Cold Caps Usage Tips

I used PCCs and I put tips on my blog. Link below.

I used the Penguin Cold Caps, dry ice in coolers from 11/2010 - 1/2011. I had TCx4 @ 3 weeks. I kept 70 - 75% of my hair. I was 45 and mostly a vegetarian..some poultry and fish....I mention this because I shed for a long time after chemo....until June/ July ... And many times thought I'd lose all my hair...I did not and no one could tell but me, and now they know that iron may help shedding. I used the caps 2-3 times per week for an hour (2caps @ 30 minutes each) out of kitchen freezer b/n treatments.



Best tips .... 1) Trust your helpers...and two is better than one..unless you are one of the greatest DHs ..that some have ... which I did not. 2) Electric blanket. Life saver for me! 3) Ativan in my IV..stressful enough and it helped me! 4) Dr. Scholls moleskin to protect forehead. 5) Change your part at cap changes to protect bare scalp 6) eat something b4 infusion... 7) drink, drink and drink more water during and after for two days.... 8) remember if the cold feels like its too much it will go away after 3 minutes....the first is the worst and it's all easier after the first time..... 9) have faith.....

I just let my hair fall out.  Shaved it off when it started to look weird.  It has come back thicker and fast.  Who cares about no hair for a few months when it comes back anyway..... much bigger things to worry about.

@ Sian65-Not many are aware that this technolgy exists-here in the US, and apparently in Sweden as well, or you would have known that there is cold cap which is manufactured there in Sweden. It's the Dignicap, made by the Digitana company. They just finished a clinical trial for those caps in San Francisco, CA. We don't all feel the same about losing our hair. Some are okay with being bald and having short hair. For others like myself it would take years to grow my hair to the same length! Sometimes the hair never grows back!! There is @ 7% chance of that happening with certain chemo drugs. Another good reason for using the caps is that it allows you to maintain your privacy-no one would know you're a 'cancer patient' unless you tell them. You look healthy-you feel healthier

Hi all~

I noticed the comment about being on iron.

I was on a high dose of iron after chemo due to anemia and I did not have much shedding at all.

Not sure if those are connected...but it does sound like many people do shed.

Hot tea, and a special blanket that you heat in the microwave helped me through the PCC's.

(Also ativan and a supportive Cold Cap husband!)

Pamela - most of the work for the hair is done on the actual chemo day.  Usually someone goes with you to chemo so maybe whomever takes you to chemo can help do the caps.  It involves dry ice, coolers and someone helping you put the caps on.  You may also consider letting us know where you live and will be treated because some of us gals that used the cold caps have helped others.  Good luck to you.  I know this is all very overwhelming.  Hugs!

Pamela, It is work, but I am sure everyone who used them will agree it was well worth it. Dealing with the caps was actually a welcome distraction. Good luck, it is all so overwhelming at first.

Sian - it is a personal preference and personal choice however this thread is for people that want to find out about using them.  It's not about vanity - it's about privacy and also normalcy.  My 4 year old son will not have images in his mind of "bald and sick mommy".  He does not even know I had cancer or what it is at this point.  I felt no need to teach him the words "chemo" and "cancer" since I was stage 1.  Now I have the choice to tell him when he is old enough and not scare him and he can see I am just fine.  I returned to work after my disability leave and no one knew I had cancer - it was my choice whether I wanted to tell people or not.  I returned to teaching aerobics 3 weeks after chemo with a full head of hair - my class never knew I had cancer and I did not have to teach a fitness class and stand in front of a full room of people bald.  I was just "me" as I was before BC.  These things were important to ME.  Each of us has many decisions to make in the BC journey and this is something many people are interested in learning about.  I preferred to spend my money on keeping my very long hair - not scarves.  Again, a personal choice. 

Sian65 - I respect your choice to shave your head.  Please respect our choice to save our hair.  Please refrain from making judgements about what is indeed a very personal choice.  A little sensitivity to other's feelings goes a long way in this world. 

And yes, there is a 3 to 6% chance of permanent hair loss with certain drugs.  Most doctors do not tell their patients about this.  That was not a risk I was willing to take, no matter how small it was, if I had an option to prevent it from happening.  

I am using Cold Caps after discovering their existence on this website. I started T/C chemo on May 8th and tried to use every tip I could find on chemo and Cold Caps. I filled a notebook with suggestions. The one I should have paid the closest attention to was to NOT chemically treat hair for three weeks before chemo. I have since learned the hard way that it is best to go into chemo with a bit of length of natural roots which are much stronger than hair that has been weakened by coloring, straightening, or any other chemical treatment. I foolishly lightened my hair six days before chemo and ended up with a lot of breakage months later, at the exact point between my new healthy natural roots (which thanks to cold caps grew vigorously throughout chemo) and the lightened area. It was totally avoidable.

2/16/13 I want to add that I kept my hair and look like myself. Cold caps really DO work. 

