if not hundreds of thousands of dollars. Take your business elsewhere if saving your hair and having your doctor respect your right to try cold caps is important to you.
   • There is research showing that there is no increased risk of scalp metastasis in patients who use cold caps. Read the literature to educate yourself, and your doctor. This is just one article, but there are several others.
     • Scalp cooling to prevent alopecia after chemotherapy can be considered safe in patients with breast cancer. Breast, 2013 Oct;22(5):1001-4. http://www.ncbi.nlm.nih.gov/pubmed/23973267

"They showed the incidence of scalp skin metastases to be very low and not differ between scalp-cooled (0.04-1%) and non scalp-cooled (0.03-3%) patients with breast cancer and in need of chemotherapy. We found it rather unlikely that the incidence of scalp skin metastases might increase at all after scalp cooling, whereas a very small proportion of patients receiving chemotherapy are at risk to develop metastases at this site. Scalp cooling can thus safely be offered to patients treated with alopecia-inducing chemotherapy."

1. Is it really worth the stress and expense?
   • This really depends on the person. For some people, yes, it IS worth it. Here are some of the reasons it is worth it to cold cappers:
     • it allows them to retain their privacy (no one can tell you are in chemo)
     • they look better and hence feel better
     • the business of doing the caps on chemo day helps distract them obsessing about the chemo itself
     • it gives them a sense of control over something at a time when they feel so much is out of their control
     • it is one less loss they have to deal with and helped them keep their spirits up: "When I looked in the mirror, I didn't see a sick person. And neither did anyone else. It helped me maintain some sense of normalcy."
     • it doesn't just help the patient. It helps their family and friends, too. There is a therapeutic "ripple effect" as one capper described it. "Everyone is more relaxed when they are not constantly reminded of our cancer treatment. So their stress levels are lower and it creates a positive feedback loop that, as you say, empowers both the patient and the family."
     • there is a small percentage of women who unfortunately suffer permanent hair loss from chemo. For some of us, the fear that our hair might never grow back is a big reason for choosing to go through the expense and stress of cold capping.

1. How much does it cost?

That depends on the company you use. These prices are estimates - ballpark numbers based upon cold capper reports as of 2015. Also, these are not recommendations, do your own research when choosing a company:

• Penguin Cold Caps (https://penguincoldcaps.com/): To rent Penguin caps(and gel bands) for 3 months would cost $1,899.00 plus a $500.00 deposit. The Penguin company requires that you to set up a FedEx or UPS shipping account. The cost of rental starts the day the caps are shipped and returned to the depot, so if your chemo is longer than 3 months your cost goes up. PCC's have the most users on the cold caps threads, but success is now being seeing with Elastogels, too. However, please note the track record with Elastogels on the CC thread is not as long as it is for Penguin Cold Caps. Therefore, if you choose to use Elastogels, you may or may not have as much success in saving your hair. This seems because the fit of the Elastogels is not as good, and they don't stay as cold - so there is a greater chance of the scalp not getting cold enough. There are workarounds (see some tips below and also please post for advise on the CC thread), but you have to be very prepared and careful about the process you use. Some have had good success with Elastogels; others have not.
• Elastogels (http://www.elastogel.com/product-catalog/cancer-care/hypothermia-products): The cost of a set of 8 (recommended) Elastogel caps is @ $720.00, and you own them so you can resell or give to a future capper after chemo. Elastogels can be purchased on various websites (Amazon, etc.). WARNING! We have noticed the success rate is lower for those who use Elastogels. These caps tend to have fit and gel consistency issues. However, some have had very good success. Those who have had success follow the Penguin protocol. The Elastogels should come with a cardboard insert to help the caps hold the shape. Use an ace bandage type of strap to keep it close to your scalp, preferably one that has a velcro type of closure mechanism. .Also, the Elastogel caps require additional small bags of dry ice on the inside of cap to help get them cold enough and help them hold their shape. If you do not get them cold enough throughout the cap you have a higher risk of losing hair. They also warm faster so should be changed a bit sooner, more like 20 minutes vs the 30 min with Penguin caps.
• Chemo Cold Caps: use only 6 Elastogel caps (believe you rent them, don't own them) and provide you with a cooler but NOT DRY ICE @ $1,830.00 for 4 treatments.
• Arctic Cold Caps: Also use Elastogel caps (believe you rent them, don't own them). Started by a cold-capper's father-in-law. https://arcticcoldcaps.com/ Prices can be found on the services tab. They will provide nurses to help as well.
• Dignicap: http://www.dignicap.com Several facilities in the USA are running clinical trials with this system. See http://www.rapunzelproject.org/LinkClick.aspx?fileticket=KR8CTcnM2M4=&tabid=39 for more info.
• Paxman: http://www.paxman-coolers.co.uk Also running a clinical trial in Dallas,, TX. Here is a personal report of someone who went through the trial there: https://community.breastcancer.org/forum/6/topics/836073?page=1#post_4534817

