Information

Cold Caps

Background:

Just because you’re getting ready to have chemotherapy doesn’t necessarily mean you have to lose your hair!!  I was shocked to learn about cold caps or cold capping because I had never heard of it before.  What was especially maddening was that none of my doctors (especially my medical oncologist!!) NEVER mentioned it!  Luckily I was searching the internet for some other info related to breast cancer and happened to stumble across it.  I was seriously considering NOT doing chemo because I didn’t want to lose my hair.  I don’t have the greatest hair but it’s MINE!  Breast cancer had already taken too much from me and I didn’t want it take any more.  I anticipated that seeing myself bald was going to be traumatic and then I would “look” sick.  It would also make everybody else see me that way too.  I also thought that wearing a wig would make me self-conscious.  I only told very close friends and my boss about my diagnosis at first because I just wanted to be treated the same as before and I didn’t feel it was everybody’s business to know anyway.

What is cold capping?

The theory is that cold capping causes the blood vessels to constrict (vasoconstriction) and less chemotherapy to reach the hair follicles thereby reducing the chances of the hair falling out.

Types of Cold Caps:

There are 2 basic categories of cold caps – cold cap machines and manual cold caps.

Cold Cap Machines – There are 2 machines that have received FDA clearance: 1) DigniCap system (www.dignicap.com)and 2) Paxman Scalp Cooling System (www.paxmanscalpcooling.com) or (www.paxmanusa.com).

Manual Cold Caps – These are not FDA cleared and are generally rented by the patient.  They must be placed in a cooler on dry ice or in a biomedical freezer (must be able to maintain a temperature of -30 degrees Celsius or -22 degrees Fahrenheit).  A standard household freezer does not get cold enough.  The manual cold caps are used by a majority of patients because the cold cap machines are not available in all areas.

There are 2 brands of manual cold caps – Penguin and Elastogel.  Penguin caps are rented by Penguin Cold Caps and there are several companies that rent the Elastogel caps.  At one time you could purchase the Elastogel caps on Amazon but they have been sold out for some time.  (For more information see http://www.rapunzelproject.org/ColdCaps.aspx.)

From the information I’ve read it appears that the Penguin cold caps are more effective for those receiving AC chemotherapy (Adriamycin and cyclophosphamide) which is generally tougher on the hair than the taxanes (Taxol and Taxotere).

Things to Know:
  1. It’s important to know that there’s no guarantee that cold capping will be successful for everybody.  Studies consider “success” as losing 50% or less of your hair!  Most people wouldn’t really consider that a success!  If you lost that much hair it may look better to just shave it anyway.  I had to go into the process with a mindset hoping it would work, but knowing there was a possibility it wouldn’t.
  2. Cold capping is fairly expensive and not usually covered by insurance.  However, that could change in the future, so check with your insurance company to verify their policies.  When I did cold capping my insurance would not reimburse anything for cold caps and even specifically excluded paying for the cost of a wig!
  3. Surprisingly, there weren’t a lot of local businesses in my state that provided cold capping services and cap rentals.
  4. Cost:  I paid $250/infusion to rent the caps and $400/infusion for the cold capping service.  I had 4 infusions, so it cost me a total of $2,600.  If you had someone to put the caps on for you, then you would only need to pay to rent the caps.
  5. Process:  For manual cold caps, begin about 1 hour before the chemo infusion starts and end about 1 hour afterward (2 hours may be even better).  The process isn’t difficult, but attention to detail is essential to help increase the chances of success!  The process includes:
    • Changing caps every 30 minutes (1st cap after 20 min),
    • Using infrared thermometer to ensure cap is at the correct temperature (approximately -22 degrees Fahrenheit) before putting it on (they can be TOO COLD),
    • Kneading the cap before putting it on since the gel gets stiff when frozen,
    • Keeping track of the caps used so they are rotated in order so a removed cap has time to refreeze before it’s used again (I had a set of 5 caps; it’s normally a set of 6 but the chin strap on one cap wasn’t working).  NOTE:  You must wear gloves to protect your hands when handling dry ice!
Prepare Cold Caps the Night Before Chemo:

This is the process I used:

  1. The day before chemo I went purchased dry ice.  The woman I rented the caps from had an account at a welding supply store and I used that to get a reduced price for the dry ice.  Dry ice is pretty expensive if purchased at a grocery store.  As part of the cap rental I received an Igloo Cube 60 quart cooler with wheels.  A cooler with wheels is essential because it will be heavy when filled.
  2. I think I purchased about 70 pounds of dry ice.  The dry ice was in blocks about 3-4 inches thick and about the same width as the cooler.  The total amount of dry ice was enough to fill the entire cooler.
  3. Later that night about 10:00 pm I prepared the cooler.  During the week I kept the cold caps in my freezer.  A regular freezer isn’t cold enough when actually using the caps, but it did give them a head start so they didn’t have to start from room temperature.
  4. Put your gloves on before handling dry ice.
  5. I put a layer of dry ice at the bottom of the cooler.  Try to keep it in larger chunks instead of crushing it up.
  6. I set all the cold caps on the floor upside down (top on the floor).
  7. I had a plastic grocery bag for each cap.  I crushed some dry ice (pieces not too small) and put it in grocery bag until it was about the size of a softball.  I spun the bag around to close it and put one inside each cap.
  8. I think 3 caps would fit side by side in the cooler to form a layer.  I put 3 caps in the cooler and put dry ice chunks around each cap and a layer on top of the caps.
  9. I put the remaining 2 caps in the cooler on the second level and put dry ice around those caps also.
  10. I filled up the remainder of the cooler with dry ice.  I would usually have a little bit left over that wouldn’t fit in the cooler.
My Experience with Doctors and Nurses:

