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Cold Caps Users Past and Present, to Save Hair

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  • Drim
    Drim Member Posts: 134
    edited May 2010
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    Kelli and Bride: Thanks for your help. Good idea to get extra ice to account for the loss if I decide to go with the night before.  If I go with the day of, the pellets sounds like a good idea. Kelli - 5 hours after!! WOW! You must have really thick hair! I still haven't heard from Frank to hear how long after I need to wear them but I'm thinking 2-3 hours as my hair is not very thick at all.

    geewhiz: that's great to hear that you stepped out of the box a little and your hair survived after 6 TCH! Hopefully that will give all of us newbees a little comfort knowing we don't have to be perfect. It's sure making me feel a little better.

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010
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    geewhiz - Thanks for the info.  I will try to be good, but it's good to know if I slip up, all is not lost!   

    DRIM - looks like we've been on the same schedule since diagnosis.  Glad to be going through chemo and caps with you!  Here's hoping we both make it through with few SEs and lots of hair :)

  • sebm9
    sebm9 Member Posts: 488
    edited May 2010
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    Hi Drim,

    I had a 14-cap treatment (but used 16 on my first because it runs extra long usually; we recycled our first two caps and they were plenty frozen many hours later when they were also the final two caps used). We used three coolers because we kept them in the plastic containers, not bags. My husband picked up 100 lbs of dry ice pellets the night before my first treatment (Airgas in Richmond CA is open 24 hours but not on Fridays); he picked them up at about 10 p.m., spent about an hour and a half arranging everything. We left the coolers in the car with the windows cracked open so the carbon dioxide gas didn't build up in the car.

    Caps stayed plenty cold throughout the treatment -- in fact, there were variables as to those that were on the bottom of the cooler vs. the top -- my husband had some thoughts on how to rearrange it for more consistency. We had no problem with the caps being too warm, but one instance where a cap was so cold we couldn't warm it up in time and had to break out a second cap, thaw it, and swap it out. Much dry ice lasted through the next night.

    When we checked in to the cancer center, at first folks thought the three coolers were our food for the day! :-) Next time I *am* going to take more food for my husband; he worked like a dog throughout -- getting caps ready, checking temps, swapping coolers as needed, numbering the caps in order of being used etc. -- and was more tired than me.

    I'm glad staff warned us our first treatment would be longer -- meeting with the doctor, nurses, pharmacist, etc -- and premeds and Taxotere and Cytoxan were each administered slow-drop at first in case of any reaction, then turned on full. My next treatment is next Monday and I hope it'll be a good hour or more shorter.

    I kept the caps on for 4 hours after treatment. We did a cap swap right before getting into the car for home, then dashed home and did another cap swap and for the next 3.5 hours.

    My third treatment is Tuesday, June 1 but we can't get dry ice on memorial day, so have decided to get it on Sunday May 30, then refresh it on Tuesday morning (we think the caps will stay very frozen til Tuesday morning treatment, but the treatment is too early to start with unfrozen caps from the start).

    We also practiced practiced practiced with the caps for 2 nights in advance, and that helped us  in doing the cap swaps quickly.

    Good luck, you'll do great! 

    Susan 

  • shadow2356
    shadow2356 Member Posts: 93
    edited May 2010
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    Hi Drim-

    If you put the caps in the zip lock bags you can get away with one cooler. I bought the 5 day max cooler. I will bring you mine when I bring you the caps. You can use that so you don't have to buy one. I also have a thermometer if you want it but it is a probe type, not the laser. You can certainly have that too. You also will need gloves. You can have mine but there is a small tear in them. Not sure how we got that but it is there. I haven't heard from anyone at cold caps yet. Have you? I did it with about 70 pounds of dry ice and it lasted overnight with almost no loss in the max cooler.

    Talk to you soon

  • joansf
    joansf Member Posts: 55
    edited May 2010
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    I'm glad Geewhiz stepped out of the closet on hair care.  I did the same--I had my hair highlighted the day before my first chemo and I had the base color touched up after 9 weeks or so.   at first, I used the recommended shampoos and washed my hair very gently in the kitchen sink.  Over time, I got bolder, shampooing with Pantene in the shower, using a blow dryer on low once my hair had air dryed a bit, and using a flat iron.  But I think we all need to stick to a ritual we're confident with.  I just hope the word keeps getting out there....!!!

