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Cold Caps Users Past and Present, to Save Hair

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Comments

  • melibt
    melibt Member Posts: 10
    edited February 2013

    Rhonda2- Thank you for the encouragement. I will definitely go back and read. Of course, now that I've had some time with my hair this morning, it doesn't look too bad. Definitely a far cry from no hair, which is where I would be for sure.

    Hortense- Thank you too. I am on day 20, so at least I am right on schedule! The gelbands sound like a great idea. I will call MSC today and try to have one or two sent overnight. I always thought my head was freakishly small--maybe its freakishly too long...

    Another question for you all. One of the women that helped me the first round had me put on one of those thin paper surgical caps under the cold cap to prevent my hair from catching in the velcro. I have been wondering if that somehow has effected the temp of my scalp. I am curious how everyone else has dealt/been dealing with the velcro on the cap...

  • Shasha10
    Shasha10 Member Posts: 212
    edited February 2013

    Just spoke to the social worker and nurse practitioner at the center today and they explained that they offer Integrative medicine as well. So I will be entitled to acupuncture, yoga ,nutrition counseling  as well. They didn't know anything about the cold caps and I explained that was very important to me. I just emailed them the links. Tomorrow I meet with the onoc. and will know the time frame. I have to get the shampoo and get myself ready. Today is a bit better. I'm really into making healthy shakes with my nutribullet. Tomorrow I'm returning to work.

    Once, I know the time frame, I'm off for 3-4 days to visit my Mom by the ocean. I'm not religious, but always enjoyed walking on the ocean and talking to my (deceased)father . Crazy, but that's how I work out my life's troubles. I find the ocean so therapeutic. I'm not sure that I'll swim. Have to find out from my surgeon. I'm not going to tell my mom. I just hope I don't start crying. My husband is not joining me, since he knows he may have to take off again later.

    Last year, I had an amazing year with 5 family weddings & my 60th b'day, that we took a great family trip. I realized today that it's good that I didn't find the BC till now.. It was such a great year.I have a lot to be thankful for.

    Everyone you are really great.. thank you and best to all

  • mdg
    mdg Member Posts: 1,468
    edited February 2013

    As far as the velcro on the caps....I put my hair in a very low and loose ponytail while wearing the caps. When we went to take the cap off, my DH would undo the velcro straps and then I would bend forward and l hold the cap close to my head (with my head down towards my lap) while my helpers slowly took it away and made sure hair was out of velcro.  I hope that helps. 

  • ndmk
    ndmk Member Posts: 27
    edited February 2013

    Hi All...I thought I would add in my experience with shedding.  After the initial shed (day 16-17), I barely shed throughout sessions 2 & 3 and then the shedding came back with a vengeance in between 3 &4.  I am about a week away from session #5 and the shedding is still heavy.  I'm assuming about 100+ hairs per day...and that's just the ones I collect. I'm sure there's more dropping everythwhere thoughout the day.  It is so stressful but I try to remind myself that it's far better than the alternative.  As of current, I have about half of my eyebrows left and about a little less than 2/3rds of my eyelashes.  I think I will end up losing all of it.

    Has anyone experienced this type of heavy shedding? 100+ hairs a day? Perhaps I need to wear the caps out of the freezer in between treatments more.

  • mdg
    mdg Member Posts: 1,468
    edited February 2013

    I had heavy shedding PFC.....I still had hair!  I felt worried like you but it all worked out.  Hang in there!!!  :)

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    I am just a few days past tx2 and am shedding a lot, but keeping it in perspective.  Many patients would have lost all of their hair at this point and at an average head of 100,000 hairs we'd have to literally be pulling them out in clumps.  I hope it slows down at some point, but I do try to look in the mirror and focus on what is still on my head which to the average observer would look normal, and not on how many I am pulling off my shoulder during the day.  A couple of posters on the board said they collected gallon size ziplocs with lost hair and they were still succesful in the end...I'm nowhere near the gallon bag, yet so that helps too.  Yes it is scary to pull one loose strand and have several 'friends' come out along with it, but I just toss it in the trash and move on.  

    I have to say what has helped me the most in releasing the panic was that I started reading this thread from page 1...I'm up to about page 110 now...and seeing every one on the board go through the same pattern of enthusiasm followed by the dreaded shred, panic, losing hope, getting encouragement from the others and then finally coming out on the 'other side' a success and then encouraging the others who followed...it reads like a good book and I can't wait to get to the next pages to see how things turn out for the ladies...I can tell you so far, they all have a happy ending!  

