Cold Caps Users Past and Present, to Save Hair
Comments
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Maybe it's my imagination, but does anyone get the feeling there's some advertising happening on this board?
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marley,
Chemo cold cap fee is: Single Session Pricing: $395.00 plus tax where applicable* what exactly does it mean? I need to do 8 rounds of chemo so that means 8 sessions?
Thanks!0 -
Jianachi,
I just sent you a PM.0 -
4sewwhat, thanks!0 -
JC - I'm not sure about advertising, but I can assure you I have only shared my personal experience. Which so far has been successful. I went in yesterday for my Neulasta shot after my 3rd tx of TC on Thursday. The previously skeptical and not altogether supportive nurses were so impressed that I still have my hair! No bald spots, no clumps, just a little thinning up near the left ear where the cap probably didn't fit as snugly as it could have. Today I also shared that I am undergoing chemo with a fellow volleyball mom who has known me for years. She knew about my earlier diagnosis in 2009, but had NO idea I was going through this now. That's important to me, to be able to go to my kids' games, participate in the everyday mundaneness of life, without everyone knowing that I am treating this cancer inside me. My kids are 10 and 12, and I am trying to keep their lives as normal as possible. Most days it seems, its not about me, but about them and their age- appropriate concerns. The way it should be.
I know I will lose more hair based upon the experiences of those on this board, but I still look like me. And when my hair starts to grow in, it will just be filling in, not starting from the beginning, which means I will feel like, and look like me, so much more quickly. One of the tipping points for me in using the cold caps was the stat that 100% of women using TC will lose their hair and 6-8% of these women will NEVER grow back their hair. The thought of wearing a wig for the rest of my life was just too daunting. It is expensive and very time consuming, and a personal decision, but I am thrilled with the results so far.
Good luck to all of you!0 -
mfm, I was in no way referring to you about the advertising. I'm glad you're doing so well with the caps. I finished 4 rounds of TC about 4 months ago and kept most of my hair. Cold caps definitely helped me keep my life as normal as possible during treatment and there are people at work who still don't know what I've been through.
Jianchi, you can rent cold caps directly from the company. Although it might be helpful for some to hire a service to assist with the caps each treatment, it is definitely not necessary. Most people are able to handle it on their own with help from family and friends.
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Thank you JC.0 -
jc254 - I thought the same thing.0 -
Guess the advertisement comment was meant for me. I had one week from when I was told I had to have chemo to my first treatment. I was so grateful for all the info and advice I got from these discussion boards. Certainly didn't mean to sound like an advertisement. I'm not even far along to know if they are going to work.0 -
At the risk of making anyone grumpy, I want to chime in about the advertising thing. I was recently quite literally verbally attacked on another thread for no reason accept it is a tight knit thread and they run off most newcomers. I am a little sensitive about that because these threads are here to help everyone and supposed to be a safe place for us and help us along this crappy road we are all traveling.
I don't for a minute think newcomers are not welcome here. I do think that it is extremely hard to know the intent and emotion behind the posts and sometimes people get caught up in that. And sometimes people take things wrong, and sometimes people end up hurt when it was unnecessary and not intended.
I know a couple of companies have been mentioned lately. I don't know anything about the most recent one, but I do know more than I would like to about the one before that. I had a very unpleasant experience with them as did some others back around page 90. The owner himself had told me he had been removed from BCO. I haven't posted by name up until now, but I will be addressing that very soon here once I have all my ducks in a row so as not to post anything that is not factual. I want to be able to help people know how they can do this for themselves and cheaper. But I also don't want anyone to get treated the way I did by this company that thinks they are so advanced.
I have PMd some people instead to tell them of my experiences and to try to help them with information.
As for the advertising, I have talked about the fact that I used ElastoGels by name, even though I did not mention the company I got them from before. I did rent them, but if I had known I would have bought them and passed them along instead of someone else buying them and renting them to me at a profit for himself.
PCCs certainly get mentioned here often enough even though none are actually promoting them for any reason other than to help others along.
I choose to believe that is what has been happening lately. The new posters are just giving information to help others along and sharing their experiences because they are excited about them. (I wasn't going to be a rep for the company, but I was doing a photo timeline and making videos and doing tips and other writings for them. That is how my blog came to be because I wasn't going to let them use that, but I wanted others to have access to the info. It sure was not because I wanted my picture on the internet!!!!!)
