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Cold Caps Users Past and Present, to Save Hair

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Comments

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    Hey Thank you for the comilments, not looking like a chemo patient is a full time job!  Dexxy you are so lucky I heard great things about Digni Cap, I wish I was able to use them I called but they are not available in my area. Its almost no muss! No Dry ice, no coolers, no smell ! Your lucky!

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    nmoss - You look GREAT!! My hair texture is so much like yours and I was getting nervous the cold wont reach the scalp properly:-) did you part your hair when using the caps? I was even thinking of parting my har 4 times (middle and side) not sure yet. Please advise:-)

    dexxy - I start chemo on 7/7 also, so you wont be alone:-)

    Thank you ladies. 

  • sebm9
    sebm9 Member Posts: 488
    edited June 2011

    dexxy: I don't think anyone here has used the Dignicap -- I only know of it being available at UCSF -- but please keep us posted. Is there a hair care protocol which accompanies it, as with the Penguin Cold Caps? (i.e. no washing in warm water, etc.) I'm interested in all the particulars. Best of luck with your treatment!

    mdg: You look fabulous! I could never, ever tell that you had thinned hair, gone through chemo, had major surgery, etc. You are full of life!

    Re: parting hair: I toussled my part inbetween each cap change, with my fingers, so that the same part line wouldn't be constantly exposed to the cold. It worked well that way. 

    Susan 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    Thanks Snoopy, the bad shedding is starting again Cry! I am 6 weeks PFC so still along way to go, wondering when it is going to stop. My hair is not chemichelly treated other than old color but Chemo really dried my hair out. I used to have to wash every 2-3 days now I can go a week or two and no oil at all. I parted my hair in the middle. But its best to try to get the caps to cover your scalp evenly, not sure if 4 parts will allow that to happen.  Having thick hair is a blessing & curse, it really insulated my scalp, but then it also covers the bald patches.

    B Hodges I am probably 2 months away from a trim and goodness do I need one!Provided this crazy shedding calmes down soon.

    Good luck!

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

    I too changed the position of my part each time I changed caps.  As far as a trim....I got desperate and just trimmed an inch off the bottom...it looks straw-like.  I still need to get a few inches cut off the bottom to make it look better, but I am going to wait a few weeks.  I go back to work in a few weeks...I think a cut and color right before that will be in order. 

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

    NMoss:  Congrats on all your good news.  Happy for your hubby and curious if they find out what it is. 

    I now have the little stubbies showing on my part line and as it grows it is going to be rather weird.  I broke down (I know way too early) and snipped just a tiny bit of bangs because I couldn't see.  The ends need a good couple inches off them but that will wait for a couple months.

    Lots of new hair coming in and especially along the temple area and ears.  Exciting!

  • dexxy
    dexxy Member Posts: 88
    edited June 2011

    ok off to meet with the Ladies at UCSF, I'll get all the info on the DigniCap protocol and fill you in.

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    All the Best dexxy; do let us know.

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    how often is everyone washing their hair? i'm washing once a week ... but since i lose sooooo much hair, i'm thinking of delaying it a bit.  It certainly doesn't feel dirty - it's so dry.  I wash because i feel like i probably should!  What's everyone doing?  I've done 5 of 8 treatments.  3 more taxol left, and not much hair. I'm trying to do what i can to hang on to what little i have left!

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    nmoss - thanks for mentioning the SMELL of the caps. I realize it's just a freezer smell, but they make my sick to my stomach.  It's so bad that i can't even open the freezer without getting flashbacks!

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Hi LivCar: I'm not a good example of hair washing. I wash every 5 days because my hair is so oily and I have scalp build up. My hair and scalp feel so gross and itchy that I must wash. My body is still producing oil after 2 tx. My hair is also fine/thin so a little bit of oil makes it look and feel horrible,



    If your hair doesn't feel dirty or oily I don't see the harm in not washing. Just as long when it comes to a tx your hair hasn't been washed in 3 days.

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

    LivCar:  I've only been washing every 10-12 days because I hate losing the hair when washing but last washing, I lost very little but I'm still shedding.  At the 10 day point, it is getting greasy though!  I've got build up on the scalp too and can't wait to do a good shampooing.  I'll probably stick with the organic shampoo because I really like it.

