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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Ang7
    Ang7 Member Posts: 568
    edited October 2010

    Yea Drim!

    No pressure, but I have told many friends to watch you on Tuesday!

    Thanks for spreading the word...

  • Lucky60
    Lucky60 Member Posts: 59
    edited October 2010

    Hi All: It it great to hear about the Penguin Cold Caps being on Good Morning America, yeah! But I'm writing for a little encouragement. Had my first chemo last Friday, and the first few days I felt almost normal. But the last two (Days 5 and 6) have been tough--bone pain, crampy, a little fuzzy--it will get better soon, right? Thanks.

  • michcon
    michcon Member Posts: 121
    edited October 2010

    Lucky60

    My first round was the worst so far for me. I'm through 3 out of 6. I felt like a truck ran me over dragged me and then ran me over again. Days 4, 5 and 6 were bad, but I came out of it. I've decided to give in to being laid up on the couch for 3 or even 4 days after each round and to just ride it out.

    Call your doctor and let him know how you are feeling to make sure your symptoms are normal reactions to the chemo and see if you can take anything.

    It should get better in the next day or so. Then you just feel tired and get better each day until the next round. The few days before I get hit with chemo again I feel like my normal self. I use those days to get my errands done, clean the house and even go out with friends.

    Chemo pretty much sucks for how it makes you feel, but I tell myself it will be worth it to kick cancer's butt!

    I hope you feel better soon.

  • michcon
    michcon Member Posts: 121
    edited October 2010

    Lucky60

    My first round was the worst so far for me. I'm through 3 out of 6. I felt like a truck ran me over dragged me and then ran me over again. Days 4, 5 and 6 were bad, but I came out of it. I've decided to give in to being laid up on the couch for 3 or even 4 days after each round and to just ride it out.

    Call your doctor and let him know how you are feeling to make sure your symptoms are normal reactions to the chemo and see if you can take anything.

    It should get better in the next day or so. Then you just feel tired and get better each day until the next round. The few days before I get hit with chemo again I feel like my normal self. I use those days to get my errands done, clean the house and even go out with friends.

    Chemo pretty much sucks for how it makes you feel, but I tell myself it will be worth it to kick cancer's butt!

    I hope you feel better soon.

  • GAgirl01
    GAgirl01 Member Posts: 53
    edited October 2010

    Ditah~ Wow! GMA...I can't wait to watch!  My DVR is already set!  I actually have my herceptin scheduled that morning so my infusion room nurses will be watching as well. They are excited to see the information passed along, I was the first PCC user in TN and they had never seen them before.  We have two other women getting ready to start using them in the next month.  You have such a great testimonial for them...couldn't think of a better person!

    jpmercy~I'm glad to hear your first round went so well. Sounds like you have a great support team and a wonderful group of nurses as well.  Keep up the positive attitude...it truly works wonders! Think WARM thoughts...you can do it, it is SO worth ever shiver!

    Chey~I know I haven't been on here as much as I would like, but you truly have been an inspiration to me.  I was in the middle of my treatments (THx12) when you first joined our discussion board.  I too have used the caps with success, but you have amazed me with your uplifting strength and motivational spirit!  Stay strong.

    I would love to be able to spend more time sharing with many of you how you have helped me through many long days with laughter and tears, unfortunately I'm on call alot and work 3/12hr shifts, when I'm not on call.  I try to hop on the computer every week or so and catch up with everyone.  Simply motivational and amazing...ALL of you!  Thank you for being here...for each other, while we dance this dance!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    Drim- Great news about GMA!  I'm so excited to see the story.  Like Susan, I feel like I know you from the posts we've shared through chemo and cold caps, so it will be great to put a "live" person with the posts!  I am sure you did great!

    I am 105 days PFC and I am going tomorrow to get my hair highlighted.  I'm a little nervous, but I am have been doing everything else normal for my hair (wash, blow dry, style) for some time so I feel ready to try the highlights.  My hair dresser is going to do a test strip first to see how it holds up.  I will keep you all posted!  Good luck to those of you still doing or about to start chemo.  You CAN do this!  Hang in there. 

  • Ang7
    Ang7 Member Posts: 568
    edited October 2010

    Hey GolferGirl~

    Please let us know how your highlights went as I would like to do them but I am a big chicken...

  • cheyenna
    cheyenna Member Posts: 119
    edited October 2010

    wow! i cant wait to watch, just a reminder halloween is here and in my town we run out of dry ice, please plan ahead so you can get your ice!!!

    Agirl, thank you, two more to go after tomorrow, then im done, hair is still hanging in there:) it has been a long 16 treatments...

