Cold Caps Users Past and Present, to Save Hair
Comments
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her2intn- Jill
You don't have to worry about paying more for the caps if they are not sent back right away. The clock stops when you tell Penguin you are done with them. If they want you to pass them off to someone and it takes some time, it won't cost you any more and it may save the shipping costs. Just ask, I did and saved about $100 shipping.
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Just had to comment on Nancy's last post, and also say reading posts here is about the best thing.. i find myself cheering from the chair. Really, a great deal of this should be excerpted for a booklet, and i may go about culling some of the comments and ask some of you permission to do this. Why? Dunno, exactly as i am not a caps "rep", but some of the writing here is so entirely eloquent that it oughtta be codified.
OK.. back to the comment! The remark about seeing the bald headed person as the media relations poster for all things cancer is something i have been stewing about for some time.
To wit: I fly frequently into the airport at Columbus Ohio. The Oncology center at Ohio State Univ, seems to have purchased the advertising space at this airport. In the escalator "stair" well.. a mammoth wall hanging leers over the entire baggage and ticketing area, advertising how great their cancer center is. Guess who the poster child is? Yes, a gigantic picture of a bald woman's head, staring out resolutely, oh so proud. WHY IS THIS?? would they regard giant images of shrivelled genitalia, or other disfigured body parts, as a similar representation? But .. bald kids and bald ladies seem to be the skincrawling image of AWARENESS. This is the embodiment of what we are up against.. that oncology patients are supposed to go the noble victim route. What we are doing goes well beyond hair, and is about normalcy and not succumbing needlessly to other side effects that CAN BE VANQUISHED with good, clear information.. this is the future of what the AWARENESS movements should be... about CHOICE and options not only for treatments, but for managing treatments' effects.
Sorry for the rant, gals.. maybe it is the PTSS, but oh, the anger doesn't roll off. Every time i am in that airport i want to vandalize that wallhanging. Have composed a scathing letter to OSU management.. for starters.
All the pink license plates and ribbons and marches aren't buying this thing we have discovered as so precious: Having a choice.
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Mtrii...I know what you mean. Today I went to buy a stainless water bottle and the only thing they had in the entire sporting goods store was covered in pink ribbons for BC. Blech! I am glad these things support the cause and will hopefully help find a cure one day, but I refuse to cover myself in pink! The only pink things I own are a deep magenta color and I told my husband right away..."don't buy me anything light pink, ever!". I didn't wear pink before BC and I am not going to start now". LOL!
I actually have thought about looking into a billboard on I-75 here in Detroit. I wonder how much they cost...?? I wanted to put a great photo of me a day after chemo with my long hair and say "this is what cancer can look like" on it! I am not a rep for the cold caps either, but I have been a sales rep in the pharmaceutical and medical device industry for years and call on doctors for a living. No one is giving these patients a choice.....it should be presented along with the stupid detailed list of every wig store in the entire Detroit metro area that is immediately handed to every patient as soon as chemo is mentioned. I am passionate about this because it DOES matter to patients!!!!
Enough said...putting my soapbox away for the night. I start my first chemo with cold caps at 8am tomorrow! Yikes....is that the steroids talking??? Going to take my xanax right now......saving the ativan for the morning.
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Mtri - I LOVE YOUR PASSION!!!!!!!!!!!!!!!!!!!!!!!!! I just came in from another thread with women starting chemo in March and one asked "what's a cold cap." Good god, when will the onco talk about this to everyone? Let women had the choice........
Keeping this short...cuz I think i have a touch of the flu or maybe it is just chemo.
Love to all you passion filled penguinistas/chilllistas/elastogelmamas.....
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mtri111, you are so right, I am a caps rep., the hardest thing I have to do is be polite when medical professionals spout that party line dribble about secondary metastasis. When they tell me these pitiful excuses, I know they know nothing about the effectiveness of cold cap, the history of the development, or that the rest of the world is light years ahead of our medical system. Statements like "it will grow back, it is temporary", make the hair on my neck stand up. I pray for the day that a doctor is actually honest and says " We don't use cold caps because I am afraid that the crowd of care givers will disrupt my office, tie up my staff and extend the time needed to complete the infusion, all without a cent of compensation for my trouble." One honest doctor would be great, just one. One day soon when get the secondary metastasis defense I may not be able to control myself, I know my mission is above my feelings so I bite my lip, but I want to ask them to review the side effects of any drug used in chemotherapy with me! It is like comparing the Empire State Building with a log cabin!