I have to say the caps are very cold, colder than I expected. I was surprised when the first one was being put on, and after a brief moment of panic, decided I could do it. It does get bearable, especially with all the meds being given. I will use a double layer of moleskin on my forehead next time as my forehead did swell up a bit afterwards.

I went in prepared with two layers of long underwear bottoms and a comfortable elastic waisted exersize pant. On top I had a long underwear shirt, a long sleeve T-shirt and a medium weight cotton turtle neck sweater toped with a zip front fleece jacket. I sat in the chair wrapped up in a twin sized electric blanket which was lovely and comforting. My core body stayed warm, so warm that I didn't need socks, nor did it bother me to put my feet on frozen gel packs and wrap my toes with them during the Taxotere treatment's hour. I also iced my fingers in bags of frozen peas. I must have looked ridiculous.

I was careful to change my hair part every so often and I kneaded the caps as they were on my scalp to be sure they stayed in contact with my head as they warmed with my body heat and changed shape a bit. I have long straight hair and I was told to leave it hanging naturally as the caps were put on. I did pat and smooth it down before starting to be sure the caps would have the best contact. As I had been advised not to wash my hair for three days before treatment, it was pretty easy to get it to stay where I wanted it to stay. I did not wash it for three days afterwards, also as advised, which was not terribly charming as normally I love clean, shining hair, but I am trying to do everything to save my hair.

I figure, to get my hair back to the way it looks now, to the me I recognize, would probably take three to four years. If it even came back the same. I am reading that chemo hair comes back curly and that is definitely NOT me. Having cancer is enough, I do not want to be reminded of it every time I look in a mirror, see my reflection in a window or touch my head. Keeping my hair, if I can, will do wonders to help me fight this disease psychologically and to feel I am living as normal life as possible.

7/20/12 update - I finished my T/C treatments last week and while my hair has shed a lot and become considerably thinner in volume, I still have it. Most people would have no idea that my hair is thinner, much less that I have just gone through chemotherapy - unless I show them my poor abused left wrist with its angry veins, but that will go away. I am so glad that I found out about Cold Caps on this website, and that I was able to use them. They do work.

8/2/12 - Three weeks post chemo and I am feeling like myself again. My veins have healed and my hair looks amazingly normal considering all I have been through. I probably lost 35% of it to shedding, but I had a lot to start with so I look fine. I had colored my roots six days before starting chemo, which is not recommended, so some of that shedding is probably my fault. I now wish I had not done so. Roots are not a big deal, keeping hair through chemo is.

As for shedding, you will lose the oldest hairs. Don't panic. Cold caps help preserve the rest. I found that I started shedding at about three weeks after my first treatment - when most women go entirely bald - and had the most shedding at four weeks, just after my second treatment, then it slowed down although it did not end. I still shed, but I am now doing so fairly close to what I used to before chemo. I know that because I kept samples of what I lost during shampoos before chemo and during it. 

My hair kept growing right through chemo, I have the dark roots to prove it, and I also have small bristly hairs coming in all over my head which are probably replacements for what fell out. It truly is amazing.

A tip for women with big heads like mine. Order some extra headbands, which are normally used for saving eyebrows, and have your helper wrap them around your head below the cold cap so that you won't lose hair where the cap does not cover entirely. In my case, at the nap of the neck and near my ears. By using them I have not lost the hair in those spots although I have read that others did. Fortunately, my helper had exeprience with the caps as she helps many women with them and knew that trick. It's a good one. 

Hortense, Just click "Add to My Favorite Topics" and you won't have to look anymore.

Your thoughts on the psychological aspect of keeping your hair were mine as well. Both the staff at my MO and RO's offices told me how they thought my positive attitude helped me throughout treatment. I told them I had a positive attitude because I had hair.

        I just started using Penguin Cold caps yesterday for my 1st of four chemotherapy treatments TC every 3 weeks x4. Has anyone had trouble getting the caps to -32c with the dry ice method? I followed instructions perfectly, but I had to take some of the caps from the keep boxes and put them in freezer bags to get them cold enough.....and they were very unevenly cooled even with plenty of kneading. Now I have to wait a couple of weeks to see if it is working. Its so much work, I hope its  not for nothing!! Thanks for any advice.

Thanks for the reply Dancetrancer. I am new to this discussion board, in fact this is the first time I have ever posted a question! I got the caps the day before and put them (still in their keeper boxes) into my freezer. I put them on dry ice, 80 lbs in the recommended coolers at 1pm. My infusion was delayed and did not start until 

6:30 pm. We were really worried that they were going to be too cold and get damaged and at first we thought the thermometer was not working right. We had to randomly go through the cooler and find the coldest caps and put the warmer ones in ziplocks too cool them down. Yesterday was 90+ degrees so maybe that didn't

help. I hope too much damage was not done and I didnt just give myself a mohawk or something! I will try more dry ice and pack them earlier next time....if I still have hair! 

My infusion center closes at 9pm. My appointment was at 3:30pm but I think things got delayed because they were a little befuddled by the caps. I was supposed to be put in a private room, but one was not available when I arrived. It was a long day ! Hopefully things will go smoother for infusion # 2.