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Cold Caps Users Past and Present, to Save Hair

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Comments

  • dexxy
    dexxy Member Posts: 88
    edited July 2011
    thanks ladies! you all are the best.  I exercise about 5 days a week, but pretty much am on the go all the time.  Zumba is my passion right now, along with walking so if I can keep it up I will.  I wish I had time for more but when you run your own shop and are responsible for everything from the website to fixing, finding, and cleaning items its hard to have any extra spare time  I'm planning on working the whole chemo time except for treatment day and a day here and there.  If I don't I know I'll go crazy.  I promise to be kind to myself and not over do but I'm also not taking this lying down!!'off to get my whey and organic eggs everyone have a great 4th! No setting what hair we have on fire with fireworks Laughing
  • sebm9
    sebm9 Member Posts: 488
    edited July 2011

    Nancy: There is a shorter rads protocol -- tested, used and approved in Canada. My RadOnc tried to get it for me but my insurance would only do the (longer) US version. The medical community, which is profit-based, has no reason to work towards establishing the shorter protocol -- fewer TX = less pay for them. You'd think my insurance would WANT to accept the shorter protocol.

    So, I had the full round of US-style treatments plus 8 boosts.

    Try patting corn starch on your red treatment area. A good old-fashioned Gramma's cure for sunburn. My doctor had me using that 6x/day from the very first treatment, and I only needed aloe vera when I got to the boosts. It healed beautifully.

    Hope you are feeling fine -- sounds like you have all of your energy!  Congratulations on the haircut. Aren't these curlies hilarious?!? Now they're long enough that when I ride my motorcycle, I have long curlies hanging from under my helmet, even if I've ponytailed the rest of my hair.

    Cheers,

    Susan 

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

    Dexxy,

    I exercised on the elliptical at a high level 5 days a week for an hour a day all through chemo and sweat a lot.  I don't think it added any additional hair loss or anything.  The benefits of exercise are so great..don't skip it.  I did exercise indoors where it was air conditioned.  I even got back to teaching aerobics 2 weeks post chemo.  I sweat even more when I teach for whatever reason.....

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

    Ladies:  Why do they do boosts.  I haven't heard anything about those.

    Tomorrow is 28 days PFC and I'm having a bit more shed - almost time for the dreaded hair washing.

  • sebm9
    sebm9 Member Posts: 488
    edited July 2011

    ArleneA: My tumor was very near the surface of the skin, and the boost was an extra shot of rad doses (8 boosts after I'd completed the regular regimen of whole-breast rads). The boosts were aimed right at the specific location of the tumor, a very small spot about the size of a large blueberry (whereas the other treatments were the entire breast). 

    My surgeon did an astounding job of nipple-sparing lumpectomy, and I was afraid  rads would wreck it, but it peeled briefly and recovered the very first night I put aloe on it. Since the tumor was so close to the surface, there was one side which couldn't technically be called a clear margin -- it was skin and air above one cm. Hence the extra burn, to really kill all cells at the original tumor site.

    Susan

    p.s. my sister just returned from Ecuador, and sent a photo of a canvas bag with a picture of a bird and the words "We Love Boobies" -- a sea bird in the Galapagos Islands. I love it! 

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

    Thanks Susan.  Pretty neat about the 'boobies'.

    HAPPY INDEPENDENCE DAY!!!

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

    ArleneA: As Susan said, the boosts are to give an extra "boost" to the site of the tumor. The first 25(in my case) rads are to the whole breast to kill any stray "C" cell that may have escaped surgery and chemo, the boosts are to the direct smaller site of the original tumor. They are directed exactly at that small area. In my case that will be 5 boosts.

    In general, radiation itself does not hurt, and it is quick. The side effects are a sunburn like effect on your breast and in some cases under your armpit as well, itching, sometimes peeling skin(like a bad sunburn) and sometimes tenderness and or soreness in the breast and nipple area, the breast also gets swollen and heavier-why, I don't know, but I think there is some liquid retension, you may also be fatiqued-but if you walk, you can control the fatique. So far , that is all I have experienced or heard about. I haven't personally had the peeling or fatique. I still have 1 more regular rad and 5 boosts to go.

    Best to you all!! Believe me it is all doable-I had 6 TCH treatments and will soon complete 30 rads and am now continuing Herceptin alone every 3 weeks for the rest of the year, til Dec. Each leg of the journey seems unending and huge, until you do it and soon it is done and over and you are past that leg of the journey and on to the next.  Yes, Ladies it would be better had we not taken this journey at all, but thank our lucky stars, that there is all this treatment for us and it will work to keep us here healthy and cancer free for a long, long time. And thanks, too for the cold caps, which, for me, have made this journey so much more doable!!  

