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Cold Caps Users Past and Present, to Save Hair

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Comments

  • leeann56
    leeann56 Member Posts: 51
    edited March 2011

    mdg

    I think we are on the same chemo schedule except I'm one behind you:) I felt that the nape of my neck did not get cold at all, I don't know if it's because my hair is so thick, but i'm definetly going to stress over this for a while. Pretty hyped up on steroids right now I'm sure you can relate.

  • cheyenna
    cheyenna Member Posts: 119
    edited March 2011

    hey girls, im just popping in for a lil encouragementSmile i ended my chemo on Nov 1 2010, i was on the hard core stuff, total hair killer, the Red Devil, ACT, 16  treatmentsFrown i wore the PCC for 8 hours after each infusion..wow! that is a lot of hours in the PCC lol... i came out with a full head of hair!! though i lost a lot of legnth due to breakage,my hair was thick on top and it looked like i just cut all my length off. i am thrilled to have saved my hair!keep it up and stay strong!!

     hey susan, Ang7 and cmksocal Smile nice to here from you,i am now an agent for FrankSmile

     little penguin, im so sorry it did not work out for you,you needed to do what is best for you, i understand what u went through, i thought everyday how i wanted to stop and give it up,all i could think of was how many days i would have to wear them, 16!!! i just told myself i will make that call on the morning of chemo and not think about till then, that helped a lot.. good luck to you on your last two chemosSmile

    any girls out there who have finished chemo using the Elasto Gel Caps? im wondering how they worked for you? thank you

    goodnight ladies stay strong,

    love Chey

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    leanne:  Nice to have a chemo buddy and neighbor (I am in Detroit).  I am feeling OK this morning.  I noticed  a little more hair coming out of my head yesteday during the cold caps and again this morning but I messed with my hair so much yesterday with doing the caps and usually I barely comb it and keep it back so I don't lose much hair.  I will have to see if it calms down....hopefully it is just from all the activity and not a major shed, but then again I have not had a major shed at all yet so it just might be my time for shedding at day 21 after my first chemo.  Who knows!.  Keep me posted on how the caps are working for you.  How did it go on your first time?  I don't think it was that bad...for me the worst is during the taxotere part because I also ice fingers and toes plus put ice in my mouth. Talk about a long hour and fifiteen minutes!  Thank got for benedryl and ativan...I am pretty drugged up at that point since they do the taxotere first.  After that it's no big deal to me. 

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Hey ladies - you are doing great if you have not had any shedding yet. It is working! 

    Leeann - the nape is where I had my problem, but no one notices but me!

    Chey - great to hear from you. I love to hear all the successes! I just talked to two new women this week who are going to do the cold caps. Yeah! 

    Marie - I agree on the T icing. It is cold. Thankfully you have the other drugs on board.  It was when I tried to "go natural" without the drugs that I really felt the cold. That lasted (no drugs) until I sent my DH to "FIND THE NURSE AND GIVE ME DRUGS NOOOWWWW!!!"  LOL

    Arlene - you are set!  Good luck! 

    Have a great Thursday 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited March 2011

    Hi Ladies

    Here is Day 1 with the Advance cold caps. It is a little hectic between icing fingers - toes and changing caps but it does make the time fly by and end the end if it all works then it was well worth it. I am assuming I will have plenty of time sitting around once the SE start to take affect. I felt like some areas of the caps where not getting cold as others but I am thinking also maybe those parts where just frozen and I could not feel them. After day 21 and I still have hair that will be the answer. It is not as uncomfortable as you ay think. I do not like cold and I had not problem that lasted more than a minute. I am on Taxotere and Carboplatin and both TX lasted about 2.5 hrs and I went through all six caps. I think 8 would have been beneficial and I wore them 30 minutes prior to TX and 3 hours after TX. I will Keep posted on the progress. Here is alink incase the upload did not work - http://www.flickr.com/photos/60990754@N04/?saved=1

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Hi Nmoss and others - remember, you need to massage the caps (PCC, not sure about elasto) during the treatment (while on the head) to ensure that the cold gel is in contact with the head. We put a timer on and do this about halfway through the treatment.  

    Sounds like the day went well!  I think your beautiful hair will turn out great!  Hang in there...distraction is key during this phase!!!!  

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hi there all:

    Annie: Who told you to massage the caps when they are on? I never heard of that, not from Frank(who I never hear from anyway) nor from anyone else on this sight. Could you explain exactly what to do, where and when and how?  I usually only feel the cold the first couple of minutes and it is usually on the top of my head, also the eyebrow band is excrutiating, but that too, only lasts a few minutes.

    to mdg and nmoss1000: I, too ice the fingers and toes and eat ice pops during the Taxotere, as well as have the cold caps on. When someone remarks that it is cold out or it is a cold day, I think to myself--what do they know?  I've experienced what it must be like to live in an igloo!!!!

