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Cold Caps Users Past and Present, to Save Hair

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Comments

  • mdg
    mdg Member Posts: 1,468
    edited December 2012

    For those of you shedding...I felt like I was losing SO MUCH hair during chemo.  I kept shedding and thought if it kept up I would be bald...you have all seen my photos.  I had a full head of hair after chemo.  I know how stressful it is.....have faith.  Hugs!  I wish I could offer more......just know the caps will work!!!

  • makingway
    makingway Member Posts: 465
    edited December 2012

    It is extremely unfortunate, and rather unethical, that the company tells people this when they have no headbands in stock.

  • ecarol
    ecarol Member Posts: 15
    edited December 2012

    Hello all - I am brand new - just diagnosed. and pretty freaked out.  I am told I need neoadjuvant chemo, prior to surgery - how extensive the surgery will be is yet unknown, depends on how much the tumor shrinks. Met with the MO today for first time - she recommends 4X A/C - every 2 wks for 8 wks, followed by 12 weeks of weekly taxol alone. I do not want to lose my hair. I have been reading all your comments, and researching the Penguin cold caps - and am so happy to learn that going bald can/might be avoided. I spoke to Frank today. He's lovely. My question is -- I thought I was only going to have 4 chemo sessions total and therefore the whole dry ice chest thing plus helpers was doable. But am in a panic learning today that it will be 16 treatments overall - the MO (who is not in favor of caps, but said ok to doing it)  says taxol is not as damaging and some people's hair grows back during taxol. Is it necessary to use the caps after the 4 treatments of A/C, throughout the 12 weeks of taxol too? This is overwhleming to me. 

    Thanks so much for your help.  This site and boards are incredibly helpful. 

  • Mishyp
    Mishyp Member Posts: 13
    edited December 2012

    Hello ecarol. I'm sorry that you are "joining this club". I know how overwhelming it is at the beginning. I used the Penguin Cold caps with the same regimen as what was recommended to you. I had very good results and used the caps during all 16 treatments. I also heard that the taxol was not as harsh and that hair could grow back but after saving my hair from the A/C, I did 't want to take the chance. I would be more than happy to speak with you about my experience. PM me if you'd like to connect.



    Take care :)

  • sebm9
    sebm9 Member Posts: 488
    edited December 2012

    SLB11: Avoid wine/alcohol or caffeine during chemo while using caps. Your liver needs all the help it can get in detoxing the chemo, and your liver function also directly affects your ability to keep your hair. Stressing it by making it process alcohol or caffeine is counterproductive. In addition, any sugars (including alcohol) fuel cancer cell growth and should be avoided, including long after chemo. I am a wine collector, and my rad onc is an international wine judge who also lectures on the health benefits (including antioxidant benefits) of one glass of red wine each day. I don't have wine like I used to, because of the alcohol-cancer connection, but during chemo you want to give you body a break from it.

  • sebm9
    sebm9 Member Posts: 488
    edited December 2012

    Hi ecarol, I'm sorry you are joining the club but congratulations on finding out about Penguin Cold Caps. If you send me your email, I'll send you my writeup of my experience -- really helpful for new users. Also, there's an organization called the Rapunzel Project which will donate freezers to cancer centers; please check with them to see if it's possible to get a freezer donated to your center. Where is your treatment?

    You will need to use the caps for each infusion. The taxane treatments are especially hard on the hair follicles, and sometimes even cause permanent baldness -- so you definitely want to protect your follicles with caps while going through treatment.   You will shed hair throughout, but even on long treatments such as yours women have success, and for I think all of us, the hair comes roaring back very quickly. (Without caps it seems to take much longer to return; cold stimulates hair growth.)

    Best,

    Susan

  • sebm9
    sebm9 Member Posts: 488
    edited December 2012

    ErinOrchard: I'm in the East Bay and am one of the earlier users of caps. They work. I have below shoulder length curly, thick hair and kept it throughout -- I did shed, and had more than complete coverage although it felt thin to me. To others, it was not noticeable. I've coached hundreds of women on using the caps, and would be happy to give you a demo for you and your helper(s) if you like. I also have an extensive writeup of my experience, including lots of pointers on getting through chemo, if you send me your email (it's too long for a PM).

