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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Thanks susan; I will check the grocery store and the hospital, not sure if the hosp will give me the info coz the nurse was soo against the PCC today, he kept telling me that they dont work and that they are only 50/50 chance and they are hard work and expensive!! and i was there telling him that i will prove him worng.. he went ahead and gave me a prescription for a wig he said just incase i loose my hair while using the PCC. I also mentioned icing my finger nails & toes while on chemo and he was also agianst that, he said that it doesnt work but if i want to do so, i should do. 

    I am feeling really LOW today, i have a headache (i think because of all the info and the decisions that i have to make) I feel like everything is tumbling and I feel so overwhelmed, stressed, scared, anxious etc etc... aaahh how i wish i had a magic wand that i could wave and this part will be over!!

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    Snoopy73 - don't let all this get to you.  Find joy in every day, take one day at a time.  Trying to save your hair will take the focus away from everything else.  Let the docs take care of the tough stuff.   You'll be fine.  We all know how you feel.  I just finished my 5th of 8 chemos.  Can't believe i'm more than half way.  It really does go fast.  Hang in there.

  • ordinarymammal
    ordinarymammal Member Posts: 29
    edited June 2011

    http://dryicedirectory.com

    They list 4 dry ice suppliers in the 617 area code and 1 in the 857 area code.  

  • quill
    quill Member Posts: 13
    edited June 2011

    Snoopy73-You will be fine and I do think the caps take our mimds off the tx.

    Arlene-I have not been on in a while and I am so glad that you are done!  I have been in the hospital with so many infections in my expanders that I had to have them taken out last week.  I look like a boy but hopefully will stay healthy for the next 3 tx that I have left.

    For all of you just getting started, the shedding does slow down a great deal after the initial shed.  I think the satin pillow case is key and washing hair in shower vs the sink helps a great deal with tangles even though it is tough standing under a cold shower.  Just put your head under so your entire body is not so cold, then, put hair in a shower cap after washing and enjoy the warm shower!!!! 

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Snoopy: we can all relate only too well.



    My Onc and nurses in her office are negative re: cold caps. My MO didn't really want me to do them, I think because they cause a lot of commotion in the infusion rooms. And the nurses have to work with you timing wise, so they are opposed. They are thinking about what is best for them, not the patient. It's funny though, when I have to call the office, they're all asking how's my hair. Well after 2 rounds of TC it's still here. I secretly think they want it to fail.



    To be honest, the caps are a lot of work, not washing frequently and babying your hair is a pain, but it is empowering to be in control of something. For me the hardest thing about chemo was facing hair loss and I am controlling that. The best thing is not projecting you are a cancer patient. No one would know by looking at me that I'm going thru chemo and I like it that way.



    There are a great bunch of women here at all stages of cold cap use. They work. You will get thru this, you have support of everyone here. Hugs and best wishes.

  • brca1babe
    brca1babe Member Posts: 38
    edited June 2011

    hi ladies,

    starting ddAC next week with PCCs.  Might not work as well due to the chemo regimen (seems there is more success with TC) but I am going to give it a try.

    can someone here tell me the size of the cooler that I need ... about?  I think I'll have 8 caps.

    thanks

    skr/brcababe

  • keeppositive
    keeppositive Member Posts: 181
    edited June 2011

    Hi All:

    So sorry that  sime of you are nervous, scared, hurting etc. Really it isn't as bad as you think, especially if you do the cold caps, they really do take your mind off the chemo. The only time I was even aware of it was when they stuck the needle in. That always hurt, because I have small thin veins-always have. Have found a little help for that too---drink lots of water berfore your infusion, it pumps up your veins!!

    As far as Rads are concerned, they will either give you a cream to use or tell you what to buy. I use Aquafore-they suggested it,(Sloane Kettering)where I go for Radiation treatments. Its about $6 and change at CVS.

