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Cold Caps Users Past and Present, to Save Hair

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Comments

  • NoSunshine
    NoSunshine Member Posts: 66
    edited January 2010

    iwonalesiak-the website for the penguin cold caps is:  http://www.msc-worldwide.com/and the inventor is Frank Fronda...his email address is: penguincoldcaps@btinternet.com.  He is very helpful and will answer all your questions and/or concerns.  I too am on taxotere along with carboplatin and herceptin so I know these caps work!  I was scheduled for 6 treatments and and am now 14 days out from my 4th treatment.  Call Frank and talk to them....it's a huge morale booster to be able to keep your hair during the most stressful time in your life!!!  PM me if you want more information.

    Carol

  • gmp300
    gmp300 Member Posts: 196
    edited January 2010

    Carol-You look great! It is so wonderful that you kept your hair! Frank told me that silica compound is great for your hair too! thanks for the pictures! Geralyn

  • iwonalesiak
    iwonalesiak Member Posts: 3
    edited January 2010

    U look great u have beautifull hair Carol tanks for all the inf I will @mail Frank can u tell me this cold caps u have to buy , rent or what and how many of them u need per chimo, and how much thay cost. Do u have pain from the cap , to many questions in my mind and looking for answer, Whan u go for chimo u bring with u or u live them there? Tanxs for all the inf, good luck to all , tanxs ang7 and Carol

  • NoSunshine
    NoSunshine Member Posts: 66
    edited January 2010

    iwonalesiak:  You rent the caps from the PCC company.  They are in the UK  and have warehouses in the US....I'm not sure about Lebanon but Frank would be able to help you with that...I know they use them all over Europe.  The price depends on the amount of caps that you would need and again Frank will determine based on your mother's hair type and type of chemo therapy she is having.  You will also have to pay a deposit which is refundable once you return the caps.  I am using 12 caps and put them on one at 20 minutes prior to chemo and them another one for another 20 min. prior to chemo then the next one I put on for 30 minutes and the actual chemo starts 10 minutes after I have that one on....then we change the caps every 30 minutes during the duration (my chemo is 2 hours) of chemo and then every 30 minutes for 3 hours after chemo....it sounds like a lot of work but you get the system down and it goes pretty smoothly.  There is no pain...just like an ice cream headache at first because of the cold but then your scalp gets used to the cold and after the first one or two I don't really feel anything.  I keep the caps in my freezer while not in use and then the day of chemo I put them in two coolers with wheels (the hospital is about an hour away) and on dry ice because the temps. need to be around negative 30 degrees F.  After chemo I take them home with me...and I wear them out of the freezer during the week to promote follicle growth.  I hope this helps but Frank would be able to explain it more as it pertains to your mother's situation.  Tell your mother I said good luck...

    Carol

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    Wow Carol -

    Your hair looks the same to me as in the first photo I saw of you!  I am still worried each time I wash my hair etc. but I do have faith in them.  3rd chemo is coming up...

  • mtri111
    mtri111 Member Posts: 67
    edited January 2010

    The shampoo is PURE RESULTS by Regis Designline.

     If you cannot find this in a salon, I posted a url for online ordering a few pages back. Very good product, and they also have a matching conditioner.

     Suggestions as to good no peroxide/ammonia hair color products that actually work (am dubious) other than Colormark, would be appreciated.

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010

    Now that I only wash my hair twice a week and its such a process, I feel like those fifties women. Sorry, I can't go out, I'm washing my hair!

    Thrilled to still have all my hair

  • iwonalesiak
    iwonalesiak Member Posts: 3
    edited January 2010

    Hi Carol tankyou for ur time writing me back very good info, my mom live in New York I live in Lebanon its not easy ,but my sister live in Portland so she take care of all the thinks need to do. Tankyou Carol u r almost there all the best from my familly

  • arbella
    arbella Member Posts: 20
    edited January 2010

    hi gals, have you ckd out the swedish product that they use in hospitals? www.dignitana.com...

    basically cold caps but one cap that stays cold...amazing. maybe we should all go to sweden for chemo??? arbella

  • geewhiz
    geewhiz Member Posts: 671
    edited January 2010

    Hi guys,

    No Sunshine --You look great! I am coming up on my 3rd TCH as well, and haven't noticed any major hair loss either.  So I will keep my fingers crossed. I am also doing the latisse fo eyebrows and eyelashes.

