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Cold Caps Users Past and Present, to Save Hair

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Comments

  • London-Virginia
    London-Virginia Member Posts: 109
    edited December 2009

    Just a line to everyone to wish you all a happy and peaceful christmas and great 2010.

     I have got on reasonably well with cold cap treatment.  I did thin a lot, and have just finished 6 x FEC.  The hair on the top of my head did start to grow again during treatment.  Eyebrows and eye lashes wise, eyebrows have thinned at the outer edges but there is plenty left for me to get an accurate pencil line, and my eyelashes are very thin.  I feel strongly that overall, I much prefer waking up with  hair to see in the mirror, and a good basic amount for hair growth/thickness as things get back to normal.  Presently I do look a bit like a cockatoo, but I guess there are worse looks in life!

    I would like to thank GeraLynn and Lori for continuing this thread and spreading the word - great job girls!!

     Here in England, the nurses are relaxed about cold caps and never negative.  Even the Ward Receptionists exchange jolly comments about the caps working and how great it is if you keep your hair.  

    So, goo luck to you all and for new readers of t his thread, if you can, give it a try.

    all best wishes form London - 

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Ang7 & Arbella:

    I only wash my hair twice a week and as I proceed with the chemo my hair seems to stay dry (not oily that would probably occur if I didn't have the chemo) but the baby shampoo does dry it out a lot.  It is hard to not wash it but twice a week and like Geralyn said...use cold water.  The cold water is hard in the winter but I'm trying to maintain my hair the best way I can. 

    London:  I'm glad to hear that your hair is starting to grow back...even during chemo.  I keep looking for hair growth (especially around my ears) but don't see any as of yet.  I have 3 more chemo treatments (TCH) left and hope I don't lose too much more hair...I'd like to see it start growing back!!!  I had a PET scan yesterday and they could not find any cancer in my body (YEAH!!) unfortunately the Dr. said that I have to continue with the treatment plan...meaning 3 more chemo treatments, surgery and radiation...but at least I know the chemo (as yucky as it is) is working....I just hate that I have all the other to look forward to but I'm happy also that this is working as planned and I've gotten to keep my hair...so far!

  • arbella
    arbella Member Posts: 20
    edited December 2009

    hi all

    so i am wondering what you cap users did as far as hair color and hair styles. i am ok with letting the gray grow in, although if there is some safe way to use hair color without peroxide or ammonia  i of course would rather not be gray! also, what hair styles did  you all have? my hair is very long and thick and seeing as i cannot blow dry it or anything it is a bit unruly to wear just down without a clip or barrette or something. any sugggestions appreciated.

    arbella

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Hi Arbella,

    I had colored my hair 2 months before chemo.  Frank had me ask my hairdresser about what chemicals were used before I started Cold Caps.  He also suggested Pureology shampoo, but I have not been able to find it.  I might try to order online. I have been using the baby shampoo but it is very drying for my hair.

  • mtri111
    mtri111 Member Posts: 67
    edited December 2009

    Here are some suggestions re the recent conversation.

     -PURE RESULTS shampoo and conditioner by Regis designline, available at hair salons (Frank misunderstood.. i didn't mean Pureology, but this product instead.) There are also options- with no harsh additives- at Whole Foods stores.

    -for touchups on gray growth, Colormark hair "mascara": fantastic. It comes in various shades, dabs on with small applicator, lasts til next shampoo, provides excellent coverage and does NOT compromise the root in anyway.

     -Latisse - by prescription from a dermatologist, this is a fantastic product (mentioned in several posts). Use it for the duration of treatment  (Yes!) on upper and lower lash lines, and also dab on eyebrow area. It is a terrrific and efficacious product under any circumstances, but under duress, thumbs up!

    -Large velcro rollers for setting. These are gentle if handled gently.

    -Blowdryer with a "cool shot" button and adjustable power for the air stream. There ARE good ones on the market with these features.

