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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 March 2011

    I am doing cool water but since my shower is so small I have been using a hose attachement I got at Walmart in my garden tub and just leaning over to do my hair after my shower or do my hair first and then hop in a warm tub and soak while my hair drys a bit in the towel.  The little hose attachement works on a tub faucet and it is a light stream.  It works better than the cup since I have long hair.  I have a hard time getting my hair really wet through with the cup...it takes forever.  I have not been rinsing every day....it's too much work especially if I have to wait for hours for it to dry since it's long.  I just wash every few days.  The other days I put my hair in a shower cap and just enjoy a hot shower without getting my shower cap wet.  Most days my hair is pulled back since I am off work through chemo so I don't worry about it being as beautiful as I usually would. 

    I am one week post first chemo....no shedding yet as it usually happens after 14 days.  I am nervous...I am trying not to think about it.  Next week will be rough as after 14 days I will be freaking out!  I will think about that next week, right?

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

    I too have long hair and very curly/unruly....so is it ok to put it on top of the head in a scrunchy or just pull back in a scrunchy or too much stress on the roots.   

    Good luck MDG.  Our thoughts are with you!  Keep us posted.

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    RE: elasto gel caps - they work but need changed more often and you need to add straps to tighten them. PM me and I'll give you details on care of caps in between use to insure good fit.

    You can buy your own caps on line but be sure to get the one that looks like a bowl. You can have dry ice shipped to your home. Google dry ice and find a location close to your home. All instructions from PCC apply to elasto gels except for time on your head before a new cap is needed. Saves you tons of money and you can either pas on your caps or sell them when done.

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

    Well, after discussions with others here, I've decided to use the Elasto Gels which I will purchase from  

    http://www.mandwsupply.com/

    Once I'm finished I will be donating mine.  Hope if I stick to the program, they will work.  I agree with others, it will give my hubby and I something to keep us occupied during chemo too.

     Funny (not ha-ha funny) but I had a friend ask me yesterday why I wanted to keep my hair...she says "why don't you just lose it and see if it comes back in nice and straight"....some folks just don't get it.  I want to keep my hair.  Realize the caps are no guarantee but I'll sure give it the old college try.

    Hope everyone is having a great day! 

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011
    Just thought I would share--day 91 for me --with hair!!  Today, if my herceptin tx could be pleasant--it was! The clinic was abuzz--everybody politely speaking to one another ---we are in the same boat--it is so nice to see people in like situations--being so kind to one another--I almost felt like it was a cocktail party with all the laughter and kibitzing!     So many people call me "the hair lady"---asking so many questions--wish they could have a been penguinistia too!  The Doctors and Nurses are becoming believers as I make the round to my final TCH on March 24--finally THEY BELIEVE!  !  So far I have presented my cost and printouts of websites connecting to Penguin Cold Caps and the Rapunzel project--of course I am a contact as Well and I am a walking advertisement!  Any other suggestions?

    Sharon

    Have a Great Afternoon!

    Sharon

  • jpmercy
    jpmercy Member Posts: 94
    edited March 2011

    Hi everyone!! sorry i have been MIA! busy with work, home, little boy at home who is now walking!!!! life has been both busy but fun!! and my hair is wonderful!! anyway, i have a question, has anyone used the caps for chemo prior to surgery and then again after surgery? i know of someone who would like info on the caps, her husband is friends with my brother in law so i dont know her but her husband wanted info after my brother in law told him about me, i wasnt sure if chemo before and after surgery would have success with the caps r if it would be recommended or worht it? thoughts anyone before i share the info and get their hopes up i wanted to make sure it was an option, i just wasnt sure...thanks!!

    and new penguinistas...KEEP UP THE GOOD WORK, spreading the news and wearing the caps i wore them weekly for 12 weeks i wore 144! hang in there! also i read a few pages back about telling breast surgeons...i went for my 6 month follow up with my surgeon and met with his PA and she started off the visit saying she had a mis print in my file saying i had chemo but said obviously that is a mistake i said no no i had 3 months of chemo...she was certainly confussed and when i told her all about the caps, showed her pictures on my phone of me wearing them...she made me write down all the info i could possibly give her she was so very excited!!!

    take care ladies!!!