I , like many, lurked for a long time and gained a lot of information and hope from all you brave ladies that came before me. Then I got brave enough to start posting after I was already done with chemo and capping and knew I had been successful at it.
I hope I didn't step on any toes! It certainly was not meant that way. I just know how it feels to think people are mad or don't want you on their thread when you really need the support along the way and meant no harm. Until things show otherwise, that is how I intend to treat things here.
Hope everyone has had a great weekend! Hugs and Prayers to all at whatever stage you are at in your journey here!
Lynne0 -
4sewwhat and ALL cold cap users-Miscommunication is a huge problem with posting on the internet, words and their intentions are often misunderstood, people get insulted or hurt. It's especially heartbreaking when it happens in this context. We all have been through hell, or are still passing through, and we seek sanctuary in this place. I looked at the Chemo Cap website. What they offer is a 'service'. They provide 6 Elastogel caps, coolers and dry ice for $395.00 per treatment. This cost might be worth it for some people, less to worry about shopping for coolers, dry ice distributors, etc. I am skeptical because they only provide 6 caps and don't mention how much dry ice they provide...The difference in cost between this service and Penguin (which doesn't provide service, only supplies cap rental) for 4 treatments is $800.00 more for Penguin caps (incl. $500.00 required deposit).0 -
You are absolutely right that for some it is well worth it to get the service and have everything ready for you. I only had 6 caps and it was just fine. They were cold enough by the time we rotated back around to them. Where I ran into trouble was that the caps I was provided were not consistent in size and they were well used and had lumps, creases, etc... Unfortunately we just had to work with that because we picked them up at the dry ice company on the way to chemo and didn't know what we had until we were putting them on my head. My last tow treatments we had to work with just 5 caps because one was so small we could not use it. That is probably why I wish I had just bought my own so I knew what I had to work with.
Plus you can get 6 of them for $510 and free shipping. That makes this really affordable to a lot more people, but they do have to do more of it for themselves. My husband and I are working on instructions to outfit a cooler and have offered to do so for people that can't do it themselves, at no profit, just cost of cooler and simple supplies. Where we run into trouble with that is if it needs to ship to get to those that need it. If they can do it themselves we are trying to provide help to do that.
As always Makingway you always have great input. I love your website and visited there for tips several times along the way.
I just want more people to know about capping and what the options are. I couldn't afford PCC and wasn't sure I would have consistent help with them. My DH was my main capper and he was intimidated by their process watching the video because he was rally worried about messing this up for me! He did an awesome job and would have with any caps! I could barely afford the caps I did get. After getting a "do it yourself" special deal at $289 a treatment it was still a little over 1200 with some shipping charges. If I had had to pay for ice that would have added more. That was the "deal" I got, the ice was comped. So to me doing it for $510 plus ice would have been a good deal since I did the rest of the leg work too and never was provided the "kit" that was supposed to come with the caps, etc...
I am just so excited and thankful when I see success stories here, new people starting, and even those that try but are not as successful because I know that this is going to make a huge difference in the future. Hopefully the near future.
Take Care All!0 -
4sewwhat - thank you for you recent posts. I tried to go back to page 90 to learn who the company was but it just took too long. There are a lot of posts on this thread!
Where appropriate I am advocating the cold caps to new BC patients and I would like to be able to pass on negative input as well as positive input. If you are not comfortable naming the company, could you PM me just so I know. I also think there is no wonder product. We used Penguin and it is a manually intensive process - not all caps fit the same, sometimes the velcro was loose and my husband gerry rigged something that made me feel like my face was in a g-force ride - and there are some glitches with temperature, but it seemed the best choice for me at the time, and we didn't have a lot of time between when we learned of the caps and the treatment date loomed.
I've seen some video clips for the DIgniCaps going through FDA approval right now - they look so much easier - one cap, with a hose to chill your head and a little cooler next to you. Wouldn't that have been nice! But for now, we have to go with what we can get and what we can afford. And, like I said in my earlier post, it is doing what it is supposed to do. Helping me keep my hair and my (cancer) anonymity.
I have one more treatment to go, then 4 months of shedding apparently (sigh), but once I am done my treatments, I am going to work on getting a donation of a Cold Cap freezer from the Rapunzel project to my infusion center. Then patients can just concentrate on sitting through the treatments and not worrying about all the prep stuff in the morning.