I felt that I at least had to try the cold caps to see if I could keep my hair.  When I told my medical oncologist that I was doing cold capping he wasn’t opposed to the idea, but he wasn’t very enthusiastic either.  The medical community doesn’t seem to think that losing your hair is a big deal (especially my male oncologist), so that may be why they’re not really letting patients know this is an option.  They’re also more widely used in Europe than the U.S.  Doctors just focused on the cancer treatment and getting rid of the cancer cells.  They also think that the quality of wigs is good.  But I think quality of life and the person’s mental health and how they feel about their bodies are important too.  Especially if it’s not interfering with the effectiveness of chemo.  The chemo nurses’ attitude was that they would NOT get involved with the cold capping process at all but they were ok with it as long as it didn’t get in the way of them doing their job during the infusion process.

My Experience with Cold Caps:

I had Taxol chemotherapy only and rented the Elastogel cold caps.  I received a set of 5 cold caps.  It helped that the caps were in individual large freezer bags that were numbered so it was easier to rotate the caps throughout chemo day.  Also keep the cardboard insert inside each cap to help maintain the shape.

It’s also important that you use an infrared thermometer to make sure the cold cap is at the proper temperature (approximately -30 degrees Celcius or -22 degrees Fahrenheit) before putting it on.  Sometimes it can get TOO cold and needs to warm up a little and you also need to knead the cap several minutes to make the gel a little more flexible as well.  (The cold cap helper applied moleskin on my forehead and on my ears to prevent frostbite.)  Take the cap out of the freezer about 5-10 minutes before it’s time to change caps to perform these steps.  My first two caps were changed every 20 minutes and from then on caps were changed every 30 minutes.  Changing the caps on time is very important!  It’s also very important that the cap fits snugly and makes close contact to your scalp all over your head to achieve the best results.

It also helps also to baby your hair throughout the entire time you’re doing chemo and follow a lot of special instructions (see “Tips for Cap Users” at http://www.rapunzelproject.org/ColdCaps.aspx).  I don’t know if that will significantly affect the results, but since I was spending so much money I wanted to have every advantage I could.

I put on the first cap (Cap #1) starting 1 hour prior to the beginning of the chemo infusion.  This usually worked well for me since I received another infusion before chemo that took about an hour.  Since I was doing cold capping, I asked the nurse if I could do that infusion first and there was no issue with the order in which the infusions were done .  Cap #2 was put on 20 minutes later.  Cap #3 was put on 30 minutes later. The rest of the day caps are changed every 30 minutes.  When you get to Cap #5, the next cap used is Cap #1 again, and they are continually rotated in that order.  The chemo infusion would usually take 3 hours.  You need to wear the cold caps for about 1-2 hours after chemo is finished.  I wore the caps for 3 hours after chemo.  This is important because the longer you can wear the caps the more likely it is to have a successful result.

NOTE:  If you’re receiving any targeted drug infusions the same day such as Herceptin, which don’t cause hair loss, ask your medical oncologist and chemo nurse if you can receive it after chemo.  Sometimes the infusion center may be busy and they may want to free up the chair when your infusions are finished.  If Herceptin is infused after the chemo, you’ll have that hour or so to continue to wear the caps before you have to leave the infusion center and may not have to wear the caps when you get home.  Just a technicality, but I preferred to stay at the infusion center  and complete the cold capping process, especially since I hired someone to do the cold capping.

You may be asking – is it painful wearing the cold caps?  Not as nearly as bad as it sounds in theory (-22 degrees Fahrenheit!!).  The first 2 caps are by far the most uncomfortable.  Luckily the chemo nurse gave me Benadryl as part of the pre-drug process so I always felt sleepy for a little while after I got that.  I would usually just close my eyes, try to relax, and focus on the goal of keeping my hair to get through the first two caps (Cap #1 was the worst and Cap #2 was a little easier).  After that, your scalp is frozen and it only feels a little cold again for about 5 minutes after a new cap is put on.  I was able to do cold capping 4 times and it wasn’t that bad.  During the last infusion after one of the cold cap changes I got a little claustrophobic for some reason.  If you’re not claustrophobic in general, it probably wouldn’t even be an issue.  I asked the nurse for some Ativan and the anxiety went away quickly.

My Results:

Cold caps worked well for me and it made going through chemo SO much easier!  It was well worth all the hassle, expense, discomfort, etc. that goes along with the cold capping process!  The best part was that I didn’t have to look in the mirror and see myself bald.  I didn’t look like I was going through chemo and didn’t feel self conscious.  Nobody had to know about it unless I chose to tell them.  At the end of chemo I had probably only lost about 10% of my hair from thinning.  I don’t know if this is typical or not but I lost the majority of my hair in the 1 to 2 months after chemo ended.  But when all of the hair loss (shedding) stopped I still kept about 75% of my hair!  As long as you have some hair on your head (whether real or a wig) people don’t automatically think about cancer and chemo!  People aren’t that observant!  The majority of the thinning occurred where my part is on top of head and at the bottom (my hair was just above shoulder length).

Even if it didn’t work I would still have been glad that I tried the cold caps.  I wanted to at least try and fight to keep my hair!  Cancer takes too much from you and I didn’t want to give up without a fight!