    Jen :)

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Sharon~. What a wonderful story and experience for you! WOW Day 91....I totally understand counting the days... Thought I would never stop....but you do, then move to weeks and hopefully years... I'm 8 weeks PFC today...still have most eyelashes and brows...still waiting to see if they'll hang on.



    ArleneA~ We are all behind you! Look forward to hearing about your cap journey! And aren't some friends (and general people) just "grand" through this....I learned from people (who I still love dearly) how not to be and what not to say(especially about hair) should I ever be the support for someone going through cancer.



    Love this group of women! Y'all have helped and taught me so much.

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

    Keep the success stories coming - it gives me hope!!!  I had my first chemo/cap experience last Wednesday and I am in the waiting to shed period.  I have been trying to keep myself busy so I don't think about it, but by next week I will be just waiting for the hairs to drop!  I have dark brown hair and an all white tile bathroom floor..........oh lordy there will be no hiding anything that sheds!  Oh well....I am expecting some shedding but really expecting to keep my hair!  I will keep you posted.  I will try to take the before the shedding photos this week so I have something to compare and share with others who want to use the caps and want proof. 

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Jpmercy~. Don't know how I missed your post...so glad to hear the update! I don't know re: your question..anyone talking to Frank, he'd know....

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    jpmercy - love that you pop in - please keep it up, we love and need it! 

    lmflynn - same, so great to hear from you!

    Arlene - gosh, no words on the friend thing...they mean well but do not get it! 

    Sharon - your experience sounds so great, I hope I have that too!

    All - met with a different onco yesterday. Talked to her about the 2 people doing cold caps, when there is room for 15!  She said that her experience has been that people simply can not afford the treatment. She has talked to patients and it is just not perceived to be worth it.

    Ran into the OB (not my primary) that delivered one of my babies.  She was confused because I looked so good.  She said that she deals with so many BC diagnoses.  I spent 15 minutes educating her on all this stuff, cold caps, treatment, dense breasts (why do they not tell patients that they are not being screened 100%!), etc.  She is a really experienced OB and was not aware...she thanked me for spending the time to educate her.  Her words.  Good grief, we have a long way to go!

    Just realized that I wrote zero about my hair.  I go in for TCH #4 on Monday, so today is a wash day.  The hair gently falls on my body these shed days.  It has become more predictable.  Days 14-20 are my shed days. I still look normal to the world. I feel great.  I work out everyday.  I have a date for my exchange on June 7th.  LIFE IS GOOD!!!

    Love to you all....and prayers to all who are dealing with the tsunami.

    Annie 

  • jpmercy
    jpmercy Member Posts: 94
    edited March 2011

    another question...i keep having woman ask me about caps which is GREAT!! but i wnated to be able to give examples of success...anyway anyone receiving chemo that is not taxatere or taxol and having success with caps, this is what i am being asked and only can speak of taxol and taxatere and carbo since that is what most of the woman ive talked to were on with caps anyone new haivng a different chemo?

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hi everyone,

    Had my TCH#4 on Wednesday. Freezer was not cooling well and Tues. they had a repairman in to fix it. On Wed. the caps only came to -20 celcius, and maybe a little more, I don't know why, but now I am nervous again. I will be waiting until day 21 to see what happens. The first 2 treatments, I had very minimal shedding, after the 3rd treatment, a little more, amd after the 4th a little more. All together what I have collected in 2 snack size baggies(one for each bathroom that I comb my hair in-1 upstairs and 1 downstairs) I don't think the 2 together equal what I used to clean out of my brush once a week or sometrimes every few days. My hair appears thinner, only because it is not fluffed up with the blow dryer and gel and mousse. It is flat and styleless, but its my hair and its still there. I said to a friend the other day, I would not have left my house with my hair looking as it does, but now I proudly do!!

    To all the past cap users, keep popping in on us with updates, we want to know how you are doing and that you are well. Also your successes give us serenity. They keep us off the edge!

    I am going for an echocardiogram next Thurs. I can't believe its already 3 months since I started Chemo, 2 more to go. Then continue the year of Herceptin, which has been reduced to 1/2 an hour from an hour and will only be for 1/2 an hour for the rest of the treatments. That doesn't seem so bad. I will also do 7 weeks of Rads 5x a week, starting about 1 month after finishing chemo. A long haul, sure hope that it does the trick and I will be cancer free forever!!!!

