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Cold Caps Users Past and Present, to Save Hair

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Comments

  • jonib
    jonib Member Posts: 94
    edited February 2016

    I love reading your success stories! I noticed that there are many facilities in NYC that support cold capping but only two in NJ. Is anyone doing cold capping at Overlook, St Barnabas, Morristown, or RWJ?

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited February 2016

    Good luck mypinklife! Hope all goes well for you!

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited February 2016

    I'm doing the Neulasta body injector. My doctor has me taking Claritin and Advil to alleviate bone pain. I'm on a TC chemo regimen.


    As for Cold Caps, I went with CCC. Their customer service has been outstanding and well worth every penny. They send everything to you including the cooler and panty liners for your ears!

    I have shed a lot of hair and am thinning on the crown. Lizzy, the owner, says that's normal. Going to use Toppik to help cover it and begin shampooing with Nioxin.

    I have two more chemo rounds to go. The cold caps give me headaches and make me nauseous. I decided I will save my hair.

  • mdg
    mdg Member Posts: 1,468
    edited February 2016

    I started sbedding on day 21 after my first TC infusion. Hair down below started the week before that. FYI.

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited February 2016

    Hi all,

    Had three rounds of A/C and have lost 80% such that I now own two wigs and will begin wearing them tomorrow for work. Have final round of A/C this week then 12 weeks of Taxol.

    Sad to say that the cold caps did not work as well for me as I had hoped, but still worth the experience. Had I not used the cold caps I expect I would be totally bald by now. With the 20% left I can still wear a baseball hat with a little coming through the back. Enough to get by on the weekends. Not a head scarf person so it is wigs and caps for me in public and natural at home. Too bare to use Toppix.

    Not sure if it will be worth it to go through 13 more rounds ( 1 A/C, 12 Taxol) but we will see. Has this happened to anyone else? Any comments would be appreciated.

    Again, so happy I tried cold caps so there would never be the wondering of What If... For those that have success...WONDERFUL I am so happy for you and wish everyone good capping and good health for all of is strong warrior women!

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited February 2016

    hi again,

    Looking back on my posts, have to say my largest shed happened about 2 days ago when after washing,with cold water of course, it seemed to simply come out without stopping. Such that I am now uncomfortable with the looks I got over the weekend. That is why I've decided to do the temporary wig route. Please do not let my experience discourage anyone!

  • angiesgo
    angiesgo Member Posts: 16
    edited February 2016

    wow Sara208 amazing results,you look great, nobody would ever know you had chemo

    Mikie1956 - I'm sorry the caps have not been so successful for you but AC can be so harsh compared to other chemo regimes

    Mypinklife - best of luck with your first session, I found it the hardest as it was all so new and you had nothing similar before to relate the experience. For me the first 15 minutes was the hardest after that you get used to it as everything is so numb

    I'm going to do taxol 5 tomorrow and I have not had any hair loss to date, some normal hair comes out after I brush in the morning but nothing excessive, my hair feels the same. I'm washing my hair once a week, so the paxman cooling machine seems tobe doing its thing effectively , let's hope it stays that way.


  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited February 2016

    mike1956 - so sorry the caps have not worked well for you. I am impressed by your positive attitude about it all. We can't control the outcome of anything in life - all we can do is make the best of whatever happens, accept it, and move forward, focusing on the positive! It sounds like you are doing just that! Thank you also for being encouraging and supportive of others despite your own difficult time. You are one strong woman and a great role model for others!

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited February 2016

    good morning,

    Yes AC is harsh, but thankfully it is shrinking the tumor and that is what is important...all other side effects are temporary. Now off to work rockin a new hair style!

  • JCS28
    JCS28 Member Posts: 92
    edited February 2016

    Thanks everyone, and GOOD LUCK! Yes, EstelaLorca, sounds like we are on the same schedule. Tomorrow is Round 2! Let's check in again later this week. I'm just ecstatic that the first round wasn't bad and I'm not dreading Round 2 tomorrow.