I know this will sound odd but many who have had chemo without the benefit of cold cap actually pressure others who know it is available not to use it!!!! I have heard it for myself, seen it elsewhere on this site, "wear it as a badge of courage". Bull#@$%This attitude is unacceptable, if we do not have consensus within the group about hypothermic treatments how will we forward the message? I know how I plan to do it, one person at a time. My goal is to inform 10 people a day that there is a way to prevent CIA ( chemo induced alopecia) Ten people tell ten more people, now there are110 who now know there is a choice. If anyone they know is faced with chemo you can bet one of those 110 will tell them about cold caps. I know cold cap will become the latest greatest discovery by the medical community someday, as long as it is their idea. I pray for the day that the before and after pictures are the same.
If anyone uses what I call the "boggy man defense"secondary metastasis (can't say it doesn't work so we scare them away from the idea) here is the latest publication about CIA and hypothermic hair loss prevention, written by Doctors for Doctors. http://www.medscape.com/viewarticle/737144 it was published this year.
Keep the faith, tell anyone who will listen Now you have a choice!
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Hi everyone.....a few things to share...
#1.... mdg GOOD LUCK, YOU CAN DO IT! You have dozens of people behind you...when you may think negative thoughts of any kind know we are all behind you! Let us know when you feel up to it how your first day as a Penguin felt!
#2.... Mike..apologetically ...I was a little protective (ok.. I admit offended) when you joined our group...but I was wrong. You seem to "get" it. It's not about which choice...it is about THE choice...the empowerment of making ONE choice in this journey called cancer. And one ..that is not snake oil..but proven and used around the world...shame shame on our medical community....YOU GO, and I wish you the most success and impact my positive energy can muster toward you.
Moving close to 7 weeks PFC...the shedding has slowed a lot (except for the eyelashes and brows ..which continue to thin) my hair is looking and feeling more "normal" every day....I went back to work Monday... And I can say absolutely no one can tell what I've been through ...I actually had someone say to me ...I'd love to take a medical leave...huh??! Ok...you go have your breast cut off and infuse poison in your veins...then I'll think you're serious......but on a positive note... I must look pretty decent. :-)!!0 -
Hi all,
Well, I took my teen to her chiropractor today and we started talking about cancer, the environment etc. I mentioned that I had been on Taxotere, how some women NEVER get their hair back after this treatment and how I was the first in my oncologists office to use the Penguin Cold Caps. The chiro asked me all about it and when I finished she said "Why the hell isn't every patient given that opportunity?" Good question.
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Hi all: Had my surgery today and that part was easy but the sentinel node procedure was horrible and then the placement of the wire so the surgeon knows what to cut was no walk in the park either. This hospital does it with you awake and no numbing for the sentinel test but it is done so now waiting for those results.
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Hi all:
Iam very serious about the poster. I think it should say this is the new face of cancer... and show a pictue of before and during and after chemo treeatment. All pictures will be of a person with hair in all of them. Then an explanation of the choice that is available to all to keep their hair, and then llst all the companies that make caps and show the different types being used by us, and say these are real cancer conquerers, right now,saving their hair, their dignity and saving their lives.!!!
Mike: What do you think? If we can get all of the companies to underwrite the cost of the poster, and we get them and all of us present and past users to distribute them to put in the windows of stores, businesses, gyms, churches, synagogues, treatment centers, Dr.'s, Dentist's and Chiropractor's and Therapist's (psychological and physical and any other types) offices, and so on and on. Any where they will put it up is good!!!
Ladies: What do you think? Send me any ideas for the poster. My sister in law is an award winning Graphic Artist with a great track record and her own firm and a Breast Cancer Survivor as well. I am sure she will do this for us.
I love everyone's enthusiasm and their "True Grit" at the current cancer poster figures and the lack of info about our choice and the stamina and forebearance you all exude. We are a group to be tangled with, so let's tangle!!!
Keep Positive!!!
Nancy
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I have TC chemo #2 tomorrow. Have lost almost no hair so far. I would be so upset with my oncologist if I was just now learning about PCC and she had not told me about them.
As word gets out about this way to save your hair and patients in the middle of chemo start getting upset with their doctors for not telling them there was a way to save their hair, then perhaps the medical field will be more informative. I'm telling everyone who will listen and then following up by sending links to PCC website, the Washington Post article and video, and the Good Morning America segment.
I love the enthusiasm and bit of feistiness of those of us who are thankful we had this opportunity to save our hair and so want this for others.0 -
Howard, there are so many oncs and BSs who have never heard of the caps or who only know about the failed uses in the 80's or whenever it was. We do need to get it out better but I don't know how. Maybe some of the national celebs who had BC would help - even if they didn't get to use it, like Melissa Etheridge who lost allof her long hair.
