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Cold Caps Users Past and Present, to Save Hair

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Comments

  • michcon
    michcon Member Posts: 121
    edited January 2011

    Joyce:

    I too never heard any of these instructions. I'm done now, but have been saying all along that more information would be nice. Some sort of write up of all the rules when you get the caps would be very helpful. If it weren't for this board, I don't know how I would have gotten through using the caps. We have taken it upon ourselves to help the others. Please encourage Frank to give instructions out with the caps. All I got was the temperature and 20 min for first 2 caps, then 30 min thereafter with the 3rd cap being on for 10 min before chemo starts. That's it. No help on how much dry ice to buy, size of coolers, time needed to knead or how to knead, how to store caps in between use, etc...

  • michcon
    michcon Member Posts: 121
    edited January 2011

    Correction: I just re-read my instructions e-mail and it does say to keep caps in the freezer between use which I did. But, nothing about the other items Joyce mentioned like Fish in the freezer and no longer than 2.5 hours on dry ice before treatment.

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011
    Hi everyone! I'm new to this board and I'm so excited to see everyone talking about the cold caps. My name is Nicole and I'm the mother of two. I had my first round of chemo last Weds. With the help of my amazing family members, we got through it. It was a LONG day and more than once I wanted to quit but my rooting section kept cheering me on and telling me to continue. I'm glad I did. I have some tingling in my scalp. It's only been a week but I read it's a sign of oncoming hair loss. I haven't lost any hair yet but I heard that happens around week 2. Anyone familiar with this feeling on their scalp?
  • sebm9
    sebm9 Member Posts: 488
    edited January 2011

    Hi Nikki44, The tingling might be the itching that comes as your skin sheds -- the chemo is very drying and after first chemo, many penguinistas find that their hair looks kind of dandruffy with big icky flakes. The flaking goes away though (and any oiliness from not washing hair more than 1x week, gently with cold water only, goes away too). You'll probably start to shed hair somewhere in days 14-19 and might find you have a constant cycle throughout your chemo treatments. I always had heavy shedding around day 14, and after every hair wash. It seemed like tons of hair at the time but I kept it in a ziploc so I could give myself a reality check -- just hold the bag up and see that I still had a full head of hair. It never came out in clumps and nobody could tell I was going through chemo unless I told them.

    Glad you found this board -- I found it fabulously supportive while going through this! Esp. if you are one of the first or few at your cancer center doing this (for many of us, that is the case).

    Best,

    Susan 

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011

    Thank you Susan...This is such great info for me. I so hope this works. There were so many skeptics at the oncology dept. in the hospital I was being treated at that I decided to go to a different oncologist who was really excited to witness the whole cold caps process. Thanks again for the response. It means so much to me!Smile

    Sincerely,

    Nicole 

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited January 2011

    HI Nikki and all the other penguinistas!  

    Quick question for all of you experts out there!  I started  TCH on Monday. I did the not wash pre and post my TCH on Monday.  Just washed for the first time today.  For a week I have not seen ONE hair fall out until I was on my i-pad last night and one long hair fell in the middle of my ipad.  I quickly showed my husband, then laughed.  Then, I started looking around my bed/silk pillow.  No hair.  Then, I went to the bathroom, tub, floor (just a glance, no microscope involved) and no hair.  I realized that I have not brushed, hardly combed, no hairdryer, no pony tails for 7 days.  I bet I have hundreds of hairs just waiting to jump off my head.  Usually I have about 20 in the sink just when I blowdry!!!  So, when does this "old hair" drop?  I thought we all lost about 150 strands per day on a healthy head? 

    Just thinking...maybe a bit too much about all these little pieces of hair on my head!  Kiss

    Annie 

  • zlota
    zlota Member Posts: 40
    edited January 2011

    ANNIE-



    I'm also on TCH. So far 4 done 2 more to go. I was once a week with Hugo Naturals lavender shampoo. I get my chemo every 3 weeks on tuesdays I do my washing on Saturdays.However the week of chemo I wait until Sunday. So chemo on tuesday then wash on sunday then another wash on saturday and another the following saturday. No styling no combing before I go to bed just in the morning . I dont use caps in between treatments but rinse with cold water 3 times a week. You will find hair all over your house, we are so sensitive now I even notice hair my little ones are loosing lol.Guess we are loosing the weaker old hair.

    Anyway, post my # 4 and still have my hair, lost around ears and shedding but still there.



    Nikki44- how old are you kids, mine are 5 and 7?



    Thanks to all of you that gave me advise on neuropathy. Taking B6 and I have to try the other stuff too.

  • zlota
    zlota Member Posts: 40
    edited January 2011

    ANNIE-



    Forgot to mention, ask your doc about Latisse for eyelashes. Mine started to thin after chemo #2 and my plastic surgeon gave it to me. I also put it on my eyebrows. They thinned a little but not too bad. I put it on before I go to sleep every night. You can PM me if you want or have any other questions.

