Cold Caps Users Past and Present, to Save Hair
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Thank You All for the feedback--I am doing so well --sometimes I think my good attitude and HAIR!! are too much for the non-believers--It was very nice to have you all , once again restore my confidence!! I am so so proud of my hard work and the ability to have had the choice of keeping my hair--It keeps ME in control a small wee bit!
The one question unanswered--PFC how long do we use the caps out of the freezer---??
You are wonderful!
Sharon
Thank You All Again for Helping me over the speed bump of Debbie Downers--0 -
Sharon~.I wanted to use the caps after my last Tx...but could only stand it for the first 3 weeks then I shipped them all back. I remember reading many women who had great success didn't do this at all...so not sure how critical it is..may stimulate new growth more than keeping it from falling out after the initial infusion??
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Once again, I sign on to listen to all of you and find such encouragement. I have my second TC treatment this Thursday so am ramping up to do it again.
My husband is an incredible helper. He worked so hard last time kneading each cap to get it to just the right temperature. Two other friends come to help, too. And my parents just want to be there. Mom takes care of the frozen peas on my fingers and toes and ice in my mouth. Dad gets the dry ice and helps with errands. It's a loving team and I feel so blessed to have them with me.
When people comment on the pro-active ways I'm fighting the SEs, I wish you could hear my praise of you all. I've learned so much from this discussion board and agree that we're a group of intelligent, sharp, educated women who plan to get on with living life to the fullest and we don't want to look sick during or after these treatments.
I live in Dallas and am he first at a major medical center to do PCC. I don't think anyone really thinks it will work but they were willing to let me try. Today is Day 16. Very minimal shedding so far. I know the next few days will tell a lot. Nervous...but trusting.0 -
Hang in there Howard----I am doing tx #5 on Thursday--I have 75% of my hair!! Follow all instructions--the hair will be yours!! Lot of hard work--devoted helpers!! We are blessed to have such support! Cudos to my Beloved Fiancee Jeff for the long hours he has put in to give me my hair this far into tx--Love this Man!!
Thanks Again for the support!
Sharon
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Are the majority here using the Penquin caps?
Thanks, Arlene
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lmflynn and sashaz3: I used caps before Frank began recommending using them between chemos and after chemo out of the freezer. I have a ridiculously full head of hair nonetheless (and it began growing during chemo). Cold stimulates hair growth, so anything additional is great, but it's not necessary for retaining your existing hair. Use what works for you, but make sure you follow the rest of the protocol (mild shampoo, only tepid water, infrequent washing, wide-tooth-comb, etc.) until post-chemo shedding stops. Yes, that last bit takes longer than you might imagine, but it is *worth it* after all you've gone through. Trust me, it bounces back more than you'll expect!
Arlene: I believe the vast majority are using the Penguin Cold Caps, a couple of folks have used the Elasto-gel Caps. If you are using PCCs, please PM me with your email address and I'll send you my write-up on my method (dry ice) and tips so that you don't have to re-invent the wheel. If you can, try to re-read through some of these old posts. There is invaluable information from what used to be dozens, and now is becoming a couple hundred, US users of PCCs.
Howard: Welcome to the club! What you are doing by using cold caps -- and taking control over your chemo, your cancer, and your SEs, will become more and more apparent as you continue through the process. I also did TC and was the first at my cancer center, and met with everything from outright negativism to barely-masked disbelief, but by the time I came in for my second -- then third, then fourth -- chemo, with my hair, it was clear a new era had begun at that cancer center. It is very empowering! We're all here to support you!
I was working out today and the shower wasn't working well -- no hot water -- so I had to have a cold shower and man did I have flashbacks!!! For most of last year I braced myself before and after my swim and workouts, cold showers! I was chuckling out loud at the memory, but if anybody'd asked what was so funny, I don't think they'd have believed me :-)
Here's a question for the folks who are significantly past chemo (Drim, Ang7, others): Sometimes I'll be going about my day, and I feel like it finally hits me that I went through chemo and have battled cancer. I feel like my PCC effort focussed my energy (in an entirely positive way!) on this aspect of my battle, and sometimes I have a delayed reaction to what I've stared down. Anybody else having these feelings? It mostly hits me around the time of my 3-month checkups, naturally, but sometimes just because. Just wondering...