  • janbrandenberger
    janbrandenberger Member Posts: 3
    edited February 2016

    Thank you! I made it through first chemo. It was not perfect though. It was difficult to have each cold cap be the exact temperature and to have the chemo drugs start exactly 10 minutes into 3rd cap. I am hoping that my cancer center will have a freezer for next chemo. My scalp is very itchy. Has anyone else experienced this? How soon did you notice thinning hair around temples? I am very nervous if we did the cold cap process good enough to get good results.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited February 2016

    Janbranderberger, my scalp was very itchy. Someone posted that it is good to rinse your hair with some apple cider vinegar, if I recall correctly.

    I am at the infusion center in the chair right now getting my last Herceptin. It's been 8 months PFC and my MO said that he is convinced that a big part of my successful treatments was the fact that I kept my hair. A fellow patient in the chair next to mine just asked me how I manage to look so good, as if it was nothing.

    Good luck to all ladies with the cold capping. It truly made a difference for me.

    BB



  • janbrandenberger
    janbrandenberger Member Posts: 3
    edited February 2016

    BBwithBC45, Congratulations on your last chemo session! whoohoo! Cause for celebration!! I am happy that the cold caps worked well for you and appreciate you responding to my posts as a newbie. How many days did you wait after chemo to shampoo? What shampoo did you use? Did you use any type of detangler or conditioner? I am not looking the au natural look right now, but keep telling myself this is necessary to keep my hair. Did you do the vinegar rinse? If so, how often?

    Again, Congratulations!

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited February 2016

    Janbrandenberger, Thank you. :)

    I had chemo every Tuesday so I washed my hair on Friday mornings and again on Saturday evenings. My hair was extremely greasy for the first few weeks, so I really suffered with how it looked. Eventually chemo dried my hair out somewhat, so it wasn't getting as greasy so fast.

    I used Dermorganic shampoo and conditioner, but I put the conditioner at the ends only. If you search through some earlier posts you'll see that ladies used other shampoos successfully too; the important thing is that it doesn't have sulfates or parabens.

    I didn't use the vinegar after all, I always forgot to put it on the shopping list and the itchiness came and went. I even had some weeks after the final chemo.

  • Kdending
    Kdending Member Posts: 2
    edited February 2016

    Hi All--

    I've finished 4 rounds of A/C successfully (maybe 5% shedding) but have noticed the shedding to pick up once I started weekly taxol (I just finished my 4th round today of 12 rounds and have about another 10% of loss) nothing too crazy, I just feel like every time I touch my hair multiple strands come out leaving me in a constant state of panic. I'm extremely happy with my results but I have done everything to the T that PCC has suggested and this has been A LOT of work so I figure any insight I can get to have the best results is welcome.

    I'm trying to leave my hair in down or in a low pony tail but I'm finding when I don't touch it, it becomes tangled (almost like dreadlocks) underneath- when gently comb through these with my fingers little balls of tangled hair come out. Has anyone else had this issue?? Is there a shampoo or conditioner you all would recommend? I'm currently just using a 365 Whole Foods brand because I got frustrated and couldn't find a highly recommended ph-balanced, natural shampoo.

    Gerilyn, with Penguin Cold Caps told me the reasoning for my shedding right now is from AC still being in my body and that as weekly taxol continues that this should slow down. However, from what I have read on here this doesn't seem to be the case? Any insight or recommendations to slow the shedding? I'm growing leg and arm pit hair again but the head is shedding like no tomorrow, go figure... :)

  • Mypinklife
    Mypinklife Member Posts: 18
    edited February 2016

    just used pcc's for the first time today... I'm nervous the back of my head didn't get cold enough? Anyone else felt that way?

