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Cold Caps Users Past and Present, to Save Hair

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Comments

  • arbella
    arbella Member Posts: 20
    edited March 2010
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    ok post chemo cap users....when can i start blow drying or using any heat related tools to style hair? happy to have hair but getting tired of looking like a crazy lady!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Jill1965--Hope all goes well for you today....that's one less treatment!

    Arbella--I used my hair dryer every time I washed my hair (2 times per week) on the cold setting and I also used my curling iron (on the ends only) every time I washed it.  I've finished my chemo and still have a head full of hair...it's just thin but at least we're done!!!Laughing  For some reason this last TCH kicked my butt..it's 8 days later and I still feel like crap....nearly passed out at the grocery store this morning!!! 

    I sent Frank an email about a week ago and still haven't heard back from him....I guess I need to followup and see if he will answer my questions about returning back to my normal hair care regime...like when can we do that??

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Did my 5th chemo today.  I used the Dr. Scholls "Moleskin" on my forehead and it made such a difference in the cold.  Thanks for the idea.  I should have used this at the start. 

    No Sunshine - I did get an email from Frank and he mentioned a hair regrowth item called Sea Chi?

    I will have to go back and get the right name.  He did not answer my questions about insurance or going back to regular hair care.

  • Jill1965
    Jill1965 Member Posts: 7
    edited March 2010
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    I had dry ice delivered to my house from an Air Gas distributor!  One quick phone call, it was here in one hour - 20 lbs of blocks and 35 lbs of pellets for $19 plus a $30 delivery fee.  For round #1, I bought it at Publix and it was more than twice as costly and I could not get pellets.  I thought the pellets worked better in the cooler and for putting on top of the wings while warming the colder areas of the caps.  We used a pair of chemical handling gloves and put the pellets (which were in a cardboard box) into 2 gallon ziplocks opened an inch to release pressure.  I still may have had too much ice as the caps did come out at low temp readings  (less than -50 C).  Flat packing with freezer paper in between the caps worked great, and the moleskin on my forhead, temples and ears helped a lot.

    Big scare - My helpers were almost not permitted back to the infusion center this week.  I had some "administrative" hold ups from the head nurse who did not think it was "fair" for me to have "visitors" while the other chemo patients could not.  My sis, who is a nurse, promptly corrected her that they were not visiting, but there to perform a procedure that her nursing staff was too overburdened and untrained to perform, so she finally relented.  And to top it off, we saw several patients receive visitors during treatment, as I have noted each week for the past 4 treatments (I'm on weekly herceptin).  The staff nurses are so kind; I feel bad for them that they have such a mean boss! 

    Feeling good today!  I'm taking advantage of the steroid high and have a few friends and a lady coming to the house tonight to exhibit some designer "foolery" for a little jewelry shopping therapy! 

  • mtri111
    mtri111 Member Posts: 67
    edited March 2010
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    Hi there,

      I am the origin of Frank's suggestion re Sea Chi (it was referred by a friend and she was spot on). However,  it is NOT a hair regrowth product, but an excellent and lush conditioning product, and worthwhile.. but not a magic bullet!

     Latisse, on the other hand, really IS a magic bullet. It should be started before chemo begins, sustained during and after. It is necessary that  it be continued for the effect it produces, but is well worth it. Nothing OTC is like it.. the OTC stuff is more like lash conditioners, whereas Latisse has key molecule that actually promotes the lash (and eyebrow) growth.

     Next.. have read some of you  mentioning about the hair thinning.. I think we have all experienced this.. but i wanted to reiterate that clip -in human hair extensions, readily available (do an ebay search) are FANTASTIC and easy solutions. They disappear under your hair, are comfortable and beuatiful and give the added thickness /oomph that is so desirable.  Because of this, i have worn my hair down.. shoulder length with bangs... seamlessly, and NOT been compelled to tie it up all the time.

     And more: I use  a gentle spray- in hair conditioner after shampooing (I like Dermorganic shampoo!), used in perfectly nice warm water.. no need to freeze!).. and then use a blowdryer with the cold shot . Then, i use a flat iron gently .. yes!.. no harm done, as it is not touching the roots or pulling at all. I am at my last treatment, and 5 months of this don't lie.. so there ya go.