Best,
Susan
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ArleneA~. Almost all of us on this thread used the Penguin Cold Caps. Why the nickname Penguinistas...that I think Susan coined... The feedback and support were awesome for me...I read every post from the beginning as I was told the caps didn't work by my doctors and wanted as many success stories as I could read....but there are two other types of caps. There have been two women that used the Elastogel caps...that I think are the Advanced Cold Caps...that posted on this thread. There is also the Dignicaps that are in trials in two places...UCSF and another facility.
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Hey sebm9 Susan~
I am totally having the same thing. Some days I feel like I am going through post traumatic stress disorder. Certain things can set me off. I think you are right about the Cold Caps taking your mind off things for a bit. At least with 4 kids, 3 dogs, a cat and a hubby swirling around I do not have much time to dwell on things. My worst times are at night when I should be sleeping.
Hugs to you...
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Just a note to follow up on what Susan observed.
I am a year out from finishing treatment and 18 months from diagnosis (ovca stage 2). All clear, thank god. The caps were essential to my normalcy but moreover, represented the first in a host of things that concerned fighting Side Effects into virtual nothingness. I refused to buy into the culture of victimhood that seems to be typical more often than not, and is regarded as some kind of badge of honor.
Anyhow..despite working at a high (ok, frenzied!) level throughout and after treatment, feeling strong and facing down this thing, i also am sometimes struck by a sense of, not sure what to call it.. weird disconnect, event PTSS.. "what's the point"-ness. It passes but is a bit haunting.
I will bet others have had this experience despite that the disease, and its odious treatments, do fade in that rearview mirror.
2 things:
1. Anyone new starting, i also have some good tips sheets about remedies for a host of side effects and also for caps-use and hair care during. Happy to send.. PM me your normal email email address.
2. Folks who haven't already completed the Patient Education Survey, hope you will. the link is here, and much appreciated:
http://www.surveymonkey.com/s/PatientEducationMaterial
Thank you!
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Hope this encourages you all as much as it did me. At church this morning our whole congregation read the Heidelberg Catechism, Question 1 together out loud as part of our confession of faith. This is the phrase that stood out today "...that He protects me so well that without the will of my Father in heaven not a hair can fall from my head..."
Brought tears to my eyes especially since I'm at Day 17 and about to find out how well the PCC will work.
Learning a lot from you all!0 -
Good, positive comments. Since I have about a 90 minute drive to the chemo center, don't think they will work for me but still researching AND at present can't find dry ice.
Thanks everyone!
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ArleneA: The caps are not for everyone, but worth it if the hair loss thing is scaring you the most about chemo (it was for me!) I live in a small country town, and found dry ice in a local welding supply (Airgas). Cheaper than most, also. Good luck whatever you decide!
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Hi Everyone - I have been at a basketball tournament all weekend (in a Holiday Inn for three days) with my 5th grade daughter. I came back read all the posts and can relate to all. I spent the entire weekend telling people how good I feel. I look normal. I have hair. Yet, I have these moments where I feel completely disassociated with my BC, like I am pretending all is normal. And it is not. But, yet, this may be the new normal for women with BC or other types of C. I feel like I am going to get walloped with PTSS as well. At least I am going to talk to someone tomorrow about it...
For now, I am 7 days out from TCH #3 of 6. Lots of shedding, but I am managing fine.
Love to all the penguinistas. I am off to watch the Oscars. I told my DH that this is like "my superbowl." Just a little white lie...but I am tired!
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Hi everyone, I am new to this site but have been reading through all the posts. I start my chemo AC x 4 followed by Taxol x 12 on March 9th. I am using the Advanced Caps but was wondering about the brow bands, what are they and do they work? If any one has had this regimen would love to hear form you.
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Hi Arlene~. The choice is yours and may not work for you...but wanted to give you some ideas if you do decide to use Penguin Cold Caps or another type...for dry ice...Most grocery stores carry and sell dry ice...you have to ask...and every ice cream parlor usually has it..and if you are in a smaller town..sure they would give you 50-70 pounds of it....also if there is even a small hospital close by they probably have a contact or any restaurant that buys fresh food, butcher chop, fish market.