  • gmp300
    gmp300 Member Posts: 196
    edited December 2009

        Hello Everyone---  Thanks mtri111 for getting the name of that shampoo and the other products!  that is what we all need-after chemo hair products!  I was looking for it and got busy with Christmas!   I want to wish everyone a Merry Christmas and a Happy New Year (even if Iam a few days late!)

         One thing that I want to say about the Latisse-and Iam not saying this is for everyone-but I used it after chemo and my lashes grew back in 2 weeks.  I was thrilled.  It is expensive so I only used it every other day for a while and then quit using it since my lashes looked fine and it was 4 months after chemo.  All of a sudden my lashes started thinning again and even my brows.  I had put it on my brows too.  I don't want to have to use this forever so I quit using it to see what happens.  I was scared I would loose all of my lashes again!  Well they thinned and I lost some but not all and my brows thinned too but they seem to be growing back already.  so I'm just going natural.  I was wondering if anyone had the same experience.  Iam still glad I used it because it really freaked me out loosing my lashes and they grew back quick so I didn't have to deal with that for very long.

    All the Best to Everyone--Geralyn

  • geewhiz
    geewhiz Member Posts: 671
    edited December 2009

    Hi Ladies,

    I started TCH x 6 on Dec 11. I used the cold caps too and have had no thinning so far, but am losing some body hair so I am hoping the caps are working. I was most concerned about the areas around my temples and ears as these did not seem to get as cold. Frank did mention that with my thinker hair that its best to leave the caps on longer next time perhaps...so 4 hours AFTER treatment. UGH!

    I also got a prescription for 6 months of Latisse. It's $115 per tiny bottle, but a friend used it and kept eyebrows and eyelashes. I have been using it for about a month. I put one drop in the cap and do eyelashes -upper and lower. Then I put another drop in and do eyebrows. My friend had a slight darkening of the skin right at the lash line..but it looks like eyeliner and went away immediately with discontinuing the product after chemo. So we will see if this works!  

  • mtri111
    mtri111 Member Posts: 67
    edited December 2009

    Regarding Latisse:

    It is an expected result that if the user ceases using this product, the lashes WILL return to their norm, which is of course, thinner than with continued use of Latisse. SO, if the results with Latisse are enjoyed, it is a commitment to continue. That said, the frequency of use can be adjusted to suit the user, so perhaps every couple of days will suffice to maintain the look that has been achieved. It is not normally intended for eyebrows, but as a weapon against  drug-induced thinning, it couldn't hurt. I am given to understand that there is now research  going on about its potential for use on the head, which seems an obvious avenue.

     With taxotere/carboplatin every three weeks as my regimen, 2 cycles completed and now day 33 since the first session, my trajectory has been this:

     On day 10 from first cycle, the "diffuse thinning" commenced. It has continued  pretty much as the  steady state each day since, no better and no worse. It is hard to NOT count the strands, but useful to note that the NORMAL shedding of hair is 50-100 strands per day. When we are not so aware of this, that amount may seem incidental; under these conditions, we are mindful of every one. Especially if there is insignificant regrowth during this period! Based on the reports of others, including MANY cold caps people, I guess  this is regarded as successful,with thinning an expected outcome.  Making a loose chignon with a scunci clip,a low ponytail, sideswept braid..all loosely secured with soft cloth ties...are all very good style solutions, and look truly seamless.

    I have used Caps for the additional 4 hours after the infusions, and am employing an average temp of -33/34C.  Using a moleskin patch cut to size, and stuck on the forehead, plus pieces cut like sideburns for the temples; 2 thin sanipads cut to stick over the ears, and a piece of chamois cloth under the chin (that chin strap can be rather rough otherwise), are my strategies for comfort; all  coupled with an essential ingredient: a soft electric blanket around the body, providing the perfect counterpoint that makes the whole affair quite tolerable.

  • arbella
    arbella Member Posts: 20
    edited December 2009

    mtri111...are you saying you used gentle coloring products, other than the colormark which i have, to color your hair during chemo? wondering about that....thanks and thank you for tips on how to wear. i was told the large plastic clips are ok as well.