    Best,

    Susan

  • menoway1
    menoway1 Member Posts: 1
    edited December 2012

    Frangal50@aol.com. Just had 1st chemo on Wednesday. Can use any info you can give. Thanks ,FRAN.

  • schoolmom
    schoolmom Member Posts: 327
    edited December 2012

    I am right behind you TLYM.  #3 on Monday.  Heavy shedding from day 24 until yesterday, day 40.  Hope is slows down for the next few weeks.  No visible bald patches....just underneath behind my ears.  I used the headbands too but I guess my hair was too thick for the cold to get to it.  Everyone says I look the same but I definitely feel the noticeably thinner hair....23 more days to go until last chemo.....and counting......will post the new pic on Monday.

  • Laura5
    Laura5 Member Posts: 419
    edited December 2012

    menoway1, Are you using cold caps?

  • sciencegal
    sciencegal Member Posts: 546
    edited December 2012

    Hi everyone,

    I am so grateful to all of you for this blog. I am at day 38 with TCH therapy and using the penguin cold caps. I still have a full head of hair. I have shed and it is thinner, and looks flat because we cant style or blowdry, but still i dont need any head covers. I am so happy. Thank you!!!



    Also, just a note, if you have Her2+ cancer like I do- by default the docs will probably recommend A/C. But the TCH therapy is equally effective in clinical trials (publication by Slamon as first author) and you really want to get the herceptin in you as soon as possible. I have been on this regimen now with herceptin for five cycles and my doc and I cant feel the tumor any longer. yay!



    Ask questions- be your own advocate!

    Thank you to all who post here and good luck to those who are just joining our club. The chemo sucks but it is do-able. They have meds for the side effects- and we have our cold caps for our hair.

  • ecarol
    ecarol Member Posts: 15
    edited December 2012

    sebm9 and mishyp - 

    I sent you both private messages with my contact info - would  love to connect with you directly. Preparing for a Jan 3 start date of 4X A/C . I'm HER2 neg so not sure why the MO has prescribed this super strong cocktail. I do want to use Caps and be as well prepared as possible physically.   any help advice so well appreciated. I will doing treatment at Cancer Institute of Marin, they don't have a freezer, and the doc said no to accepting a free one. Sigh.  I am suppposed to do 12 weels of Taxol following the A/C - the sheer number of treatments sounds overwhelming. not sure I can do the Caps with carting dry ice chests and helpers each time. I also work full time and have a school-age child at home.  Can you tell I'm anxious?  Yikes. 

  • Laura5
    Laura5 Member Posts: 419
    edited December 2012

    ecarol and sciencegal, My doctor recommended AC with Herceptin, but I was worried about the possible heart side effects so I ended up getting TCH. Glad to hear the trials find it to be equally as effective, not to mention TCH is easier on the hair. 

    ecarol, I had to push hard to get my facility to accept a freezer. Their legal dept. was worried about liability etc. I was not going to take no for an answer however, and sort of let them know that I would be using a freezer, if not there then at another facility. Chemo centers make an incredible amount of money on chemo. Really, they should bend over backwards to accommodate patients.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited December 2012

    I've added two new photos to my cold cap album:

    (1) one that shows my hair at 6.5 months PFC after the first highlights (which were very subtle)

    (2) the other shows the re-growth of hair behind my ears where the caps didn't fit tight enough (I didn't use bands, but you couldn't see the loss with my hair down).  Note the regrowth is curly. 

    http://coldcapphotos.shutterfly.com/pictures/8

  • Hortense
    Hortense Member Posts: 718
    edited December 2012

    Dancetrancer - your hair looks lovely!

  • makingway
    makingway Member Posts: 465
    edited December 2012

    Sciencegal-Thanks for sharing that TCH is as equally effective as AC! I don't believe all doctors keep up with current data and this is very important! I recently got to meet Dr. Slamon while I was helping a patient with the cold caps. I agree with you-you are your own best advocate. Otherwise you're just treated like a number...Well, my number is 1!  BTW I like your screename-I love science also!

    menoway1 & ecarol-I have created a website to help those using the cold caps http://penguincoldcap.net/ Send me a PM if there are any questions I can answer for you. My telephone number can be found on the website.