1. What if I can't afford it?
   • Contact Cold Caps Assistance. It is a wonderful nonprofit in Austin, TX that provides assistance to those who wish to cap but need financial assistance: http://ccaps.org Several cappers have received grants subsiziding the cost completely. "They rent out FREE caps to those in the Austin area, and Patsy will teach you and your helper how to put them on, also for free. She also cuts you a monthly check to subsidize the cost significantly if you are not in the Austin area or her caps are not available. I believe the financial assistance is available for everyone in the US."
   • Penguin has a program where they will rent the more used caps they have at a discount.
   • You can try getting reimbursement for your caps. Most insurance companies will not cover the cost, but one member did have success. You need to have a prescription for the caps and she suggests you submit it using the following codes: Cranial prosthesis A9282, dx alopecia for chemotherapy 704.00
     • edited to add: another member, aj93, was successful in getting her caps covered by insurance. She has posted the details of how he she did it in this thread (scroll down). Thanks aj!
2. Do I need someone to help me with the caps? What if I have no one to help me?
   • Yes, you need help getting the caps on/off (you have to change the caps at least every 30 minutes, and it needs to be done quickly). This can be quite difficult to do on your own, especially when hooked up to chemo via IV/port. Although one member did do it on her own, few can manage it alone.
   • Don't be afraid to ask your friends and extended family if need be. You would be surprised how many people will offer to take a day off work to help you, if you ask for help. People want to help and this gives them something concrete to do. You can ask if your hospital has a breast cancer support group or call your local American Cancer Society or Susan G. Komen Foundation. Ask if they have any volunteers that would be willing to be trained and help you. Or, if you belong to a church, put a request out. Also, post on the cold caps thread (https://community.breastcancer.org/forum/6/topic/735873?page=1) - you never know - a past capper may be in your area and may be willing and able to help you.
   • There are companies that provide helpers you can hire.
     • http://www.coldcaptherapy.com/ (serving Minnesota, but one capper hired and flew a helper to their city to train them for their first treatment)
     • http://penguincoldcap.wix.com/help (company set up by one of our cold cap bco members; she serves the following counties in California: Los Angeles, Orange, and San Diego)
     • sometimes companies who provide the caps will refer you to someone or have someone you can hire to assist you. For example, a capper from Dallas hired a helper via Chemo Cold Caps.

Always remember that these are not personal recommendations - you will have to vet helpers yourself. When considering hiring a helper, find out the following:

• Length of service
• Number of those helped hands-on
• Recommendations from past user's including contact info.
• Before and After Photo's

1. What do I need to do to get cold caps?
   • Decide on the company/product you want to purchase and contact them for details.
2. Is there anything I should avoid doing to my hair prior to starting chemo/cold caps?
   • Penguin recommends you do NOT highlight or cut your hair prior to chemo.
3. OK...so how cold is it...REALLY? I don't know if I can handle it.
   • The first two caps are SUPER cold, but after that, your scalp gets numb and the remainder of the caps are much more tolerable. The first few seconds of each new cap is quite cold, but the sensation passes quickly. Some cappers ask their doc if they can take Tylenol or something stronger prior to starting the capping process, and they find that helpful. Many cap without needing any pain medication. Tolerance varies widely amongst individuals.
4. So what do I have to actually do each time I get chemo and use the caps?

The process varies depending on the product you are using and whether your facility has a biomedical freezer or not. Caps have to be kept at a range of - 32 to -28 degrees Celsius, and a normal freezer cannot keep them that cold. States that have freezers can be found here: http://www.rapunzelproject.org/ColdCaps.aspx#TheFreezers

If there is no freezer at your facility, and you have time before chemo starts, you can contact Rapunzel about having a freezer donated to your facility. If you cannot get a freezer, you will need to cool your caps for your day of treatment using dry ice in 2 Igloo "Cube" freezers. After day of treatment they can be stored in your home freezer.

