Cold Caps Users Past and Present, to Save Hair

wyomama

ok, I'm calming down, maybe just a shock. It's a significant length change. I talked to my penguin rep too, she wasn't really confidence inspiring, more like what's done is done type of thing. Stressing out will likely only make it worse. 

My hair feels so nice and healthy too now, I'm hoping that's in my favor. 

Warrior_Woman

I've seen lots of women on here break from the PCC rules without any problems.  I really doubt your haircut will matter Wyo.  

Oh, but go ahead and freak out if you want to.  I certainly went high drama at every turn.  

mdg

I colored my hair two weeks before chemo and I did OK

jc254

Daye, you've probably already left on your trip but I hope you have a fantastic time.  You're way too young to be dealing with all this breast cancer crap and it's time to get on with your life.  It must have seemed like this day would never arrive.  Can you tell I'm really happy for you?  : )

Wyomama, you've gotten some good advice so far and I'll add one more thing.  Make sure you order the caps so they arrive with enough time for you and your helpers to practice putting on and changing the caps before your first chemo.  They'll get the hang of it pretty quickly, but you don't want to be figuring it out during the first infusion. 

Deepcreek you've had amazing cold cap success with the ACT chemo regimen.  It's the best result I've seen so far.  Congratulations!

Warrior, maybe a dumb question, but why do they tape your eyes?

 

Warrior_Woman

JC - I first heard about the eye taping somewhere on here.  My anesthesiologist said something about eye lids fluttering and they worry something could get dropped into the eyes.  Personally, I recommend holding tight to that knife but what do I know.  I'm just the chick getting new boobs and worrying about my hair.  I heard from someone that her last few lashes and brows were removed by the tape so he agreed to use the eye goo instead.  I am very glad I remembered to ask.  The goo is like Vaseline so everything was blurry when I woke up.  One of the first questions I asked when I woke up was about my lashes and brows.  Later I asked about my boobs.  I made it a point to put the cap on my head right away and have all my hair tucked in to make certain they didn't pull it.     

jc254

Warrior, I'm glad your surgery went well and that your sense of humor is still intact! 

sciencegal

Hi girls- Just checking in after a long time away. A friend of mine might be checking out this thread since she has unfortunately just joined our ranks, which prompted me to check back in.

Congrats Warriorwoman! You are through the worst of it now. 

Deepcreek your hair is gorgeous and I am so glad you were able to keep it! My hair is also long, I got some thin spots where the caps didnt fit completely and my part was a bit wider. but sprinkling on Toppik microfibers in blonde totally got me through, no one had any idea I was in chemo.

As an update, a year after finishing chemo- my old long hair is still all there and the new hair has gown in furiously- wild and wavy and about six plus inches long- and I dont care what it looks like, I am not cutting a hair! In the wind it can be pretty crazy but I just use claw clips. I value each and every hair. I am sure you can all relate.

Thank you again to all of you for support- it is a stressful time while capping but SO worth it, especially for us gals who have been growing our hair for years.

Big hugs to all

Kazzy115

Hi Ladies.  Have any of you had to cold cap during a long commute from the hospital to home following the treatment.  How did you manage?   I've got at least 3 cap changes that would be required during my communte home following infusions and wondering if I'm better off to stay near the hospital for the 4+ hours required.  Thoughts?

marley2

I had to change caps twice on my drive home. We would pull into a parking lot and do it there.  Not easy, but I was always anxious to leave the hospital!

Kazzy115

Thanks, Marley.  I suspect I will be as anxious to leave!  Three days before my first chemo... anxious and scared to start.  Yesterday I had a woman - a wig salesperson - tell me she had a client that permanently lost her hair as a result of cold caps.  While I've not seen anything to indicate this could be true (unless, I suppose, you get frost bite all over your scalp) it amped up the level of nervous I've been feeling.

mdg

Kazzy...everyone told me cold caps wouldn't work.....ha!  Were they wrong!!!  Don't believe the "nay-sayers".  I am sick of people making rude comments about the caps and in general while people dealing with BC are especially vulnerable.  People are so stupid.  She just wanted to sell you a wig......such crap!!!

mdg

By the way there is a risk of permanent hair loss from taxotere.....that is true.  Google it and look at the side effects on the prescribing information.  The only problem is they under report the occurrence of permanent hair loss from taxotere.  It is much higher.   I personally know a few women that did not use caps because their doctors would not support it and now they have permanent hair loss from taxotere. 

qrex1

Kazzy-I used cold caps and finished mid-April 2013.  I had some underneath balding that was easily covered with my hair and I lost about 1/3 of my hair.  It is all growing back, with the bald spots probably about six inches now.  To this day, no one knows about my chemo, except those I told.  No one could tell.  I know someone who was considering the caps and decided against it at the last minute.  She probably finished chemo the end of 2013 and she has had NO regrowth of her hair, she fears permanent hair loss.  I do not believe I have not seen anyone on this site say that they have had permanent hair loss after use of cold caps and I have through almost all of the posts. 

