Cold Caps Users Past and Present, to Save Hair
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2-boys mom: I got the Penguins for half the price by using ones that were not perfect. I can't see anything wrong with them except a few have pen marks on them (#s) but they work fine, the gel is good and the velcro is strong. Ask Geralyn about seconds. That was why I got mine so quickly, because she didn't have any perfect ones to send that quickly.
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summer70, I also had 12 weekly taxol + Herceptin. I was the first with that drug regimen to post on this thread, which I know because I read the entire thread looking for someone else who had had it! You are now the second person. I had great success with the caps - I essentially lost no hair. I was so worried before starting because I figured my helpers had 12 chances to mess up...but they did great and so did my hair.
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2 boys mom, I had my hair trimmed and colored within a week before starting the caps. My real hair color (when I was younger!) is dark brown, but I have very gray roots and I wanted to look normal as long as possible during this process. I usually color my hair (professionally) every 4 weeks. For me it was not an issue, as I had great success with the caps.
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PatinMN- how long after your last tx did you wait to color again?
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I also colored my hair before chemo. I had it done about 3 weeks before I started. I normally get blonde highlights every 6-8 weeks, so I didn't want horrible roots, so I had it colored a little darker. My stylist just used normal color and a glaze. I am 3 weeks PFC and I don't think the color caused any issues.
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I think 3 weeks before is alright to bleach hair as you have time to grow some natural colored roots - but, some natural roots are essential. I lightened mine six days before chemo and ended up with a lot of damage. I could see and feel little "balls" exactly at the joint between the colored hair and the natural hair which told me clear as day that something had happened. I had a lot of breakage at that point later on as the "ball" weakened and I ended up with my longer hair looking thin - as you can see beginning to happen in my avatar taken 30 days after my last chemo. It continued to break off for months and I was forced to slowly shorten my hair to just brush my shoulders to make it look good.
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marley2 - I colored at about 7 weeks PFC, but using a no-ammonia, no peroxide color (Clairol Beautiful Collection). It wasn't great, but definitely looked better than the stark gray roots. I used the Clairol Beautiful Collection color twice, and then went back to my regular color product used by my salon. I think most people do wait longer, but since I wasn't shedding at all I thought I would take a chance.
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Hi PatinMN- just saw your post on the weekly taxol thread. Yay- it's nice to find somebody on the same treatment plan! As you mentioned, there more evidence emerging that suggests weekly taxol/ herceptin, without other chemotherapy, is highly effective in preventing reoccurrence of early stage HER+ cancer. My oncologist had to seek permission from her board & I believe I am in the first in my area (Vancouver/ Vancouver Is.) to receive this treatment. Were you part of a study? I'm so glad you had great success with the caps
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Hi All! This thread is hopping! I'm glad to see so many ladies hearing about cold caps and giving it a try!
I am the one that used Advance Cold Caps. However I can not in good faith recommend the company at all! The local people were great They do the dry ice and also do a lot of ice for PCC users in Metro Atlanta. But Mike the "owner" and self declared brains behind he operation and cap design, not so much. The caps I was sent were well used and not consistent in size. Unfortunately I found this out during my treatment! One of them I could not even use as it was too small so I only had 5 to rotate. The cooler was beat up and had a broken off handle so we couldn't roll it and it was just written on with sharpie. Getting the idea?
Also the advertising has pics of caps that say Advance. This is deceptive. (and prolly photo shop!) My caps all said Elastogel, even the extras they sent when I complained about the first ones. Advance buys them and then rents them. You send them back after each treatment unless you do their do it yourself plan. Other people might use the same caps between your treatments too. Plus if you are going to do the do it yourself, buy the caps and just do it yourself. I wish I had known this was an option at the time!
I would highly recommend the Elastogels. SUPER easy to use and I had really good success. Find someplace else to get them though. Chemo Cold Caps rents the Elastogels and there are some other companies in Texas (I think) that rent similar products. I found them by doing a cold capping search.
If you are getting your own ice anyhow and not having them packed for you, I would absolutely suggest just buying them from amazon. They are around $525 for 6 caps and last I looked they had free shipping.
I will be happy to help anyone that wants to go this route. My husband even has instructions for outfitting the cooler for maximum cooling and rotation instructions, etc... He was the BEST capper ever!!