    Well good luck to all the new Penquinistas and Keep Positive!!

    Nancy 

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    Nancy --the massaging of caps is mentioned someplace in this (now) very long thread.  I think this was one of the discoveries that a user came up with.  I was doing the caps last July - Sept so it was sometime in that time frame that cap massage was mentioned.  I will admit that I wasn't very at remembering to do this while wearing the caps.  My husband did massage/knead the caps before putting them on my head.

    Colleen

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Hi all:

    I don't think the ElastoGels need to be massaged unless they get way too cold so I'll need to watch the temps.

    Great pic NMoss and glad your session went well.  I too am having the Taxotere, Carboplatin and, of course, Herceptin.  Not sure of the order though!  So the Taxotere is the worst from what I'm hearing here?  My premeds are:  Benydryl, Zofran and Decadron so hope they do the trick.

    NMoss:  Good suggestion wearing a cap over the cold cap.

    I'm doing a Clinical Trial of Exercise during Chemo so tomorrow is my pre-qual physical for that which includes a dexascan.

    Have a good one!

    Arlene

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Hi all~

    In the past we only massaged the Penguin Cold Caps before they went on my head.  Maybe this is something new?

  • Julia1969
    Julia1969 Member Posts: 85
    edited March 2011

    I just looked up my instruction sheet from Frank.  It says "After fitting the Penguin Cold cap to your head kneed the Pengiun Cold Cap for 8 seconds every ten minutes for each cap used."  We all received so much information from so many sources when we start chemo, it's hard to take it all in.  I missed that I should use the caps between infusions.  Chemo brain?

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    My instructions from Frank also said to knead the caps while on. My helpers would do this & I'd get a blast of cold ....could feel the difference.



    Question~ I'm trying to be happy that I have hair...and say it everyday and I am thrilled!...but 10 weeks PFC today...and I so want to wash my hair in warm water....haven't since November.....and so want a nice cut....don't you think I'm ok to do this now???? Please tell me yes...



    Susan~ you are such an eloquent writer...your posts always touch me.

  • mtri111
    mtri111 Member Posts: 67
    edited March 2011

    Re Hair washing..

     Warm water  was fine for many of us all along.. and certainly since completing treatments.

     My strategy was dilute shampoo in warm water, gently lather, and rinse from warm water  poured over head, from the bowl. Did this while in the shower ( perfectly normal temp shower.. as in hot; just  kept the hair-rinsing more warm than hot. 

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    So I had chemo #2 yesterday which was 3 weeks after my first chemo.  Shedding started today a bit.  How long did your shed periods last?  I am nervous...I am suppose to be able to wash again on Saturday and now I am scared to death!  Talk me off the ledge.....anyone!  I will be in "the cave" the next few days with my "chemo hangover" so I will have too much time to think about losing my hair. 

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Mdg~. I can tell you I was on that ledge...a few times....step back...you will be fine. I did not shed at all until about Day 24. Then I took my shower & washed my hair...and hair fell out... I shed and cried in the mirror....I was sure I would lose all my hair....it did not happen. My hair was fine...you will shed and seems everyone is a little different...my "shed" days were about 5-12 days after chemo. Then it would slow and then more..... I am amazed still today that I have most my hair....most people on TC lose their hair around Day14 after their first treatment...as Frank and many women have said if you make it to Day 21 the caps are working. I know it's hard..the stress but you will get through it with your hair!

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    The instruction to massage the cap, once on the head, was in the written info I received at the time. If I recall, you massage the entire cap (to distribute the gel as evenly as possible) just after the cap goes on, and again about 10 minutes into the cap. In fact, I massaged continuously, especially where it "felt warm" (which turned out was just my nerves frozen!)

    Susan 

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Thanks Ladies for all the caps information even though I'm using the ElastoGels, I'm probably going to do the PCC protocol as much as possible.  Mine arrived today and are 'chillin' in the freezer.  They don't seem  to come down far enough around the base of the head and that is probably why many lose their hair on the base - I'm trying to keep positive.  Hubby is so ready to help me through this!  Don't believe we need to massage the Elasto's but sure can't hurt, can it!

    Picked up my home prescriptions today with 2 nausea medicines and the steroid...scary for someone who HATES medicine.

    So great to have all you ladies to vent with and this is one of the most positive and cheerful blogs on here. 

    I'll do what NMoss did and take a picture at Treatment #1.

