December 28, 2017

Information

Cold Caps:

Introduction:

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 even mentioned the words!  Luckily I was searching the internet for some other info related to breast cancer and happened to stumble across this.  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 one of my breasts and I didn’t want it take any more from me.  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.

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.

First of all, 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 because if you lost that much hair it may look better to just shave it anyway.

Secondly, cold capping is fairly expensive and it’s not usually covered by insurance.  However, that could change in the future, so check with your insurance company to verify their policies.  My insurance would not reimburse anything for cold caps and even specifically excluded paying for the cost of a wig!

Surprisingly there aren’t a lot of local businesses in my state that provided cold capping services and cap rentals.  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.  I needed the service for someone to perform the cap changing process for me because I didn’t have any friends who I knew could definitely be there for each infusion and the cold capping process lasted about 7 hours each time.  So if you have a friend or relative available to help apply the cold caps, the cost would be reduced.  The process isn’t difficult at all but it is some work and takes attention to details.  The process includes changing the caps every 30 minutes, using an infrared thermometer to ensure the cap is at the correct temperature before putting it on, 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, kneading the caps since the gel gets stiff when frozen, moving the dry ice around in the cooler (must wear gloves to protect hands!), etc.

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.  The medical community doesn’t seem to think that losing your hair is a big deal so that may be why they’re not really letting patients know this is an option.  They’re 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.

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).

My Experience:

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.

You also have 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 put on the first cap (Cap #1) starting 1 hour prior to the beginning of the chemo infusion.  This usually worked out well by starting cold capping when the chemo nurse started the chemo pre-drugs.  On each infusion day the person who did my cold capping would usually ask the nurse how long the pre-drugs would take and when the chemo infusion would begin just to help coordinate the timing.  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 3-4 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, that hour can be used for the post-chemo 3-4 hour period.  Then you would only need to leave the infusion center and wear the caps for 2-3 more hours.  Just a technicality, but I preferred to stay in the infusion center chair for the entire 7 hours if I could to 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.  I asked the nurse for some Ativan and the anxiety went away quickly.

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.  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 is about shoulder length).

Even if 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!