  • dexxy
    dexxy Member Posts: 88
    edited June 2011

    hi girls, I'm back

    so the DigniCap cools to 5 degrees C- so around 41 degrees Fahrenheit.  So similar to cold caps, I only have to wear it 30 minutes before and around an hour after treatment.  Interesting they recommend wetting hair before cap is put on to improve thermal contact.  Also I can wash twice a week. gentle hair care, but can still use a conditioner. no dryers or heat.  They recommend a nourishing oil mask once a month.  No color, bleach etc for 6 months.  The fitting sounds about the same, lots of making sure all parts of the head are in contact with the cap.  I'll know more upon my first treatment which is in 1 week. 

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Hey dexxy. Wetting the hair makes sense for dignicaps, it will conduct the cold to the scalp. Don't forget an electric throw to keep warm thru out.



    I think you will be the first here trying that system. Keep us posted. Dont forget to ice fingers and toes while on taxotere. Pop ice in your mouth as well.











  • dexxy
    dexxy Member Posts: 88
    edited June 2011

    DebRox - during treatment? ice on fingers and toes? or after? sorry must have missed that anything you can think of please let me know

  • momof4girls
    momof4girls Member Posts: 28
    edited June 2011

    Dexxy - I am using cold caps at UCSF.  There was a woman next to me using the dignicaps a week ago.  She didn't seem as cold as me!  Also, UCSF does not allow us to bring in electric blankets unfortunately.  They do provide heated blankets and I brought my own fleecy blanket so I stayed fairly warm.  Good luck with your first tx!!!

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Dexxy: 10 min pre until 10 min post taxotere infusion, ice fingers and toes. It apparently helps prevent neuropathy and protects your nails. I also wear nail hardener and rub coconut oil into the cuticles. My nails look great. Still counting down the days for a salon mani/pedi. Have one day before your first tx. You shouldn't have one until safely finished.



    In addition, bring ice cubes to suck on during taxotere, same as fingers and toes for timing. I have not suffered mouth sores, funky taste buds or thrush. I also brush with biotene toothpaste and swish with the mouth wash a week after tx. Could be luck, could be coincidence. But I'm going to go continue. Maybe uscf has an ice machine.

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Dexxy: whoops, I forgot to mention how I do it. I purchased inexpensive bags of peas. I fold them over my digits and secure with elastic bands. Works extremely well. I find this harder to tolerate than the caps. Do not discard the peas, refreeze and save for next time.



    Also now is the time to ensure things are moving thru your body relatively easy, if you catch what I mean. Make sure you are not constipated. I actually eat a few prunes every day and a few days before chemo, I take miralax. Works like a charm.



    Momof4girls: Pcc girls will be colder versus dignicaps. Dignicaps maintain a consistent temp of -5 C the entire time requiring no cap change. Pcc girls have to freeze their caps to a temp recommended by frank based on their hair consistency, then your body temp and air temp "warms" up the cap, requiring a change. We have to start colder to keep scalp continuously cooled at a consistent temp.

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Another tip: I know UCSF was performing a clinical trial using Latisse for brows and lashes, so I believe they will support the use of it. If cost isnt prohibitive I recommend using before first tx.



    I started using shortly before my second and am now noticing a hole developing in my left brow, fillable will powder. I don't know if this was preventable using Latisse. I do not know if it will work in preventing future loss, but I do know my lashes are growing. Hey anything to maintain!

  • brca1babe
    brca1babe Member Posts: 38
    edited June 2011

    had my first ddAC yesterday with the caps!

    my husband and I were a bit nervous about getting it all right, but it seemed to work well in the end.  the temp over the caps was -34 to -26, the sides not nearly as cold, hope that is ok (my temp recommended by Frank is -31 to -32).  I don't think I got my nape or sideburn area cold enough... we'll see.

    after the first few caps, I  started wondering if they were on tight enough or cold enough because I coudln't feel them... as you all predicted.

    and yes, the ativan in my premeds worked wonders!

    it was a first for my major academic medical center, but they were fairly accomodating.  my nurse asked lots of questions and said she had heard about something like this being tested.  she was pretty open to the idea and was able to time the adriamycin infusion to my cap.

