Cold Caps Users Past and Present, to Save Hair
Comments
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It seems to me how much hair you lose often depends on the kind of chemo you have...
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Susan, can you send me your write up also? I am interested in using the caps but am overwhelmed by the process. Thank you.
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I've just found out that one of the potential long-term SEs of my new arimidex is...hair loss, for some women. grrrr. Not shedding or falling out, but just not re-growing, in some women (male pattern baldness at the top of the head). One woman said it is like one in five of her hairs grows.
So, I'm going to monitor the situation. I'll take milk thistle which I took during chemo, to support liver function which was very tied to the success of the penguin cold caps. If I feel it's starting to get thin, I have a PCC demo cap in the garage and I'll pop it in the freezer and wear it an hour every night to stimulate hair growth. And, as a very final resort I'll switch my meds. (But so far, no SEs whatsoever.)
Does this roller coaster never end?
Laura, congratulations to you and all the other women in the midst of chemo. You really are keeping your hair. One new thing, since I used caps 2 years ago, is about 3 weeks PFC when your hair is still shedding begin taking an iron supplement. This apparently helps stop the PFC shedding pretty quickly for many women. (If anybody who'se done this can chime in, that'd be great!)
Bapen, and anybody reading who is considering using PCCs or about to start, please PM me with your email and I'll send you my writeup and some before/after pictures and lots and lots of pointers on nutrition, exercise, the hair care protocol, and how to mentally prepare yourself for this amazing journey.
Best,
Susan
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Ang7: The type of chemo is a major factor in how much of the hair can be saved during chemo. ACT is harsher (esp. on liver function) and people tend to have much greater hair loss when using either cap system; there used to be data on the PCC site about this, I don't know if it's still there or has been updated. The PCCs get colder, stay colder, and have a better overall success rate than Elasto-Gels. The PCC protocol is very different than the Elasto-gels (PCCs are worn pre-infusion, during infusion, and 4 hours after). Women who have adapted the PCC protocol to their elasto-gel caps seem to have had better success (they change them more frequently than Elasto-gels recommend, wear them longer than elasto-gels recommend). That said, there are women for whom neither of these systems worked, and there are women with each system who have had success.
In addition to the chemo cocktail variable, there are individual variables: overall health, liver function, age, condition of hair, and how the chemo is tolerated. According to Frank, those of us with thick dark hair tend to lose more than those with thin, fine, fair hair -- but we have more to lose and still have full coverage. Carnivores also fare better than vegetarians...
I hope future studies of the caps can parse some of these variables so we can better understand them.
I feel it is important for the spirit to use any method you wish to handle SEs of chemo, including hair loss. I learned alot from Arlene. Though she had more hair loss than I did, and never needed a scarf or wig, most importantly her spirit was strong and her attitude positive. *That's the real key.* It was important to me to try to keep my hair (and I did) -- not as an issue of vanity, but because I refuse(d) to let cancer or chemo take my spirit or soul. It's like I always say, this is a journey about living, not about not-dying. I was one of the earlier PCC users and went into it expecting it to fail and be a big hoax. Instead I found a handful of women on this list (including Ang7) who helped me get through it and helped me realize it was actually working.
For those who aren't sure whether to use either of these systems, the bottom line is: you now, finally, have a choice in the matter and that in itself is huge!
Cheers,
Susan
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hair update: I am 3 months and 10 days post PCC. I had another hair cut today and cut the rest of the damaged hair off. My hair is above my shoulders a couple inches past my chin and looks thick again! I have had 5 hair cuts since 9/22 the day of my last infusion. I was not willing to do a big chop when I finished chemo because I thought I could nurse my hair back to life. I had friend who is a hair dresser come to my house every 2 and 1/2 weeks to cut my hair. My hair looks healthy again and continues to grow fast. I am so grateful to have used the caps and I kept 90% of my hair and did not shed for a long time after chemo.
Did any of you ladies manage to keep your locks moisturized well during chemo? I wonder if I had used organic hair oils I would have been able to keep my long hair? Any way at the rate it is growing, I will have my long hair back soon!!!!