    With every strand of hair that comes out though, I panic!!

    Where do you guys get Silica from...is that just in the vitamins section or is that a prescription?

  • cs718
    cs718 Member Posts: 34
    edited January 2010

    Hi, ladies;

    I'm about to begin 4 tx taxotere/cytoxin on thursday and jumped through a lot of hoops to get my caps here in time (no thanks to UPS).  I just want to comment that I am determined when I'm through with treatment to make a lot of noise about the FDA's refusal to approve this treatment.  My two oncologists immediately approved my using them (no concern about the .025% of scalp metastese), but the nurses were like, "Oh your hair will grow back, what's the big deal?  It's so much work to do the caps."  Well, if the FDA would approve them, it wouldn't be so much work because the nurses would be changing the caps and keeping them on ice so the patient could relax during the treatment, as they do in the way more civilized U.K.  The other thing is that, not only is it shocking for a woman to become bald, even temporarily,  but your surrender your privacy and dignity when everyone around you can know that you're going through treatment for cancer, including the people on the subway!  The fact is, given the difficulty of undergoing this treatment, which is awful enough by itself, the FDA and whatever business interests are involved need to know that we will not accept this.  So, I hope to get on this case in the spring, beginning with an email petition from users of the cold cap who've had to work so hard to give it a shot.  You're pioneers, all.  It just ticks me off and makes me more determined to do it.  And thanks to all for the various tips on hair care and cap use, etc.    

  • arbella
    arbella Member Posts: 20
    edited January 2010

    hi gals,especially cs718. i am halfway done with my 4 rounds of tc....day 33 and still have hair. nurses everywhere seem to hate these because they make their lives harder and because other patients of course who dont want to be bald start asking questions....well thats too bad for nurses! they can be downright mean! why dont they shave their heads if it is so easy to do??

    anyhow, at one of our hospitals here in sf the docs are about to do a clinical trial on the dignicap from sweden. it is designed for hospitals and has been used in sweden for a decade. it is a giant and heavy machine that stays cold...no need to change caps...and looks a bit like the old fashioned hair dryers you sit under. 2 people can use each machine at the same time with 2 separate caps. i think it runs around 75,000 dollars so obviously not for personal use. while it is too late for me and i am very happy with franks caps, i am thrillled that some day hopefully soon this may be part of the hospitals normal protocol.

    it got to the point so many women were asking about it that they couldnt ignore it anymore. hopefully it will get to that point in you area as well.

    arbella

  • arbella
    arbella Member Posts: 20
    edited January 2010

    gee whiz...silica in vitamin section of vitamin/health food shop

  • cs718
    cs718 Member Posts: 34
    edited January 2010

    Thanks for the information, Arbella.  We are so unenlightened, it's pathetic, especially when you consider the epidemic numbers of women who are undergoing chemo in the U.S. every day.  I also think since this is a particularly female issue, it's put on the back burner as usual.  There's something amiss, since the risk of scalp mets is so low, but it's ok to take chemo, which, among other things, increases your risk of getting leukemia!  Like I said, maybe I've found my cause; whether or not the cold caps work for a particular person,  having the option to do it is essential.   

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010
    cs718 - Hello! I sent you a private message. It is a big deal not to lose your hair. Also, 10% of the people who use taxotere have permanent hair loss. There is a big thread about it on bc.org. In my case I feel like I am getting to win one battle and it is a big deal in every way for me. It is hard to do. You have to get the dry ice, pack the cooler, lug it in, get a helper, check the temp, knead it, etc, etc. But, it is worth it. If the chemo places get on board they can put a freezer in and that would make it sooooooo easy. I hope they start doing it. People should know that the hair loss doesn't have to happen.
  • geewhiz
    geewhiz Member Posts: 671
    edited January 2010

    Will look for silica...thanks arbella!!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited January 2010

    Hi Geewhiz:  Thanks for the compliment...most days I don't feel like I look so good.  I'm so sick of this chemo I could scream!!  My eyes are tearing, my noise is running, my noise is bleeding all the time, my hands and ankles are swollen, the balls of my feet and toe joints ache, the site where my port is hurts, and I'm just plain tired......I could go on and on with my rant but I'll stop for now....I know the chemo is saving my life but I'M SICK OF IT!!!  And I'm like you...with every hair that I lose I panic....my hair still thins everyday and I feel like if it keeps on I'll have to get a short haircut...which I'm trying to avoid!  Most days I wonder why I'm not more thankful for this treatment and the fact that I've been able to keep my hair and rid myself of this cancer...I guess I'm just having a bad day and I know most of you can relate to that....so sorry for my rant!!!