    As far as tired and fatique go, my medical oncologist, who did my chemo, said to walk, walk, walk!!! That will oxegenate your red blood cells and energize you and prevent you from becoming fatiqued. She suggested it for chemo and rads. I have done it every day and have not been very tired or fatiqued--only time was when I missed my walking. I did it in the winter in the snow and in 17 degree weather. It worked!! Now I am doing it in the summer. You don't have to walk fast or do it for miles, just get out there and walk. You will also build up stamina and be able to walk more and more and go further and further. You may only start out doing a block or 2--that is fine, but the more you do it, the more you will be able to do.

    Good Luck to you all!! Keep Positive!!

    Nancy

  • keeppositive
    keeppositive Member Posts: 181
    edited June 2011

    Hi Again:

    I have a question again, did anyone out there color their hair before 24 weeks or 6 months? Any one do it after 2 months PFC? Also couldn't find Clairol "Beautiful", but they have Clairol "Natural Instincts" It says it is amonnia free--doesn't say anything about other chemicals. Any input will be appreciated. Thanks

    Keep Positive!

    Nancy

  • momof4girls
    momof4girls Member Posts: 28
    edited June 2011

    keeppositive - I have a question about the walking.  I am a week post tx 1 and I have tried walking but I get so light headed (I even fell down this morning when I got up too fast).  Did you experience this?  I plan on trying again tomorrow but only walking a little bit, maybe a block or so.  I was really active pre-chemo and really miss the activity.  Did you start really short distances and build to longer ones? I am certainly encouraged by your story and by the swimming sebm9!

  • Lmflynn
    Lmflynn Member Posts: 273
    edited June 2011

    Hi there~ I colored my hair at 5 weeks PFC with the Clariol no ammonia no peroxide I got at Sally's ...no ill effects..because it was semi-permanent colored again at 10 weeks and again at 14.... Then took the plunge at about 18 or 19 weeks back to my normal coloring...my hairdresser was super careful not to go all the way to the roots..all has been ok except for dry scalp now....



    For those of you confronting negative nurses and oncologists...most of us encountered the same thing and proved them all wrong!....actually even at my 3 month check up still thought most were upset I didn't actually lose my hair.. You know I got to the point where I was happy these negative people didn't matter... To me at all....feel sorry for those that can't encourage and learn new things.....



    I'm 5 1/2 months PFC....things are good!

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Momof4girls: not sure what chemo you are on, but that is a worry if you are that light headed. Are you properly hydrated, including electrolytes? Sodium and potassium are important as well.



    A week out and being that light headed, I think you should talk to your mo.



  • keeppositive
    keeppositive Member Posts: 181
    edited June 2011

    Hi There Everyone:

    Momof4girls: I did build up slowly, but it got going relatively quickly. The light headedness could be from the other drugs they give you, Definitely talk to your medical oncologist about it. It could be from Benydril(or Benidryl or however it is spelled). I got tipsy from it on infusion days.

    Lymflynn: What is the name of the product you used? I can't seem to find any that are chemical free. I guess I will wait a week or 2 more to color, but need a name of an acceptable product. Thanks.

    Keep Positive/Laugh/and Smile Alot!!!

    Nancy

  • Lmflynn
    Lmflynn Member Posts: 273
    edited June 2011

    Hey Nancy~. Clariol Beautiful Professional Collection Semi-permanent. Found at Sally's Beauty Supply. Hope it helps....



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

    Hi all:

    Guess I'm one of the rare ladies whose doctor was not against my using the caps and they even set me up with a special room since we had so much stuff.  Her only comment was about the possible scalp mets but she got over it really quickly and was very supportive as were all the nurses and they were so willing to work around my timing of the caps too.  I got lucky!  My onc even told me that there weren't too many who used the caps but everyone who did had success.

    Sure makes chemo easier when you have support.

