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Cold Caps Users Past and Present, to Save Hair

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Comments

  • shadow2356
    shadow2356 Member Posts: 93
    edited December 2009

    Hello! To all the users of cold caps. My caps are supposed to come today. I hope so!!! I have some questions that some of you might be able to answer. What type of coolers did you use and where did you get them? Where did you get the special thermometer? I am in NY. WE have most of the major national chains. Can you get the dry ice the day before? My chemo starts at 9:30 am Monday so I won't have much time before.

    Any tips or advice would be greatly appreciated.

  • Can-D
    Can-D Member Posts: 27
    edited December 2009

    Shadow, Yes you can get the dry ice the day prior.  I lived 1 1/2 from where I bought the dry ice, so I always got mine the day before.  Cover the dry ice bags with a heavy blanket and the ice will not sublimate much at all.  Also, if you can find them, use the pellets and not the blocks as with the pellets you will not have to buy as many pounds and they are SOOO much easier to use.  I got my coolers at Wal-mart; they were Coleman Xtreme coolers, 100 qt. with wheels.  I had two coolers and each cooler with hold 6-7 caps.  If you are using heavy duty plastic bags to allow the caps to be flat as possible, instead of folded in the boxes, you probably need only one cooler and 1/2 the dry ice.  I couldn't find bags big enough so I used the boxes and because of the fold, the caps are NEVER a uniform temperature and your helpers will really need to stay on top of that by checking them.  Some will need to be placed on top to warm-up and some will need to be shoved down into the ice to get colder.  They will need to pull a cap about 12-15 minutes ahead to see where a cap's temp is at and warm or cool appropriately.  I hope this helped. Good luck and I wish you success with the caps.  It may seem like a lot of work, but its very manageable and definetly worth it!!!!

  • geewhiz
    geewhiz Member Posts: 671
    edited December 2009

    Does anyone have the eyebrow protector bands? I hear that they are out of them and are racing to manufacture more. 

  • NewportLori
    NewportLori Member Posts: 35
    edited December 2009

    geewhiz, I have 4 of the eyebrow bands.  PM me if you are interested in having me ship them to you.

  • shadow2356
    shadow2356 Member Posts: 93
    edited December 2009

    Thanks to everyone for the helpful tips. I am scrambling to get everything in time. I have my chemo Mon at 9 am. I found a place where I could get the dry ice tomorrow, got the thermometer and I am going to go to Target for the coolers now. I sure hopw this works because its been a lot of work and I haven't even done the chemo yet!

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Hey MaryEllen,

    I am right there with you.  My husband went "out into the snow" (1-2 inches?)  to get the cooler and the thermometer.  He did not want to wait till Sunday and miss watching the football game...

    I spent the day scraping enough snow to make a snowman with the kids.

    Let us know how Monday goes...mine is on Thursday.

  • geewhiz
    geewhiz Member Posts: 671
    edited December 2009

    Ok, thank s. I sent you a PM.

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Hi all,

    I know I have to treat the hair gently.  Did you use shampoo and conditioner?  Can you wear a winter hat or would that put pressure on it?

    I am so stressed about this and hubby says "it either works or it doesn't - why stress?"

  • gmp300
    gmp300 Member Posts: 196
    edited December 2009

    Hi Ang7,

         Iam sorry you are so stressed about this!  Don't worry so much.  I pm'd you with my number and feel free to call me, maybe I can calm some of your fears and give you some tips.  Last time you called I wasn't home.  Try me again-Geralyn

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Hi All:

    Coolbreeze:Your greyhound pic made me smile. Is your hound as lazy as mine?

    Today is  8 days out from my 3rd chemo and I am still quite sick feeling.  Do the chemos get worse with time?  I'm just about ready to tell my doc no more...this is horrible.  I've lost 13 lbs. since the picture I posted on 11/30 and can't eat or drink....I HATE THIS!!!  Anyway....so much for the ranting...I did manage to wash my hair today and although it did thin quite a bit it still looks decent so hopefully it will hang on.  I wonder if getting so dehydrated the week after chemo and laying in bed for about 6-7 days if that doesn't contribute more to the loss...but I'm still very happy with the cold caps.  Good luck to all of you that a getting ready to try it and don't hesitate to contact me (those of you that are on TCH) with questions....I'll try to help.

  • NewportLori
    NewportLori Member Posts: 35
    edited December 2009

    NoSunshine:  You should NOT be feeling so sick that you are unable to eat or drink. Losing so much weight so quickly is not good.  Please call your oncologist to report this if you haven't already done so.  Becomming extremely dehydrated is very bad.  Do you have a fever? 

    Although the chemos are cummulative, you shouldn't have had such a severe reaction.  Many women say they gain weight because eating helps reduce the nausea.  I was fortunate in not having nausea, however I took Emend, Zofran, Compazine, Dexamethasone and Priolosec OTC in addition to whatever they gave me in the IV on the day of chemo.  Although some food wasn't tasty with my taste buds so effected, I was able to find foods that were palitable. Although I lost a few pounds early on, I gained it back and was able to maintain my usual healthy weight.