Most cappers follow the Penguin protocol, even if they are using Elastogels. Penguin has some tutorials on their website. The process is too detailed to review in depth here. However, the general overview is you start capping a certain amount of time before your infusion starts. You will then change caps frequently (20 to 30 minutes depending on protocol/caps using, etc.) before, during, and for 4 hours after your infusion stops. Thicker hair will generally use a colder cap than thinner hair.

Penguin protocol recommends that you do not cut your hair or color it prior to starting chemo, nor during chemo or for a period of time afterwards (see below for more details). It is also recommended you only wash your hair twice a week with room temperature water, and only with sulfate-free shampoo. Various products have been recommended. You may not blow dry your hair and will need to comb it gently. For specific suggestions, please post on the main cold caps thread. Yes, your hair will have days it looks oily (it does dry out as chemo progresses and this is less of an issue). And, you will have roots growing in (there are certain products you can use to try to hide the roots without coloring). However, most cappers feel that "a bad hair day is better than a no-hair day". Here's a great quote from one of our seasoned cappers on the CC thread (thanks mdg!):

"Not washing hair? Gray roots growing in? Greasy hair? Ick! Why would that be good??? Then I realized that it would take me years to grow back my long hair again. Chemo was going to be crappy anyway so why not have all the crap at once? If I don't cap, I will be crappy during chemo and then be crappy for a year later with bald head, peach fuzz and that "cancer" look because of my hair. I opted for caps."

Some other tips:

1) order the caps ASAP so you aren't stressing about them arriving on time!

2) look for a distributor of dry ice in your area - they are cheaper. Try https://www.continentalcarbonic.com/ and search for a distributor near you. If you are going to be wearing the caps for a long time, you may want to get 100# of dry ice instead of 80#. A very experienced capper says: "I always get minimum 100#'s. What doesn't fit into the 2 coolers I bring in another cooler. I use it to restock the 2 coolers that have the caps."

3) To help you keep track of what # cap you are on (so you can re-freeze them in the proper order), put numbers inside each plastic box or on a piece of blue painter's tape on the outside of each box.

4) For Elastogels specifically (from a patient who was having trouble with lumpiness that wouldn't knead out properly when they were cold - please confirm for yourself): " They say to turn the caps inside out and heat them in the microwave for no more than 30 seconds, then knead them to smooth the lumps out. They mentioned that their gel is glycerin based, while Penguin's gel is water based. Also they say to store them upside down with the plastic form they provide to help the gel stay even."

For specific tips after you have reviewed the overall process from your cap supplier, please post your questions on the main cold caps thread, not here. The majority of cappers are on that thread and you will get the best support there: https://community.breastcancer.org/forum/6/topic/735873?page=1

1. Do you have a "packing list" of things to take with me on chemo day that are specific for the caps?
   • coolers with dry ice and caps (unless your facility has a biomedical specialty freezer to store your caps in)
   • gel bands when using Penguin caps
   • bands (extra band/ace wraps)
   • bandana for under chin strap or old sock cut on the end and placed over band
   • gauze if part or hairline if scalp gets too red
   • moleskin for forehead
   • infrared thermometer and extra back-up battery for it - important!!!
   • garden-type gloves for handling the caps/dry ice
   • 1-2 hand towels to lay caps on, another hand towel or washcloth to dry off caps
   • electric blanket
   • kitchen timer or smartphone to time cap changes
   • sweater and warm pants and socks
   • neck pillow

1. What is the "typical" pattern of shedding during and post chemo?
   • Overall thinning typically is 20% to 30% (may be more in some cases, varies with regimen, caps used, and how carefully one follows the protocol - some have lost 40-50%, those who lose more may opt to stop capping); most loss occurs around the temples and nape of neck area. This is due to not enough gel in the bottom back of cap, not using gel bands, and using ear covers which insulates the cold from not only the ears but also any area surrounding the ears that gets covered.
   • shedding typically starts between days 18 - 21 after your first chemo infusion. Shedding patterns vary considerably amongst cappers. Some only shed during chemo, some have more shedding post chemo. Sometimes shedding post chemo can last as long as 4 months.
2. When can I color my hair after I'm doing with capping?
   • Protocol typically is 3 months PFC (post final chemo) using a vegetable based dye-no highlights/bleaching. After 6 months PFC, normal hair care.
3. Where can I get ongoing support while I am going through chemo and using the caps?
   • The best place for support is the main cold caps thread here: https://community.breastcancer.org/forum/6/topic/735873?page=1