Best of luck to these currently in the trenches! Lynne
PS my blog is pitiful but I basically did it to show pics and cap change videos for anyone curious? Please don't expect an awesome blog like mdg has!
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I am in the same freaking out boat as WarrriorWoman! I am 25 days after first chemo(my third round is 2/18) and I started shedding on day 21- sheesh it is nerve wracking!
LawyerGirl- I am having the same chemo treatment as you have and I am praying I can finish with some hair, lol, since AC/T is supposed to be the toughest.
Hortense- Thank you for posting that reminder about washing back on the 7th, it helps and reassures.
Stay strong chickies! I just took this picture today- it is really dry and the shedding is scary but better than being bald right now I guess!
I lost my job of 10 years in the same month I was diagnosed(December 2013)- and I worked for the Cleveland Clinic hospital system - the next hardest part of PCC's besides wearing them is paying for them. Has anyone found resources for financial assistance for these? My husband is sacrificing big time for me to be wearing them and hoping they work. I love him so!
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summer70 - no, I wasn't part of a trial, but my oncologist told me that I was the first person for whom he recommended our chemo regimen. He told me that an oncologist out east somewhere (Harvard maybe?) whom he "idolizes" was using it in similar situations, and he suggested it for me because I really was on the bubble of doing chemo at all. And he wouldn't give me Herceptin without chemo. I do love my oncologist, but it really irritates me that he refuses to tell his patients about cold caps - even though the facility has a medical freezer and a dedicated room for cold capping!!! Not having to deal with dry ice was really a blessing.
deepcreek08 - your hair looks beautiful. I really hope the caps work for you, and that you will keep us posted. When you finish the AC are you doing weekly Taxol or dose dense? I don't know of any available financial assistance, I'm afraid.
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deepcreek - nerve-wracking, yes, but, you are shedding, not bald!
You should claim the caps on your insurance. It will probably deny the claim, but fight back. One lady on here a long time back, won and had most of her's covered.
Good luck!
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Hi PatinMn- thank you very much- I am praying it stays! I am doing dose dense everything with my chest port so it will be once every two weeks just like the AC. You are so blessed to have had a freezer! I am getting my treatment at the famed Cleveland Clinic and my MO had never heard of PCC. Then when I asked if the Rapunzel Project could donate a freezer the administrator in charge of the facility said yes but then he asked the Institute down at the main campus and they said no. That was very disappointing because dry ice is $150.00 per treatment on top of the cold caps!
I might just be the first person ever to have used cold cap therapy at the Cleveland Clinic. Won't that make for an amazing story? Praying my hair holds on!
Thanks Hortense! I will definitely try submitting for reimbursement when this is done!
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My cold caps are on their way! They should arrive on Tuesday and will start chemo on Thursday. I'm almost done reading all the posts and I'm writing lots of tips. Thank you to all of you for your help. I can't lie, I do feel a little nervous, because my husband will be my caps assistant. I hope he gets it right. I went for another opinion and they were supportive on the use of the caps. The doctor had heard about them and said that they had worked. They also offered to ice hands and feet, this, they'll do for me. They did say that they don't assist with the caps, so, I'll have to thrust my dh. Also, they told me I don't have to get a port, now I need to cancel all the appts. with the first dr. who had scheduled me for port surgery on Tuesday and a visit on Wednesday. I'll have those days to get all the supplies needed for cap day. I don't regret the change of centers. The first center would have been too much to get over to the 6th floor where they are and I did not feel any support from the nurses. This new place is more welcoming, chemo unit is on ground level and they were rooting for me and said they would do their best to accommodate my needs.
Deepcreek- your hair looks beautiful, when I saw the picture I thought you had not started chemo yet.
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I wish they had a "like" button here. So happy for you sweet mom! My DH saved my hair and did a great job. Don't worry!!!
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Deepcreek - As your photo is current, I can tell you that you are on a different boat from the one I am on! My hair certainly doesn't look like that! My hair has thinned a lot and I shed a ton between days 18 - 29. Interestingly, days 30 & 31 it was very little and then this AM it picked back up again and today is eeeeee HAIR WASHING DAY! I am hoping my big shed is coming to an end but there is no predicting anything.