    12 days and still have hair....

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Thanks mtri111 -

    I will try to find that shampoo instead.

  • mtri111
    mtri111 Member Posts: 67
    edited December 2009

    Arbella and all,

    No, I have used  no other hair coloring products other than the Colormark DURING treatment period. My hair IS colored to start with..light brown and blonde highlights.. and i had it done up nicely 2 weeks prior to the first treatment (frankly, i see no reason why this is a problem, and am a bioloigist by training!).  However, for the duration of the treatment,  the chemical processing DOES seem too harsh, so, the Colormark is a good solution for touching up those roots at the part or the temples. Colormark should be available at good hair salons, or perhaps online.

    Here is a link for the PURE RESULTS shampoo:

    http://health-beauty.shop.ebay.com/i.html?_nkw=pure+results&_sacat=11861&_trksid=m270&LH_PrefLoc=1&_odkw=&_osacat=11861

    --

     You may also wish to try this excellent product that was recommended to me, and lives up to the reputation: Sea - Chi leave-in conditioner

  • mtri111
    mtri111 Member Posts: 67
    edited December 2009

    Continuing this:

     here is COLORMARK:

     http://www.colormarkpro.com/index.php

  • shadow2356
    shadow2356 Member Posts: 93
    edited December 2009

    I had my second TCH yesterday. I have had nothing more than a few strands of hair loss. Today while taking a shower I lost about 1/3 of my body hair. (TMI, I know) I only mention this because it proves that my follicles are being damaged by the chemo, yet my scalp hair has stayed. Keeping my fingers crossed.

  • Thankful1
    Thankful1 Member Posts: 11
    edited December 2009

    Thanks mtri111 and gmp300 for sharing the information regarding Pure Results shampoo and conditioner and colormark temporary hair color and latisse.  I found the Pure Results at a salon at my local mall and can't wait to give it a try.  I found that  Sally Beauty Supply carries the colormark but they didn't have the shade I need so I have ordered some online.  It can't get here too soon!  I am going to ask my onc if she can write me a prescription for the latisse tomorrow. I have the weirdest eyelash/eyebrow issues going on that I have ever seen.  I have lost the middle upper section of my lashes on my right eye and the middle section of my left eyebrow.  Fortunately, my bangs have grown so much that they are now in my eyes so I don't think anyone but me has noticed.  I hope not anyway!  I finished my chemo on 12/09 and have just noticed that the hair I lost around my ears is starting to grow back in.  That seems to be a good sign, I think. Thanks again and Happy New Year to all!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Ashively1:  The hair that you are noticing that is growing in around your ears...is it normal colored or is it growing in white/gray?  I just finished my 4th round of chemo (2 more to go...YEAH!!) and have lost quite a bit of hair over my ears...especially the right one...go figure!  I keep looking for new hair growth and am seeing a few grays and was wondering if that is new growth or just old gray hanging on for dear life.

    Thanks to all that have posted about the hair color...I don't have that much gray hair but it is starting to show now that my hair has thinned quite a bit.  I think I will also ask my Onc about the Latisse...my eye lashes are very thin...yet my brows are still hanging in there.  I found a website that sells the lashes and brows (sounds kind of crazy doesn't it!!) in case I need some reinforcements until they grow back in.  The site is: 

    http://www.blinkiesonline2.com/brown_brows.htm

    To All Cold Cap Wearers Before Us:  I also want to know about the new hair growth...when the hair grows in...especially under the neck and around the ears does anyone know if it will grow in curly or straight?  Is it going to stick straight out from underneath the hair that stayed and be hard to manage while growing back in?  I'm just curious...

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Shadow2356:  Glad you are not experiencing much hair loss.  I had my 4th TCH yesterday and still have a head full of hair...yet it has thinned over the course of treatments.  Since it is long no one can still really tell that it's thinned...I just can't wear it pulled back anymore until it grows in  over my ears...but that's OK.  Good luck to you with your TCH treatments...are you doing a round of 6 treatments?  Mine are going OK but I'll be glad to be done with this portion of the treatment.  Take care...