    Laura-You're right, these facilities should be bending over backwards to accomodate the patients who would like to use the cold caps, but they don't. In fact, the place where I was were I met Dr. Slamon was adamantly aginst cold cap use a year ago. I had 2 patients move their treatments to other facilities more accepting of cold cap use. Finally, the facility has come around to seeing the benefit of allowing their patients the ability of cold cap use. They've even purchased a top of the line freezer that is superior to the one that is available through the Penguin Co.

    dancetrancer-Great pics!Thanks for sharing them.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited December 2012

    Thank you Hortense and makingway!  I like to post them periodically to encourage the newbies!  

  • Hortense
    Hortense Member Posts: 718
    edited December 2012

    makingway and science gal- You are so correct. We have to be our own advocates.

    I learned very quickly, after being diagnosed, that I would have to speak up for myself if I wanted anything done differently. I suffered through a very painful biopsy because the new young doctor didn't wait long enough for the anesthetic to work and I was too polite to say anything. You can bet I would now. I'd never let a dentist start too soon. 

    I request where IV lines are placed - above my wrist because it's more comfortable for me as I can move my arm and hand freely - and I ask politely for anything else that makes life easier, rather than simply accepting what comes my way. 

    After the fog of being diagnosed with cancer started to clear, I began to understand that I was not just a patient, I was also a consumer fully capable of going somewhere else with my insurance money if I didn't like how I was being treated or what I was being told. I also started to get smarter about my health insurance, calling it frequently with questions about what was and what wasn't covered, and finding out what was and what wasn't in network - many of the best doctors in NYC are not in any networks. There were some surprises, but I learned to work with them.

    I looked for a different surgeon after the one I was sent to by the mamographer told me he would try not to leave me "too deformed". Really? I wonder how he would like to be told by a prostate surgeon that he wouldn't be left too deformed. I called my primary doctor who refered me to an excellent and sensitive woman breast surgeon at a major cancer center who did a spectacular job.

    When the oncologist I met with at that same center told me I couldn't use cold caps because they were a bother and that the center wouldn't allow them, I moved to another doctor and hospital where I could use them. Chemo is very lucrative for the medical profession. If enough people take their medical business elsewhere, it will be noticed.

    I recently learned that the cancer center has been talking to the hospital that welcomes cold caps and it sound like the center may start doing a clinical study of cold caps themselves. Money talks.

  • sebm9
    sebm9 Member Posts: 488
    edited December 2012

    ecarol: If your MO insists on no freezer, you may want to shift your treatment. UCSF (Hope Rugo) has used them for several years and I believe finally got a freezer. Dr. Rugo did the most recent clinical study and it is (was already?) to be announced at the San Antonio breast conference, I'm told. I was the first person at Alta Bates to use them and can give you the name of my folks if you are interested. I've had many friends leave John Muir for UCSF or Alta Bates because John Muir wouldn't support use of the caps. Alta Bates doesn't have a freezer yet, but staff were very accommodating to me and all of my gear, and the Alta Bates new chemo orientation is hands down the best I know of. Their nurses wrote a guide to surviving chemo which I list in my writeup, 

    The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment [Paperback]

    Judith McKay (Author), Tammy Schacher RN OCN MSN

    Can't say enough about this book, it is fabulous -- and simple, straightforward to read, which I especially appreciated under the fog and stress of my cancer dx.

    ***

    I had a routine followup with my surgeon a couple of weeks ago -- all is clear and I'm soon going to be at the three-year mark! -- and the nurses took tons of PCC brochures from me, I'll have to get more from Frank.

    Susan

  • schoolmom
    schoolmom Member Posts: 327
    edited December 2012

    Just picked up my dry ice for #3.  Had a panic when the lady who handles my orders was on vacation and the backup lady went home for the day.  The distributer is donating the dry ice so the manager on duty had to find out what was going on.....was afraid I was not going to get my ice!  Ultimately the two asst mgers gave me my 40 # of pellets and about 10 blocks instead of the 6 I order......I put them in the cooler, covered them with towels and ready for packing in the am at 5:00 AM.  Chemo appt at 8:30 but they never start on time.....

    Check in tomorrow or Tuesday!  I will take pics tomorrow and update them tomorrow night.   All take care

  • 301724
    301724 Member Posts: 185
    edited December 2012

    Good luck, Schoolmom!