These caps do work ladies!!!!!!
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Hi all and Happy New Year! Here's to a better 2012.
So I lost a significant amount of hair after first chemo. Posted Dec 8th, freaking out! Have #3 this week and still fooling them! I started with a lot of hair and am able to get away w/out hat/scarf. I prefer having a bad hair day to a no hair day ;-) Sides and back are thin but I figure it will be easier to fill in than start from ground zero; hope I can keep it going for 2 more treatments.
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BTW: I took Iron after I finished chemo and my shedding stopped shortly after. I take many vitamins and supplements now. I stopped shedding after week 5 post pcc.
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I used PCC's and I kept most of my hair. It thinned all over and I lost a bit at nape of neck, temples and hairline in front, but no one could tell. I had long hair but did the big chop 8 mo's PFC and cut to shoulder length. I love my new cut...it looks thick and healthy. I am using Organix Argon Moroccan Oil Shampoo, conditioner and styling oil. My hair feels great. I did shed PFC for a long time but I was anemic. I started taking iron and I think it helped the shedding stop. I did not lose anywhere near 70% of my hair. Photos on my blog of before and after. I posted them in September.
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sebm9, Thanks for the tip on taking iron!
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Laura: Make sure you don't take too much iron because it is fat soluble and stores in the tissue and too much is not a good thing. A side effect of too much iron is hair loss! Yikes.....Most of us are deficient during and after chemo though!
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ArleneA, Hair loss?? Yikes! I will be sure not to over-do, thanks!
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Hi all,
I was anemic too at end of TCH 6th infusion. Took iron supplement but I am uncertain if that impacted not shedding. I just returned and had herceptin infusion today after a 2 and half month break from herceptin infusions due to heart damage. I showed the infusion nurses my fuzzy sideburns and short fuzzy bangs (where the cap didn't cover). My hair looks pretty good now, thicker and the old hair covers up the new wings on the side of my face. The new hair feels strange, fuzzy, baby fine and not at all like my other hair. I wonder if the new hair texture will eventually change.
Susan- I am suppose to start Arimidex. Discouraging to hear that it causes hair loss and weight gain?? What other options are there? Seems ironic to not lose hair in chemo only to lose it later with pills.
Hang in there everyone (including your hair).
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Sserenity: Glad to hear that you are back on Herceptin. I'll see soon if I go back. I've missed two treatments thus far but made it to 10.
I'm on Arimidex and haven't gained weight or lost hair from it. Everyone is so different with the SEs. I also don't have the achey joints that a lot of ladies get from the Arimidex but having said that, it could all still happen. I've only been on it for a little over 3 months.
Take care everyone!
Arlene
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serenitywisdom: like all the chemo drugs, the adjuvent hormonal treatments *can* (possibly) cause a menu of SEs, which you may or may not get and in varying degrees. I had almost no SEs from chemo. I had none from rads. I had pretty much everything from tamoxifen, from time to time. Go figure!
I've been on Arimidex for about a week and had one day of achiness but nothing since, and no other SEs at all that I can tell. I had to remind myself not to "read ahead" on the boards in terms of symptoms. I had myself pretty worked up for a day or so, though I'm glad to have discovered about (potential) hair loss which was not discussed during my MO appointment. My mood is definitely better than on tamoxifen, and I sleep much better. I've had a few hot flashes but realized early on that if I have anything with sugar (ie. sugar in my morning coffee, a glass of wine, a scoop of ice cream) I almost immediately have a hot flash. So, just another reason to avoid sugar!
Keeping hydrated and maintaining a solid, regular exercise regime are fabulous at keeping SEs away.
I continue to be surprised by occasional spells of needing to sleep and take naps, 2 years post-surgery. It's leftover from surgery/anesthesia/chemo/radiation. Mentally, I'm back at my normal 150% energy level going full-tilt; I'm surprised to have a day when I'd rather just take a nap than swim and get my hike and lift weights :-) Then I realize, oh yeah, I'm still battling cancer!