    Keep Positve!! Keep Active and Keep Laughing!!!

    Nancy   

  • leeann56
    leeann56 Member Posts: 51
    edited March 2011

    Hi everyone,

    I was just wondering if any one has had the oncotype DX test done on their tumor. I was scheduled to start chemo on the 9th but my onco dedcided to do the oncotype and has postponed my chemo to see what the score is. I plan on using the elasto gel caps and had them scheduled to be delivered when this new turn of events came about. Just wonderd if anyone has had this test.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    HI Leeann - welcome!  I did not have the oncotype.  For those of us that are HER2 positive, this pushes us to chemo regardless of oncotype.  Appro 20% of us are her2 positive.  The rest of the non her2 can weigh in...there are many other threads on BCO.  One is  "should I have chemotherapy?"  lots there on oncotype testing...

    Good luck! 

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

    I had the oncotype  done.  I came back at the highest number in the low range so I had to decide on chemo.  Based on some other things in my pathology report I opted for chemo.  It takes about 2-3 weeks for the results.  It is an expensive test and I have good insurance and I still had to pay $500 of it (I think the cost $4000 or so).  The test can be helpful especially if your score is really low.  It seems like many people come back in the gray zone or high and 2/3 of the time it doesn't help people avoid chemo.  My onc warned me of that before taking the test - she said the odds are in the favor of a high or mid score so you may not get the answer you are looking for.  It is worth trying...I would do it.  If you have more questios, PM me.  There are a lot of threads on oncotype and a "roll call" thread. 

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

    Hi everyone:

    So nice to see all you cheerful penguins here.

    RE:  the oncotype - I asked about it too and was told by my onco that due to the fact that I'm HER2+, chemo is a must.  GRRR!  Oh, well, we need to be happy that Herceptin was found.

     I picked up the book AntiCancer - A New Way of Life (David Servan-Schrieber, MD, PhD) today and just getting into it but attitude is so important in this battle. 

    Smile, Smile, Laugh, Laugh

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    Hi leann56: I had the oncotype test. It is an incredibly useful (and relatively new) test. I was a 19, just barely out of the low range. At first, my doc and I were high-fiving that I had a relatively low score. I immediately assumed I could forego chemo. Then, as I crunched the numbers, I realized of COURSE I had to go through chemo: I am a busy woman with a long-to-do list in life. I have insurance, a job with paid time off, a loving circle of care, and I am in otherwise outstanding health. I didn't want to look over my shoulder and in ten years have shortness of breath and discover nodules on my lung and wonder if I could have done something more, earlier. And who knows what my circumstances would be in ten years? So I opted for chemo. The night I decided, was the night I was madly googling for some miracle to save my hair...and found a miracle, PCCs.

    Don't worry about the extra time taken to get the test; cancer is relatively slow-growing and the oncotype test will help make sure you are making the right step at this time. Btw, the test will pretty much reflect much of what you already know from your path report.  You are stage IIa, grade 3, hormone positive, no nodes, her2 negative, the oncotype will probably reflect that. It will also help your doctor decide if/which cocktail will be appropriate (it IS possible to overtreat!)

    Good luck, let us know how it goes!!

    Susan 

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    Question to all who have finished chemo-and have hair post cap usage--My last tch is march 24th--I in my head am already plotting my return to the salon for "real" color"  what is the wait time PFC--to safely color treat your hair?? 

    Thanks Sharon---(can't wait!!) Gives me something huge to look forward to!!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    sashasz3 - I am fantasizing about my color, too.  I am done on April 25th.  I was thinking that I may do a test color on my hair (nape of neck) where I lost so much and now have strands.  No one can tell!  I was thinking I could do the loving care there when I am post chemo.

    What did others do???

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    loving care is the wash out no amonia or peroxide---I believe the company is phasing it out--I looked--only very strange colors left on the shevles--black blue black no blonde shades:(

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    are you serious?  just when we need the product...others on the market?  

    though a few blue blacks may make it interesting on my blond hair!  time to live a little!Cool

  • Lucky60
    Lucky60 Member Posts: 59
    edited March 2011

    Hi All, regarding hair color:

    Did my second Loving Care treatment yesterday, at 11 weeks PFC. The first I did about 8 weeks PFC. I did a strand test before the first one and nothing scary seemed to happen, so I went for it. My hairdresser applied it w/ foils to the long part to avoid getting it on the scalp, and dabbed it on the gray around my sideburns that are growing back (more gray there than in the old days but I'm hoping that eventually changes).  It's true Loving Care doesn't seem to be available much in the stores anymore, but I found some online. Amazon has most colors. I bought something at a health food store called "Naturtint" but after reading online, discovered it does have peroxide, so I'm gonna return it.