    Carol

  • mtri111
    mtri111 Member Posts: 67
    edited December 2009

    Folks, regarding Latisse:

    It is readily available from dermatologists,  particularly those that do cosmetic precedures. They will have it in stock right in the office.  This just in case oncologist is unaware of, or reluctant to prescribe.
  • Thankful1
    Thankful1 Member Posts: 11
    edited December 2009
    Hi NoSunshine,  The hair that is growing in around my ears is gray. My chemo nurse told me that what happens with most people is that their hair comes in gray after chemo but after a few months the pigment will return.  I hope she is right!  My hair is naturally straight and the hair that is growing in seems to be straight too.  During my TCH treatments (which were spaced every 3 weeks for the first 3 and then every 4 weeks for the last 3) from 08/05/09 to 12/09/09 my hair thinned but continued to grow in length.  The new growth that came in was originally gray but has taken on a blondish tint at this point.  My hair is naturally light brown so I hope this is just the pigment trying to return.  I am wondering too about how my hair will look as the new hair grows in.  I am imagining all of these little short hairs sticking out everywhere.  I tried to look at the nape of my neck with a mirror last night but I couldn't really tell that there was any new growth there yet.  I get my 1st herceptin only treatment today.  I'm anxious to see how that goes.   Take care!
  • NewportLori
    NewportLori Member Posts: 35
    edited January 2010

    The hair growing in around my ears is gray and white but straighter than the hair growing in at the nape of my neck, which is curly.

    I ended up losing almost all of my eyebrows and eyelashes and wish I would have used Latisse during tx.  I bought some two weeks ago at a CosmeticCare location for $90.  My left eyebrow are really sprouting and I see some growth on the right one as well.  So far, I haven't seen any new eyelashes however. 

    Happy new year and best wishes to all. 

    Lori 

  • Thankful1
    Thankful1 Member Posts: 11
    edited January 2010

    I was wondering if anyone knew anything about Color by Robert Craig.  I found some information about this hair color on the internet. It says that it does not contain any peroxide, ammonia, alcohol, etc.  Just wondering if this color would be safe to use?  Thanks, Angie

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010

    My chemo office is amazed that I still have my hair. They told me the caps wouldn't work but they didn't mind if I tried it. Now they are amazed and thrilled that it is working.

    Why don't more people know about the caps?

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    Hey shadow2356 -

    Same with my onc.  I am the first to try in Northern Virginia practice.  She has said "if it works, I will get a freezer put in my office so that I can stock them myself."  Let's hope my experience will be a good one and she can start a Cold Cap freezer!

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010
    Ang7- That would be great. I am the first one to try it at my Dr's office too. It is a huge practice. So many people just assume it couldn't work and don't try it. I am living proof that it works!! We all are!
  • Kelli1970
    Kelli1970 Member Posts: 32
    edited January 2010

    I am so glad it is working for Ang7 and shadow2356.  I too just started using it (my 2nd treatment was yesterday) and I am on Adriamycin and Cytoxan for the first 4 treatments and was told by Frank that those are powerful drugs and to expect about a 25% thinning.  So far my hair has thinned a little but I have thick should length hair so it doesn't seem any more than usual.  I am on my 15th day past my first treatment so I am keeping my fingers crossed for the next week!

     My Onco was a little hesitant at first but now she is intrigued.  At my first treatment, one nurse was wonderful with me trying it and another one was very blunt and said "I have been doing this for 20 years and it is not going to work - If I were you I would just shave my head".  Well yesterday when I went in for my 2nd treatment, some one must of said something to her and she warmed up to the idea (a little at least).

    I have been working with Geralyn (gmp300), who turns out is only lives about 3 minutes from my dad, and she has been a godsend through all of this!!  She invited myself and my husband to come see how the Cold Caps are supposed to go on and her husband talked with my husband as to what to expect and what needed to be done regarding the dry ice, temperature, fit, etc.  Geralyn has called an checked up on me to see how the treatments have gone and has given me so much advice regarding warding off the SE's.