  • sebm9
    sebm9 Member Posts: 488
    edited June 2011

    Snoopy73: Ask that *$&#!* nurse for the name of the Patient Advocate at the hospital. The treatment you have received is alarming and is clearly causing you great anxiety at a time when you need compassion and support, starting with your health care team. Anything less is unacceptable. Your nurse does not get to make this very personal decision for you. Every member of your care team is there to support you while going through your treatment choices, including your decisions on how to treat the SEs of chemo. Alopecia is a SE of chemo. Your nurse's attitude is unprofessional and, moreover, unkind. And, frankly, imo it is the sign of a not very good nurse -- one who is not willing to learn about new therapies and treatments. This kind of closed-mind thinking is a Red Flag, makes me extremely nervous. This nurse clearly lacks compassion and vision, and you've just got to wonder what other skills he/she lacks -- can they measure meds properly? can they work the IV properly? can they chart properly? I'm serious. (I work in a hospital.)

    momof4girls: I agree with the others, check with your MO by phone right away re: light headedness.

    keeppositive: My radonc has a non-traditional, very effective method for treating the skin: good old-fashioned cornstarch, patted on with a powder puff 5-6x day beginning with the very first treatment. At first it got all over everything, so I poured a little into a stray 'orphan' sock and tapped it on my skin like a powder puff. There is also a liquid cornstarch, which I used while at work so it didn't get all over dark pants and skirts. My RO did a paper on it, and other ROs have been joining in. I had a very long rad treatment plan including 8 boosts to the surgical site, but it was only the last week where the skin began getting red -- a single dose of aloe vera gel cured it instantly. I never had itching or discomfort, never had fatigue, remained as active as I had during chemo. My skin texture is fabulous, with an ever-so-slightly tan line to the treatment side one year later. I can even wear a plunging neckline without being self-conscious. (My rad onc is also thrilled with the cold caps and is very positive and supportive, and asked me to speak to tumor board about it.) 

    Best,

    Susan 

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

    Snoopy:  My med onc office has a freezer and actually has caps in there that I used (I did not have to order any or bring any) and she still said the caps only have a 50% success rate.  The chemo nurse was a negative nellie and said "just be prepared...you know these don't work for everyone and most women just give up and don't finish doing them because it is uncomfortable and they don't work"....Nice hu?  My doc could not believe my hair the other day.  I told her if any patient wants to do them to have them call me so I can share my story or at least explain how I felt about doing it.  She said she would pass along my number.  My point is - even my office with the caps/freezers available was still negative.  Ignore those nay sayers and hang out here with those of us that will encourage you and have had success!!!  As far as cutting your hair, check with Frank or Geralyn...I don't believe they recommend you cut your hair before chemo as it weakens hair follicles!

    I just wanted to update you all..had surgery and it went well.  No more TE's!  I am a bit sore but on a positive note, much less shedding!  Hair is feeling good!  :)  I see new growth coming in too around temples and hair line which did thin do to chemo.  Some ar dark brown and some are gray.  Some are curly and some are straight......I will take any of it - I don't care.  I hope to color next week!

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Thank you all for your feedback and encouragement, I am going to go forward using the PCC.

    Susan & Maria I am PMing you right now.. my anxiety level is to the MAX this morning as i think the nurse yday kinda corrupted my hubby's mind and he was feelign abit iffy on me using the caps altho he said that he will support me etc etc.. I am PMing you shortly. Thank you all.

  • BHodges
    BHodges Member Posts: 10
    edited June 2011

    Hi fellow penguinistas!


    I just finished 4 rounds of T/C on May 27th and still have most of my hair!!


    Before chemo I had VERY thick, wavy, long hair. I would say, to date, I have lost about 1/3 to ¼, however it is only noticeable to me. My husband says he can't tell a difference. I am still shedding quite a bit, seems to be a little worse than during chemo (and even more after I spend time outside in the hot Texas weather). Hoping the shedding will cease soon....... BUT, it WORKS!!


    For new penguinistas who are interested, here is the hair care regimen I followed:
    I wash my hair once a week, with cold water using Pureology Nanoworks shampoo and conditioner (only on the ends). As well as, Kenra leave-in-conditioner and Pureology super smooth elixir (just on the ends- I have very frizzy hair). The first few weeks I just let my hair air dry, but the last few weeks I have used a cold blow dryer. I don't shed as much during the week when I blow dry it (the wash also seems to"last" longer). I don't lose too much hair when I wash, I do however, when I comb and blowdry it (but again, I think it helps to cut down on the shedding in the subsequent days). I use a wide tooth comb most of the time; occasionally use a round brush with the blow dryer for a little shape. As far as washing goes, I wash in sections- the top, middle, and bottom, using diluted shampoo with cold water only (for some strange reason we have two shower heads, which really comes in handy). Using a detachable shower head REALLY helps (on a slower stream). As far as styling goes, I normally just wear my hair down, maybe with a head band, and a hat on days 5-6 after a wash. I am thinking of going for a hair cut in a couple of weeks, just to trim the ends- desperately want to, but scared). How long do you wait before a haircut? How long before warm washes?