Did any of you who tried to contact Dr. Oz get a response?
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Hi all. I am on my first chemo with my fifth cap on my head. Its not bad really. The first few minutes are harder but it goes away and then i panic its not cold enough or something. We will see in 21 days......let the waiting begin. I have 9 more caps to do. so far not as bad as i imagined. Keep you all posted later today.
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GOOD LUCK MARIA!!!! Hang in there...you will have a great outcome!
Annie
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I too hate pink ribbon stuff. I was going through chemo last October and you couldn't get away from it. There were tons of items in the supermarket, donations at the cash register, even football players in pink shoes or pink ribbons on their uniforms. I've come out of this mostly intact and I refuse to be a victim. I finished radiation yesterday and will hold my hair covered head high as I step out of the cancer world and not look back. I'm happy to support my sisters in raising awareness on cold therapy, but I don't have to tell strangers that I am some kind of hero for going through breast cancer. I want to live and I will do what my doctors tell me, but I will also be proactive for my own health and eat better (David Servan-Schreiber YouTube & book) and take charge of my life.
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Maria - you go girl! Isn't technology wonderful, we can get a play-by-play.
Baldness on posters - when used as a fund-raising tool a bald woman/child is going to be far more effective. I believe that it will be up to the cold cap providers to fund alternative posters/billboards. That is, they will need to advertise. In light of how much publicity cooling caps have received in the past year, I am really quite impressed with how well the word is getting out.
"You're Not Bald Backlash" - I have also heard such comments, though very few to me personally. I do think this is a bigger problem for women using the caps in chemo centers that do not have private rooms/beds/area with curtains.
Pink - Unlike some of you, up until having BC, I loved pink. I look GREAT in pink, yes that breast-cancer-ribbon pink. I have a soft, warm, pink fleece jacket with an embroidered black cocker spaniel going over an agility jump (a dog show event). But I cringe every time I look at it thinking, gee, everyone is going to think I got the jacket because I had BC. Ditto with my pink cooler with a black agility cocker -- don't want to take that to agility trials anymore. Ditto with my pink "We are the Cure - CANINE cancer fundraiser" sweatshirt. It is springtime (here in CA) and I should be wearing all of my pink stuff, and it just makes me sad. Oh, well maybe next spring.
Colleen
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Keeppositive I will support anything that makes hypothermic CIA (chemo induced alopecia) prevention common knowledge, you have a great idea and a method to make it happen. I have started a "drop card campaign" We had thousands of business card size cards printed that promote the idea that now there is a choice. We leave them in lobby's, restaurants, bathrooms, store checkouts, sports events, anywhere that someone may see them. We hand them to anyone that will listen.
Today was a mile stone day, A cancer clinic that Tammy one of our clients is being treated at called this morning wanting information about cold cap and said that they are starting to get request for them. O glorious day! When I first approched them to place information about cold cap in the lobby it was a firm, no, someone could ask questions! They are building a new bigger center that will treat thousands, and may now be cold cap friendly.
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Hi All:
I usually try to tell everyone abvout cold caps and the choice they provide. Today, I went a step further. I was on an elevator in a building, when a woman got on who had a hat on, but obviously was bald under the hat. She got off on the same floor I did, so I decided to see where was she going. The door to her place was wide open to a doctor's waiting room... it said on the door, Hemotology Oncology. I walked in and asked to speak with the receptionist/nurse. I told her all about cold caps and told her I was a BC oncology patient myself and was currently going thru chemo. I showed her my full head of hair and said , How do I look? She said you look great! I told her to go on line and look up all the cold cap sites as well as our site. She asked me for something to hang up in the office. I can't wait to get started on a poster!!!
I have another great idea of how to get this awareness up---Let's get the Dr.s (Oncologists) to get free freezers and to buy caps outright from the various companies and then rent them( more reassonably than Penquin does) and we will solve the problem of resistance--if they can make money doing this, I am sure they will love it!!! The only thing is, do the caps have to be FDA approved for Dr.s to charge for them? It can be a service they can charge for, that isn't covered by insurance. I am going to try to find out by asking my doctor.
Well ladies, I am waiting for feedback. Keep Positive!