  • JCS28
    JCS28 Member Posts: 92
    edited February 2016

    Mypinklife, I felt the same way, but I don't have the answer yet! I've done two rounds with the Penguin Cold Caps. So far, so good, but I also haven't lost my body hair yet. I'm about 24 days past my first treatment, so I'm not sure what to expect. I did have a helper who'd helped other women with PCCs before and she said it wasn't as critical to be as tight on the back. She said the top and sides were more important. Hope that helps. Good luck! I'll keep checking in to see how we're all doing!

  • 33triple
    33triple Member Posts: 48
    edited February 2016

    Mypinklife, my friend who used them and introduced me to them told me that it is possible we might loose hair right above the back of the neck and on the sides and at our temples. Those are the most difficult areas to keep cold.Ā 

  • angiesgo
    angiesgo Member Posts: 16
    edited February 2016

    did you find your hair got dry during chemo, did you use anything to give it a bit more moisture, different conditioner? With washing weekly the advantage of it being dry is that's it's not so greasy but it feels not the best at the moment. I know it's a minor thing considering the scalp cooling is doing its jo

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited February 2016

    I felt that the back wasn't cold getting cold enough either but I was fine I'm 6 1/2 months PFC.Ā 

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited February 2016


    The shedding was the worst after the second round of TC. I thought for sure I was going to lose all of my hair then, but I haven't. I didn't think about my body hair until I went to shave my legs and realized it didn't need to. Now that's a positive thing to this whole experience!

    I find the whole cold capping to be absolutely miserable! I have to do it 7 hours from start to finish. It actually made my nausea worse and gave me headaches. As a result, we stay at the infusion center because the motion of the car also makes me nauseous.

    I started washing my hair with a gentle shampoo that has no sulfates or parabens, and have switched to Nioxin. My mom is also on chemo and her cancer center said to use that. I wash my hair once a week, and yes it has gotten dryer.

    I also researched Toppik to cover a balding spot on the crown where I lost the most hair. That has worked well and I don't feel as self conscious.

    Round three is this week. Two more to go!


  • Ruddycat
    Ruddycat Member Posts: 13
    edited February 2016

    Hi! I start chemo on Monday the 8th and my Penguin Cold Caps arrived this past Wednesday. My husband and I are both VERY stressed about using the caps properly - much more so than we are about the actual chemo!! I sent a long list of questions to Geralyn yesterday and I think I'll summarize them here as well just to see if anyone has any tips or tricks that would address some of our concerns. We've also had a terrible time making sure we'd have dry ice - we never imagined that in a metro area of over 1 million people that dry ice would be so hard to find! We think we've found a solution (we'll be meeting a driver at a dropoff point on Sundays before my chemo) but we've already had a problem with it. We got a call yesterday that the driver we were supposed to meet on Sunday had QUIT and we ended up having to meet another driver yesterday to get our ice - 3 days before we need it. They were kind enough to give us quite a bit extra so that hopefully we'll still have enough (after evaporation) to last us all day on Monday.

    Anyway, these were our questions to Geralyn (her answers in BOLD) . . .

    1. In looking at photos of others who've used the caps with truly thick hair (course, curly, etc.), I'm thinking mine is not really very thick at all. I have a lot of hair but it's fine - does this change the temperature we should try to achieve?

    Thin Hair - -30C (Minus Degrees Celsius)

    Medium Hair - -32C (Minus Degrees Celsius)

    Thick Hair - -33C to -34C (Minus Degrees Celsius)

    2. Will my hair protect my ears or should I try to cover them? IF IT'S THICK ENOUGH AND COVERS THEM BUT IF NOT THAN COVER YOUR EARS.

    3. What about the skin along my hairline in the back? We'll be using the gel headband there - do I need to protect the skin below? THE CAP IS ONLY ON THE HEAD NOT THE NECK. IF YOU HAVE SHORT HAIR AND THE NECK iS GETTING COLD THAN WEAR A SCARF TO COVER IT.

    4. Should I change the part in my hair for each cap change or maybe comb it so there's no part? THAT HELPS EVERY SO OFTEN IF YOUR PART IS WIDE AND IS GETTING TO COLD.