    I also took pre-natal vitamins throughout my treatment (still do). I just started taking silica as well after reading a post on here. And, I used Latisse on my eyebrows and eyelashes- so far they have thinned somewhat, but are still hanging on......  I used the caps once or twice every week for about an hour (just out of the regular freezer).


    Reading all of your posts helped me SO much, emotionally and logistically. You girls are AMAZING!! I don't think I would have gotten through everything without this site and the wonderful women on here.......


    Feel free to PM me if I can help anyone in anyway. I am in Dallas, Texas and would love to help anyone in the area get started with their caps.

    Hang in there ladies!!


    Brandy

    4 weeks PFC Pictures......

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

    Brandy you look gorgeous!!!  Your hair looks beautiful.  Great job! 

  • BHodges
    BHodges Member Posts: 10
    edited June 2011

    Thanks, Maria! (Sorry for the extra large pics, I couldn't figure out how to make them smaller)......

     Glad to hear your surgery went well and the shedding has slowed! We our on our way!!  

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Maria - Glad your surgery went well, feel better soon:-) Hugs to you

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Brandy, THANK YOU for the detailed explaination on yur hair regime:-)

    You look gorgeous!! I will PM you shortly.. I was told that I will receive 6 cycles of TC, is the PCC results diff with 6 cycles instead of 4? I noticed most of you have received 4 cycles. Just curious:-)

  • Ang7
    Ang7 Member Posts: 568
    edited June 2011

    Yea Brandy!

    You look great!

    I also used prenatal vitamins and still do a year later...

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    how do prenatal vitamins help? The only vitamins i use is vitamin D...

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    Brandy - you look amazing.  Congratulations!!

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Hi ladies, can someone help sending me a link of research/studies that shows that PCC's do not prevent chemo reaching/treating the head/scalp thus risking cancer recurrence on the head? I hope i make sense:-)

    Thanks in advance.

  • BHodges
    BHodges Member Posts: 10
    edited June 2011

    Thanks, LivCar and Ang7!! 

    Snoopy73-  I am not sure what the effect of 6 vs. 4 T/C treatments is with PCC, there are some women on here getting 6 treatments and, I think, most everyone has had success. From what Frank told me PCCs work really well with T/C......As for the pre-natal vitamins, I was on them before starting chemo and my oncologist said it was okay to continue taking them. Not sure if they helped or not.......Good luck!!! 

  • Ang7
    Ang7 Member Posts: 568
    edited June 2011

    Snoopy73~

    My onc. said that pre-natal vitamins were more "heavy-duty" than a regular multi-vitamin...

  • howard
    howard Member Posts: 102
    edited June 2011

    Hi Brandy! This is Dana. You look great! I'm so glad to see your pics and hear of your terrific results. Last time I saw you you were just getting started and I was just 3 weeks ahead of you. Just curious about your experience at the infusion clinic since we used the same one. It was stressful to us. I was the first to do PCCs and you were the second.



    Lynn: you're blond, right? Does the hair color you used just color grey or did it help with dark roots? I can't wait to highlight my brown hair roots so it will match my long blond hair. I'm 9 weeks PFC. The new growth has grey mixed with the brown. Which colors did you get?

  • heathermomof2
    heathermomof2 Member Posts: 3
    edited June 2011

    Hi All -  I'm new to this site.  I am a 39 yr. old mom of 2.  I was just diagnosed w/invasive ductal and insitu breast cancer.  T2N0M0.  I start chemo July 6.  My kids are terrified about me losing my long hair - which I've had for over 30 years.  How do I get my hands on these cold caps?  I'm in the Chicagoland area of IL.  Any suggestions?  Please help.

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