     For the grays ... COLORMARK really does the job and will hold you over til real hair coloring feels comfortable. I haven't decided my comfort level with that, but thinking about a month of waiting is all.  I see no reason to wait longer, if all seems well.

     So, hope that helps some.

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Hi, all.

    Ditto as to Colormark; I tried letting my gray come in to see how it would look and I must confess, it faded me out hugely so I went back to Colormark.  I get it online at ebay usually a little cheaper by the way.  Also, I highly recommend using Frizz Ease or a similar "no frizz" hair product spray with your morning hair prep, preferably one without alcohol but I love Color Smart by Matrix which does have alcohol (also get online cheaper than in store).  They all have Cyclopentasiloxane or a Dimethecone- type ingredient which definitely restores some of the moisture to your hair that the cold caps remove.  I also dry my bangs with a medium heat dryer since nothing else works to make them presentable and I trim them as they grow in, with no problems in either case.      

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Great work, Jill, good for you and your sister.

    The nurses all seem to have a head nurse who feels compelled to be difficult.  I have no idea why. I want to add about the steroid glow that I myself had a really back meltdown about 5 days after each of my first two treatments; like really bad and that improved after having my dosage halved.  My doc also said he believed it contributed to the weakness that I felt in my legs afterwards too so just be aware if you crash it's just the steroids. Other than that, I agree; make hay while the sun shines. It's the best thing to keep your strength through chemo too. 

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Hi, Ang7:

    My prescription for a wig says "prosthetic hair device" and my insurance will pay up to $1500 for one!!   When I'm finished with the caps and have the final bill after the security deposit, I'm going to chase Frank to give me a bill which states something like that.  I'll have to work on it a bit and will let everyone know how I make out with the insurance company - and Frank!

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    No Sunshine;

    It will all come back better than ever; hang in.  In the meantime, I recommend ColorMark for the roots, no color pencils (they're drying) and warm setting on the hairdryer has worked fine for me even during treatment as long as I keep it to a minimum and don't pull at the roots.  I personally think that I lose whatever I'm going to lose three days after treatment and after that, it's minimal  since the chemicals start leaving your system.   I would ask my doctor when the chemicals are gone from your bloodstream after the last treatment and go with a semipermanent coloring after that to begin with since they tend to be less harsh. Don't use henna; it's natural but REALLY drying.  Good luck.

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Ang7

    Don't forget moleskin under the chin strap and over your ears.  the chinstrap shocked me every time without it.  and an ativan before made a huge difference to me.  Good luck.

  • shadow2356
    shadow2356 Member Posts: 93
    edited March 2010
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    I have one more chemo left, 3/22. I can't wait to be finished. You ladies here have been great. I am thrilled to say I still have a full head of hair. Everyone is pretty surprised. I think the nurses in my chemo place are not fans of the cold caps. I guess they think its a pain if you are not sleeping in the corner. We come in with the big cooler and I guess it is not their norm. I still want to get the word out. You don't have to lose your hair!!!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi All:

    I spoke to Frank on the phone last night and he wanted me to relay to everyone that he is thinking of all of us and sends his love! 

    He answered a few of my questions but strictly said that it pertained to me and that everyone should go to his website and look at the changes regarding hair.  He has contact information for Erkkie Harris-Wells who he states can give us excellent information on hair care after chemo.  He would also like to update the testimonials on his website and encourages us to write up a testimonial with photos if you would like to be featured on his site.

    I lost ALOT of hair on the 6th and final round of chemo...but still don't need a wig.  It's just very thin.  I did color my hair because I was impatient waiting on Frank's response...I used Loving Care temporary color and left it on for 30 minutes.  It did great and so far I've had no ill effects and my hair feels softer...not dry and brittle like it has for the past 6 months!

    Here are the questions that I asked Frank and his responses and...again it pertains to my situation. 

    1.  How long do I wait after chemo to go back to my regular shampoo schedule (everyday vs. once or twice a week)? Frank suggested 2 months for me due to the hair loss that I experienced during the last chemo.
     
