Cold Caps Users Past and Present, to Save Hair
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OneTexasDay- I hope everything goes well tomorrow! It will be over before you know it. I had my port removed yesterday, which is crazy since it seems like only yesterday when I had it placed!
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Daye, I couldn't wait to get my port removed! Others suggested it was too early but for me it was quality of life - mine hurt constantly and it really felt like a milestone to have it out. Congrats to you!
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I wonder, did Amy Robach even hear about cold caps? When the Washington Post did an article about the cold caps after I had used them, I posted my thoughts and my results on their online forum. Robin Roberts posted on the same forum that she had never heard of them...
My hairdresser has been trying to hand out the pamphlets when she hears that someone is dealing with cancer. She told me that many people say that is great but it probably does not work.
I really wish there was someone that would embrace them and be able to get the word out that they work and maybe they could be a choice for someone. They made such a HUGE difference in my treatment and my life.
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Maybe one day cold caps will be considered part of the accepted Standard of Care for chemo patients of all kinds, but for now I am proud to say we are pioneer women venturing into an unknown frontier and doing it successfully. That makes me excited to think of the legacy we will be leaving some day. Good job ladies. I really don't mean to romanticize cancer but 50 years from now who knows?
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Well for me that is why I went public with photos and such on my blog. I was sick of people saying they didn't work. I wanted to offer hope to women faced with chemo. Like I have said before, if anyone would be willing to share their story about cold caps on my blog, send me a PM. I would love to add more proof. If you don't feel comfortable having your face in any photos, I can edit your face out of photos easily. I just want to show others the caps work. I never intended to have photos and reveal myself when I started the blog, but I finally got so frustrated with the lack of information on the caps. I can tell you I have had so many women do the caps because of my blog. That makes me feel like it is worth it.
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I'm in. Last TX is around 3/20.
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Go Stephanie!
mdg - I'll be glad to share photos if I am reasonably successful. I used to have beautiful hair. It was always one of my nicer features. One day I plan to say that again.
I do have a couple bald spots and it is only day 23. Everyday I am shedding more and more. I had a huge shed yesterday. When the hairs come out it's not just a few but maybe 30 or 40 at a time and it continues throughout the day. It's a lot. Yesterday filled an entire snack size baggie. I am tying it back to keep it from annoying me and to prevent me from playing with it. However, I still have hair. I am concerned that if it doesn't slow down I will shed out. Some of the people who don't use the caps are at the same point I am at by this time and that does concern me. I have stuck to the protocol but I am one of those people with longer semi thick hair. I am taking biotin and liquid silica and drinking water and eating yogurt. I hope I am just an early shedder and it will slow. The worst part of failing is leaving the nurses with the assumption that the caps don't work. They did seem more positive with my 2nd TC when I walked in with hair. I can deal with sporting skull caps and such and the stupid wig I have reserved. I just don't like to lose. I am competitive in that way. When I set my mind on a goal I see it through. I can just picture myself at TC 4 with 3 strands of hair and the caps to protect them. LOL! Those pics won't go on mdg's blog!
I am anxiously awaiting good news from Schoolmom today. The seriousness of cancer puts the silly hair drama in perspective.
I hope everyone has a great day with no shedding and empty baggies!
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Ooops. I just thought of a couple more questions for everyone.
I see on the thread that some women take notice of whether or not the hair has a follicle attached on the end. Most of mine do not but some do. I suspect some of my hair loss is just plain breakage. It seems quite brittle. What difference does it make if the follicle is attached? Does that mean there is concern that the hair won't grow back???!!!
Also, in preparation for more or larger bald spots, I am wondering if it would be OK for me to wear something like this:
http://www.sparklingearth.com/details.asp?sku=601:601-6055
Or would it cause more hair loss?
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I lost tons of hairs with the follicle attached and I have more hair growing back then I ever had in my life. It will be ok.
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Warrior_woman, I've been following you and your experience with the cold caps. I can perfectly picture myself as you. I went for chemo class yesterday and asked about doing the cold caps. The nurse actually laughed, shook her head and said: "That doesn't work". I said that I knew of ladies who had used them and the caps worked (hoping she wouldn't ask if I knew them in person). She asked: Do you know them in person? I was like, no, but I'm in the same support group online. She responded that she did have seen a man trying them and it did not work for him. There I went defending my position, I said: "Maybe he did not follow the right protocol". She kept defending her position and said that he was a doctor and knew what he was doing. OK, I thought I can't reason with her. I just finished the class and left. Thanks God I'm getting a second opinion, and hoping at that center they are a little compassionate and don't try to put you down. She told me before I left that if I used the cold caps and they worked, to go visit her and show her how much hair I had. Do you think anxiety is making you shed more hair that what it should be. I get very anxious too, and even thought I have a lot of hair, normally I lose a lot of hair when I wash it. Please try to feel less anxious, try to imagine those hair follicles holding onto the scalp. I'm rooting for you and if I have to do chemo you'll be reading about me and cold caps experience, too. You made me laugh so hard about holding onto those last three hairs. An uncle used to tell us a joke about an old man who only had three hairs at the top of his head. And every morning he had issues when combing his hair because he didn't know which way to comb the hairs, to the left? to the right? or backwards?. LOL
Schoolmom, praying for your results to be good news. God is great and he is with you. A big hug your way.