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    Cheyenne! Only 2 more!  Wow!  WooHoo!  You deserve a gold medal!!  Really   You are an inspiration to others!!  And to think you had a choice of having only 4 tx's of TC or 4 AC and 12 taxol.  I think most would of went with the 4 TC!  Sorry I missed your call-I have really been so busy and I will for sure be very busy this week after GMA is aired.  I really can't wait till all of the doctors who snub their noses at the cold caps have to take a second look at them or they will lose their patients because everyone will know about them!!  And just think we ALL are laying the groundwork for the future!

    Drim -I can't wait to watch Tuesday and I am sure you did a great job!!!  I remember when Shirley ordered her caps!  Now look what she has done with the Rupunzel Project!  I know these caps are going to take off and the best part is that the results of the penguin cold caps are really awesome!!

    Hope everyone sets their DVR'S Tuesday the 26th to Good Morning America!!!

    All the Best!

    Geralyn 

  • zlota
    zlota Member Posts: 40
    edited October 2010

    Hi all

    Please help me decide, I'm starting 6 cycles of TCH next week( my 31st b-day) and I don't know what to do should I shave my head or use the caps? My biggest fear is that since you are dropping the temp in your head maybe chemo won't get there and 3 yrs from now I'll have mets to brain.... The idea of keeping my hair seems so gooooood, will make me feel like human since I already lost my left breast. My tumor was 0.6cm with 2.8cm of DCIS , no nodes.

    What should I do? 

  • michcon
    michcon Member Posts: 121
    edited October 2010

    Ziota - It's definitely a personal choice; you need to weigh out all the pros and cons.

    My oncologist told me he has not read anywhere of someone who got scalp cancer from not letting the chemo go there. Although, his advice was that he believes in treating the entire body and the caps would not allow chemo to go to scalp. He did not stand in the way of my decision though.

    Check out the penguin cold cap site. I believe there are statistics there about the scalp. It's very low.    http://www.msc-worldwide.com/scalpmets.html

    Good luck in your decision. For me it was not even a thought, the minute I found out about the caps I knew I was doing it. But, that's me.

  • michcon
    michcon Member Posts: 121
    edited October 2010

    Hi all, one question for you: Did you ever have scalp pain? Not bad, but my scalp hurts at times when I move my hair around. I changed my part last time I washed and it hurts a bit. I'm praying it doesn't mean its about to fall out!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2010
    I have a similiar question as zlota.  Does anyone have any scientific evidence about the cold caps inhibiting the chemo from getting into the brain?  I have a meeting with an oncologist this Thurs (surgery is scheduled Nov 3rd) so I have some time to make a decision (not even sure if I will be suggested to have chemo yet).  But I have already had someone locally tell me that her oncologist "didn't allow" her to use cold caps because of that reason.  Though, isn't that your own choice?? How can they "not allow" it??
  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2010

    Oops...looks like michon just answered it. :) 

  • Ang7
    Ang7 Member Posts: 568
    edited October 2010

    Hi michcon~

    Yes, my head hurt and tingled some during each week of chemo.  I was worried each time that my hair would fall out, but it didn't.

     Hey, someone just called and asked permission to use my photo on the Good Morning America show tomorrow about the Penguin Cold Caps.  Yikes, I think it is the one where I am drinking tea and all bundled up trying to stay warm.  I did not take many pictures during that time as I did not want to remember chemo...

  • bridetobe
    bridetobe Member Posts: 40
    edited October 2010

    Ziota & SusansGarden,

     About the scalp & brain mets, my doctors warned me about the hypothetical possibility of this happening, so I did my own research. There are actual studies that were published where they found no link between cold caps and scalp mets. Specifically the chance of getting scalp mets with cold caps were no greater than in those who did not use cold caps. The article was published by Julie Lemieux in Breast Cancer Research and Treatment (2009). Please PM me if you would like the full PDF article. But like Michcon said, ultimately it is YOUR choice. Some may find it too much trouble and others (like myself) will think these caps are heaven-sent.

    Also, a GMA producer just called me. Apparently the cold cap segment has been CHANGED to next THURSDAY between 8 & 8h30 AM. The producer called asking if I had any pics or videos of the cold caps in action. I have said I will gladly share my pics (a little stressful but I know this is for a great cause), but if anyone has more pictures or even better videos, I know they will be greatly appreciated.