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    sebm9: Thanks so much for all of your advice! Sounds like your husband is a great guy! Good luck with treatment #2. Please keep us posted on your progress!

    Drim

  • gmp300
    gmp300 Member Posts: 196
    edited May 2010
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    Hello Cold Cap Users,

         I just wanted to respond to geewhiz "stepping out of the closet".  I think it's great that you were able to treat your hair as you normally do and style, color, condition etc. while going thru chemo and using the cold caps and were able to keep your hair.  I colored and highlighted my hair 2 weeks before my chemo and I was ok too.  But the rest of the time I followed the guidlines.  So it is good to know that it is possible to do these things and keep your hair!

         Here's the but!! LOL!!  Mr. Fronda has told me ("and believe me I ask many questions!")  That what is good for one patient may be poison to another.  Alot depends on their age, health, their resistance to the chemo, their liver function, if they drank enough water and also the drug regiman that they are on and the dose, if they have a reaction, if they get sick etc. all of this combined with all of these things that we can do and put onto our hair can affect the results of keeping our hair.  Like everything else, everyone is different and different products create different reactions.  We are pioneers here in America but Mr. Fronda has been working with women all over the world for 20 years and he should know best what can happen to some.

         So to each there own!  It's your hair and you can play it safe or try doing a few things but whatever you do I would do it slowly and a little at a time to see what happens.  I just figure that what we have to go thru plus the cost-why take a chance, that would defeat the whole purpose if we try something and end up loosing our hair.  I'd rather have a bad hair day than a no hair day!!  Just call me chicken little!!  LOL!!  Probably because I know someone who had chemo and she DIDN'T use the cold caps.  She thinned and had bald spots.  She waited 7 months after her chemo to highlight her hair for her daughters wedding, thinking she was safe.  When they took the foil off- her hair came out with it!!  That scared me and showed me how much damage chemo can do to your hair follicles.  Just thought I'd share!

    Geralyn (gmp300)

  • joansf
    joansf Member Posts: 55
    edited May 2010
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    Geralyn--What a shame, and a very good cautionary tale.  You make very good points.

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010
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    Hi All, Had my first treatment and used the cold caps yesterday.  My head was definitely froze, so hee's hoping for good results! 

    Drim- here's a few tips I learned the hard way: 1) the chin straps are cold!  they don't have gel in them, but they are cold.  After the first cap, you don't feel it so much on your head as that gets frozen, but you feel it under the chin each time you change the caps. Next time, I am bringing a face cloth to put under the chin strap.  2) gmp300 had left an extra chin strap for me to use, so I doubled up under the chin. It seemed to help but made drinking, eating, etc hard.  Wish I'd had a straw!  3) The caps are heavy.  My chair didn't fully recline so I got a bit of a crick in my neck. Next time, I'll bring a little pilow for some extra neck support. 4)  I am always cold anyway.  gmp300 told me to bring a blanket and I am glad she did.  Definitely needed it! 5) your hair is a mess at the end of the day from the caps (at least mine was). Wish I'd had a baseball hat to wear home.  Probably scared a few people on the way out of the hospital!  Good luck on Monday. Honestly, the caps were more of a pain than the chemo, but worth it to save my hair!

     The hospital where I am having my treatment did a study on the caps and they have a freezer and the caps available there, so it's easy for me (no coolers, etc). One of the nurses told me that they had a good success rate with the caps and 4xTC, so I am hopeful!

     By the way, I know I am not supposed to wash my hair for 48 hours after treatment, but what about just wetting it down and rinsing it in the shower? It's pretty gross from all the cap changes yesterday.  At one point while she was changing a cap for me, my sister said I had ice in my hair!

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    GolferGirl! So nice to hear from you. I was definitely thinking about you and wondering how you made out with everything. I got me caps from Shadow today (she actually drove them to my house). My two helpers (mom and BIL) came over as well and we did some trial runs. This is definitely going to be interesting but definitely well worth it. We will be doing the cooler stuff but it should not be too much of a problem. I think we've got that figured out. The place by me opens at 6am and they sell the pellets. I had to laugh because all I did were trial runs so I didn't have them on very long and my neck was already hurting and I could tell that the chin strap was cold. I was thinking mole skin there but maybe a facecloth is a good idea too. My hair was messy after a few cap changes so I can't imagine what it will be like at the end of a whole day of cap changes. I plan on leaving the chemo place with the cap on. I will try to cover it some how (hoody) but probably I will get stares if anyone should see me coming home.

