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Cold Caps Users Past and Present, to Save Hair

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Comments

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    I have one picture my sister took with her cell phone.  She texted me a copy but I can't seem to save it or forward it.  She doesn't have internet on her phone, so texting is all she can do.  Hopefully others have pictures they can share!

  • starella
    starella Member Posts: 101
    edited October 2010

    which way 2 run,  did you have a headache with the elasto caps? i tried one on and it seems heavy..start chemo tomorrow. How many caps did you use during the treatment?

  • Lmflynn
    Lmflynn Member Posts: 273
    edited October 2010

    Hi everyone,

    I just love this message board.  I am scheduled to start chemo TCx4 on November 12th.  I have talked to Frank and called one of the women on his list here in Texas. - sent all my paperwork and setting up my friend helpers for my chemo days!   And getting all the necessary items - thermometer, electric blanket, coolers, mole skin etc... My sister went through same thing last year and I did not spend as much time researching saving your hair -- but did tell her there where caps etc.  Her oncologist said they don't work... what a difference a year makes because I've met with 2 oncologists at two differnet places and both sort of give in that they do work.  I had my Tivo all set for today -- for GMA -- going to change to Thursday. 

    Ladies -- can't thank you enough for your time and help on this site.  It really does help a lot of people I think -- and know that it does me personally.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2010

    Question ~

    I'm kind of a research nut.....don't even know the definitive answer on whether or not I will need chemo.  I'm having a NSM BMX on Nov 30th and will obviously know more after the pathology.

    However, if I DO need chemo.... will I have enough time to get prepared, order caps, etc??  Are they really expensive? Do they ship quickly?  It sounds like you need to buy quite a few of them, not just one? Has anyone found out a way to get them covered by insurance?   My DH doesn't think I should be focusing on this sort of thing yet ...but I don't want to be caught off guard, since I'll be recovering from surgery when I find out the info and would like to have some groundwork done while I'm waiting to make it easier on myself. 

    I am SO glad there is a place like this for you wonderful ladies to share!

    ~ Susan 

  • jpmercy
    jpmercy Member Posts: 94
    edited October 2010

    Hi All,

    i know they are desperate for a video in action so i emailed Morgan and told her i have chemo tomorrow she is calling me later to tell me how to video tape it im hoping the use of my smartphone will be enough that way i can tape a few seconds of it and then email it to her straight from my home im figuring they only want a second or two. but lucky for me i guess that i have chemo tomorrow! haha it will brighten my spirts while im there! :) number 2 of 12 tomorrow..... the countdown continues! also i work in an elementary school as a social worker... i plan to continue to work through treatment and it is a relief to know im not going to loose my hair i dont want to look different to any of my students and honestly knowing my hair is going to be there makes this a weekly issue not an everyday issue....minus the few side effects of course :(

  • jpmercy
    jpmercy Member Posts: 94
    edited October 2010

    Hi All,

    i know they are desperate for a video in action so i emailed Morgan and told her i have chemo tomorrow she is calling me later to tell me how to video tape it im hoping the use of my smartphone will be enough that way i can tape a few seconds of it and then email it to her straight from my phone im figuring they only want a second or two. but lucky for me i guess that i have chemo tomorrow! haha it will brighten my spirits while im there! :) number 2 of 12 tomorrow..... the countdown continues! also i work in an elementary school as a social worker... i plan to continue to work through treatment and it is a relief to know im not going to loose my hair i dont want to look different to any of my students and honestly knowing my hair is going to be there makes this a weekly issue not an everyday issue....minus the few side effects of course :(

  • Drim
    Drim Member Posts: 134
    edited October 2010

    Lmflynn - good luck!!!

    SusanG - I think it's great that you're being proactive provided you are not making yourself nuts with the what if's (but it doesn't sound like you are doing that). I'll try to answer your questions as best as I can:

    1) You should have enough time to prepare because they won't start chemo until you are recovered enough from surgery. You will have several weeks post surgery to start chemo if you need it.

    2) From what I've seen, Frank does a great job making sure you get your caps on time.

    3) You don't actually buy the caps. You rent them. And you are correct, you need to rent a lot of them. I haven't seen anyone rent anything different than about 14 of them. They cost about $30+ or so per cap per month depending on the exchange rate (they are from the UK). You also need to put down a deposit but they refund that right away after you return the caps. The total cost will mostly depend on the length of your treatment. I had the caps for about 2-1/2 months.