As for the 90 minutes...you can change the caps in the car if you are worried about that...I did it and really pretty easy ... Just pulled over changed the cap and off we went....the dry ice last for days really so you should be ok....
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Hi Leeann - you are in the right place for advice on cold caps. There is a wealth of knowledge and insight going back years. I am halfway done with TCH. I am using the Cold Caps and using the eyebrow strips as well. The eyebrow strips were provided by the PCC people. I also was instructed to contact Frank (inventor) and Carl (his son) on the website if I needed anything else. It is a bit awkward getting everything lined up, but it does all come together. The eyebrow strip is a gel strip that is about 1.5 inches by 24 inches. I have six in the freexer at the oncology office. I simply put it on my brow after the rest of the cap is fitted. THIS IS COLD. But, alas, you get used to it.
Keep emailing questions...Annie
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Thanks Ladies for you great comments. I'll be calling Penquin soon to see how it will work for me.
Arlene
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Recently there has been a lot of chat about promoting the notion that you can keep your hair during chemotherapy. One idea might be to have people wear a sign or sandwich board or carry a sign or shirt with information on it at the breast cancer walks you hear about on TV. Instead of a pink ribbon you could just have an arrow pointing at your head full of hair.
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Great idea Julia! I think I'll use it. Thanks
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Julia - LOVE the idea. Do you think I can wear a sandwich board into my oncology clinic? It would get attention...or, on a more serious note, put a poster in the office?
Annie
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ArleneA: Where are you located? Your hospital must have a source of dry ice, so perhaps you can inquire with them? Their lab or their biomed people might know. (Let me know if you need help. I work at a hospital and will be happy to see if I can find something in your area.) Fwiw, I did cap changes on the way home from my treatment. We just pulled the car over, did the change in about 2 minutes, and drove on. Must have been funny looking but who cares?!? My tolerance for "funny looking" has changed wildly since being diagnosed...
Let me know if you need a hand!! We're here for you. And if you decide not to do it, for whatever reason, THAT IS OKAY!! What is important is that this is now a choice, for those who know. Choosing whether or not to do it means owning your experience, and that is everything, at this stage and throughout.
Ang7 and mtri11: Thank you for your reply! I had an inkling I wasn't alone in this. And for me it's not exactly PTSS, but my experience has been so positive -- even through tamoxifen -- that I've few people to relate to in the usual circles. I'm just starting to realize how profoundly different us penguinistas have it! It's not just the hair, it's the relative lack of other SEs, the positive attitude, the feeling of victory -- in keeping our hair, in conquering our chemo, in conquering our chemo.
I absolutely refuse to adopt the "cancer survivor" attitude, if you know what I mean: I am a cancer conqueror.
Susan
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HI Susan - I agree with the positivity that we feel. What is difficult is those moments when I feel that I am not so positive...and feel a little scared. Overall the cold caps have been an incredibly empowering place to come from. I am so thankful. But, I have those moments!
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Hi all,
Just finished watching the Oscars and doing my cold caps for the last 2 hours. I have to tell you all that these EAR POPS are fabulous! They stay on with no holding them in place, they don't move and keep your ears warm. They are worth every penny of the $9 I paid for them. Also no moleskin, just a pantyliner with ends cut off stuck on forehead, warmer than moleskin and easier. Also, no chamois cloth, I use this elastic like gauze that sticks to itself that I get at the infusion center-for free!!. I wrap it around my neck and chin and stick it to itself and it keeps both things warm and doesn't move, It too is easier.I will call them and ask for the name of the stuff. I'm sure you can get it at your infusion center as well.
I completely get what some of you are saying. I feel a bit disconnected from the whole BC thing. I think it is because we are not thinking of ourselves as victims, but as "conquerers"! We don't look in the mirror and see a bald victim, but a normal looking person with hair. Today I kept seeing posters in the windows of local stores that said," Lets Stamp Out Kid's Cancer." The poster child was, of course, bald. The silent model of cancer is a BALD person. I found this offensive, not the usual response! Now, because I know there is a choice, an alternative to baldness, I feel the poster should be us-with our hair, or kids with theirs! Maybe we can do a poster. My sister in law and one of my helpers (along with my husband), is a graphic artist and has her own firm. I think I will ask her to make us a poster and maybe we can get the 3 cap companies to pay for it( it will be advertising for them as well) and we, ourselves, can put it in the wundows of any merchant who will take it, all accross the country. What do you think???