    feel pretty wiped out and quesy after AC... so back to bed.

    thanks sistahs!

    brca1babe / sarah

  • keeppositive
    keeppositive Member Posts: 181
    edited June 2011

    Hi everyone: I have to comment that I never noticed a smell from the caps and my husband is very sensitie to any smell, so he would have mentioned it if he noticed any smell. I read a few of you were nauseated from the caps, I can't understand why. I found the whole experience very doable and even the very cold only lasted a few seconds with each cap and even that was very doable--like a bad ice cream freeze. So sorry to hear others had trouble. I have lost very little hair, maybe 2 snack sized baggies full. Of course, I probably didn't collect all that came out. I still loose hair when I wash and when I comb, but less and less. My hair is also extremely dry, so washing once a week is okay, since hair is so dry. I have been wetting hair every once in awhile to calm the frizzies-due to the dryness.

     I bought Clairol Beautiful Colletion-no peroxide and no ammonia. When can I use it???  Do I have to wait the full 6 months to do a color without chemicals or is that for regular color??? Hair is very grey mixed with brown and tan and dark brown-some people like it--I don't! I think it adds years onto my appearance.

    I also iced toes and fingers and found that much more painful than the caps!! I sucked on fudgeicles/fruit ice pops/ or italian ice cups during chemo-better than ice cubes-yummy!

    mdg: you look fantastic! I don't see any roots or thinning hair--you just look great!!!

    nmoss: sorry couldn't get your photos. But I'm sure from others reaction, you must look great!!

    About the digna caps--I definitely want to hear all about it and how it is to use it, the outcome---the whole experience!  I thought this would be the absolute best way to do this process, when I heard about it. It seems the easier way to go and if works, I think it should be great!!! 

    My best to all you new Penquinistas, and all you veterans and all those in between!!

     We are truely pioneers!! Yesterday a young man at the radiation center, who will be doing chemo after radiation, asked me all about the caps. I was thrilled to help him too!!

    Keep Positive! Keep Laughing and Smile alot!!

    Nancy

  • keeppositive
    keeppositive Member Posts: 181
    edited June 2011

    Hi Again:

    I just wanted to add I am 10 weeks after last chemo and have completed 23 out of 30 radiations. Just wondering when I can use the non chemical hair color?

    Also I got a mini haircut 2 or 3 weeks after last chemo and need a full haircut now! Will get one this weekend.

    Nancy

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited July 2011

    Hi everyone - hoping all is well.  Sounds like people are doing great...shedding...but that is NORMAL!

    I am now 9.5 weeks PFC.  I colored my hair eight days ago (if you remember the "organic salon" story).  My hair is still brown, I have been blond all my life.  It is just another crazy turn on the crazy journey.  Anyway, the GREAT NEWS is that my hair did not shed or fall out.  While there was no ammonia, there was a lot of peroxide.  I think this is how salons characterize it as "organic".  Anyway, no shedding/fallout from a very permanent color.  Additionally, I used a "color stripper" to get my hair back to blond that same night.  More chemicals, this time, the harsh ones.  Again, no hair fallout with that.   

    I have another permanent hair color appointment at my regular salon in 4 weeks, which will be 14 weeks PFC.  I am hoping for better color with no shedding....

    Have a great 4th everyone!

    Annie 

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Great news Annie.  I look forward to getting my blonde hair back.  My avatar sports blonde hair, but I had my hair dyed to my natural dirty blonde color a month before chemo, in anticipation of cold caps.  I didnt want the regrowth to be so noticable along with the new grey temples.  Hate this aging thing.

    So I know what you mean.  I see myself with brown hair now, while it isnt really brown, it still doesnt look like me.  I want my blonde highlights back as soon as I can!  Thanks for sharing.

    Debby

  • yizbieta
    yizbieta Member Posts: 77
    edited July 2011

    Off topic to the  general population of cold cap users -

    did anyone get sores on their skin from the taxotere infusion? I did not have them until the fifth and now I am done and they are popping up on my hands and chest/breast area. I called the doc and he said to put an anti itch on them (they ITCH terribly) and call him again if they persist.  anyone have any ideas? There is one on my chest that is really bothersome and has been there about three weeks- the longest of all.

    thank you for anything you know aobut these!