Nancy
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Ok ladies I am officially 25% done with chemo after my first session today with my cold caps. Like I posted earlier today from the chemo chair, it was not that bad at all! The worst part for me was the taxotere as during that time I also iced fingers, toes and had ice in my mouth while wearing the caps. For that 1 1/2 hours I was shivering quite a bit. My feet are what bothered me most at that point. Once I was done with taxotere and only had caps on head, it was a breeze. I actually video taped my husband putting my very first cap on and my reactions. We taped for about 9 minutes until I was hooked up to pre-meds. If anyone is curious because they are considering cold caps, I would be happy to share the video. It's on my droid phone....I don't know how good the quality is, but if it helps someone make a decision, let me know. Now the waiting begins.....yes, there is always more waiting when it comes to BC hu? If anyone is not sure they can do this, I say YES YOU CAN!
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Maria, I knew you could do it!! Hooray for you.
Nancy
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mdg: I know how you feel, wondering if the caps are warm enough! Amazing how your head can adjust to temps... I too felt that the cap might not be warm enough, so insisted my husband check it each time it came off my head. Even when it felt "warm" and (to me at the time) nearly normal temp-wise, it was still registering -30C. I was amazed! That's also when I came to really, really respect the quality of the materials of the PCC. It really does keep your head at an amazingly constant cold temp, even though the head is as warm as it is.
Get rest, HYDRATE, and get a walk in if you can to keep oxygenating your blood. Later on in your chemos as they progress, you will be very glad to keep active now and fend off the longer-term fatigue.
We're cheering for you!
Susan
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Sadly FDA does not recognize cold cap, not only can a doctor not charge, they can not be compensated in any way if they promote the use of cold cap. One exception, they can accept food, so I always show up with a cake, pie or candy.
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To Mike and all the Women on this site now and in the past 2 years:
What is your response to the idea of a poster being made to inform the public and Drs, about COLD CAP THERAPY. To let everyone know there is a CHOICE as to whether or not they want to keep their hair. To let them know it is up to them. To tell them and show them with pictures, that it works. To defunk the scalp mets story with reference to the studies done and to direct them to the companies involved in producing and distributing cold caps. To show the world a new face for Cancer patients-one's with hair-healthy looking people in charge of their recovery!
I want to know that if I get this poster produced, that you are willing to take them(free of charge, of course) and give them out to any and everyone who will publicly display them.
To Mike: Do you think Advance will be willing to share the cost of producing these tools for awareness and advertising for all the companies involved. I am sure my sister-in law will do this with no charge for her services, only the actual costs involved.
Please, Everyone respond. You can send me a private or a public e-mail. I want to know how comitted you will be to helping make this public knowledge. You only have to give them out where you normally go to shop or for the usual services you receive. You don't have to go out of your way, just ask people you know and deal with to put a poster up.
Keep Poitive and let me know your response.
Nancy
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Hi everyone:
Since our first contact is our breast surgeon, we need to get the word out to the surgeons about the caps too. My surgeon is from the UK so she was very familiar with them; however, when I asked her about them, she was positive from her perspective but said I'd probably meet resistance with the oncologist.
Just another thought!
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keep postive - I like your idea of getting the word out and of getting freezers in the doctors' offices. I think the Rapunzel Project is trying to do that - freezers, I mean. As for the PCC caps, does Frank have a patent on them and would he sell them? I want to see caps available to everyone even if they can't afford to pay - just a part of normal chemo care at the centers and I think we women can approach women's groups, clubs, etc and get them to take it on as a project. I have heard that the freezers cost several thousand dollars - we found one at an outlet store for around $2000. Keep the idea bumped.
Although the elasto gels aren't as cold, they are colder than the temps used in the Dignicap studies. I cut the time of use per cap to 15 min pre and 20 during the rest of chemo and 4 hours after and made straps to tighten them. Seems to work. I know Tori used them successfully.
Well, keep up your good work.
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I'm so glad that someone else said what I've been thinking all these months. I'm so tired of the bald look being the face of cancer. People think I'm not sick when they see I have my hair. I'm glad for that in many ways, but the downside is that work thinks, oh she must be ok. Crazy! I don't wear pink ribbons either. I bought an F Cancer shirt that I wear proudly, it really sums it up. Here's the site to get one:
I think I'll buy more and wear one every day! lol
Welcome to the new people. It can be done. I'm 11 weeks out of my last chemo and my hair is starting to calm down on shedding. I got it cut last week and am ticking down the time until I can color. Funny though, this changes how you feel about your hair. I appreciate it more and treasure it. I may not color it until I really need to. I've been living with the dark roots growing in for months, so why not let it grow all the way out.
We do need to get the word out better than they are doing. I've said this from day one. I work in Advertising and think they have not done a great job in the promotions area. Maybe we band together and figure it out! I want all women to know about this and have a choice.