By the way, if any of you have turned doubting Toms into believers, tell the people at your centers or hospitals to contact the Rapunzel Project to get a free freezer.
Keep Positive!
Nancy
P.S. Drim, when will that news story be on TV?
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Arlene - for the quickest way to get caps call Sandy 1800 322-1547 - Advance cold caps. They send them in a cooler with ice that lasts 5 days if unopened until the day you need them. No international paper work or exchange rates and fees. These elasto gels are so much easier to get off and on that my daughter can do it herself. We ahd the travel problem due to getting out in Atlanta rush hour - actually 4 hours of horrible traffic even without an accident. With penguins we had to stay at the center 4 hours after because you just don't pop on and off the expressway here. With elastos my husband just reached over to the front seat and changed the cap.
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I agree that we need to find more ways to promote the cold caps as a choice. It would be so nice to know that it is being presented to every patient as a choice instead of overlooked or barely mentioned. For me, it helped me make the decision to have chemo and get through it with my hair so my 4 year old wouldn't freak out. It makes me feel like going through chemo I can still have some dignity and not broadcast to the world "I have cancer" everywhere I go. I start the caps on Wednesday. I am nervous but optimistic because of all of you wonderful ladies.
It's funny to me the whole lack of support from docs on cold caps, but not a surprise. I have spent the last 12 years working in the pharmaceutical and medical device field as a sales representative. I call on surgeons for a living and sell surgical products into the OR. I know how hard it is to get them to believe in something new...I have launched several new products over the years and it's a process. I hope at some point I can use my expertise in the industry to help get the word out about the cold caps. I know how their minds work and I know how the companies I have worked for have marketed new products. It can be done. I think there is such an amazing opportunity here, first for patients and second for the companies that make the cold caps. I also believe if presented in the right way there is something in it for the doctors too. If they can present these options to patients with compassion, why would the patient choose to go elsewhere and be treated by another doc? We are truly pioneers.....what an incredible thing you have all done over the past few years to pave the way for more future penguinistas!!!
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mdg ... You are so right, Cold Caps are going to be the rare exception that is patient driven, then accepted by the medical community. The reason Cold Cap has not been used is the fear of extended treatment times, use of clinic resources and personnel all without financial compensation. A Doctor's office is a small business and always aware of the bottom line. So when it is supported by users and starts to affect the decision of what doctor and clinic to use we will see the medical community promoting cold cap 24/7.
We salute all of the Pengunistas, Gel Commandos, and Machine Heads(Digni,Paxman), you have shown the courage and dedication to bring the world a great healing tool, in your time of great trial and tribulation you reached out to help all who will come after you, there is no greater courage or sacrifice than what you have done. Congratulations to all of the Cold Cap Pioneers!
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Love all the names....Gel Commandos that's cute! The most important thing is that cancer patients everywhere have the choice or option. We are all doing our little part....
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Thanks Motherofpatient: I'm in contact with Sandy. I attended the Feel Good class today and there was actually a woman there who wanted to lose her hair to see what it would look like when it came back. Very positive group of ladies.
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A - if you get the caps, I recommend using a shorter exchange cycle as we found the caps were up to +38F when removed. We tested each cap as we remove it - top and sides. There was a lot of variation from +17 on up to the +38F. We went with 15 min for 3 caps before chemo and 20 min for each cap after. If they have been on dry ice for a few days for shipping, you need to start checking 15-20 min before needed because they will be at -70F - ours were. We had to get them on Fri for a Monday chemo. Good luck.
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LEILA- I have 1 more cold cap treatment, so if you are interested in my caps, you need to speak with Frank about doing the paperwork so I can send them to you, otherwise, if anyone else is interested in the penquin caps, I have 8 of them and they will be available this Friday. Please contact me asap though, cause I will be sending them back by next week, so there won't be additional charges.
Jill
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