    CS718:  I'm with you on the cold caps bandwagon!  I think the nurses are hoping that I will lose my hair so they can be right...even my Dr. said they wouldn't work...HA!!  I've proved them wrong so far.  My 5th treatment is this Wednesday (unless my blood values are down) and I will be so ready to be done with this portion of the treatment.  I will do whatever is necessary to get the word out about these caps...I agree they are hard work and with all the money that we pay for the treatments you would think the hospitals would be able to afford the coolers and training for these caps.  My bill is already in excess of  $130,000 (don't know how much insurance is going to cover yet) now which is without the surgery and radiation and I go to a cancer center that is FULL of patients...so I'm sure they could afford a freezer or two. I'm the only one they (chemo nurses) have seen that is wearing these caps.  It amazes me that no one else at MD Anderson has heard of these or is trying them.  We need to do something to get the word out about these caps....screw the FDA!  Thanks everyone for listening to my rant...again I'm just having another bad day....

    Carol

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010

    I have written to a lot of websites about the caps. Oprah, Susan Komen, Prevention magazine, no one has written me back. I have no personal agenda when it comes to the caps. I just feel like women should know the hair loss can be prevented. When I was getting ready to start chemo and going to use the caps everyone thought I was crazy. They said it would never work. My chemo office is now amazed. They can't believe it works. They are still skeptical and say I may still lose hair. I don't think so.

    We do need to get the word out!!

  • mtri1111
    mtri1111 Member Posts: 12
    edited January 2010

    I am only the second person to use the caps, and  in a metropolitan and academic center, here in RI. I was neither encouraged nor disdained, but tolerated and accommodated, thank goodness. It is appalling how little is known about this system, and at very least, Frank should see to it that a Coldcaps flyer  or brochure is tucked into the folder of materials distributed to patients.

     Despite the explanations that have been proffered, it is unclear to me why the FDA  approval is so critical for this to move forward. Is this really a "medical device"?

    Also, a good HVAC engineer could probably design a portable unit with the best of the technology serving both cold caps and the dignitana systems,making it MUCH easier for general use. Am thinking of young patients (teens) as well.

    I feel that sexism abounds, as well as an often patronizing attitude towards women (even by women physicians) in the "dear, it will grow back" conversation. One can imagine the conversation if it concerned not hair, but a man's important parts, that would be scheduled for loss and regeneration sometime down the line! I think the outcomes for action would be very , very different.

     I am not an activist at present, but after 3.5 out of 6 cycles complete of taxotere/carboplatin, for stage II ovca, assiduous use of the cold caps has been successful, and an amazing godsend. IT OUGHT TO BE EASIER!  An organized form of activism is needed.

     And  the Silica seekers: Nature's Bounty: Hair, Skin and Nails  has it, and the biotin.

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    Hi all,

    I actually changed my oncologist after my mastectomy because the one at the major Cancer Center where I had my surgery would not allow the Cold Cap.  She flat out said No and that I needed to accept the fact that my hair would fall out and move on.  I moved on to another oncologist in the Northern VA. area who said "if the hair is that important to you than go ahead and try it."

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    I would like to know if you are using conditioner and if so, what kind?  I spoke to Frank about the knots in my hair and he said find out what kind of conditioner the other ladies are using...

    Thanks.

  • mtri111
    mtri111 Member Posts: 67
    edited January 2010

     PURE RESULTS  by Regis Designline.. they make both a shampoo and a conditioner. Very satisfactory. There are also some good sulfate -free spray- in leave-in conditioners; one by Alterna that is nice.