    Keep Positive!! Laugh and Smile alot!!! 

    Nancy

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

    Thanks to you Nancy.  Well, the radiologist hasn't mentioned boosts so I'm assuming I won't have them but they do the xray on Friday and I begin Rads on Monday so guess that could come up then.  I'll do what they want but hoping no boosts are necessary.  I'm still tired from chemo and these darn heart palps so exercise is a challenge for me and before all of this, I was a 1/2 marathon runner.  AND in the midst of rads, they will be doing my Heart Ablation procedure but hoping that will take care of the palps and exercise will be easier.

    Not being able to exercise along with all the treatments is leaving me depressed which is something I don't like and have never had to deal with.

    Love your positive attitude - it sure helps!

    Arlene

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited July 2011

    Hey Ladies I came across a new aluminum free deodorant that keeps you dry. It's new

    And it's by The Body Shop. It's called Deo Dry. They sell it at Sephora & The Body Shop for $5.00. It works wonders, you would never know it was aluminum free.

  • Ang7
    Ang7 Member Posts: 568
    edited July 2011

    Hey nmoss1000~

    I was going to use Deo Dry from Body Shop but I am wondering about the ingredient Peg-40?  I have heard different things about this and connections to BC?

    Please someone let me know if you know about this?

    Thanks.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited July 2011

    Hi Ang7 I have not heard any connections with PEG 40 & BC. But I have heard about it's affect on the immune system but there really are trace amounts of ethylene. But I am guessing it's better than aluminum.

  • brca1babe
    brca1babe Member Posts: 38
    edited July 2011

    speaking of deos...

    did you all hear that "the crystal" actually ends up being aluminum once it's on?  they advertise that they are endorsed by "cancer treatment centers nationwide", but I read the the "alum" ingredient ends up being aluminum once on your skin. that's why it works so well!

    also, the endorsement is really a few letters from RO who say it is ok to use the crystal with radiation and not just corn starch, they are not saying that it is not associated with cancer.

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

     Hi all:

    brca1babe: Are you referring to the deod called CRYSTAL? That's what I have been using since before I started chemo. Darn it, if it is! Boy O Boy, who can we trust? What is safe to use?? Maybe, "Tom's of Maine" or does Bur't Bees make a deodorant that is safe? Has anyone researched this? I thought I was using a safe product and it was working. Now what??

    Well, let's Keep Positive anyway!!

    Nancy

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

    To Arlene A.: Ask your Dr. if it is okay for you to walk. If yes, just try a block or two and after a few days add a block, and so on. You will build up stamina and feel better. There is no need to walk fast or power walk, just a gentle stroll will be just fine. Try it, if your dr. says okay.

    Keep Positive--it works!!

    Nancy

  • Ang7
    Ang7 Member Posts: 568
    edited July 2011

    Yikes!

    I use "Tom's of Maine" and now I need to research the "alum."

    It's always something...

  • Ang7
    Ang7 Member Posts: 568
    edited July 2011

    My neighbor uses "Weleda?" deodorant and swears by it?

    I am going to look that one up.

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

    Wow, I've been using Tom's for years and it says it is aluminum free.  I recently purchased one from Arm & Hammer that also says 'aluminium' free.

  • brca1babe
    brca1babe Member Posts: 38
    edited July 2011

    I was researching "crystal" deo online because I couldn't believe how well it worked.  I came across an article on the Bumble and Bee website- they make organic, paraben free creams and deo - and there is said the "alum" ends up being aluminum once on the body. 

    Tom's, Bruts Bees and Bumble and Bee to name a few have ones without aluminum AND without "alum"

    I had also bought Kiss My Face "Liqiud Rock" and it worked great... main active ingredient is also "potassium alum".  it is paraben free, though.

     there may be more to this alum story, maybe it's not as bad as aluminum ...I think I am simply going to avoid it.

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Hi cold caps users:



    Getting ready for tx #3. Going to pin my hair up as nicely as I can and parade by onc and nurses this morning. Show them all i still have it!! They are always asking in a somewhat skeptical tone.



    Then buckle down and get the tx over with! I hope it goes by fast, I'm so exhausted, did not sleep well. Hope everyone else is doing well at whatever stage of the journey you're in!



    Debby

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Incidentally did anyone notice their leg hairs growing between treatments? I have had 2 tc and today is number 3,



    I shaved shortly after first tx, my legs were bare and smooth. Yesterday while applying lotion I noticed I have 1/8 inch of hair on my legs. The sun was shining on them as I wouldn't have noticed as they are very light.