    Going back to my hairdresser today to try some hair extensions on the sides. I was one of the ones w/ thick hair and a big head, so lost quite a bit of hair underneath and it could use a little boost. But overall doing good and very little head shedding now. BUT, I did lose almost all my eyebrows about 2 weeks ago, but don't freak if this happens to you! There were new hairs underneath that grew really fast and now they are almost thicker than they were before--I've even been plucking a little! Eyelashes thinned a lot (didn't use Latisse) but are starting to grow back also. Down under hair also starting to grow back, had to shave my legs for the first time about 1 week ago.

    Re Oncotype testing: This is the only reason I did chemo. I have mixed feelings about whether it was a good thing. I was very low risk prior to testing, and came back in the intermediate category after the test. There is not really any convincing data that chemo helps people with an intermediate score, but docs recommended it just in case. They are doing a study now focussed just on this issue, but the results won't be out for years, I think.

    OK, enough said. You newbies hang in there; keep the caps tight and you will keep most of your hair! PM me if you want.

    Lucky60

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

    Thanks and CONGRATULATIONS Lucky!  Tight caps seems to be so key.  Lucky - which caps did you use?  Some of us 'newbies' are going with the ElastoGels.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    HI Lucky - thanks for the info...I am going to start looking for it now!  Can you post pics?  I am clueless on that front, but others seem to figure it out (or their kids do it! ).  

    Anyone using Latisse during chemo? I have it but have not used it...lashes are definitely thinning out, eyebrows staying strong!

    Live well everyone! 

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Hi all~ I found a great no peroxide, no ammonia at Sally's Beauty supply by Clairol... About 30 colors.... I used it for the second time today at 8 weeks PFC + 2 days. First time was 5 weeks.PFC ... No ill effects so far..and hair is starting back everywhere. Still using only cold water and washing now about every 3-4 days.... Lisa

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Yeah Lisa - LOVE to hear how things are going. That is great news.  Just looking at the dull and dreary hair. Would love a color.  But I will have to wait months. I am so grateful to have hair.

    Do you know the brand?

  • Lucky60
    Lucky60 Member Posts: 59
    edited March 2011

    I think that ammonia-free hair color from Sally's is the Clairol Beautiful Collection--I got some but haven't tried that yet--just Loving Care. I used the Penguin Cold Caps. Annie, I'm trying to post some photos below. Left to right are at first chemo, 12 days after 4th (& final) chemo, and now (11 weeks post final). The lighting is kind of wierd in the last shot--but you can see the hair is thinner but still acceptable. The Penguin people warned me I'd have more loss than most because my hair was so thick. There is lots growing in underneath but it's not long enough yet to really be seen from afar. Lucky60

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Lucky60~

    You look great! 

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    Lucky 60: You and your hair look fantastic! If you hadn't captioned the photos, I wouldn't have been able to tell the before/after.  And what a big smile! Absolutely nobody would know you were a woman going through chemo! I too have very thick hair so had more loss, but it's relative (I had more to lose). When I met Frank the day before my final/4th chemo, he kept running his hands through my hair feeling the texture and thickness. I showed him the baggie I'd collected (great that this has caught on) and he was astonished. 

    As it grows back it's something, though! Mine is coming in super-curly (it was wavy already) and super-fast. I have ringlets around my ears and they poke me in the ear at night when I sleep and wake me up! It's funny. Annoying, but funny. 

    Cheers to all,

    Susan 

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

    Lucky:  Thanks for the pictures.  They give us 'newbies' lots of hope.  I too have thick hair and sounds like we'll lose more but we have it to lose.   Glad you did the pictures....I'll do them too.  I guess I'm a little worried because I lose a lot of hair daily (always have) anyhow.

     You look so wonderful and I agree with Susan if you had not told us which picture was which, I would not have known.

    Congrats again!

    Arlene

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