    4) Not sure what the deal is with insurance. I haven't tried to submit anything yet as I'm pretty sure what I have will not be accepted so I need to request more back-up. It probably depends on the insurance company. Some may be willing to entertain in while others will not.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2010

    Thank you so much for the info!

    Sounds like I would have to plan on at least $400+ per month for the caps...plus the dry ice, etc.

    Why do you need to rent so many?  It sounds like you wear them before, during and after your treatment....so for most of the day that you get chemo?  Do you need to have a lot of them cooled and ready to go so you can change them every hour or something? Hence the reason for the quantity? 

  • jpmercy
    jpmercy Member Posts: 94
    edited October 2010

    Susan,

    yes you change them out every half hour, i have 13 of them but Frank will look at the type of chemo you are gettign to figure out the halflife for after and how many you will need during and after chemo. also, i lucked out, the place where we got the dry ice insisted that we take it free of charge when he asked what we were using it for...he even threw in a pair of gloves to use while handling the dry ice!  

  • jpmercy
    jpmercy Member Posts: 94
    edited October 2010

    oops and the number of caps for before chemo too!

  • Ang7
    Ang7 Member Posts: 568
    edited October 2010

    GolferGirl~

    Thanks so much for filling me in about your highlighting.  Since my last chemo was in March I believe  I feel safe enough to try it.  I will let you know...

    SusansGarden~

    I sent my paperwork from Frank into BCBS and they sent it back saying they needed more information.  I spoke to Frank's assistant and she wants to know exactly what it is BCBS needs.  I now need to contact BCBS and find that out...I will be glad to get even a portion of my money back.

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited October 2010

    GolferGirl:  Thanks for letting us know about getting highlighting done.  I am going for my first "coloring" since being done with chemo 7 months ago.  I was so nervous to make the appointment and finally convinced myself I should be safe.  I cannot wait until Saturday!!  I will let everyone (especially Ang7) know how it goes on Monday.

     I can't wait to see GMA on Thursday.  I have my dvr set since I will be at work.  I sent a couple of pictures to Morgan at GMA this morning but my husband can't believe I did.  In 2 of them I have the moleskin going across my forehead and I look ridiculous.  But hey we didn't do this for what we look like during the treatments, only for afterward. 

    Take care everyone, Kelli

  • cmksocal
    cmksocal Member Posts: 163
    edited October 2010

    Hi All,

    I'm a little shell-shocked right now.  I did 4 TC @ 3 weeks in July - early Sept and lumpectomy on 9/28. The TC shrunk the tumor enough for me to have a lumpectomy.  I had a SNB before chemo and nodes were clear.  Today was my first visit with the oncologist since ending chemo and he said that  after radiation we might want to do more chemo!  He said Doxil, once a month for 4 months.  There is no hair loss with Doxil, he said.  

    Because I was so shocked and because it is not a foregone conclusion that I will do the chemo, I didn't have a good conversation with the onc. What I am most confused about is the criteria on which to make an informed decision about more chemo.  I asked if this was based on a Pet Scan, "no." It seems to be based on the shrinkage of the tumor.  Chemo decreased the tumor moderately -- but not completely.   The tumor was removed with minimum margins on 1 side but wide margins on the other sides and since I'm doing radiation, the minimum margin was deemed "good enough."

    I'll be posting this in the July 2010 Chemo thread -- so please forgive the duplicate.  I am very interested whether anyone else had this process.

    Colleen

  • EastCoastGrl
    EastCoastGrl Member Posts: 206
    edited October 2010

    I'm so glad it was moved to Thursday!! I actually slept past 6:30 am today for the first time since surgery! Woke at 9 and was so upset I missed it. I didn't DVR it because I'm up and downstairs by 7am everyday. LOL Was, so glad to see I didn't miss it afterall. :) I DVR'd it right away this time though, just in case!! hah

    I am still undecided if I will do chemo. I am awaiting my Oncotype score. But if I do, I will be using these caps as well as the "mittens" and "slippers" from the Elasto Gel company to help protect my nails and neuropathy (I hope anyway!!) in my hands and feet. And plan to keep ice in my mouth too! I'll be FROZEN from head to toe. Oh my!

    Coloring the hair.....so good to hear all is well. I have very dark natural hair that I color a lighter brown and then highlight quite heavily. Have been this color for at least the last 10 years. Would be strange going back dark. I would be counting the days to color/highlight as well. :)

  • Ang7
    Ang7 Member Posts: 568
    edited October 2010

    Oh cmksocal~

    I don't know what to say...