I had to do two cap changes on the way home in parking lots, stressful, but cappers were great!  My center now has a freezer though.  Have you tried to get a freezer donated by the rapunzel project  to your center or is there a center in your area that has a freezer?

http://www.rapunzelproject.org

Good Luck Kazzy!

wyomama

The oncologist I saw that told me to do the caps encouraged me to do it not only because she believes in them and has seen how they work, but because of the taxotere side effect.  That was more than enough to get me to sign up.

I can't believe someone told you that the cap would make you permanently lose your hair.  I haven't seen that anywhere that I have looked online, and I've been scouring the inernet.

Good luck this week Kazzy, I'll be thinking of you.  I'm right behind you, I think my first treatment is on 5/6 and I'm terrified.

 

I've been meaning to ask the group, how is it possible that I'll have enough caps if I have to change them every 30 minutes, but I'll be at the cancer center for at least 8 hours, then I have 4 hours of cap changes afterwards?  8 caps works for 4 hours, no?  I'm going to be starting with dry ice, and then going to the freezer method as soon as the rapunzel foundation gets my freezer to my clinic, and then I'll have 6 extra caps??  I'm just confused all around.

Kazzy115

Thanks, Ladies.  I have heard of the taxotere / permanent hair loss connection.  So many women not warned of that significant result.

Wyomama - I am using dry ice with 8 caps.  The caps get put back into the cooler with dry ice and get reused in the specific order. By the time you are ready for the 9th cap change, cap #1 should be cold enough to use again. 

I am quite certain it will be a bit harried the first time or two. 

I have reached out to the Rapunzel Project and the indicated no luck to date with my center.  I will certainly push...

Enjoy what's left of the weekend!

Hortense

sweeetmom - I think I started using Nioxin about two weeks after ending chemo. I couldn't stand the build up on my scalp any longer. It worked wonders, but took two shampoo sessions a few days apart to really get the job done.  Wet your hair with cool water, gently work the Nioxin into your hair and let it sit on your scalp a while to soften and loosen the build up and flakes. I'd leave it sitting 5 - 10 minutes. The Nioxin feels slightly tingly. Then gently massage your scalp - no rubbing - just work your fingers very gently through your hair at scalp level to help loosen everything and gently rinse your hair thoroughly.

agness

I'm a few days out from my third chemo infusion (TCHP) and I have lost a lot underneath around the edges but the ready of my hair covers it. I've had more shedding than I expected but still no one can really tell.

I was feeling a big glum as who wants to have crappy looking hair but then I was sorting through emails related to BC and saw one from Dr Borges in Denver where she advised me to use the cold caps due to the risk of permanent hair loss. Hopefully, even though there has been some hair loss that the cold caps still have helped protect those follicles somewhat from the ravages of treatment so regrowth will be unaffected.

This round I will go the day before to get my bloodwork done. I have found that having it done day if treatment makes it really hard to time when to start between the delays to get into my room, have my port accessed and blood taken, have the blood labs run, meet with the MO, get the results back, get the chemo meds ordered and filled and then started. I live nearby to my hospital so it isn't a big deal to get the bloodwork done, though it will be through my arm and not the port.

BTW, icing hands and feet also seems to help a lot. So far my fingernails and toe nails look great and no tingling.

wyomama

Agness, Dr Borges is the onc I saw last Monday who told me about cold caps! 

If I wasn't 4 hours from Denver, that's where I'd get treatment, Borges is amazing and really on the cutting edge. And the university of Colorado is really nice.

Hortense

agness - Good girl for icing your hands and feet! It sounds like you are doing well hair-wise too, so give yourself a pat on the back for all of your effort. None of this is easy, but it is worth it. Many people can not believe how well I look and it's due to having kept my hair. 

There will be bad hair days, no denying that, but they will soon be behind you. You will not believe how fast your hair will fill in. Just when I thought mine never would, I discovered an army of new hairs that were already half an inch long and coming in everywhere. New ones start out almost transparent and are thinner than a mature hair shaft, so you will not see them at first, but when you finally do spot them you will be so delighted!

wyomama

Hi ladies!

I just thought of a few more questions, and I'm sure I'll be coming up with more as I go along.

Are there any special rules about how I sleep?  I ordered satin pillowcases, but I don't know beyond that!  Should I put my hair a certain way?  I tend to toss and turn at night.

How do you shower to get clean without getting your hair wet?  Can I use a shower cap and gently put my hair in it?

How weak will my hair become?  I'm just so unsure about what to expect, I feel like if I touch my hair it will fall out.  How often can I comb it?

thanks in advance

mdg

I tried to only lightly comb once a day.  I just avoided touching it.  I lightly patted my hair with shampoo and focused on 1 section at a time with shampoo.  I slept on satin pillowcases too.  I left my hair loose to sleep but I did put a silk sleeping cap on.  I don't think PCC recommends that though. 