    5. I'm not sure if my husband asked you this but can you recommend a brand of Silica supplement that I can find locally? They all seem to be Hair/Skin/Nail formulas with quite a few other ingredients besides silica. YOU CAN GET SILICA AT A HEALTH FOOD STORE OR ORDER IT ONLINE. THE OTHERS ARE BETTER THAN NONE AT ALL.

    6. Would it be advisable to do a "dry run" with one of the coolers with dry ice and 4 of the boxes to ensure we're able to get them to the proper temperature after 3 hours of cooling? And how exactly do you control the temperature? If following the instructions exactly, do the caps come out of the box at a fairly standard temperature?THAT IS UP YO YOU. MOST PEOPLE DO NOT BUT SOME DO. YOUR CHOICE. THE INSTRUCTIONS ARE RELIABLE IF DONE CORRECTLY. IF THE CAPS ARE TOO COLD LET THEM THAW AT ROOM TEMPERATURE AND WARM UP. IF THEY ARE TO WARM PUT THEM BACK ON ICE. THAT IS ALL THERE IS TO IT.

    7. Based upon the size of the slabs of dry ice available to us (8" x 9"), it appears 2 slabs will fit side-by-side in the Igloo Ice Cube cooler. However, that leaves a big void on the back side of the cooler closest to the handle. Could we place slabs vertically in this space or should we use bags of pellets? EITHER IS FINE.

    8. Is there ever any concern about the thermometer not reading properly? Should we have 2 to compare? Should we take the temperature of different parts of the cap or just the middle? JUST TAKE THE TEMPERATURE OF THE CENTER OF THE CAP AFTER KNEADING IT. THERMOMETER SHOULD BE RELIABLE BUT I DON'T KNOW IF IT WOULD MALFUNCTIONING?

    9. Are we supposed to let the cap sit in the open box for 1 minute before removing? TAKE IT OUT OF THE CONTAINER AND LET IT THAW A BIT SO YOU CAN OPEN IT UP FLAT WITHOUT TEARING IT, WHEN THE CAPS GET COLD THE GEL GETSD HARD.

    10. Do we knead the cap while it's on my head just during pre-cooling or throughtout the entire process? WHEN ITS ON YOUR HAED HALF WAY THROUGH - JUST PUSH THE GEL AROUND WHEN ITS ON THE HEAD TO KEEP THE GEL CONSISTENT IN TEMPERATURE.

    11. What if we've started the pre-cooling and there's a considerable delay in starting the infusion? Should we just proceed with changing the caps every 30 minutes until the infusion begins?YES

    12. Based upon my infusion times, I'm looking at using cold caps a little over 10 hours. Is this common? Will the dry ice maintain the correct temperature of the caps for a 3rd use?YES

    So our remaining unanswered questions are as follows:

    How important is an EXACT temperature? We have 2 infared thermometers and they read about 3 degrees different - do we need a 3rd to get an accurate reading?? I have NO confidence that we can get a reading of exactly -32C!

    Is there only one correct way to use the straps or do you just do what's necessary to make it fit YOUR head? In watching the PCC video, along with others posted by past users, it appears there are dozens of different ways the straps can be used. Any ideas?

    We're also curious - can the straps be TOO tight? Is "super tight to your head all over" the goal or are you setting yourself up for frostbite if they're too tight? My husband, as we've practiced, has used all of the straps to get a really tight fit with my medium hair but now we're worried about hair loss where the cap is too cold! Where is the "happy medium"?

    Any tips about the logistics of maneuvering the caps in and out of the coolers in the proper order? Was that a problem at all? And I noticed someone posted about a concern with having the coolers in a closed infusion room - we're in a private infusion room and I don't know yet if the windows open. Would the door open to the hall be enough?

    Did anyone pack the caps into dry ice more than 3 hours in advance? I noticed several posts that said it actually took closer to 4 hours to get them to the right temperature.