My hospital's foundation has a beautiful full-color magazine, and they're publishing an essay I wrote about my Swim Across America swim across the SF Bay (for cancer research) this fall and my cold cap experience. My CEO called me to his office in tears to tell me how beautiful the story was - he's a friend and an oncologist and supported me throughout my journey, and we want to try to get caps at my hospital for our teen patients. He also shared a draft of the story with some management consultants we work with. Today they took me aside to ask me about the caps; they were astonished by the process, the success of the caps, and the fact that they'd never heard of them. Now another hospital will work to build PCCs into their oncology center, and then word will spread among hospital CEOs and onc nurses...I'm so excited that this will make chemo/cancer/living so much better for so many people down the road.
Everybody doing this, you are all pioneers paving the way for the women who will, unfortunately, be making the chemo journey until there is a better solution. For those of you toughing it out as the first PCC user at your cancer center, you do a doubly tremendous thing: battling your own cancer, and educating your cancer center staff about this incredible tool to alieve the SE of alopecia due to chemo.
Keep on keepin' on,
Susan
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Bumping for luve2runn.
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sebm9, Way to go on spreading the word! I gave my onc PCC brochures and asked him to tell new patients about cold caps. My hospital had never heard of them.
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Laura5: Excellent! It took forever to get brochures from PCC, because they were developing new ones at the time, but I try to carry them with me always. So much work to do, and it remains very patient-driven. I think once the caps have FDA approval, the tide will begin to turn. I was excited at how many people found out about them from the 2010 autumn Good Morning America story, but a year later the majority of doctors (and patients) still don't know about this option they have. Thanks for helping spread the word! It will absolutely make a difference in another woman's life, the way it has for you and for me.
Susan
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Much has happened since I last logged on - Steph's hair - what she lost with the failed Advance Cap Cap scam, a big bald spot on the top of her head - is growing back. But I see AVC is stillout promoting this as a good product. My advice - use Pengun - better, safer and the maker is a real scientist with great knowledge of cancer treatment.
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Day 19 post TC #1, and I still have all of my hair. I have not noticed anything other than normal shedding (knock on wood). I have lost body hair, but that's about it. I am thrilled. The cost, hassle, etc is worth it - here's hoping that using PCCs continues to be successful!
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ckk, I'm sure they will be, and as time goes on, you will feel less and less nervous about them.
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Hello all, I just had my one year post chemo check-up. Thankfully all is well. I was suprised and pleased to hear that there was not just one, but several cold cap users at my Kaiser, Redwood City facility after me. I didn't think they heard me, but I guess they did. Yeah! I confirmed again today how much they helped me deal with the treatments and going ahead with my new healthy life post cancer. I saw some brochures from the Minneapolis group. Are there some available from Penguin directly? Hope so, they would be so helpful.
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Contact Geralyn at PCC's....she can give you brochures. She mailed me some in the summer.
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Thanks for the update motherofpatient; glad that Steph is doing well and that the bald spot is filling in! Advance caps ought to be run out of town, imo. Such a scam, and taking advantage of women with cancer, no less.
Julia1969: I received a big batch of brochures from Penguin about a year ago; I'm sure if you contact them they'll send you some to distribute.
Susan
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Today I went for my herceptin and I could over hear a woman in the next room talking to the nurse about when her hair would grow back. The nurse told her about two months after the end of her treatment. I almost fell out of my chair! I grabbed my pony tail and felt so much joy holding it!!!! I am so grateful for my hair and for the caps. Ladies who are losing a lot, take comfort that the hair you lose during chemo, grows back during chemo. Your follicles are protected and even if you have to cut your hair, you will have hair at the end of this process to cut. I can't imagine waiting 2 months for an inch of hair. These caps are so wonderful.
On a different note I am 3 months and 3 weeks out of my last chemo. My period returned yesterday. If any one was hoping that flow would come back to town, it does.