    I'm glad you asked because I was wondering if it was okay to wet your hair in between washings. I imagine it would be fine. I think the problem would just be products on your scalp but I'm not sure.

    I will be starting on Tuesday so I'll take the next couple of days to prepare everything I need.

    I wish you very little SE's and I'll of course let you know how treatment #1 goes.

    Drim

  • mtri111
    mtri111 Member Posts: 67
    edited May 2010
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    Girls:

     1. get an ELECTRIC blanket for use during your treatments. This is a GODSEND. Use it from the first cap and it will counteract the send se of hypothermia. You can wrap it around yourself from shoulders down.

    2. Use the moleskin patch, cut to your forehead size, and make two  additional ones as "sideburns". This will protect your skin in those areas, and stave off pain and cold headache. You can add a watch of gauze underneath those as well.

    3. For the chinstrap issue: Get some old fashioned chamois cloth (the suede, soft stuff) and cut a piece into a strip.  The strip can go  under the strap and this will protect your fro the sharpness of the strap . Also the strap needn't be THAT tight, as long as the cap and the elastic velcro-bands are secure (especially in the vulnerable areas of th nnape and the temples).

     4. Get pantiliners, and cut pieces to stick on over your ears.  They will last the duration of a session, and insulate your ears comfortably.

     5. For leaving the hopsital with  a cap on, I got one of the knit scars/hoods.  Kind of stealth look!

      I am 2 months since last treatment, and yup, despite thinning, the cold caps do work.

  • sebm9
    sebm9 Member Posts: 488
    edited May 2010
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    Hi GolferGirl,

    Great that your first treatment went so well! I was glad to read your post, as tomorrow is my #2 treatment (4TC @ 3 weeks) and I was gathering my equipment, from laser thermometer to pantiliners :-) You reminded me that I wanted to do something a little more comfortable for the chin strap.

    I am at Day 21 and have not shed a bit up top! Down under is a different story, and dang if there's still that big old hair on my big toe -- I left it there just to see when it would fall out but so far no luck! I do expect to thin at the nape of the neck but no signs so far. I can't wait to go in for treatment tomorrow with a full head of hair -- at least one of the nurses is going to be stunned. Mostly, I can't wait to say, at the end of treatment tomorrow, "I'm halfway done!" 

    For wetting the hair, I am a swimmer and swam on Day #2 (and most every day since then). I wet my hair *in COLD water* before putting my swim cap on, and rinse gently but thoroughly with cold water after my swim (and between hair washings). I also use only a wide-tooth "pick" type comb. My pool uses ozone rather than chlorine, which greatly helps my hair from drying. 

    So, I've had no problems wetting the hair (cold water) and drying and combing gently gently gently. I have below-shoulder, thick curly hair, it takes a long time to untangle in this way. I sleep wearing a satin hair bonnet, keeps my hair from pulling as I sleep.

    Btw, I noticed that liver function kept coming up as one of the signs as to how well the caps might work; my nutritionist suggested milk thistle, which I take twice/day.

    Cheers (and Happy Mother's Day to the moms on the list),

    Susan 

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010
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    mtri111 and sebm9 - thanks for the info!  Definitely need to work on some of the technique before seesion 2.  So glad to hear you both have had success with the caps!

    sebm9- There's a Whole Foods close by so I'll have to go look for the milk thistle. Congrats on being halfway done!   I have been gently rinsing my hair in the shower, getting the water as cold as I can stand it. Seems ok so far, but I am only on Day 3.  I decided to wait until tomorrow to wash it as I hope to go into the office for a bit tomorrow, so want fresh hair for that.  Did you have any sore spots after the first treatment?  My part feels a little sore.  Wonder if I got it too cold or not cold enough?  Your big toe hair made me laugh; I have a little whisker on my chin I can't wait to lose!

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    Yes mtri111 and sebm9, thanks so much for all the tips.

    Golfergirl - I looked up milk thistle and it says it has antioxidant effects and may enhance the effects of estrogen. I know the doctors don't like you to take antioxidants during chemo and for ER+ enhancing estrogen is not good so I would check with the doctor first. Just curious, do you have a helper with the cold caps or do the nurses do that for you in the center?