    I have not heard of Doxil or having chemo again after radiation.  I hope some of the ladies here can give you some insight on why they would suggest this treatment.

    Hugs to you.

  • NewBride
    NewBride Member Posts: 126
    edited October 2010

    Are any of you involved with The Rapunzel Project?  It appears that I will be interviewed by my local NBC affiliate in a couple of weeks and I think it might be a good opportunity to speak about getting freezers in cancer centers and making things easier and more affordable for the women who follow us.  I have emailed Shirley and her partner but I'm interested in what all of you have to say too.

  • Drim
    Drim Member Posts: 134
    edited October 2010

    NewBride - The Rapunzel Project got a freezer for my chemo center recently (although it hasn't been used yet -they need to amp up the electrical). I have spoken with Shirley and Nancy via email only and they are both wonderful people. I think what they are doing is amazing. That is awesome that NBC is getting on the bandwagon now. Please keep us informed. Perhaps we can see it on the net if we're not in your local area.

    GolferGirl has a freezer in her center. I'm sure she'll see this and comment.

    Colleen - I'm so sorry for this latest news. It's sounds like your doc is taking extra precaution. My best friend's mom is on Doxil and tolerates it extremely well. I would question him about why exactly he wants to do this and if you need some other scans or tests. It sounds like a great topic to start - results of neoadjuvant and what happens next.

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    Hello girls,

       I just spoke to Shirley and the producer of Good Morning America and she wants MORE pictures!!!  She wants to show how many women are using the caps across the USA!  That's great but she needs more pronto!  I know it's late but she said it's not to late to use them so if you have any please email them to 

    morgan.zalkin@abcnews.com

    Thanks Everyone!  

    Geralyn 

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    I finally figured out how to forward the picture of me in a cap that was on my cell phone.  I sent it this morning.  Hopefully its not too late!  Can't wait to see the story tomorrow!

    NewBride- My cancer center has 2 freezers for the caps.  I have to believe it makes the whole process so much easier!  I didn't have to worry about dry ice, coolers, gloves or thermometers, the caps were there, they were cold and the freezers kept it all at an even temperature.  I just had to show up and actually wear the caps!  Also, I paid a per day fee for just the rental of the caps.  I can't remember now, I want to say it was around $125 per day?  Not sure, but think I ended up between $500 and $600 for 4 treatments total.  In any case, I know I had it easier having the caps there, already cold and ready to go as opposed to the womend who have had to figure out how to get the caps, where to get dry ice, how much they need, etc, etc.

    I hope all cancer centers get coolers someday!

    EastCoastGirl- I've been coloring and highlighting my hair for years, too.  One thing, if you do do chemo and the caps, I would have your hairdresser dye your hair close to your natural color before you start.  And use a dye that fades over time.  My hairdresser suggested that and did it for me about a week before I started chemo.  I was so glad she did that because then during chemo and for the 3 months after chemo when I did not color/highlight, I at least did not have a stripe between colored/highlighted hair and not.  As my hair grew during chemo and after, it kind of just blended in with the stuff we had colored back to normal so it wasn't too obvious and the ends evenutually lightened up due to the fade so it looked kind of naturally highlighted after a while.

  • Drim
    Drim Member Posts: 134
    edited October 2010

    GG - Wow - I didn't realize you don't even need a thermometer if you have the freezer. I thought people had instructions for different temps depending on the thickness of your hair. Guess it doesn't really matter that much. I can't even imagine just showing up and everything is there ready to go. I guess you still have to connect with Frank in order to him to figure out how long to wear the caps for. I'm also wondering if you get billed by your center or MSC. I would think if it's by your center it would make it easier for insurance reimbursement.

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    Hi Drim- No, I still had to work through MSC for billing.  MSC billed me, not my center. I haven't tried for insurance reimbursement yet.  I also worked with MSC to get my protocol.  Basically, the center has them there, but you still have to coordinate payment, protocol and usage with MSC.

    I know gmp300 would probably say to still use a thermometer with the freezers, but I didn't and it worked out fine.  I had a thermometer the first treatment, and the caps were all uniform in temp. I think the freezers cool evenly unlike the dry ice.  I forgot the thermometer the second time and didn't bother after that.

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    Hi Golfergirl!  Glad you were able to send your picture in!!  She wanted more that's for sure!  Your right.  I would still use a thermometer with a freezer.  Things can always go wrong-nothing is perfect and you don't want to take a chance.  Michon can tell you what happened today on the 4th floor at the same place you had your chemo.  She was helping one of her friends.  Everything worked out but thank God for thermometers!! I'll let her tell the story.  We definately need better freezers there.