    Any trouble figuring out when the 50 minute pre-cooling should start, based upon info provided by the oncology nurses?

    How did you manage and keep track of the cap changes - just by setting a timer? My husband has created a crazy T-XXXmin countdown spreadsheet like they use for rocket launches!

    And I guess that's it (as though that's not enough - lol)! As you can see, we're making ourselves crazy thinking this all has to be perfect to be effective so if anyone can put our minds at ease that the process is at least slightly forgiving of small errors - that would be great!

    Thanks so much,

    Leigh Ann














  • Mypinklife
    Mypinklife Member Posts: 18
    edited February 2016

    Can't wait to wash my hair tomorrow, 3 days after fist cold capping. Any advice on hair washing? How does everyone normally "style" their hair ?? I normally straighten mine but know that's a big no no!! Thanks!!!

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited February 2016

    MypinkLife....I wash my hair while taking a bath so I'm warm while pouring cool water on my head. I wet my head and use a little shampoo. I move my hair around slowly but don't scrub it like it used to. Rinse as normal and do the same for conditioner. I'm not sure about other people, but I've limited my shampooing to once a week. I've used a dry shampoo when my hair got bad. I used Bosley from Ulta. Good luck. It feels great to have clean hair again.

    One more thing, I let it air dry and leave it as is. I comb it carefully starting from the ends with a wide toothed comb.

  • Leslienva
    Leslienva Member Posts: 343
    edited February 2016

    My hair was really long when I was cold capping, so I would let it air dry and then use those foam rollers to give it some body and curl.

  • MB12
    MB12 Member Posts: 44
    edited February 2016

    Ruddycat - Tysm for the great info! šŸ™Œ Ihope everything goes smoothly for you!! Cut out some maxi pads and double stick them together to protect your ears, neck n forehead.

    I'm going to straighten my hair for the first capping bc it is thick and would be wavy. I'll alternate parts, too. I had a freezer donated to my cancer center by the rapunzle project.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited February 2016

    MB12,

    I'm not sure if you are considering using heat or chemically straightening your hair prior to capping, but if so, you might want to hold off. The Penguin rep advised against doing any kind of chemical processing ( coloring or straightening) for a few weeks before starting cold caps. The combination of chemo and chemical processing can be very damaging to hair. Maybe others who have more experience with this will chime in shortly. :-)

  • Ruddycat
    Ruddycat Member Posts: 13
    edited February 2016

    MB12 - I'm stocked up and ready to go with all sorts of moleskin & assorted panty liners so hopefully I'll be fully protected! Are you planning to use the gel headbands? We waffle between being afraid we won't have enough coverage & worrying about TOO MUCHcoverage (or being too tight) and getting frostbite!

    Can you tell me how far in advance you can put your caps in the freezer from Rapunzel? My infusion center is considering it but since my chemo's on Monday, I'm not sure when we could put them in. How does that work?

  • MB12
    MB12 Member Posts: 44
    edited February 2016

    Ruddycat - I'm not sure what the gel headbands are. I just got back in town and start fertility then chemo on the 23rd. Watched 2 videos but have to order penguin caps still and having a meeting on the 21st w my helpers to all go through a trial run. Needless to say, I'll learn everything by next week.

    My doctor ordered the freezer as it is donated from the site and must be ordered through the cancer clinic. We are making a donation to speed up process.I'm not sure how long you can put the caps in. They are stored in there and hold enough for 2 patients daily. Start w dry ice tomorrow and try to get the freezer n caps in before the 2nd round.

    Lmk how it goes and I'll be back online tomorrow as my docs are waiting for all of my supplement info and some links from here.

    Good luck!!! šŸ™šŸ™Œ

  • MB12
    MB12 Member Posts: 44
    edited February 2016

    Ruddycat


    http://www.rapunzelproject.org/coldcaps.aspx


    They donate freezers to cancer clinics and have great info on the site.

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