  • Ang7
    Ang7 Member Posts: 568
    edited May 2010
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    GolferGirl -

    I finished my chemo in March and where I part my hair is still sore.  It is a strange feeling but I have never lost any hair from there so I don't know why that happens...

    Good thoughts for all of you Cold Cap Ladies!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010
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    Drim- the nurses don't help with the caps, but I'm lucky because one of my sisters is a nurse and she's my chemo/cap buddy.  The nurses at the center are friendly and have told me stories about other cold cap users there, but they also made it a point to let me know they are not there to deal with the caps.  That's fine, my sister seems to have it down and it was nice to spend the day with her.   I'll defnitely check with my onc before taking any milk thistle.  It's surprising how many things act like estrogen!  Good luck tomorrow; I'll be sending lots of positive thoughts your way! 

    Ang7- thanks for letting me know about the part.  I've been worried about that but am feeling better after seeing your post.

  • sebm9
    sebm9 Member Posts: 488
    edited May 2010
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    Hi everyone, Got home about an hour ago and am presently doing two hours' more caps (4 hours total post-infusion). I'm halfway done with treatment, yahoo! I didn't see my same team members at first, but when my bloodwork was drawn and IV inserted, the nurse asked me if I was the cap lady. The staff gave us a single room, which was fantastic, and my nurse was the person who inserted my IV last time and she remembered me. Two of the nurses, including my treatment nurse from Chemo #1, were so surprised to see me with my hair! There was a bit of a parade through the room, watching the cap swaps, admiring my husband's non-stop work -- getting the next cap out, checking temps, kneading the cap. I printed some PCC info so I could hand it to folks. It was a completely different vibe this time. I hope my hair stands up to Treatment #2.

    I did check the milk thistle with my doc -- they've got me trained to check everything! -- and she ok'd it. Of course, everybody's case is different and I always recommend checking. 

    First time I had some soreness near the soft spot on the crown of my head, but no burn. I was sure I was going to lose hair there, but didn't. I had no soreness (so far) today. I was convinced the caps weren't cold enough this morning (the temp was fine!) but I think I was better prepared for the frosty experience ;-) I didn't have any lingering soreness at my part.

    When I tell nurses about cold caps, many of the older nurses seem to have had experiences about 20 years ago and then describe people sitting with ice packs on their head, and how it didn't work well. When they see the PCCs, they are fascinated by the design, construction, timing, and how organized and precise the regimen is. 

    Sorry for typos, I've also had my hands and toes in wine cooler sleeves today, to help nails and prevent neuropathy. 

    Cheers, all!

    Susan 

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    Hi everyone! I'm on day 2 of my first of 4 TC treatments. I definitely have to say I hardly noticed what was going on with the meds since the cold caps really keep you busy the whole time (not to mention sticking fingers and toes in frozen peas :-))

    My center was very supportive and excited about the cold caps. They gave us a room in the corner so we had plenty of space to work with. I actually had 2 helpers - my mom and BIL. They were both really great. My BIL left his house at 4:30am to drive up the cold caps, pick up the ice and arrange the cooler. This would not be possible without him. My mom also came from over an hour away and brought us all food to eat for the day.

    There was a little bit of a parade in my room too as the docs and nurses were curious to see the cold cap changes. They will also be taking pictures of me throughout the process so they can document my hair situation. I should probably be doing the same thing.

    My head feels fine today. Just a little piece of the top of one of my ears is a little sore (I did use the panti liners and they did stay on all day. Guess one of the caps was a little too cold. Of course I'm so anxious and nervous to see how this is going to work out. I know it didn't go perfectly but hopefully good enough.

    I am happy to report that I'm feeling fine at the beginning of day 2. Going for neulasta soon so hopefully I will continue to feel well.

    Congrats sebm9 for being half way through!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010
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    So I am wondering, has anybody used any product during treatment?  I've been good about not washing my hair, but would love to use a little gel on the ends or hairspray to help tame it a bit since I can't blow dry or style.   Anyone have some advice on that? 

    I'm day 5 from my first treatement and so far so good.  Then again, the whisker I keep hoping to lose on my chin is still around, too, so I guess I'm not yet to the hair loss stage.  Here's hoping its only the whisker (and other unwanted hair) that goes! 