    Please let us know how you are doing.  Maintaining your health is more important than maintaining your hair.

    Best wishes,

    Lori

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Oh No Sunshine, I am thinking of you.  I start my TCH tomorrow and hubby and I practiced doing the Caps tonight.  Well, at least we can laugh about them.  I am worried about SE's because my neighbor had a boat load of them.  She did not walk much and I am hoping that some exercise might make me feel better.  However, if I can not even get off the couch that might be a problem.  I just think a Slurpee Headache for about 6 hours is about all I could stand for tomorrow.  We will see how it goes.  I am planning on seeing my daughters perform in a show on Thursday night.  Onc. said I should not feel badly that night.  Hope she is right.

    Hugs to all,

    Ang

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Me again,

    Had 1st chemo.  I feel ok. Just really cold from the Cold Cap.  Wish I didn't have to take that steroid again tonight.  I was up till 3 am. last night.

    Husband was like the Mad Hatter dashing around with Cold Caps the whole time.  He got me tea, water etc. 

    Cute Cold Cap look, huh?  IMG00049

    I hope we got all the timing and temps. right.  There were alot of differences in temperature between caps.  We had to freeze some longer and put some under water for a minute.

  • gmp300
    gmp300 Member Posts: 196
    edited December 2009

    Hello Ang7,

         You look so cute in the cold cap!!  Iam excited that you are trying to keep your hair.  Your dh sounds like mine!  They do come in handy dealing with the coolers!  We took ours out of the cooler 10 minutes before we had to change the cap at -40C and let them warm up by putting a blanket over them and kneading them till they were the right temp.  They were ready every time.  Maybe get your cooler ready a little earlier next time so that they are all cold enough and the right temp.  Good Luck-Geralyn

  • arbella
    arbella Member Posts: 20
    edited December 2009

    hi all

    i started chemo yesterday and used the penguin caps. i was a bit stressed as my husband felt that it wasnt fitting my head/hair line well....maybe i have a too big head or odd hairline. any advice? and did anyone with very long hair put it back somehow,...it kept getting tangled in the velcro

    also did anyone get a fever the next day from the caps?

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Hi,

    I just had my hair hang down by the sides of the cap.  Were you feeling run-down or sick at all?  I do not think you would get a fever from the cold cap...

    Hope you are feeling well today.

  • arbella
    arbella Member Posts: 20
    edited December 2009
    i do feel better today. my older son was sick so it could have been that as well. so your hair didnt get tangled? also did you feel like it was unbearably cold? i didnt and of course i am now thinking maybe not cold enough for my super thick hair? ugh...more worried aobut this than the chemo Laughing
  • Thankful1
    Thankful1 Member Posts: 11
    edited December 2009

    I just posted this question in another thread.  Sorry for the duplication but it is hard to figure out where to post(or for me it is anyway).  I just finished my 6 TCH treatment on 12/09/2009.  I used the Penguin Cold Caps and am pretty pleased with the results.  My hair thinned quite a bit especially after the 5th treatment but I don't need a wig.  I have just found out that I will need to take tamoxifen which has hair thinning listed as a side effect.  This is my new thing to stress over because I was looking forward to my hair thickening up but I guess that is not going to happen for me.   Has anyone used the Cold Caps with success only to lose their hair to tamoxifen?  Any replies will be welcome.  I am really stressed!  Thanks so much!  Angie

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Arbella:  I've been using the PCC's also and have experienced quite a bit of thinning during the 1st and 2nd chemo.  I have TCH every three weeks and am due to start my 4th treatment on Monday--12/21.  I had very thick hair to start off with so no one can tell that my hair has even thinned at all except me.  I leave my hair hanging straight down (as Frank instructed) and yes your hair does get stuck in the velcro...I lose a lot to that when removing the caps and have my helper gently pull my hair out of the velcro the best he can.  It does seem that some of the caps fit better than others...but for the most part they have been working wonderfully for the first 3 treatments...I'm hoping they will preserve my hair throughout all of the treatments and will keep posting pictures until I finish with this (nightmare) processFoot in mouth!!

    Ashively1:  I'm on the same chemo. regimen as you but I don't think that I have to take the tamoifen...or at least it wasn't mentioned as part of my treatment plan.  I have heard that herceptin slows the grow (or regrowth) of hair and I have to be on that for a year or longer so I'm wondering if and when my hair (the part that thinned above my ears and nape of neck) will start growing back. I don't guess it really matters since so far I've managed to keep most of my hair...so really not a complaint...just curious.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Ang7:  You look so cute in the PCC's!  I would have posted earlier but I got really sick after this  3rd treatment...I think I let myself get too dehydrated 3-4 days after treatment when everything starts to taste yucky!  I'm going to see if I can come in and get fluids several days after my treatment to see if that helps.  My helper (my BF) says I look like a chipmunk with the caps on...and I get a lot of weird stares when I leave my chemo room to go to the bathroom.  Since these caps are blue I guess a lot of people think I have some sort of brain injury!  Oh well...I hope you are feeling OK after your first treatment.