    2.  How long after chemo can I wash my hair with my regular shampoo (not the baby shampoo) and wash my hair with warm/hot water?   Do not use Baby Shampoo anymore...he suggested the following (these were tried by past CC users and found to work the best):

    pH Miracle Alkalizing Shampoo and Conditioner for all Hair types. 

    http://www.phmiracleliving.com/

    Sea-Chi Organic Leave -On Moisturizing Treatment and Hair Growth Formula

    http://www.seachi.com/

    Pureology shampoo ---dilute it

    Pure Results, by Regis Designline

    Some of you will recognize your suggestions on here and I know some of these products have been discussed on here before....Frank said he is no longer recommending baby shampoo during the CC process.
     
    3.  Can I use any type of hair product that thickens my hair and/or promotes hair growth (this could be in shampoo form or supplement form)?  Wait for 2 months and/or consult with Erkkie Wells as she is the hair expert regarding this topic.  Frank also suggested that I continue to wear the cold caps 2-3 times per week for 1-2 hours (while waiting to send them back) to stimulate growth.
     
    3.  How long after chemo should I wait to use hair color without peroxide/ammonia...and can it get on my scalp?  I already used temporary color without any problems.
     
    4.  How long after chemo can I color my hair with a permanent color (containing peroxide/ammonia)?  Wait for 2 months and/or consult with Erkkie Wells.
     
    5.  When can I use the regular setting (hot air) on my hair dryer?  2 months 
     
    6.  How do I clean the cold caps prior to sending them back?  Dehair and clean the caps by wiping them with alcohol wipes.

    I hope some of this information helps those that are finished or almost finshed with chemo.  

  • gmp300
    gmp300 Member Posts: 196
    edited March 2010
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    NoSunshine,

         That was great and informative for everyone including myself!  Iam 7 months past chemo and Iam still afraid to color my hair.  Athough I have heard about Erkkie Wells from Frank I never contacted her and I think I will now!   Iam so happy for everyone who is saving their hair, even if it is thinner it is better than the alternative and it will grow so much faster!   Everday there are more and more women using the caps!  Glad your done with chemo too!

    Geralyn

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited March 2010
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    NoSunshine,

    I too have been losing ALOT of hair (actually some clumps) in the last few weeks but it seems to be where the caps didn't fit so well on one or two of my treatments plus alot of thinning everywhere else.  We have adjusted the temperature so they fit better so hopefully that works.  I have had 6 out of 8 of my treatments (4 x DD A/C, and 2 of the 4 of Taxol).  If all goes well then I will be done on March 31st.  I am hoping what hair I have stays until then!!  Luckily I had thick hair to begin with and the people at work and friends have said you can hardly tell I have lost any!!  I have been real creative in "comb overs" and head bands!!  So far I am happy with the Cold Caps.

    Take care everyone, Kelli

  • NewBride
    NewBride Member Posts: 126
    edited March 2010
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    Hi Ladies.

    Looks like I'm next.  Four rounds of Taxotere and Cytoxan.  My onc says it's OK for me to do the cold cap therapy.  I told him that if it works for me, I will be approaching him about supporting the Rapunzel Project and putting a sub-zero freezer in his infusion center for other patients to use.  He said "OK."  He also advocates the use of ice water for fingernails during infusion.

    Frank gave me the personal call from the UK.  Astonishing.  Very nice man.  I am waiting for e-mail from him so I can get the financial end of this taken care of.  Would it perhaps be a good idea to remind him that I need to take care of that?  I don't want to have a start date and be without caps and the time to practice with them.

    By the way, are any of you waiting to pass on caps at this time?  I'm in central California and expect that I will begin my chemo within the next two weeks or so.  It looks like I'll be using 12-14 caps.  Perhaps we can at least coordinate that part of things.

    Thank you all for sharing your experiences.  If this works out for me it will be in large part due to all of you kind, determined women.  It's nice to think that I won't have to be "Cancer Girl" every day of my life for up to a year even after the chemo is over.  Thanks again and I look forward to hearing from all of you.  PM me if you need to.  I check in daily.

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Hi NewBride -

    Yes, you may want to remind Frank as he is constantly on the go.  I will have my last treatment March 25th and am awaiting his instruction on what to do with the Caps when I am done.  Best of luck with your treatments and I will keep you in prayer. 