    So the shedding will come (and hopefully go) and in the end, we'll have more hair than we would have otherwise and will be talking others off the ledge befoer we know it.  Keep the faith!

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    Melibt, regarding the velcro, I just have my helpers release the cap and then hold just a bit off my head so I can slip my hands in and they help me gently guide the hair out.  I don't think it's advised to wear anything between the head and cap unless your hair is so thin you can easily see the scalp...then you could use a very thin wig cap, but I was trained to ensure the cap is right on the hair...not even to cover the ears if the hair can lay over them.  You may want to check with makingway...she is a consultant for the caps and has been great when I've had specific questions on protocol.  Glad you felt better once you saw your hair today after the washing - washing day is my most dreaded of the week!

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    One more thing...are you taking Silica? PCC recommends taking 225 mg 3x a day. I am also taking 5,000 mg biotin and 30 mg zinc to promote growth of the new hair...and trying to get enough protein.

  • schoolmom
    schoolmom Member Posts: 327
    edited February 2013

    I finished chemo on 1/7/13.  To keep my hair from catching on the velcro I had my helpers loosely attach the velcro straps before putting on my head and then starting with the front, tighten the velcro straps and then move to the back flaps until it was tight.  With this process, my hair never got near the velcro because it was already attached to the cap before they put it on my head.

    My pic is after chemo is over.....thinned alot especially at nape of neck and behind ears.....but I have lots of hair. 

    Hang in there newbies!

  • melibt
    melibt Member Posts: 10
    edited February 2013

    hope49, my MO has been somewhat stingy with permission to use supplements. She did ok the silica, but I have had trouble finding capsules with more than 5mg. A far cry from the 500mg Frank mentions in his literature. I thought maybe it was a typographical error on Frank's part. And have just been taking the 5mg--probably not enough to help... I just tried to order 500mg capsules from the Vitamin Shoppe and noticed a warning on a checkout page that they have an ingredient that's known to cause cancer! Huh?!  Where have you been able find the 225mg?  I will try the caps on Wednesday without the surgical cap. I do worry--now that I am banned from using my flatiron (sigh) or any kind of styling lotion-- that my curly/frizzy hair is just begging to ensnared in the velcro. But I will be brave. I will contact makingway to get her thoughts as well.

  • Shasha10
    Shasha10 Member Posts: 212
    edited February 2013

    Has anyone heard of Chia seeds to promote hair growth??

  • Amrdbit
    Amrdbit Member Posts: 41
    edited February 2013

    Shasha, I love chia seeds and they are a staple in my house. Even my husband and teenaged boys love them. I've never heard of a connection with them and hair growth.... however, I'm going to research this now. I'll see if I can find anything. Deb

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    Hi Meli...the brand I found us called Body Essentials Silica caps...has224 mg per 2 capsules, I take them 3x a day. I also found the dosages confusing when shopping...some were liquid, too. Frank said to get the purest I could find so the sales person helped me look thru ingredients and this one looked best. I bought at a small health store but have since ordered on drugstore.com Hope this helps, maybe others will weigh in, too.

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    I second what hope said about reading this entire thread. it took me about 3 weeks to get through the whole thing, reading at home and stealing time at work (!) but it was so helpful and inspiring!



    I'm about 7-1/2 weeks PFC, and (lucky me) had almost no shedding throughout chemo or since. I just had my first color using Clairol Beautiful Collection as recommended by others here - it didn't cover the gray all that well, but definitely better than it was. And had my first cut too - my hair looks great and I look normal! My stylist couldn't believe how healthy and full my hair is. So grateful that I learned about cold caps in time, especially when reading the September chemo thread and the tiny bits of hair just sprouting for those women - that would be me without cold caps.

  • Hortense
    Hortense Member Posts: 718
    edited February 2013

    My wonderful and experienced cold caps helper did exactly as schoolmom described and I had no velcro problems. I highly recommend this method:

    Schoolmom - "To keep my hair from catching on the velcro I had my helpers loosely attach the velcro straps before putting on my head and then starting with the front, tighten the velcro straps and then move to the back flaps until it was tight.  With this process, my hair never got near the velcro because it was already attached to the cap before they put it on my head."