  • NewBride
    NewBride Member Posts: 126
    edited October 2010
    bridetobe,  Hi.  Do you mean October 28 or Nov. 4? I need to call my doctors and let them know about the schedule change.  I went thru TC x 4 with the Penguin Cold Caps and awesome results at about the same time as Drim.  I contacted my local ABC affiliate just to let them know that they have a local connection to the GMA story.  They may interview me. I'm not very comfortable in front of a camera but it is worth doing if it gets the word out.
  • Drim
    Drim Member Posts: 134
    edited October 2010

    Ang - that's funny! They called me this morning asking me if I had photos during treatment but I said I didn't mostly because my mother didn't want me to take any pictures. My father wouldn't even come in the room. Guess he didn't want to see his daughter like that.

    Anyway - they just called again and said they are moving the segment to Thursday. The more they postpone it, the lesser the chance is that they are going to air it. Hope it makes it. 

    zlota - I am far from a doctor but I believe that most chemos have trouble breaking the brain/blood barrier in the first place so I don't think brain mets is the concern - I think it's more scalp mets. The chances are low in general but certainly not non-existent. The probably of developing scalp mets would also be lower for people who have a lower probably of mets in the 1st place (low grade, low stage). In the end only you know what chances you are willing to take. I personally feel like the sample size is too small to make a statistically significant determination of whether or not the caps cause scalp mets.

  • Drim
    Drim Member Posts: 134
    edited October 2010

    The GMA segment is now scheduled for October 28th. I'm glad word is getting around!!

  • NewBride
    NewBride Member Posts: 126
    edited October 2010

    Thanks.  I actually have a few pix.  Not the most flattering but that's not what it's about.  I look good now and PCCs are the reason why.

  • cheyenna
    cheyenna Member Posts: 119
    edited October 2010

    please read this..I think we all know the GMA will be aired on Oct 28th this Thursday, The producer of the program Morgan would like us all to send in pictures of us wearing the cold caps. she would like them by tomorrow Oct 26 am, i know its short notice but i just got the call, if u would like to send in a pic of u with the cold cap on to be aired on Oct 28 please pm me or geralyn the rep and we will send you the email address to send your pic too, thanks u, you can reach me on my cell if u need all nite tonite if u have questions..

    530 227 9683

    love Chey

  • cmksocal
    cmksocal Member Posts: 163
    edited October 2010

    Hi,

    I have photos.  And will give you a call.

    Colleen

  • NewBride
    NewBride Member Posts: 126
    edited October 2010

    Chey,  Thanks much.  I sent my pix.  I also let the ABC affiliate in my city know that they can interview me for a local story in connection with the GMA segment if they want

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    Ang7- I highlighted and colored my hair over the weekend and there were no problems!  It looks great and my stylist did not feel that my hair absorbed the dye any quicker.  I did not use organic dye, just the regular stuff.  Anyway, I am thrilled with the results and truly feel back to normal now.  I am about 105 days PFC and am back to all my old hair habits!  I am still not washing as often, but that's because I actually think my hair looks better if I don't, not because I am worried about it falling out   Phew!

    Drim, Chey and all- I hope GMA does the story!  I'm resetting my DVR for Thursday, please let us know if that changes.

  • Drim
    Drim Member Posts: 134
    edited October 2010

    Congrats GolferGirl - so glad the highlighting went well.

    I can't believe I have no pictures. I ended up taking one in my house with the cap on as I was packing them up to ship them out. The only pics I have at the chemo center are the ones they took to see how may hair progressed but I think those are literally close ups of my scalp.

    I'm glad you ladies have pictures you are willing to share!

  • cmksocal
    cmksocal Member Posts: 163
    edited October 2010

    Chevy - not sure I reached your cell number.

    If someone else has the GMA email addy, please PM it to me.

    Colleen

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    Hello All

         I couldn't get on her till now so I asked Cheyenne to let you know that GMA will now be on Thursday October 28th instead of Tuesday  and about sending in any pictures of you with the cold caps on.  Instead of calling her or me you can email them to : morgan.zalkin@abcnews.com  She needs the ASAP!

    Also they are desperate for any videos if anyone took any?!!  this is going to be good but they need them tonight but if you read this late still send them --who know's!!  I can see it now --All the women across the USA wearing cold caps--!!  No more Secret Society!!!  Yes!! 

    All The Best!   gmp300  Geralyn

  • starella
    starella Member Posts: 101
    edited October 2010

    Hi, has anyone used the elasto-gel cold cap?

  • cheyenna
    cheyenna Member Posts: 119
    edited October 2010

    starella,yes peggy has, go back a few pages and you will see, she goes by whichway2run,

    goodluck chey

  • sebm9
    sebm9 Member Posts: 488
    edited October 2010

    I have some pictures to send; somebody please post or PM me the email address. Thanks for letting us know that the segment airdate has been changed!

    Susan 

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