I encourage anyone trolling these boards to help them with their decisions to reach out and ask questions. I've found so much great advice and honesty here.
p.s. I've done the math and after all the money I spend having my hair colored, hi lighted, cut, and the products, and the occasional pedicure or manicure, I think we are breaking even if you compare 6 months of that to 6 months on the CC regime. Not that I really want to share that info with dh - He thought it just came naturally
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marley - I was not referring to you at all. I'm so sorry you felt that - I can see how you did - but it wasn't your post!
I have no problem with people saying what company they used. The more options, the better, esp. if something is cheaper than PCC and it works! I want as many women as possible to be able to do this, if they so choose.
I just get concerned when posts look like an advertisement for a particular company - a single post that repeatedly mentions the name of the company with no follow-up posts just catches my attention and makes me suspicious that it is spam. But I am probably overreacting. So sorry if my comment made any newcomers not feel welcome. That is the last thing I want to convey!0 -
Dance, I think I know what post you are referring to and that is the company I am talking about! I would not put that past him at all. I will finish lining up my ducks soon and get my post on here with details. Just been busy with kids and rads daily, but almost done!
Happy Good Monday Morning to All! I got a haircut yesterday for the first time since before chemo. Sadly it is pouring here today and I can't show it off properly!
Editing to say that while I would not put much past the man I was referring to, I don't want to offend anyone that might innocently be posting to help others along with information and support. We all need as much of that as we can get!
Happy Monday all!0 -
4sew - you are correct, and I agree!0 -
I was complaining about loosing my hair on another thread a member suggested I check out this one, and I am so glad I did. How could I not have even HEARD about this option when I did chemo in 2007? Still, I was VERY skeptical and I read hundreds of pages in this thread and exchanged PMs with some women and talked to them on the phone.
I went through a similar process when considering doing my BMX with immediate DIEP in New Orleans. Read the thread and talked to women.
If I had simply done what my doctors told me I would be sitting here 5 months post diagnosis with no breasts and no hair. But instead I feel like I can move on with my life. Going the route I did took a huge leap of faith, and it has paid off.
What makes the threads here on BCO helpful is that they are REAL testimonials from REAL women. There are success stories and the failures, both of which are important. I'm glad there are experiences here from women who have used different products. Also I think it's helpful that we can discuss the options to purchase/rent the equipment because it IS ridiculously expensive.
Having sales people who have no first hand experience with the products here does not make me feel safe and I don't think they belong on this thread or the BCO forum in general. I come here to be in community with other survivors.
I don't talk about my hair on other threads because most people do experience hair loss and I know how traumatic that can be since it happened to me the first time I had chemo.0 -
Nicely said Marsha!
I don't talk about my hair on other threads either because I don't want to make anyone feel bad they lost theirs. Especially if they found out about caps too late and already started their chemo. If I see someone asking I will post of PM. I have seen some others not from this thread, that have lost their hair, send people over here though! I think that is terrific!0 -
Hi girls, I have the "I saved my hair" tag in my signature line, not to brag or make anyone else feel badly, heaven forbid, but because I want to spread the word. I write to a lot of the "just diagnosed" girls who are terrified and I hope it can help someone realize there are options. In fact many of them have PMd me to ask about the caps, it is the first time they are seeing anything about them.
But I do worry that it makes some people feel badly or like they missed out. I just hope they can tell others who they meet about it.
I had NO idea about the caps when diagnosed. My long hair has always been my "signature" and I was more devastated about losing it than I was about having cancer, the mastectomy, any of it.
A wonderful friend whose sister knew someone who used cold caps told me about it. I had FIVE days before chemo, and got the caps in time to chill them down and practice. Talk about stress.
My doctor, as awesome as she is, had told me at diagnosis, "there is NO WAY you can keep your hair and live".
Wrong.
So anyway, I continue to spread the word as best I can. I just wish docs would be better informed!!!!
Hugs
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Hey ScienceGal,
I have my cold cap stuff in my sig line too and bring it up when I can. People do see it and they ask.
I was super lucky with my onc. He did not bring up the caps, i asked, but he had told me my hair might not look great because you can't wash a lot, etc... but he did say that in his opinion capping is about 100% effective. My center has had a lot of people do PCC and even had a freezer. Several people I saw still brought caps in coolers and dry ice though. I never saw anyone use the freezer. I was the first one there to use a different kind of cap so they paid close attention to see how it was going to work. One of the other hospitals I went to for a second opinion is still hung up on the scalp mets. They didn't even want me to chew ice!!!