    I also read from the beginning of this thread when I was thinking about using cold caps.  I had never heard about anyone saving their hair and was intrigued, though not entirely convinced. I finally decided to give it a try figuring I had nothing to lose but my hair and the first months rental fee, so I went ahead and ordered them in a leap of faith - and hope.

    I, too, wondered if the caps were working at first, especially when I was shedding heavily and losing 100-200 hairs a day. I kept going back to reread parts of the thread and I'd sometimes post questions when I felt nervous. Thank you to all of you generous women who posted your experiences for me to read, and to those who answered my questions!

    Cold Caps do work. I still have my hair, inspite of shedding during chemo and again after it for 16 annoying weeks. Yesterday, six and a half months past my last chemo, I went to have my hair properly trimmed, lightened and highlighted - I'd had it glazed at five months to slightly even out the root colors. I cannot believe the difference in how it looks now - no more roots! I'm blonde again!

    But more than that, I am so happy and grateful to have kept my hair. I look like me, rather than like a cancer patient. That has been the BEST medicine ever!

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    Pat, that's so great to hear you have not had much shedding...I know it's an individual thing, but do you have any tips for the rest of us?  What was your routine/products? Always looking for an edge to keep every last little hair! Laughing

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Hope, I think my lack of shedding was just luck in my MO's chemo recommendation.   I had 12 weekly taxol treatments, and I think the weekly dose was less of a shock to the hair follicles than the larger tri-weekly doses of chemo that most of you are getting.  Despite that, my MO assured me I would lose my hair - HA!  I worried because I had 12 chances for "user error" with the cold caps, instead of 4 or 6, but everything turned out just fine.  I washed my hair twice a week in the shower with lukewarm water and low flow, used only a very wide-tooth comb and let it air dry.  My facility has a freezer, and I did not take any caps home with me to use in between.  Nothing special - just luck.

  • Laura5
    Laura5 Member Posts: 419
    edited February 2013

    PatinMN,  Having to get it right 12 times... wow, kudos to you!

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Laura5 - kudos to my wonderful friends who helped me!  I didn't do much but sit there...

  • Shasha10
    Shasha10 Member Posts: 212
    edited February 2013

    Ok Just met with the Oncologist. They are not set up to receive the freezer. (to much room, voltage ect.)I will be doing TCH starting in 2 weeks. I have to call and see if I can do the dry ice. Meanwhile more tests cardio, and I'm anemic so I have to get my iron up. Told the Dr. going to Fla to visit my mom for 4 days and just walk on the ocean. I need to escape before all this starts. I know I can go to NYC to Cornell ,but then I won"t have anyone to help me there. It's getting a bit to compicated.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited February 2013

    Shasha, 

    Have fun in Florida! It's a great thing to do before you start!! By the time I get to Key West in March, I'll be 1/2 way through treaments, and I'll be doing much the same...Walking the beach. Something very theraputic in that, plus KW is one of my most fav places. As soon as I get there, my whole body decompresses. :)

    The dry ice isn't that big a deal. I do wish my center had the freezers, but.... rolling in with two big coolers filled with dry ice hasn't been an issue. Good luck with all of the upcoming tests! Deb

  • ecarol
    ecarol Member Posts: 15
    edited February 2013

    Hello all!

    Been awhile since I posted here - have had many tests, consultations, appts, more tests, changed doctors. Happy to say I am being treated at UCSF now and they have freezers! In the Infusion Center there are 2, and downstairs one more in a lounge where you can go after the infusion to hang out until you are done with your caps. It's great support. 

    My first chemo was on Jan 22 ( T/C X 4 ) - one down, 3 more to go. My next one is next week.  Got through the first time - ok until Day 3 - then yes it was like getting hit by a truck - but only lasted a few days. I wonder if some of it was due to the daily Neupogen shots ( 5) . They seemed to make me ache the most. Some nausea and constipation - no vomiting. 

    Today is Day 15 and I still have all my hair! Not even shedding. I had a great Caps team with me at chemo: incredible friends who were trained by a supportive friend and neighbor who had used Caps too and kept her hair. I was given Vicodin about 15 minutes before first cap and that helped a lot with the cold. Didn't seem too bad. I dressed warmly, it went fast as the helpers were very busy and I was too - a good distraction to what was actually happening. But I was worried because the Caps never seemed to measure cold enough ( I am supposed to have them at -32 C and they averaged around -25 to -30.) Anyone have thoughts on this?