    Thank you NoSunshine -

    You have been such a wealth of information throughout this whole thing.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi NewBride:  I sent you a PM.

    Thanks Ang7...I hope your chemo is going well...you're almost done!!!  I woke up with a swollen left jaw this week and I looked like a chipmunk Yell!!  Dentist says a root canal is in my immediate future.  I broke a back tooth trying to eat hard candy during chemo....this just never ends!!! 

    Anyway Frank told me to hold on to my caps until he or I could find someone to wear them otherwise I will have to pay to send them back.  I really would like for him (or me) to find someone soon as I could use the deposit money....medical bills are starting to pile up!!!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Kelli1970:  For the life of me I can't figure out where all the hair that I lost was coming from!  I just knew that by the time my 6th treatment came around I was going to be bald but for some reason it held on....even though it did fall out constantly!  It has finally slowed down to where I'm not too concerned anymore...and it seems that by my coloring it (13 days after my last chemo) helped condition it and make it easier to comb which resulted in fewer hairs falling out.  It may be my imagination but I do think the coloring and conditioning helped it.  It also looks thicker since I colored it.  I'm not telling everyone to go out and color their hair and as I was coloring mine I knew I was taking a chance and might lose it all but like I said in an earlier post I suffered no ill effects from the coloring. 

    You are on a tough chemo regimen and I wish you all the luck in the world with your treatment and your hair.  I'm going this weekend to get a haircut to see if they can tame this mess I call my hair....I'll post pictures later this weekend of the final chemo results (maybe even before I get it cut for comparison).  Take care!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Geralyn:  If you do talk to Erkkie Wells let us know what she says or recommends.  I thought about contacting her as well but haven't yet. 

    Hope you are doing well....I'll be glad when chemo is just a distant memory for me!!  Take care.

    Carol

  • gmp300
    gmp300 Member Posts: 196
    edited March 2010
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    Hello Carol,

         Your brave to color your hair!  Im chix-I still have nightmares of me bald!!  But Iam definately due to color!!  I think for the first time in my life the gray hairs don't bother me, Iam just thankful that I have hair on my head! LOL!  I'll tell you where you lost hair---Probably around your ears and in the back (underneath)  I didn't think I lost as much as I did (You couldn't tell) till now that it is growing back and is about 4 inches long I can see it!  If I put my hair up I have all these short hairs in the back and I have my sideburns back!  I love it because it reminds me of what a wonderful thing these cold caps are and how thankful Iam that I found them!  I will let you know if I get a hold of Erkii Wells.  I just haven't had time lately. Maybe next week.  Talk to you soon!  Geralyn

  • bridetobe
    bridetobe Member Posts: 40
    edited March 2010
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    Hello all,

    I'm new to this board, though I have been a frequent visitor since my initial diagnosis last month. I will be starting chemo in two weeks and have decided to try the cold caps. Treatment is not yet fully decided because there appears to still be some uncertainty about my HER2 status (still waiting on the FISH analysis) but due to the size (4 cm) and 2 positive nodes doctors agree to start with neoadjuvant chemo. My oncologist would prefer to go with AC followed by TH, but after discussing risks and toxicity, he's told me he could be swayed to go with TCH IF I am HER2 positive (as we suspect). If not, then we have to go with AC and then Taxol.

    Now, with respect to the all important hair issue, my oncologist is okay with my trying the cold caps but he has told me to expect to lose all my hair with either treatment. I would really like to prove him wrong. Based on my own research, from what I've read on the boards and from speaking to Frank, it seems that cold caps might work for either case, but if I'm correct TCH seems to be getting a bit more successful results. I would like to hear from those who've had either treatment. I ask this, because on a practical note, I need to decide if I should invest in high-quality wigs? I was also thinking of getting some clip-on hair extensions, but I'm not sure if the extensions would cover the main hair loss areas. Some help from veterans is definitely needed!  PMs are also appreciated

    Thanks again!