    Arlene

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hi  either.Everyone:

    I am so glad you all got written instructions from Frank, I got nothing!! I've barely even heard from him. It seems like he took my money and forgot all about me. He doesn't answer my e-mails. I think I will call hom tomorrow and ask for an explanation.

    Keep Positive

    Nancy

  • howard
    howard Member Posts: 102
    edited March 2011

    Hi All, some of you mention taking Benydryl the day of chemo. I have chemo #3 tomorrow - Friday- and only knew to take Advil. What does Benydryl do? I take a Claritan after chemo and for a few days to lessen bone pain from the Neulasta (spelling?) shot.

    Thanks!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Nancy:  That is a shame and I feel bad for you.  Just keep doing the caps Nancy and you'll be fine.  It seems sometimes companies get to big.

     I think there are enough instructions out here from the many users and also from the videos on their site that you should be just fine.

    Don't give up...Arlene

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Howard:  They give me benedryl in my pre meds to help avoid allergic reactions to the chemo.  I also take Ativan before I get there...it is an antianxiety med which also helps with nausea.  It dopes me up pretty good so the caps aren't that cold.  I do take the claritin the days after to help with bone pain from neulasta.  I did not take it last round and had bad bone pain.  I am taking it this time so I will be hoping it works! 

  • howard
    howard Member Posts: 102
    edited March 2011

    Thanks! Appreciate the quick response. You all are the best encouragers and wealth of info!

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    Nancy and others - dry ice companies will deliver. You can pay with a credit card and arrange delivery at the site - have the nurse or staff agree to receive it - usually Fed Ex in our area.

    As for kneading the caps. it is in Frank's video demo, but I did not hear of doing it while caps are on.

    Elasto gels and fit - I made elastic bands with velcro for around the circumference and one for over the top  and under the chin along with two others to keep the cap fitting tightly. DD has lost no more hair than reported by PCC users, but it does mean changing caps more often to keep the cold level.

    Keep you EG's in a 2.5 gal zip lock with the white insert in them when in coolers to keep ice crystals from forming on them. 

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    MOP:  Thanks for the additional information on the EG's.  We have the inserts in the caps in the regular freezer.  The caps came in ziplock bags so those should work and I'll keep them in there although the lady told me that you just brush the excess dry ice off.

    Monday is D-day for me!

  • Lucky60
    Lucky60 Member Posts: 59
    edited March 2011

    Lmflynn--I got my hair cut last week which was about 3 months PFC, and it was great. She didn't layer it, but just bringing it up with everything the same length made it look fuller. We have been doing bang trimmings since my last chemo with no ill effects--in fact my bangs are one of the fullest parts on my head. Also, we've been flat ironing it in small sections (carefully not to pull, of course) and that seems fine also. My hair seems softer and is almost like regular hair again! I am still washing carefully and with cool water, maybe that's not necessary at this point, but I'm kind of used to it now...Oh yeah, my eyebrows have completely grown in (bushier than before) and the eyelashes are coming back also; with mascara they look pretty normal.

    mdg--off the ledge, please, shampooing after you start shedding IS scary, but you'll be fine. Remember you have something like 110,000 hairs so you can afford to lose some!

    ArleneA and other newbies--good luck with everything! Lucky60

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    I see some are having problems with Advance caps - they do not stay cold long enough. Elasto gels caps - in good condition- do stay at -10 to +1C when removed from the head after 20 min use. We did our second testing using the caps we bought and the 20 min exchange.

    Also, Frank said different hair types may not benefit - African Americn's hair is different and has not responded as well to cold therapy.

    The Advance caps did not hold the temps- may be the way they are packed or the condition of the caps. Lady In MI called me today with same problems we had with Advance's caps. Now I see Leeann posting with same problems.

    As per Frank - you do need to pre cool for 50 min before chemo starts and  use caps for 4 hours after and for extra protection, use them for several hours at least one day after chemo.

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Lucky:  Today was awful.  I washed and lost so much hair....I stood in front of the mirror in tears.  This just stinks...but I know you all know that too.   I hope the shedding stops...it started on Wed and it's Sat now so I hope it just stops now!

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Mdg~. Left you a PM...(with lots of spelling errors:-)...,,you can do this! We've been there....the shedding is normal....hang in there!

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    Hang in Mdg--the first few sheds seem the most dramatic! every hair is precious be gentle! I now have to wait and see what happens PFC  Ended thursday--rads to come and more herceptin--waiting to find my new normal!  When does most hair start to regrow???  Did two hours of caps today--hope it helps--I am ready to return them--I believe I am shipping on Monday--does anyone think that is too soon??

    Sharon

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Sharon:  congrats on being done.  That is so awesome!  I hope you are doing something fun to celebrate.  Best of luck with rads.....I hope it goes quick for you.  Have a great weekend...

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