  • shadow2356
    shadow2356 Member Posts: 93
    edited May 2010
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    Wow, its great to see so many people are using the caps. I had great success with them. I just wanted to tell the current users that I had head soreness after each treatment. Each time I had it I was worried that the hair was going. Posts on hair loss said you had a tingling or sore feeling before it came out. I had feelings like that but no real loss. I think the cold and the weight might have caused it. It was a little uncomfortable but really no big deal. Just so you know, it does not mean you are losing your hair.

    Good luck everyone!!!

  • gmp300
    gmp300 Member Posts: 196
    edited May 2010
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    Hi everyone,

         Just wanted to remind you's if you didn't already know that if the cap is on tight enough (check by loosening the chin straps and lean your head forward-if the cap doesn't move it is tight enought!) Then you can loosen that chin strap and it's not that bad.  So tight at first-check that caps on tight and then loosen it! 

    Good Luck,  Geralyn  (gmp300)

  • Ang7
    Ang7 Member Posts: 568
    edited May 2010
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    Hey Geralyn -

    Thanks for the brochures about Cold Caps.  I gave them to my oncologist...

  • cs718
    cs718 Member Posts: 34
    edited May 2010
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    Hi Drim; I recently finished the same regime with very good results, hair-and otherwise.  If you find you have a backache a day or two after the Neulasta injection take some Advil as soon as you start having an ache and the Advil will take care of it.  I waited way too long the first time and had a bad two days but it was never a problem after the onco nurse advised me to start taking it as soon as I felt an ache.  Good luck.

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    Thanks so much cs718. So far I'm feeling pretty good. Getting a little tired now. I guess the steriods are out of my system and I'm starting to crash. I'm so happy that you had good hair results!! I'm totally stressing the hair more than anything else. I guess it's normal to worry. I'm sure everyone gets anxious waiting for the results but it seems so many had good results so I should not worry so much!
  • cs718
    cs718 Member Posts: 34
    edited May 2010
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    Hi Golfer Girl

    I used a little of the "shine" or Frizz Ease type products - anything with simethecone; it's very good to your hair; it moisturizes it and lightly greases it up a little which you need since the cold caps are really drying. hair spray has alcohol and is very drying so i'd use that very sparingly if at all.  Lots of good luck.

    Claudia

  • cs718
    cs718 Member Posts: 34
    edited May 2010
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    Drim; do not stress. you are going to keep your hair; it's going to thin but you'll fool around with it and no one will know. trust me, trust Frank.  I stressed too until the very end; I kept waiting for it all to go and it will not.  I finished my 4 rounds of TC on March 25; i still lose a bit of hair but it grew as usual straight throughout my chemo - i could tell by the length of my gray roots as they came in.  You will do fine, I worked throughout chemo and commuted an hour each way to work. i took off one day a week - the week after treatment on Thursdays and one day in the middle of the following week.  I found I was really fine to go to work the day after treatment, once i got through the stress of the first one.  Your team will get you through great, just like mine did.  then you'll be amazed at how you pulled it off and how wonderful your friends are.  claudia

  • cs718
    cs718 Member Posts: 34
    edited May 2010
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    Ang 7;

    Great to see a picture of you and your darling girl.  Congratulations!  Claudia

  • Drim
    Drim Member Posts: 134
    edited May 2010
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    Question for all of you - I know some have suggested to wear the caps in between treatments right out of the freezer. How often are you supposed to do that? And we should keep them on about an hour or so (20 min each)?

    Thanks! 

  • Ang7
    Ang7 Member Posts: 568
    edited May 2010
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    Thanks Claudia!

    I know this area is for the Cold Caps but I wanted to vent as I was supposed to have surgery this week on my abdomen hernia from DIEP but they said my blood count was too low and it would be dangerous.  They put me on iron and we will try again in 3 weeks.  Has anyone else had trouble with blood count levels after chemo?  Try getting 4 kids schedules all set up and then they cancel the surgery...I know, better to be safe than sorry.

  • shadow2356
    shadow2356 Member Posts: 93
    edited May 2010
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    Hi Ang-

    Yes, my counts are still not too great. I know we finished chemo about the same time. My onc said it may take months to get to normal and about 6 months for the counts to get where they were before I started chemo. I do feel better everyday but the numbers are really not showing that. I am hoping to have surgery in June. I am having a DIEP revision to the side the DIEP worked on and an expander/implant exchange on the other sude. I need to go for the bloodwork soon and I am boosting with iron and B vits to make sure I pass.

    The chemo really hits the body hard. I am happy to say I have a great head of hair and my eyebrows are finally growing in.