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Hi bridetobe -

    I do not want to jinx myself, but I have one TCH treatment left and I have only lost hair right by both of my ears.  With my hair down, it looks the same as it did before I started treatment.  It is very dry right now and I do not like washing it only twice a week, but it has been SO worth it for me and my self-esteem etc.  I am one of those where bald would have made me so depressed I cannot even put it into words.  With 4 kids, DIEP surgery and chemo is all I could take.  I am so pleased with my Cold Caps results so far.  I was also given the choice and chose TCH because I was told it was easier on the heart and that the Cold Caps would work better with it.  This is just my experience so far, but you can see that there are alot of pleased ladies on this site.  My oncologist did not believe in them and she is now considering renting a freezer for the office...

  • bridetobe
    bridetobe Member Posts: 40
    edited March 2010
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    Thanks Ang7,

    This is exactly my case. I just turned 30 and I am planning on getting married next year and as vain it sounds there is no way this cancer is going to take away or delay me walking down the aisle WITH my thick, long hair. 

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi Everyone:

    Here is my final photo from my 6 months of TCH!  My hair has definitely thinned and doesn't look too bad in this photo but when I walk you can see right through it...I DON'T like that feeling and will probably get clip in extensions until it grows in some...but I am sooooo happy that I still have my hair.  It's like Ang7 said....I don't think I could have taken the loss of my hair.  Vain I know but it is what it is....my BF will never understand the fact that keeping my hair was very important to me!!!  Excuse the weepy eyes (thanks Taxotere) and the big jaw thanks to the infection in my broken back tooth but I wanted to share my last photo!  This was taken today which is 19 days after my last chemo.  I did go and get my hair trimmed up a bit this weekend because I had two long strands hanging down in front on each side that looked strange. 

    Photobucket"

    Photobucket"

    Bridetobe: My doctor at MD Anderson told me the same thing...he said that cold cap therapy doesn't work and I would lose my hair.   I tried it anyway and you can see the results.  Good luck to you on what ever chemo regimen you decide to go with and just know that we are here for you if you have any questions.

    Carol

  • shadow2356
    shadow2356 Member Posts: 93
    edited March 2010
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    Hi Bridetobe

    I have had 5 TCH treatments so far. I have lost only strands of hair. Not enough for anyone to notice. I think if I were bald right now it would be too much for me to handle. The cold caps can be a bit hard and it sure is cold when it hits your head, but it is SO worth it. I am having cancer treatment but I don't look like I am. There are enough side effects from the chemo that I don't need to deal with that too. My hair is pretty long and it would take years to get back to how it is. The scary thing is that a lot of people who get taxotere have permanent hair loss. There are threads about that on this site. I have written a lot about using the cold caps on my blog. THe site is listed in my signature if you want to check it out.

    Good luck to you!!

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    NoSunshine -

    You look great!

  • mtri1111
    mtri1111 Member Posts: 12
    edited March 2010
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    For Bridetobe and anyone else-

     i have 14 caps available.. am done with treatments and the caps worked!

    i told Frank and Joyce  that i can ship right away to whomever needs these, but feel free to write me here and make this connection.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Same here...I have 12 caps that are cleaned, packed and ready to go.  I'm in the Houston, TX area but can ship anywhere just let me know.

    Carol

  • NewBride
    NewBride Member Posts: 126
    edited March 2010
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    Hello to all of you.  It appears that my 14 cold caps will be coming from a lady in Berkeley, CA who finished her treatments in Dec.  Even though she has been in possession of the caps since then her deposit was refunded in a timely manner.  Very cool since we all have more than enough $ tied up in cancer stuff already.

    I just got off the phone with my onc's office.  Looks like April 1 is my chemo start date.  Perfect.  April Fool's Day.  If you knew me at all you would know how appropriate that is.  They wanted to go sooner but my DH's schedule just won't allow for it.  Just as well. I have a nasty sore throat with coughing and sneezing so I would probably have to wait anyway.  At least it looks like I'll have time to "rehearse" with the cold caps.

    Thanks for your speedy responses regarding available caps.  Our hairy little group seems to be growing faster and faster.  I'm sure that those of you with caps on hand won't have them for long.

  • arbella
    arbella Member Posts: 20
    edited March 2010
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    i just colored my hair...one month post chemo. so happy but still so scared it is all going to come out next week....any words of wisdom?? will keep you all posted