The successful effort to obtain 50% insurance reimbursement on the cold caps is detailed a couple months back in the thread. If I am correct she had Horizon BC/BS of NJ and needed to appeal the claim after submitting all receipts and having a prescription from her MO. Also, MTV just posted how she saved money by using the slightly damaged caps but that wouldn't work for you now.
Sweetmom - It sounds like everything is falling in place for you. The first infusion is stressful with or without the caps. After that, you'll know better what to expect.
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Good luck, sweetmom, I'm sure you'll do great. I found the prep work & anticipation before treatment actually started the hardest. I was really nervous about my husband's ability to assist (he's been BALD for years so he didn't really understand why it was such a big deal
) but he had the routine down pretty quickly and yours will, too. I went to the movies with my kids yesterday & had a moment where I was just so grateful to be going through this crazy time still looking like myself (albeit with fuzzy hair that is begging for highlights!).Deepcreek- your hair is gorgeous!
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Sweetmom, we're rooting for you (and hubby)! I recently had dinner with my best friend who was my main helper. We were marveling how good my hair looked and then she confessed how nervous she was that they would mess up the caps and I would lose my hair. It's a huge responsibility. I have expressed my heartfelt thanks to my whole team many many times, but I must confess I never realized how stressful it was on them. They rearranged work schedules and pushed off family obligations to be by my side during treatment and I am forever grateful.
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Regardless of how my hair turns out, I am making my last chemo a party for my 2 helpers. I'm having tee shirts made up, I purchased friendship pins and I'm getting them gift certificates to a fine local restaurant. They take their responsibility seriously and have made me a priority in their lives. When people come through like that it is something you never forget.
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I got gifts for each helper too. I got one a Penguin Pandora charm since she loves her Pandora bracelet. I got the others Pandora rings that match one of my Pandora rings. My sister and BFF wear their rings all the time. Makes me smile when I see it.
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On day 27 and still lots of shedding but my mom keeps telling me it doesn't look too thinned out yet (she keeps having to talk me down form the ledge). It catastrophic everytime I pull all that hair out though.
Have any of you gone to a Look Good Feel Better session while in this chemo/cold-capping process? I'm signed up to go to one tomorrow and am wondering what your experience was.
Deepcreek, your hair looks amazing. I hope you can get insurance to pay for some of the cold-capping!
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girlwithacurl, I went to the Look Good Feel Better class when I was about halfway through chemo. I was the only one there with hair. I mentioned cold caps as the reason and immediately wished I hadn't. The other women had never heard of them and it was obviously too late to do anything to prevent hair loss. . The class itself was good- lots of free makeup.
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Good luck sweetmom! It is worth the effort! I am few days behind WW so I am shedding tons but thank you! If you need a tip for an inexpensive thermometer here is where I found mine on Amazon, its a Kintrex IRT0421 http://www.amazon.com/gp/product/B0017L9Q9C/ref=o...
girlwithacurl- I haven't gone to Look Good Feel better yet but I am thinking about calling for information this week. Let me know about your experience please? I am not sure what I will say about still having hair, it could go either way like jc254 found out. If we don't say anything then they can't share it with anyone else they love who might be diagnosed but if we do it could be really sad....sigh.... Also, there is something called the Gathering Place here in Cleveland and I am going to look into that too.
ww- those are great ideas on how to thank the helpers. I haven't decided yet on what to do for them but it will be good because they are all sacrificing to help me. I have my parents, my husband and my best friend. Both of my parents are former military so they have the schedule down to a science- with a check off spread sheet and everything for the timing!
I keep thinking of this verse- not only does He know the very number of hairs on head each day as it changes, He is holding me in His hands through all this.
Matthew 10:29-31 Living Bible (TLB)
29 Not one sparrow (What do they cost? Two for a penny?) can fall to the ground without your Father knowing it. 30 And the very hairs of your head are all numbered. 31 So don’t worry! You are more valuable to him than many sparrows.
Hugs Ladies!