     We are hoping to get the cold caps more known at the hospital that I go in the Detroit Area and a presentation is going to be done with a group of Oncologists in the next week and a half.  I am hoping I will be a successful testimonial like Geralyn and more people can find out about this wonderful product.

    Sorry to ramble on but I am finally feeling good about everything and wanted to post!! 

    Take Care Everyone!!  Kelli

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010

    Congratulations Kelli! I am glad it is working for you. AC is a tough regimen. I just went to my plastic surgeon for an expander fill. They asked how it is I still have my hair and I explained the Penguin Cold Caps to them. They were very intrigued. They want to see what happens and want to give their patients info on it. They do mostly breat rescomstruction so they deal with a lot of chemo patients. When I spoke to Frank Fronda he said some chemo offices are putting the freezer in and just charging a usage fee for the caps. It sure would be easier not to have to deal with the dry ice and taking the temperature. I too dealt with people who said I was wasting my money and it would never work. I do not know why so many people are doom sayers. I am so glad I found out about it.

    Good luck everyone!!

  • gmp300
    gmp300 Member Posts: 196
    edited January 2010

    Hello Everyone,

         There seems to be more and more of us on this thread!  That is a good thing!  That means more of us are trying to keep our hair thru chemo!  I found some information about hair products that would be safer and gentler to use instead of Johnsons Baby Shampoo (which tends to dry your hair)  that I got from Frank.  I thought I would pass them along.

         One thing he told me was to start to take silca compound.   It is great for your hair. It helps it to grow faster and get healthy again)  Let your doctor know the ingredients to make sure it is safe to use.  Kelli told her doctor and her doctor said it was ok to take but check with your own doctor first of course.  Kelli is taking it but I haven't got any yet!  LOL!  I want to start though because I think it will help my hair to grow faster and get healthy. 

         The Pureology shampoo can be diluted and is very mild.  It contains no sulfates or detergents that should be avoided.  Another product used in NZ but made in the USA is Giovanni organic hair care.  Their website is     www.giovanni.co.nz

         I hope these help--I will pass more info on as I get it.  Good luck with your hair!  And I hope everyone is doing good thru this hard time.

    kelli1970-glad to hear that everything is still going good and you sound great!   Thinking and praying for you!

    Best to All,

    Geralyn ( gmp300)

  • iwonalesiak
    iwonalesiak Member Posts: 3
    edited January 2010

    Hi every body I wish u all the best my mom was diagnos with brest cancer stage 2 have mastectomy and now will star chimo Taxotere  . I want her to try the cold caps she is living i NY Brooklyn where she can get the infor, about the cold caps there , Pls post me if any body know about at. Thanks for all the inf its very helpfull.

  • arbella
    arbella Member Posts: 20
    edited January 2010

    whixch pureology shampoo is it? see that they make quite a few. also can you buy at drugstores?

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    iwonalesiak -

    Just google "Penguin Cold Caps" and you should be able to email them your questions.

    Best of luck to your mom.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited January 2010

    Hi Everyone:

    I haven't posted photos lately....the chemo has been kicking my butt!  I've been feeling better today and wanted to post a couple of photos taken today (front and back) of how it's going.  It is still thinning but I can live with that.  If the new users scroll back a couple of pages you can see several older photos that I've posted as I proceed through this chemo nightmare!!!  It's almost over...I have 2 to go!!! 

    I forgot to add that my last chemo (#4) was on December 28th. 

    Thanks to all that have suggested the new shampoos...I'm ready for something other than baby shampoo...my scalp is sooooooooo dry from that stuff.  I talked to Frank the other day and he stated that I could color my hair...the top and sides are turning grey...but that I needed to use no peroxide/ammonia products and DON'T get it on your scalp.  I may wait unil all this is over with before shockimg my hair further...at this point I really could care less what I look like...other than the fact that I'm so very thankful I still have my hair. 

     14 Days Past 4th Chemo" 14 Days Past Chemo #4"