    I've only washed my hair once since first chemo ( yes, once in 15 days. But I have very dry, curly hair, long, thick) I used tepid water in a very low flow shower, just patted on shampoo and washed very gently. Pat-dried, air-dried. Used Acure shampoo and conditioner - all natural, sulfate free, paraben free, etc. Weird to not be able to blow dry my hair straight as I usually do but it doesn't look so bad curly.  The hardest thing will be living with the gray for awhile that's already growing in at the roots.  But no complaints - I'd rather be gray than bald! 

    Of course, the final result is still yet to be determined... fingers crossed.

    I want to thank all the VERY WONDERFUL help and support I found here on this amazing Forum back in December when I first diagnosed and quite a wreck.  You've provided so much great information, many great recommendations, referrals, help, support, concern. So grateful for you all. 

    I will keep posted on my progress and if I can figure out how to post pics, I will. 

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Ecarol, it's good to hear things are going well for you. Regarding the caps temps, I had some problems too with caps from the freezer that were too warm. One treatment day we rejected 14 caps! There were a couple of times that we ended up using some caps that were in the -20s because we were running out of caps. I had 12 weekly treatments, and 4 of those times someone used the caps the previous day. Here's what we think the problems were:

    1) caps used the previous day were not cold enough. We had to find the ones that hadn't been used recently.

    2) the freezer had defrosted just before we arrived, or started defrosting while we were there. Nothing we could do on the day, but my wonderful local cold cap rep told us how to reset the defrost time when we finished for the day, so it would hopefully hold for the next week's treatment.

    3) the freezer temp was just set too warm for some reason. Optimum freezer setting was -42 to get caps in the -32 or better range. Do your freezers have temp indicators on the outside?



    Despite the temp issues we had on several occasions, I had great success with the cold caps!

  • Laura5
    Laura5 Member Posts: 419
    edited February 2013

    Shasha, I know it feels very complicated right now, but once you get your ducks in a row, it will be fine. I really had to work on my center to get them to accept a freezer. I was prepared to go to another facility that would accept one. They are not that big and can be either 115 or 220 volts.  The freezer Penguin sent me was:

    42" wide 24" deep 35" high and I could order either 115 or 220 volts.

    Chemo is big bucks, even bigger bucks since you will be getting Herceptin for 12 months. While there is nothing wrong with using dry ice, using a freezer is much handier.  You might want to talk to your center again.

  • Rhonda2
    Rhonda2 Member Posts: 99
    edited February 2013

    Hi,



    I can't remember if I can have caffeine while using the cold caps. Anyone know the answer?

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Rhonda - I don't think there's any problem with caffeine and cold caps.

  • hope49
    hope49 Member Posts: 239
    edited February 2013

    Shasha...don't give up if this is something you want to do...even if you have to do the dry ice, it's manageable once you get into a routine.  I was trying to pull it all together about 2 days before my first treatment and all went well...actually probably a good diversion in such a situation...'  I will agree it can be a lot of work, but once  you get your team trained, you can just relax and let them do the work...and they are usually grateful to have the work and feel they are really helping you

    ecarol - re warm caps, the temp is important...the other thing I recall reading from those who used freezers is to be sure not to put back the used caps until you are finished because they are warmed up and reduce the temp of the freezers and other caps

    Rhonda - what Frank says about caffiene is to avoid it as it puts extra work on the liver to process it...he's also not a fan of any hot drinks either, so I've stayed away from my normal green tea until I'm done with treatment

    Still shedding a lot this week, but glad to have my mostly intact stringy dry mess when I look in the mirror! LOL

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    hope49 - very good point about not putting the caps back in the freezer until you are finished!  Also, be as quick as you can when getting caps out of the freezer, to keep the "door open" time to a minimum.

  • Shasha10
    Shasha10 Member Posts: 212
    edited February 2013

    I need to use the cold caps only for the TCH for 6 times, right?

    I wating for a call back from the penguin rep to find out about dry ice.

  • Rhonda2
    Rhonda2 Member Posts: 99
    edited February 2013

    Shasha,



    We purchase our dry ice locally and it is around $100 total for each use. I am also on the TCH regime so here is how mine works. In my schedule, Herceptin is administered last which does not count as chemo when concerning the cold caps so after Carboplatin is finished I keep the caps on for four hours after that. It all sounds complicated before you actually do it, but once you have the first one under your belt you'll see it is actually pretty easy.

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