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

    OMG...Elizabeth..I have been dealing with the rash issues since before Easter and I finished my TCx4 on 5/4!  I have been on and off steroids.  I have been using topical steroids too.  I have been to my internist twice and my dermatologist twice too (again this morning!).  I just can't get it to go away!  It goes away and then comes back.  Now it is on my chest and a little on arms...some days on my torso.  My skin is super dry and bumpy (like chicken skin) no matter how much lotion I put on all day long.  Skin feels super sensitive.  My chest is red and blotchy and burning from itching.  When I had it on my legs during chemo, I had bruises ALL OVER my legs just from itching (due to blood counts).   I must of had 20+ bruises on my left thigh alone at one point.  Mine do not blister...that has me concerned it could be something different than mine.  Some people have gotten shingles or folliculitis.  I do not have that.  My docs think mine is an allergic reaction.  My dermatologist today could not put me back on steroids as I had exchange surgery last week and it would slow the healing so she gave me a few more things to try.   I am using a new anti itch lotion (found in the first aid section of the drug store) called Sarna.  She also wrote me an Rx for a topical cream called pramasone and an oral rx for a different antihistamine called hydroxyzine HCL.  I used the sarna a few times to day and it is helping a little.  I also find a cool shower a few times a day helps and then I reapply the sarna.  I am going to try the antihistamine before bed in a few....Feel free to PM me for more infor.  Oh and this rash did not appear the first time until after tx #3....fyi.  I know how bad it is....I cried at the derm office today as I have been dealing with this since mid April on top of chemo and surgery last week...I am at my witts end with it!  I just lost it today....I can relate to you discomfort.  I am sorry you have it too.  I guess I would try a dermatologist...if yours are sores, that is different than mine.  I don't know if they would recommend what I am doing....

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

    I had the rash too but it was limited to my arms and face and started about a week after TX and only lasted two weeks, cleared up in time to be zapped again.  Although, I do have some now but not bad and I used cortizone cream on them and that seemed to help. 

  • sebm9
    sebm9 Member Posts: 488
    edited July 2011

    Dexxy: Icing your fingers/toes prevents neuropathy from the chemo. You can pre-chill (same as you do for the scalp) but just use frozen gel packs, covered ice cubes, or a bag of peas straight from the freezer. They shouldn't be as cold as the scalp!

    Thanks for the info on the dignicaps. Do they also recommend the heavy hydration to detox? It helps the liver detox the chemo, and liver function is very tied to the hair retention. Just curious!

    Thanks for sharing this information with us!

    Susan 

  • yizbieta
    yizbieta Member Posts: 77
    edited July 2011

    Hi mdg-

    I have actual sores- individual ones, here and there-and some closer together- maybe different from what you have...but thank you for letting me know what they are doing for yours because there may be some connection as to stopping it.  I suspect it is a kind of reaction as well or an allergy. I did have a reaction to taxotere the first and second time and they had to give me a lot of Benedryl in my drip before all my infusions after that.  I also got veins that were stained- and still are and that itched like crazy too. I knwo there are cummulative effects of this stuff. I guess this is one of them. I have looked it up on google and not much but does say something about rashes and sores... just not much. These sores are not healing... but not getting infected (thank you nuelasta!!).

    I keep seeing new ones....under one breast , and also on top. Yikes. I will keep looking but thanks for the input!! This stuff gets more complicated all the time doesn't it????

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited July 2011

    Hi everyone,

    Re dignicaps-  I emailed the company who made them before I started treatment  and they are only allowed to be used at UCSF for clinical trials. It will be very interesting to see results from the trials.  I am just grateful that I was able to use the Penguin cold caps.  I still have my hair!!!!

    I have only one more  infusion to go and then just herceptin and possibly radiation 

    Question for those of you who went thru hot  summer months using caps:  .  I exercised today (dance aerobics)  and my hair got fairly wet with sweat.  With the summer, and heat,  did any of you rinse your hair with cold water more than once/week. My head was so hot and sweaty after exercising I decided to just pour cold water over my head with a cup.  I hope this is ok.  It is not really washing it and I thought the cold might be better than having a hot head.  I know we are only suppose to wash once/week but this is not really washing.  What are poeple's thoughts on this?  Thanks

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