    Drim --  Claudia got reimbursed 1500.00 from her insurance by many many tries and wording it right.  Something like calling it a cranial prosthesis.  (wig)   They don't know what a cold cap is.  I will look back in my emails and find the exact wording to send to your insurance company and try to get some money back.  I never tried.  I should of but didn't know at the time.

    Coloring hair is fine before chemo but 2 weeks before chemo is Franks recommendation.  Like he tells me all the time -what is good for one person may be poison to another.  Better be safe than sorry.

    Gotta go set the DVR for tomorrow!  Can't wait to see all the pictures!!  Thanks everyone for sending them in!!!

    Geralyn  --  gmp300 

  • michcon
    michcon Member Posts: 121
    edited October 2010

    I would love to hear the wording to get reimbursed by Insurance. Mine covers a wig, even a real hair wig which is rare, they do call a wig a prosthesis like you got an arm or leg. ha. I think I'll call tomorrow and see where I can get with convincing them that cold caps are saving them money from me having to do a wig, so why not help out with the cold caps cost right?

    Today was crazy, helped my friend do her cold caps. Very interesting to be on the other side. She is doing it where there's a freezer, but unfortunately it's not cold enough and the hospital has no interest in replacing or repairing it. Sad huh? So, she had to bring dry ice and coolers. We have a plan now for how to do it next time that's less chaotic, but it's was very disappointing to her to not have the freezer working properly. I wish the hospitals and doctors would get with it and understand women and even men want to do the caps so they should help make it more convenient. I get that they can't medically recommend them or help with them. But, they could lose business if women switch doctors in order to use the caps or even worse choose to not do chemo because they don't want to lose their hair.  

    Can't wait to see the story tomorrow on GMA and maybe even my pic! 

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    OK-I need another favor from all the penguin cold cap users.  I got a call and from someone helping Frank with GMA and all of the publicity it will get.  Sad but true--most will be good reports from our testimonials but there is bound to be some untruths coming out so if we can be watchdogs for the cause and correct any inaccuracy's that we may see or hear to help move this forward.

          Example:  If something were published or written saying -  Some doctors may say "it doesn't work".  We can phone in and say it does work.  We know because we used them.   Things like that.  I get that now all the time and it is bound to get worse with more publicity.  Or "They don't work on AC"  An AC user could call or write in " Yes they do I used them"  --Hey Chey!! LOL!!

       Just keeping an eye and an ear open for any negativity coming out that is untrue.  I think we all are happy to keep our hair and want to share it with others.  This is our chance to let the USA know that-- Yes we are using the penguin cold caps and we are saving our hair and we are HAPPY!!    And we want others to know too!!

    Thanks Everyone,  Geralyn 

  • NewBride
    NewBride Member Posts: 126
    edited October 2010

    Thanks so much for the info on the freezers.  I am leaving for my first camping trip since my diagnosis in the morning (right after GMA) so I will be out of touch for a couple of weeks but when I get back I will probably want to talk more about how to convince my cancer center to get a freezer or two.  Maybe references from some of the centers who do have them will help.

  • jpmercy
    jpmercy Member Posts: 94
    edited October 2010

    I am dying to see the segment...i am at work and i cant wait to get home and check my DVR!! Drim, my mom said you did a fantastic job! and i was the crazy girl with my mom that showed a few times on how to do cap changes....not my most flattering moment but hey i will be KEEPING my hair and look flattering after this is all done!!

  • shadow2356
    shadow2356 Member Posts: 93
    edited October 2010

    I didn't get to see the Good Morning America story yet since I am at work. Here is a link to their online story:

    http://abcnews.go.com/Health/OnCallPlus/cold-cap-therapy-women-chemotherapy-hair/comments?type=story&id=11985624

  • gmp300
    gmp300 Member Posts: 196
    edited October 2010

    The show was great!!!   I cried when I saw everyone!   They really did a nice job and was on for at least 10 minutes!  If you didn't record the show you can see it on line!  Everyone looked beautiful to me!!  Geralyn

  • Drim
    Drim Member Posts: 134
    edited October 2010

    Jennifer - Thanks so much to your mom! I think you look great!! So pretty! And they showed you a lot! If your work does not block videos you can watch it on line now!!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited October 2010

    Great job Drim and Jennifer!  It was so great to see you both and to have such positive proof out there!  I'm telling all my friends and family to check it out online!

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