     In other news: I tried the Robert Craig hair coloring, mentioned  in a recent post (also very mild, ammonia and peroxide free). However, I don't think I left it on long enough..just painted it on roots,and left if for about 20 minutes. It needs longer to do its job, I suppose, because it didn't do much, and I got nervous (probably needlessly) after 20 minutes.

    Sooo, Colormark is the instant gratification way to go.

  • shadow2356
    shadow2356 Member Posts: 93
    edited January 2010

    Had my third TCH yesterday. Halfway there! My head id happy to be warm and lightweight again.

    Good luck to everyone starting soon

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited January 2010

    I was wondering if anyone is using the Cold Caps with Adriamycin & Cytoxin?  I am currently using them and am on Day 28 with alot of thinning (within the last few days) but still looks like I have all my hair.  I am just looking for some feedback from others that are on the same regimen.  I am so glad I am using them and glad I didn't listen to everyone who said they wouldn't work!!  Now alot more people are finding out about them because I have been telling everyone!!

     Ang7:  I have been using the Pure Results by Regis Designline every Sunday and Thursday and it has helped with the knots I have been getting.

  • arbella
    arbella Member Posts: 20
    edited January 2010

    kelli...have you lost any hair elsewhere? i am on day 35 and dont see much body hair loss yet

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited January 2010
    Arbella... I have not lost my eyebrows or eyelashes yet but have lost some other body hair.  I went for treatment #3 out of 4 of the AC so I am hoping not to lose much more over the next 2 weeks.  Then it is on to 4 rounds of Taxol so that will be alot easier on the hair I am told.  I am keeping my fingers crossed!!
  • gmp300
    gmp300 Member Posts: 196
    edited January 2010

    Hello Girls,

         Wow-this thread is really growing!!  Iam so glad to see and hear of so many using the cold caps.  That is what we have to do is tell everyone to get the word out and than more patients will use them and the doctors will keep seeing and hearing about these Penguin Cold Caps!!  And then they will not be skeptical and maybe get a freezer in their offices for their patients.  you have to remeber that this is groundbreaking here in the USA (even though they have been used around the world for many years.  It is up to us to get the word out!  If anyone has any questions you can pm me to.  Iam so excited for everyone.  Hope the rest of your treatments go smooth with very little side effects.  Keep drinking water....

    Take Care,

    Geralyn

  • Ang7
    Ang7 Member Posts: 568
    edited January 2010

    3rd treatment done, 3 more to go...

    I griped at my right hand man Mike today as he was giving the Nurse a tutorial all about the Cold Caps and not paying much attention to me.  She said she could not believe I still had hair and must have asked about 50 questions.  Nice for her to get information, but not at my expense.  (Someone was feeling a bit sorry for herself...)  He said in the car that it was good to have the Nurses be interested and to share our knowledge etc.  I know he is right...

    Anyway, warm head now and feeling no SE's probably until the weekend.  Just do not want to vomit like last treatment.  Will be drinking like a fish.

  • cs718
    cs718 Member Posts: 34
    edited January 2010
    ANG7,   Next time he can direct her to the website! Kiss  This is definitely the one important time for it to be about us, but men get distracted; they don't get it as well as women do.  I had my first TC treatment yesterday and the caps were hard to bear; i had instant nausea when I put them on and from the effect on my inner ear somehow, like very bad motion sickness which i do not ordinarily get,. i had to concentrate and hold a squeeze ball til it abated after 5 long minutes or so; it did get slightly easier throughout the day and i was able to finish l4 caps. i woke up this morning for the first time without knots in my stomach from the anticipation, more worried about dealing with the caps than the treatment.
  • cs718
    cs718 Member Posts: 34
    edited January 2010

    Geralyn: I promise to take this lack of information and response somewhere as soon as i get my real life back in a few months.  Talk about going the distance in the face of adversity.  Given the huge cases of women with breast cancer, it defies logic that we are out here by ourselves across this supposedly progressive country shlepping around coolers and dry ice and having to persuade health care to let us do it while we undergo a dreadful treatment at the same time.  PS. Someone asked one of my helpers if she worked for the Cold Cap Company!!  Think of the job opportunities too.   Best wishes ongoing.

    Claudia