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I'm on day 17 and am seeing some shedding now. Especially in the morning. Trying to stop myself from running my fingers through my hair - I have curly hair which tends to dred quickly if I don't comb it each day. Which I also have avoided unless absolutely necessary. Good news is I still have my hair! So glad I decided to try the cold caps. Sweetmom- you can do it! My husband is also my helper and he picked it up pretty quickly. You'll also get used to them and be able to feel when they are on properly too. Remember to practice. You'll have more questions after that. It's a production but it goes by fast. Warrior Woman - I am not far behind you and I think the party idea for the last chemo is a wonderful idea. My second round is this week and I keep thinking I'll be halfway done. Deepcreek - I agree with everyone on this thread - your hair is beautiful! Hair washing due tomorrow - deep breath -
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On the topic of gifts for helpers, I got pewter penguin pins for my two main helpers - found them on the internet and they are adorable. I also gave them each movie gift certificates and a book. I had a lunch at a nice restaurant for all those who helped me, with capping, meals, moral support, etc., and when I got there one of my helpers had put blue duct tape on the penguin pins, making a cold cap with a chin strap and everything - it was the cutest thing ever! I can't believe I didn't get a picture of it!
Good luck to all current cappers - remember to drink lots of water and keep those hands out of your hair!
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You know you're a capper when...
You come out from hair washing with a big giant ball of hair in your hand and instead of screaming in fear your DH says, "Hey, that's not bad!"
mdg - I remember reading about your great Pandora Penguin idea. It's such a wonderful remembrance without a stupid cancer symbol.
Pat - Too funny. It's like we're in some sort of club where the blue cap is the secret handshake. Travel the world and one never knows where that blue cap will be spotted...could be on a penguin pin!
Girlw/aCurl - You're well into this for your mother not to be able to notice thinning. It sounds like you're having very good results. People who don't know me cannot tell but those who do know very well how thin my hair looks. It is traumatic to have wads of hair in your hand.
Artsmart - Hold tight. You may be starting the most stressful part of this. Day 17 is when I first noticed shedding and by day 18 it really picked up. I've had days where I could not believe how much fell out and yet I still have hair! I think it is slowing down as others suggested it might. Yesterday, day 33 wash, I lost about 1/3 of the amount of hair I lost on day 29 wash.
I am scheduled for the Look Good Feel Better class in a couple weeks after my 3rd TC. I plan to play it by ear and only mention capping if I am asked about my hair. There is no way of predicting how others may respond. I have gone out of my way to avoid upsetting women who have lost their hair. At the same time, I chose to do the research and invest energy and resources into this. I am not going to allow myself to feel badly if someone is upset that I have hair and she doesn't.
As stressful as shedding may be, I am well aware that I would be completely bald by now without the caps. For me this is not about vanity or privacy. For me this is about an effort to protect myself from one more cancer related trauma. This entire experience has felt like a bad accident where I keep getting slammed again and again. I'm trying to keep my hair so that I don't have to look in the mirror and face myself without hair - another slam.
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Deepcreek- Thank you, you are God sent. I was going crazy looking for that thermometer. I looked at your message and thanks God He knew exactly what I needed. Should receive the thermometer tomorrow. I'm like a kid on Christmas eve, waiting to open the presents.
Reading about the presents for the helpers, I also thought we should have a Cold cappers reunion every year. We all get to meet each other and talk about our experiences.
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Good luck sweetmom! I know I was really nervous about the first one, but I think my mom was even more nervous about not doing it right. We didn't practice until the night before, but the practice was still very helpful. Once you and your dh have the routine down, it won't be as scary!
mdg- thanks for the idea of the Pandora charm! I have been trying to figure out what to get my mom. She loves her Pandora bracelet, so that is perfect! The penguin charm is retired, but I just found one on Etsy that comes in the original box and everything.
I hope everyone is having a fabulous Monday! Just over 3 weeks PFC and my hair is still shedding pretty consistently, but I was expecting that. I still look like myself. Starting my 33 rounds of radiation tomorrow!
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Hi Daye, I'm glad you're doing well and your hair is hanging on. I remember your first few tentative posts inquiring about the caps, and now here you are all finished and offering support to others. Doesn't that feel great? Hopefully you'll get throught radiation with few side effects. In my experience, although annoying and inconvenient, radiation was a piece of cake compared to chemo.
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Hi guys,
Sorry if this information is redundant but I don't really follow this board any more. (The cold caps worked for me though! Happy to report.) I saw a study in San Francisco where they were going to research the efficacy of the cold caps. Don't remember much more about it but if anyone is in the bay area it might be a way to try them for free. I'm sure it wouldn't be too hard to find out more info by just googling it....
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