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Hi Everyone,
This is my first post but have been reading about the cold caps on this board and got the nice write up from Susan. I had my first day of chemo today. Sorry no stats posted but am taking T/Cx4. I picked up my dry ice pellets the afternoon before and we packed the coolers the next morning. One thing I was not expecting was the high price of the dry ice. I paid just over $200.00 for 90 pounds. My jaw dropped on that one and I did think, is this worth it? But yes it was. The caps were frozen about 4.5 hrs. by the time we could take the first one out. It got to the right temp. within 10 min. or so. Due to the confusion of the first day and all, my husband kept the first three on for 20 min. and I was on my 4th by the time the chemo infusion started. That's ok as my hair is fine but on the thicker side. We also forgot to knead the caps every 10 min. while on until the 4th one. I was so worried it was going to be too painful to do as I had just taken an Aleve only minutes before the nurse said predemd would take 45 min. so we then got going right away. However, The cap went on just before she inserted the iv needle and that hurt worse than the cold, which was very bearable! After the very last cap came off my head did not feel much different except for a very slight tingling on top. Is this normal? I just hope we did it all correctly. I was expecting more numbness.
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Marie3: Congrats on getting the first one done! That's the hardest. It sounds like you did great. I did not know to knead the caps until the 3rd treatment & I kept 90% of my fine, but thick, hair. Tingling? Yes, I had that. Felt like creeping, crawling bugs on my head. Afraid that would mean it would fall out, but did not!
I told the dry ice place that it was for chemo to save my hair and they let me buy it at cost each time. Only 30 cents per pound. You might call around & see if there's a place that would do that for you. This place is selling it at cost for the five other girls I've helped. I finished chemo in April and my hair is back like it was! So thankful! I can blow dry, curl with hot rollers, and highlight to make blond. Started washing in warm water this month.
I'm curious: what was the attitude of the nurses at your infusion lab? The girl I helped last week had the same problem I did. They were not at all helpful and seemed irritated that she wanted to do this to keep her hair. I showed her how I had kept mine and she expressed no interest or pleasure whatsoever.0 -
Howard, it's encouraging to know how well you did. I was just worried as the back of my scalp felt normal after the whole day. Apparently the nurses remembered people trying the caps back in the 80's and said they did not work well but were all supportive of me. I had one nurse and she was just fine with it all. She chose the same time I was getting it ready and putting it on to be having the big talk with me about all the side effects I may be experiencing and it was hard listening to her and getting the cap on at the same time. She didn't seem to understand how big this moment was and how worried I was as to whether I would be able to stand the cold and my husband working on the timing of everything. So the beginning was a bit crazy. She just came back now and then during the day to check on me and let us do our thing. The Nurse Manager came by and was asking questions and seemed excited by it all. She is going to see how I do and look up the Penguin website.
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Good thoughts for you Marie3...
I did the Penguin Cold Caps over 2 years ago and my oncologist office is having people call me for info. I hope it will be offered as part of treatment one of these days...
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Marie3: I was always certain that the back of my scalp wasn't getting cooled; to me, it felt normal. However, my exasperated helper (and meticulous record-keeper) not only documented the temp before but after each cap I wore, and in each section, and also took the temp of my scalp. Yes indeed, it was frozen! And I did not lose hair there (just at the nape). Because the cold caps numb your nerve endings, the sensations can be deceptive.
You'll do great.
For those just starting out, esp. those who are the first at their cancer center to use PCCs, trust me: the reaction you receive at the start of chemo (accepting but skeptical, usually) will be vastly different when you walk in for your final chemo with hair on your head. Just remember, oncologists and nurses haven't seen anything else before. No need to try to talk them into understanding; they'll be watching you.
Some of my onc staff also said "oh yeah, I've seen caps before and they don't work." Turns out about 20 years ago there was a scalp-cooling movement, and it was akin to shower caps filled with ice cubes...and of course did not work. My nurses were all very appreciative of the "new" (i.e. PCC) caps and how effective they were for me, but it wasn't until the final chemo that they were truly convinced. It wasn't until after the final chemo that *I* was truly convinced, for that matter!
Susan
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Granted I used the ElastoGels but I'm curious why so much dry ice? 90 pounds sure sounds like so much!
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