  • makingway
    makingway Member Posts: 465
    edited December 2012

    Hortense-What you wrote is spot on! I can't believe some of the stupid things doctors/nurses say-too deformed? That doesn't sound like a ringing endorsement...I also came to a point when I realized what was 'another day at the office' for some, was my life experience. If I could find a way to make the experience less painful I insisted it be so. 'Sorry, that you don't normally use lidocaine before injecting the radiocative dye in the tumor, but I WANT it'! I got it :) 'Sorry, that I slow your rountine down but, if you can't find a vein in one try I want the nurse who works with the neo-natal patients you mentioned.' That would be great if the cancer center does a clinical trial. There haven't been enough of them using Penguin caps. The presentation at SABCS done by Dr. Hugo was on the Dignicap. From what I've read she is starting a clinical trial using other caps as well.

    schoolmom-That was a bit of a stressor...thank goodness you got the ice! Good luck tomorrow!

  • schoolmom
    schoolmom Member Posts: 327
    edited December 2012

    Well here is my pic from #3 this morning.  My helper, Lisa said my hair was great even though I have shed a ton...she is my trainer / helper/ guardian angel. 

    All went perfect today.  Only one more to go on Jan 7 and back to work on Jan 9.  I have been off since 9/28 so I am long over due.  Figured I could work through radiation more easily than through chemo.

    Hugs to all.

  • Laura5
    Laura5 Member Posts: 419
    edited December 2012

    Wow schoolmom, your hair looks great!

    Makingway, how right you are-we must all stand up for ourselves.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited December 2012

    schoolmom - your hair looks great! 

  • schoolmom
    schoolmom Member Posts: 327
    edited December 2012

    Just hoping that the heavy shedding for 10 days after #2 doesn't kick in again.  I guess everyone is different so keeping my fingers crossed. 

    Night to all.

  • Hortense
    Hortense Member Posts: 718
    edited December 2012

    schoolmom - You are doing so well! I don't think you will shed as much, though I think you will shed some as chemo still circulating hits your follicles.

     I thought of you while decluttering my closet two days ago because I ran across a collection of dated ziploc bags containing the hair I lost in the tub after each shampoo. I thought I had tossed them along with the rest of my hair collection, but apparently didn't. Looking at them now, it is very clear that I lost the most right after the 2nd infusion, then much less for a few shampoos.

    I also lost a good amount during the first shampoo after the 3rd infusion, though not as much as after the 2nd, and lost noticeably less the shampoos after it. It may be that residual chemo inpacts follicles to a certain extent right after each treatment.

    So, based on my experience, which might not be yours, I would say that you probably will have a shed during your next shampoo, but then you should settle down to a much slower rate. Try not to let it upset you. Your hair looks wonderful.

  • schoolmom
    schoolmom Member Posts: 327
    edited December 2012

    Wow.  I just got the greatest deal at my onc. office.  My last chemo is in January and I went to the billing clerk to find out about overpayments on my account.  I was saying that I am at 100% coverage now but that I would have to meet my deductible for chemo and the neulasta shot in January so just hold my overpay in my account.  She had a program for people with insurance that the neulasta shot is submitted and applied to your deductible but this program will pay the onc. office for the shot.  So in actuality it is applied toward your deductible but you dont have to pay it.  She had me sign a form and then they take care of all the billing.  I dont have any more info but it is worth asking if you are going to continue neulasta in the new year.

  • charlotte14
    charlotte14 Member Posts: 2
    edited December 2012

    I am facing cytoxan,taxotere and GCSF.  I would like to keep my shoulder length hair if you can send me info on where I can obtain a cap.  Also suggestions for maintaining my eyebrows?  Also your pointers for getting through Chemo.  I am in the San Diego area.  My e mail is cseckington@sbcglobal.net

  • Laura5
    Laura5 Member Posts: 419
    edited December 2012

    Hi Charlotte, You can rent Penguin Cold Caps at www.msc-worldwide.com.

    makingway (see above) has a great website http://www.penguincoldcap.net/ full of tips.

    sebm9 (see above) will email you her extensive write up if you request it. 

    mdg has a great blog http://breastcancerwontdefineme.blogspot.com/                      

    Eyebrows are tough to keep, but most women don't lose all of them. A little eyeshadow can do wonders on them.

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