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Arlene - in my daughter's case the BS was very interested, but the onc wasn't too positive- He is older and saw the failed attempts in the 80's or whenever, but after 3 chemos he is coming around. His PA is waiting for the 4th or 5th chemo to really get on board, but was impressed so far.
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Would be more than happy to distribute any literature, patient information packets, etc to my BS, Oncologist and PS. Great idea!
Maria~ how's it going? Hoping for no to little SEs for you!
7 weeks PFC today...met with my boss for the first time..(just started back to work Monday) I think he thought I had a wig on b/c shorter and darker...told him all about the caps....excited to be a hair wash day..and feeling better every day. Was tempted to warm up the water today and use my old shampoo (which is sulfate- free) but kept the willpower strong! Another month ...hopefully..still shed off and on...had to shave again...so know hair is growing back...0 -
Girls, you are so awesome. Privileged to read and participate in these discussions.
A few things.. Maria.. reading your posts today with caps adventure in progress, I wondered whether you had wrapped up in the electric blanket. This is KEY. It provides the counterpoint to the cold and will keep you comfy the whole darm time.
I wish we had the wherewithall to provide a free elec blanket to every cold cap user starting out.. betcha Walmart could be convinced to donate!
OK! I am on board being a street warrior for information about coldcaps or scalpcooling; but my mission goes further.. providing clear, tabulated easy -to- follow information about each and every side effect of chemo, and along with suggested remedies for each one. For any who wish a copy.. please PM me and send your email for my Tips Table "Stay Well During Chemo". My post CA mission has been about providing clear and usable information to oncology patients that can help vanquish not only hair loss but a host of other side effects too. My experience (and many others') was that the information provided was a hodge podge, and "remedies" were never clearly stated except in vague suggestions, the most frequent being "call your doctor or go to the ER".
Anyway, back to hair..I am positive that coldcaps saved my life.. (chemo and earlyish diagnosis notwithstanding). Many of you are expressing the same sentiments, really. The notion that there are insults or even NONSENSE about wearing the badge of bald pride or whatever .. is unacceptable. To each his own, fine.. but Information and Choice must be the mantra. These mantras have seeped into nearly every activity and institution, except this particular little arena we have discovered. Interesting, isn't it?
When i have to go for periodoic CA125 blood tests, I bring brochures about the caps and just drop bunches in the waiting rooms and the center here in Providence. Nonetheless, am pretty sure that not a single person other than myself and one other have ever used the caps here, in a an area that prides itself on progressive medicine and even provides lots of integrative care (acu, etc) at the unit.
Press: I suggested Oprah, having managed to get on that show in 2008; but this is a bad year as she is changing her career and emphasis vis a vis her OWN initiative.
Targets for coverage: MORE magazine and NYTImes Science Times.. the thrust would have to be about how this is about more than hair, but dignity and wholeness. "When less is not more". something like that... :-)
I would do it, but am cautioned due to my music career, quite honestly, in that I am not yet as famous and thus career -resilient as M Etheridge. However, am preparing a position paper for some major medical journals...
Hey, I hate "ribbon" movements, but we oughtta be the HAIR Ribbon movement. Ha!
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Lmflynn: I felt great today! I got up at 6:30am, got my little one off to school, hit the gym for 40 min on the elliptical and tons of rehab stretches. I had such a full day....went shopping for new healthy make up, got the dreaded neulasta shot, did physical therapy for 30 minutes (she pushed me too!) and then I treated myself to this:
http://www.jared.com/webapp/wcs/stores/servlet/product1|10451|10001|-1|801613100|1|1.19793
I decided to get a different ring for each chemo session to stack on one finger. What do you think ladies??? I love my new ring and am wearing it now.
After all that I picked up my son from school and came home and made dinner. I drank a lot of water and felt great today. I can only hope that the coming days are just as good......crossing fingers!!!
I can't wait to wash my hair. I washed it last on Sunday. I have not even rinsed it yet until today since I had blown it out straight on Sunday. I wet it today and scrunched it up..it added a lot of fullness and body as I have wavy hair anyway. I think tomorrow will be a hat day though. I can do this 3 more times....it's not that bad at all! I hope I still have hair to do this three more times! Cross your fingers ladies!
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Me too - happy to get the word out! I keep telling everyone I encounter. Have to say that there are two newly diagnosed women with 4 AC followed by 12 T. Both women said it is not worth it to do the cold caps...Anyone else have these conversations?
Maria - congratulations on being done with your first chemo. Sounds like it went really well! Drink your water...
Lmflynn - how was work? Did you keep your boss informed of everything as you went along or just when you got back? Did you cut or color yet?
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