  • arbella
    arbella Member Posts: 20
    edited December 2009

    thank you ladies for all the feedback...i will continue to be positive that the caps will work...it is days 10through 17 that it should fall out correct? i am on tc x4...one down. no sunshine...so happy your final tx is in sight!! congratulations!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009
    Arbella:  My hair started thinning on day 15.  It's a scary thing when your hair starts thinning and mine has been thinning every day more or less since day 15.  It's funny how we can adjust and get used to just about anything...I don't even really notice the thinning anymore...I just gather up all the hair from combing/brushing it, throw it away, and carry on with my day.  At first I was freaking out and then as time went on I wondered where all this hair was coming from...now it's just a part of my daily life.  I do still get scared the day of my chemo because I wonder what this treatment will bring.  Ater the 2nd treatment I started to get a bloody nose on a daily basis, my finger tips are cracking and splitting like crazy and I now have white lines across nearly all of my fingernails...so each treatment brings on new fears...especially with "how will this affect my hair???"  I can't wait to be done with this portion of my treatment....it almost (and I emphasize almost) makes the rest of the treatment plan seem like a piece of cake (surgery and radiation).  I guess we both have 3 more treatments to go...I'll keep my fingers crossed that the PCC's will work for you as well.
  • Thankful1
    Thankful1 Member Posts: 11
    edited December 2009

    Hi NoSunshine:  Thanks for the reply.  I will also be on herceptin for several more months, until July, 2010, I believe.  I have heard mixed stories about hair growth while on herceptin.  Some have told me that their hair is growing really slowly but others have said that their hair is growing really well.  I was not told until 12/09  that tamoxifen would be part of my treatment plan.  I am not supposed to start taking it until 12/30.  I sent an email to Penguin Cold Caps the other day to see if they had anyone who had any experience with this drug but so far I have not received a reply. If I am able to get any information I will post.  Best of luck to you and God Bless!   

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Thanks NoSunshine for the compliment!  I had my first TCH Dec. 9th and I keep checking my hair every morning...next tx. scheduled for Dec. 31st.  The steroids gave me such an energy buzz that I am planning on cleaning for the New Year!

    It is great to hear from all of you going through this at the same time as me...

  • shadow2356
    shadow2356 Member Posts: 93
    edited December 2009

    How is everyone doing? I am feeling better after my first chemo 12/7. Tomorrow will be two weeks and I don't see any signs of hair loss. However, I don't have any body hair loss either. I am keeping my fingers crossed that it works. My next chemo is 12/28. I hear most people who are going to lose it do by the second treatment. Thanks for all the positive stories.

  • arbella
    arbella Member Posts: 20
    edited December 2009

    shadow..i am one week after you..started on the 15th. feel ok now. i heard hair loss starts day 10-17 possibly? not true?

    also, does anyone have hair washing tips?? i have already washed my hair 2 x which i know isnt right because it is so itchy and flaking...gross! pls advise...shampoos, technique etc...

    thank you

    arbella

  • Thankful1
    Thankful1 Member Posts: 11
    edited December 2009

    Hi Arbella, Since the end of my chemo on 12/09, I have been anxious to shampoo my hair in something other than Johnsons Baby Shampoo.  I have felt like my hair and scalp were gross too.  But, I was terrified to use anything else. After about my 3rd treatment, my hair became very dry and would tangle easily.  It would thin a lot when I tried to comb it out after washing because I had so many tangles to work through.    I started doing some research on the internet and found postings from some chemo patients whose hair was starting to grow back in.  They were using a baby shampoo called Mustela. I ordered some from drugstore.com (It's not cheap, about $10.00 for a 6.7 fl bottle).  I have used it a couple times and I think I like it better than the Johnsons.  For me, it doesn't seem as harsh on my hair and I don't have the sticky film I was getting from the Johnsons.  Good luck to you.  Hope all goes well.  Angie  

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009

    Hi Arbella and Ashively1:

    I am still using the Johnson's baby shampoo but I do use conditioner with the shampoo.  Frank told me it was OK as long as you did not use conditioner 3 days before and 4 days after chemo.  It seems to work for me and thus I don't have to lose more hair than normal trying to comb it out.  I have also used my curling iron (on the ends only) of my hair as well as hairspray on some days.  I think both (curling iron and hairspray) are no no's with Frank....so if my hair falls out it will very well be my fault but I have managed to keep my long hair and I would look like a fuzzy headed freak unless I did something to try and style it!!!  The conditioner I use is Nexxus Humectress.

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009

    Arbella -

    I was told not to wash my hair very often.  I am washing it every Sunday and Thursday.  This is hard for someone who used to wash it daily.Wink

    I will let you know when I have hair thinning...

  • gmp300
    gmp300 Member Posts: 196
    edited December 2009

    Hi Girls!

         I spoke with Frank and he told me the name of a new shampoo that would be good to use besides baby shampoo. Baby shampoo seems to dry your hair.   I don't have all the info yet but Iam finding out and will be back soon with it.  Just remeber to use cool water when washing your hair.  You want to keep the follicles closed!  Talk to you soon,  Geralyn