Deepcreek08

Congrats Warrior Woman on your surgery! Hope everything is going perky for you!! 

Daye- enjoy your trip- you deserve it and thank you for all the encouragement you posted on here!

Sweetmom- congratulationson finishing your chemo!! Did/are you going to celebrate?!? My 8th and last chemo is tomorrow and I can't wait to join the PFC Crew as it were!! Like you, I can't wait to pack up the caps and send them back!

Kazzy115- And mdg is right- ignore the negative nellies out there! I was sitting in the American Cancer Society's "Look Good Feel Better" class when the instructor said my cold capping doesn't work...and I was the chemo patient WITH lots of hair on my head! Sigh.....I will write up a post with all the products I used to save/keep my hair during this process and post it- because I when I first found out I had to pull it from many different posts all over and I had many of the same concerns you have.

Wyomama: I have a spreadsheet I can send you if you message me your email
address. My dad created it for tracking the cap changes- it works great!

jc254

Wyomama and any other cold cap beginners... you rotate through the caps so that by the time you're back to cap #1 it should be cold enough.  That's why you're supposed to number the cap boxes.  You should check the temperature of the next cap 10 minutes before its time for a cap change.  If the cap is the right temperature, put it back in its box and place it in the cooler.  If the cap is too cold, take it out of the box and knead the cap for a few minutes.  If the cap is not cold enough, take it out of the box and place it directly on the dry ice for a few minutes.  It will get cold quickly.  Make sure your dry ice is wrapped in storage bags before you do this or you might damage the cap.

 

hope49

wyomama, on non hair washing days (which was most days LOL!) I used a shower cap and made sure to keep the spray off my head.  On hair wash days I got 2 bottles like they use for hair dye at Sally's and then mixed one with shampoo/water and one with conditioner/water to dilute.  I found the nozzles on those bottles really allowed me to get the shampoo where I needed it, then I just gently patted it all in and rinsed in tepid water with a hand help sprayer attachment dialed to low flow.  For the conditioner, I leaned forward and focused on putting that just on the mid to ends of my hair, squished it in and then rinsed again with the tepid water.  I then used one of my husband's cotton t-shirts to carefully blot my hair when I got out of the shower.  After trying a few brands I settled on DermOrganic shampoo and conditioner, then used California Baby detangler spray before lightly combing it out with a very wide tooth comb.  Once my hair started to dry out from the chemo, I also used SeaChi leave in conditioner just on the ends.  If I wasn't going out I just let it air dry put it back gently with small claw clips and tried to leave it alone and not look at it!  If I was going out, I used a blow dryer on cool until it was just about dry and then very carefully set with velcro rollers and let it dry the rest of the way...it gave me lots of bounce and at least one good hair day per cycle!  The best thing to do is just a gentle combing once a day, then leave it alone...you'll see many strays taking leave, but try to focus on all the hair that's still there vs. what's lost and know we've all gone though the same patterns of hope, then panic, and have come out successfully in the end.  Good luck!

wyomama

thanks Hope and JC!

My nurse just called and let me know that I am doing perjeta, herceptin, taxo and carbo, in that order.  Can I wait to start the caps until I'm in the midst of herceptin?  My infusions are more than 5 hours long each time.  So I'm looking at 10-11 hours of cap changes.  If I can start them during herceptin, I cut out about 3 hours of wearing the caps.  I don't want to risk my success, but 10-11 hours is looooooooooong.

thanks!

dancetrancer

That should be fine, IMO.  You just need to have your scalp cold and the blood vessels there constricted BEFORE you get any drugs that cause hair loss - Tax and Carbo.  The herceptin doesn't cause hair loss (and I don't think Perjeta does either, but my knowledge of that new drug is limited).  

Follow the protocol - I forget the time you have to be cooled prior, but someone here who did it recently will chime in. 

PatinMN

wyomama, see if you can persuade your oncologist to allow you to do perjeta and herceptin last.  That way your post-chemo 4 hours of cap changes will include the two drugs that don't cause hair loss and your total time capping can be reduced.  (I'm not sure either about perjeta and hair loss so you should make sure of that if you haven't already.)  I persuaded my chemo nurse to allow me to do Herceptin last, although it was initially set up to be first on the schedule.  Noone could come up with a particular reason why Herceptin needed to be first so they allowed me to change the order.

dancetrancer

Oh that's right Pat - I remember asking my H to be done last, too, for the same reason.  I wanted to get those caps going as early in the day as possible...it is a long enough day as it is! 

wyomama

you guys are genius!!! I'll call them

Tomorrow

wyomama

Has anyone here done perjeta as well?  I looked it up and there is a possibility of hair loss.  Not freaking awesome at all, I'm pretty sure I'm on that too for a year.