  • Ang7
    Ang7 Member Posts: 568
    edited January 2011

    Nikki44~

    I also left my first oncologist for another because the first one laughed about the Cold Caps.  I actually went back to see the first oncologist around Thanksgiving to show her that the Cold Caps had worked for me.  She said she could not believe it...

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011

    Hi Annie & Everyone~

    Your story sounds so much like mine. I haven't washed my hair yet either (day8)  and my sweet husband looked at my silk pillowcase for me early this morning and couldn't find a single hair. I'm scared to wash my hair too. I feel like I really need to though. It's looking pretty bad! (he he) This advice is so great. Thanks for everyones ideas and help!

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011

    Hi Ang7~ YEAH! good for you to go back and show them. I hope I can do the same! 

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011
    Hi Zlota~ WOW..that's so exciting your almost done. I have 7 more. Next Weds will be #2 and it's every 2 weeks. My daughter Taylor is almost 4 and my son Carter is 10. They've been so sweet during this crazy time. I told them were going to Disneyland when I'm done!!!Cool
  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Hello everyone,

    Well, it is day 7 since 1st chemo and so far, so good--no side effects yet, except a little constipation, which seems to have cleared up on its own. I rinse with Smart Mouth and Oasis mouthwases just to avoid mouth problems-haven't had any, and I spray with saline solution just in case-no problems there either.  I take a Claritan every day since Monday when I got neulasta shot and no side effects from that either, so far. I am a little weak and tired, but I try to walk a bit every day--even after the snow storm!! I keep active and hope I will stay well.

    Haven't shed a hair yet, but did caps at home every night until last night. I did it Sat. night thru Tues. night for 2 hrs and changing caps every 30 min. Frank said only need to do 3X a week, but was trying to make up for caps that weren't cold enough for 1st treatment. Frank says I will know by day 21, if it worked or not. Anticipating that day with much trepidation!!!! I will continue to do at home at least 3X aweek. Day 21 will be day of 2nd Chemo. Hope it works for me and certainly for all of you.

    I cannot believe how callous and uncaring all the nurses and oncology people are regarding the caps. They should be totally supportive, even if they are sceptical!!! They should be treating us with positive attitudes, not being "Doubting Toms". After this is over, I will write an article!!!!

    Power to us who dare to try!!!

    Keep positive!!

    Nancy

  • Julia1969
    Julia1969 Member Posts: 85
    edited January 2011

    I was in to my chemo unit yesterday and asked the oncology pharmacist about the talk about taking Claritin for hair side effects related Neupogen or Neulasta. (I had 19 of those shots)   I looked it up and neither of these drugs has losing your hair as a side effect and the pharmacist said no also.  Hate to have people take more drugs than they have to. 

  • Nancy52
    Nancy52 Member Posts: 6
    edited January 2011

    Where do you get the Lastisse?

  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Latiisse  is a prescription drug. I got a script from my dermatologist, but haven't filled it yet. Need to check with insurance if they cover it--it costs $100.00 for a tiny bottle. There is a generic that is available out of the U,S. You can get it online without a prescription. The women here say it is same. Goggle "Generic Latisse"and check the variouws sites. They offer it for about $35-$38 for same size bottle. Good Luck!

    Nancy

  • sebm9
    sebm9 Member Posts: 488
    edited January 2011

    Julia1969: I think you were thinking of Emend, not Claritin, which lists possible hair loss as a SE. Claritin does not list this as an SE. In oncological studies with Emend, possible hair loss was listed as a SE, but in surgical studies using Emend, hair loss was not an SE. Hope this helps!

    Susan

  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Taking Claratin is not for hair loss, it is for joint and bone pain. That is what the women here said worked for them for that side effect of neulasta shot.

    Nancy

  • debbyd
    debbyd Member Posts: 2
    edited January 2011

    I had Taxotere and cytozan  as my chemo regiment.   On the first go around I think we had that middle portion of the caps just to cold.   At the end of the day I had some swelling and red tender scalp.     Over the next few days it was sore but the hair hung in there.   Then at about day 12 - 14 when I touched my scalp it was kind of hard and some skin did come off,  so did a couple of small patches of hair.   The good news is that the hairs follicles started growing right away and now about another 10 days out they are starting to come back first as stubble and then as more little fuzzy hairs.    On my second chemo on monday we paid more attentiion to the exact temperature,  of that middle section and I had gauze on my head on that area in the middle panel to help protect it this time.   We will see how that worked,  but it seems like it was good,  no freezer burn this time and yet it seem to cool pretty well.    I don't know if you had some freezing trauma but even if you did there is hope.   

     Good luck,    debby 

  • sashasz3
    sashasz3 Member Posts: 97
    edited January 2011

    don't really know if this really works --but it is for me--when I am not at work--I have been GENTLY putting my hair up--just in a loose ponytail or in I clip --I seem to lose NO HAIR when I rest it this manner---when it is down I seems to be every where---when I release the clipped hair the loss is to a lesser extent--anyone with me here --?????