    In addition my arm hair seems to be growing, even down south has some stubble. My pits dont count, I had laser hair removal there quite some time ago.



    I hope this translates to growth all over my scalp as well. With aid of magnifying glass :), yes I am anal about this - who isn't, I see some new baby hairs at the crown, probably from when my hair started shedding in march. It is hard to see any new growth anywhere else. My hb too blind to find them :).



    I'll be soooo happy if the shed hair is being quickly replaced by new hair, but this growing leg hair has me baffled, wondering I'd normal. Thanks

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

    I use Bumble and Bee and it works well for me.  The only bad thing is that if you don't have the A/C on and its a hot day, it will crumble.  It needs to be kept kind of cool.  If I have the A/C on it's not a problem.  I only had it crumble once.  I am going to order more...I got one back in Feb and am still using it. 

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

    Hi All: I will buy Tom's of Maine deod, since it is easy to find and seems to be safe.

    ToDebRox: The lack of sleep before Tx is probably due to Decadron. It keeps you awake. I didn't sleep for 3 days each of the 1st two chemos, then my Dr. said to cut out the nitetime doses, so I could sleep.  If you are taking it, ask your DR. if you can cut out the nitetime doses or make them earlier, or have the Dr. Prescribe a mild sleep aid. Good Luck!!

    Keep Positive!!

    Nancy 

  • dexxy
    dexxy Member Posts: 88
    edited July 2011

    does anyone out there do the peas on your hands and feet? Debrox reccomends during the taxotere infusion.  Is it only during that and not during cytoxan?

  • LivCar
    LivCar Member Posts: 153
    edited July 2011

    I just wanted to report a great chemo day.  It was #5 of 8. Only 2 more to go.  4 DD AC, then 4 taxol.   It was a long day ... probably about 16 caps.  But the tylenol worked, meds were tolerable and i had a full (thin - but they can't tell) head of hair to parade around the unit.  The nurses are so supportive now and come into our room for laughs. It was more like a party! We had CNN on all day and watched the Casey Anthony verdict ... an absolute tragedy.  Between Nancy Grace and my cold caps, i didn't think of cancer all day.  And i was in the chemo ward!!  Just wanted to share.  Hugs to all of you going thru this with me.

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Hey LivCar, I just removed my last cold cap - yeah. All in all an uneventful chemo day and I feel really good right now. I'm trying to convince my hb to take me on the canyon walk, just the base, not the hills. He thinks I could be over doing it.



    I'll have to check the verdict. My oncs office locks me away in an examining room so no one can see the continual excitement of cap changes. Never a dull moment, that's for sure.



    I paraded around with my hair pinned up today, instead of under a hat. I hope they were pleasantly surprised, they always ask me on the phone about my hair, but they didn't make a fuss or anything.



    Yeah for you, only 2 more to go. We will finish close to the same time. Light at the end of the tunnel.

  • Sashette
    Sashette Member Posts: 75
    edited July 2011

    Dexxy yes to peas on fingers and toes. Yes to during tx. I iced mine and still lost 2 toenails and experienced neuropathy at the end. My guess is the effects of the chemo would have been more severe had I not iced. It also helps to suck on ice chips or something frozen. With all that frozen stuff remember your electric blanket.... Good luck, u will be through this soon....

  • hadle
    hadle Member Posts: 10
    edited July 2011

    Finished my third of four treatments of T/C a week ago.  Scalp itching and flaking is driving me crazy!!  Big flakes. Last week itching this week flaking.  Is there anything to put on the scalp to calm it down?  Otherwise I am very pleased, not all that much shedding and my hair looks normal.  Using latise on eyebrows and eyelashes really helps.  Also, is it OK to start using Rogaine where I lost some hair above my ears?  The onc says its OK.

  • LivCar
    LivCar Member Posts: 153
    edited July 2011

    hadle - Rogaine is a good idea.  Has anyone else used it?  I know someone else that used the Nioxin products during and after chemo.  How often are you washing your hair? maybe that's why it's flaking.

    DebRox - i was thinking about you today.  I'm glad you had a good day!

    ... oh, and i had my 6th of 8 treatments today.  My hubby just corrected me - i've been saying 5th all day.  Chemo brain anyone?  Off to bed for my night sweats!

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited July 2011

    I received my PCCs today ready for Chemo 1 on Thurs:-) I have a question on storing the caps in the home freezer - do i store them the way they were brought i.e white side out? or blue side out? I put them in zip lock bags. Please advise.

    Thanks, 

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Snoopy: i store them white side out. The person helping me, who has been doing this for over a year recommended it.

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