We are getting the word out ladies! One day the doctors and nurses will be telling people about this. Until then we just keep spreading the word!
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The shedding finally stopped! My last chemo was 6/20 so it's been a little over 4 months of PFC shedding. I just washed my hair and there was no hair in the sink when I combed it out. Many on here posted that shedding lasted about 4 months PFC so I'm right on schedule. Hang in there PFC shedders, it will stop soon. I promise.
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Awesome jc254!!!!! That is such a great feeling!0 -
That's Terrific Jc! I also enjoyed the heck out of that first shower when I put my head under the full spray of hot water!!!
Happy Hump Day all. If I survive making costumes the weekend is almost here!0 -
Congrats JC. Can't wait to be a 4 month PFC'er. Question for the cold cap vets: did you cut your hair at all during your treatment duration? Mine is fine, its just getting a bit scraggly on the ends. But, do not want to do anything to jeopardize progress.. Thanks for your thoughts0 -
I cut my hair after treatment. I did it a few weeks after chemo and a month or so later. I also shed for about 4 mo's PFC. So glad you finally stopped shedding JC! What a great feeling!!!0 -
I didn't trim during capping because I had cut before I started since I knew it would continue to grow. I do remember a couple of others saying they trimmed bangs and such during, but no real haircuts. I am sure they will chime in! You will be 4 mos PFC in no time!! I actually quit shedding closer to 2 months out! Maybe you will too! Whenever it stops, it does stop!!0 -
I know I can't speak for everyone, and others may take offense or feel hurt because of this even though I don't, but I thought I'd chime in with an opinion from someone who lost their hair. I may be a little different because I tried the caps & they didn't work for me.... but I still follow this thread because I love hearing about the success stories! Does it make me a little jealous? Yes. Of course I would rather be sitting here with my real hair than a wig! But it doesn't make me sad or upset, reading about other women saving their hair. It makes me happy. I want to help spread the word that this option is out there, because not many know about it. Nobody in my circle of family or friends had heard of the caps when I started, and two of my best friends have had cancer. I do think when people learn about the caps that they need to realize it's not 100% guaranteed they will save their hair. A lot of people have success, but a few like me do not. However, I am not sorry I tried, and I would never want to discourage anyone else from trying. :-)0 -
HI Michelle!
I was helping another lady with caps and she was doing AC. She quit capping part way through her third treatment. AC is just tough. But you guys tried! We learn from the success, but we learn from the problems too!
You are absolutely right that we need to keep spreading the word! I just try to be careful and make sure it is an appropriate situation when I bring it up if it is someone already in chemo and without hair. Anybody else, I talk their ears off!
Thank you for your thoughts! How is the Taxol going? You are almost there!0 -
Michelle, I glad you're still following along with us. I feel so badly when the caps don't work for some- it sort of feels personal to me because I know how invested we get emotionally in the cold cap process. There was another woman on here fairly recently who also did not have success with the caps. Her name is something like "txsockmonkey". She was devastated that she lost her hair. I recently ran across a post she did that included a video set to music of her hair as it grew back. Unfortunately I don't remember which forum. Anyway, I was so glad to see her doing well and her hair looks great now too. I hope she doesn't mind that I mentioned her here, but I found her video inspirational. I hope you are feeling well physically and can see an end to treatment in sight.
Bernadette
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Hi Ladies! Been absent for a while and now I have a TON of reading to catch up on. Welcome to all newcomers and support and love to those I've "met" here before.
I'm 3 months PFC. Unlike many, I stopped shedding within a few weeks of my last treatment, but unlike many, I lost about 70% of my hair so it's a good thing it stopped falling out!
Well, the regrowth was finally long enough and I managed to scrape enough money together and I went to the salon yesterday and had my hair coloured and cut!!! My hair was short before I started this journey but the regrowth took a while to get long enough to be able to put foils in. As my stylist began drying my hair and I saw the "old me" emerging I began to cry until I was sobbing. It was huge. She and my mother were really worried at first, but as my stylist put it "you've been holding your breath for so long and now you can exhale again".
I've been going through the post-treatment depression or grief or whatever it is, and am seeing a counselor at the Cancer Agency. I highly recommend it - despite a few little meltdowns, it's really helping.0