  • nikki44
    nikki44 Member Posts: 8
    edited January 2011

    Sashasz3~ Me too! I have been wearing my hair in loose ponytail with a scrunchy and it's so much more comfortable for me and it doesn't seem to be pulling at all. We'll see! No hair loss yet, but I am only at day 10 after my first cold cap treatment.

  • zlota
    zlota Member Posts: 40
    edited January 2011

    NIKKI44- how funny I told my little ones the same once chemo is done implants are in place we are going to Disney, hey maybe I'll see you there.

    Same for me if I pull them in ponytail seems like I don't shed that much

  • Ang7
    Ang7 Member Posts: 568
    edited January 2011

    Same with me~

    ponytail with a soft scrunchy.

    Also, took the 4 kids to Disney for the first time when chemo was done.

    Fantastic time!

  • JAB123
    JAB123 Member Posts: 3
    edited January 2011

    I am new to this bolg.  I was supposed to start chemo today, but felt rushed and wanted to get a second opinion.  I had a lumpectomy and sentinel node biopsy last month.  I was going to start 8 rounds of ECT today.  After talking to two other oncologists I am still very confused about how to continue.  My biggest fear was losing my hair and it wasn't until I spoke with the last oncologist that I learned about cold caps.  I can't believe I hadn't been told about this sooner!  It seems to be a well kept secret.  I have been reading a lot about it since yesterday.  Although it sounds overwhelming to me right now I want to consider this as part of my treatment.  How hard is it to get started?

  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Hello Jab 123,

    It isn't that hard to get started. It is important to contact Penquin Cold Caps--Google their site and learn about them. It all depands where you are and where your treatment will be. Some hospitals and some infusion centers have special freezers for the caps and that makes it a lot easier to do. Where are you located? You can contact Penquin Cold Caps and/or the Rapunzel Project and they will tell you if you are near a center or hospital with a freezer. Research both these sites, they will give you info about the cold caps. If you aren't near a place with a freezer, it is still very doable, read this forum and you will get the hang of it. Good luck!!!

    Nancy

  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Hello All,

    I just washed my hair--it is  8 days since my 1st chemo. I waited to wash, because I was afraid and I wanted my hair clean for the weekend. Hardly shed a hair!! Less than usual. Probably beacause I hardly did anything to pull on the hair, I gently put  special shampoo with cool water on and just mushed it around then , very gently.  Rinsed with cool water from a cup, then II put a towel over my head and let it sit to absorb excess water. I didn;t move it around. I put Sea Chi conditioner on and combed thru with very wide tooth comb. I then set my hair on foam rollers--very soft and squishy  and let it dry--no pulling. I will comb out soon. Hope it looks okay.

    Nancy 

  • keeppositive
    keeppositive Member Posts: 181
    edited January 2011

    Hi ALL<

    I just combed it out, it looks horrible, I can't go out in public like this. The conditioner made it stringy and it is going in all directions. I guess with long straight hair you can let it just hang down or tie it up or back. With short wavy fine hair there seems to be no options!! Help!! I need to find some kind of soft brush, any suggestions? I may have to wear a hat!!!

    Nancy

  • JAB123
    JAB123 Member Posts: 3
    edited January 2011

    Nancy,  Thanks for responding.  I am in the New York area.  I don't think Sloan Memorial is too keen on cold caps.  I don't think they have a refrigerator.  I know Cornell does.  I read your earlier entries.  I guess that means that I would need lots of dry ice.  It sounds like a pain, but well worth it if I can preserve my hair.  I'm glad you have done well so far.  As much as I am dreading getting started I know the sooner I start the sooner I finish. How many treatments do you have to do?

  • Kathy119
    Kathy119 Member Posts: 9
    edited January 2011

    keeppositive,

    I have short wavy hair too and it has been a challenge.  Try using just a drop of conditioner in a bowl of water and mix it real good then pour over your head .  Wait a minute and then rinse it out. For me that is just enough to make the hair easy to comb without weighing it down. I resigned myself to looking different and pretty much just let it fall the way it does naturally.  I just finished my second treatment and it's been about 8 weeks since my last hair cut.  This also has changed the way everything looks since my hair has grown.  I just figure long and scruffy is better than bald.  I have also experiemented with soft headbands.  Some people have commented that it's a cute look.  I try to keep in mind that it won't last forever and when it's over I will have hair to style.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited January 2011

    HI Nancy - I know exactly what you mean!  I have shoulder length hair that is looking just strange.  It is simply from the natural shampoo and conditioner and the fact that i have not combed, brushed, or blow dried my hair in over a week.  I look different.  Though I am just five days out from chemo #1.  

    One of the earlier posts was from a woman that sounded like she treated her hair semi-normally, but with cold blow dryer and some sort of low curling iron.  I may just try to do a little more than the air drying....but then again, I have not hit the shedding period of days 14-17, so I am still feeling a bit gutsy!!!

    Can anyone, who is further down the path, weigh in on how you styled your hair? blow dryer, etc?

    Many thanks!!!

    Annie 

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