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sweetmom, don't worry - I got the same kind of response from most of the medical professionals I talked to. My oncologist told me outright, "They don't work. Don't waste your money". She's now recommending them to new patients. People are slow to assimilate new information and everyone likes to feel like they know what there is to know about the field they work in. I got some pushback from a nurse as well and it became clear to me that she interpreted my decision to try the caps as some kind of insult to her medical expertise and her medical expertise told her that the caps didn't work. Truth is, the earliest versions of the caps (back in the 80's and 90's) DIDN'T work - but the new ones do, especially with TC! You've just got to follow your own intuition. At some point the amount of cap users will reach a critical mass and this kind of discussion with medical professionals won't even be a thing any longer. Until then, keep going!
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WW- I tried to notice if my hair was coming out from the roots because I considered that chemo related hair loss. My hair was shoulder length and I had a lot of breakage. But the key part was- I still had the hair. Sure it was shorter- maybe chin length now, but I wasn't bald- no need for a wig or scarf, certainly because the hair was still there. One good haircut after chemo to even it out and everything was fine. For me it was the difference between bald spots or thinning- which I did have around the ears and nape of neck- and just plain shorter hair.
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WarriorWoman-The experience you had with the Social Worker is prevalent. This article helps to demonstrate the lack of understanding and compassion of nurses for those using cold caps.
Hair loss with chemotherapy: at a loss over its management?
Author information
Abstract
Alopecia is a common side effect of chemotherapy treatments for cancer; for
some individuals this results in complete hair loss. The extent of this depends
on many factors including the type or combination of drugs administered, and
their doses. Further, it can in some cases be lessened through use of scalp
cooling techniques. This method of reducing hair loss has been available since
the 1970s. However, previous evidence suggests that nurses are apathetic about
its use, which in turn might mean that patients are not always offered this
intervention. This small exploratory study investigated perceptions held by
nurses administering chemotherapy towards alopecia and its management through scalp
cooling. It entailed completion of a survey questionnaire by 13 nurses that
regularly administered intravenous chemotherapy. These data were then augmented
by those attained from follow-up, semi-structured interviews that were
conducted with three of the sample. It determined that perceptions of scalp
cooling were influenced by individuals' subjective notions of its efficacy
constructed from their experiences of having administered scalp cooling.
Furthermore, attempts to prevent hair loss were mediated by their cognitions of
the experience of hair loss itself. This study determined that views held about
scalp cooling varied considerably, and that it was unlikely to be offered to
all suitable patients or administered in a systematic manner. Such variation in
provision has implications both for patients wishing to access this treatment
and for nurses wishing to audit its use and efficacy.PMID:
15952966
[PubMed - indexed for MEDLINE]
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Hi everyone,
Just dropping in to check on schoolmom. Like everyone here I'm hoping she gets good news.
shipsgirl, mfm, jc - I'm definitely begining to feel a slump too. Not full on depression - but but certainly fatigue. Not sure if it's the Tamoxifen that's making me so tired, or depression, or both... but I"m definitely feeling it. 2013 wore me out.
Kay
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I just woke up from my nap and sat straight up. I was really nervous today and asked for then to add extra Ativan to my infusion and they agreed. This was the most painful time I had with caps.... I was very irritable most if the day.
I REALLY REALLY SCREWED UP AND I AN TRYING NOT TO PANIC.
My Herceptin time counts as my time after chemo. Somehow, I remembered that I needed to keep caps on 2 hours after chemo which I did. I woke up and that didn't sound right. Looked back and Geralyn's note says 4 hours.
AM I AN IDIOT OR WHAT?! I was just totally out of it and not on my game all day today. Am I totally screwed? I just want to cry!
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one Texas day. I saw on this thread someone do only 2 hours with the caps and I think she did fine. Don't despair now. You're going to have to wait this out to see but I don't think its a sure thing you've messed up. When they cool with diginicap I know they don't run that long.
Breathe.
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I can't believe I made such a huge goof. Have reached out to Frank and Geralyn to see what this means and if there is anything i can do to mitigate the risk of damage at this point, but no response yet.
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school mom, I know what I am dealing with nothing compared to what you have on your plate waiting on results. Sending hugs and prayers to you for good results.
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hello ladies. Good news and so so news. The ct confirmed what is a 9mm nodule. The pet was mine. Onc still believes it is an incidental node. I told him about sinus congestion. He put me on antibiotic and said it could explain scatter in lymph nodes and even the node itself. Because I am on arimidex I am in treatment and no cancer should be growing or appearing. He is taking ct scan to radiologist to see if lung biopsy is even possible. Apparently the needle can miss the node because it is so small. Said we may wait 6 weeks. If infection clears up and new ct does not show node then it was the sinus. If it is still there we may watch yo see if size has changed. He said no danger in. Waiting. I feel calmer and not so anxious. Thank you for thoughts and prayers. You were my mantra all day. Take care to all.
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Schoolmom - so glad you updated us. I hope it is just the cold. I know the next 6 weeks are still going to be filled with some worry but we are all praying for you. Let us know if they can biopsy.... Hugs!
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schoolmom. Praying for a cold! Thanks for the update and I hope you can relax a little while waiting this out. Waiting is so hard!
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Schoolmom - sounds like good news to me. Wishing you the best!
WW - your shedding sounds normal for your timing, distressing as it is. Try not to fret too much, although almost all of us did the same. It should let up soon. Just remember that you have over 100,000 hairs on your head so losing 40 at a clip is nothing. I had a few small bald spots too, which were caused by a bit of frost bite. I combed over the spots and before too long could feel stubble as the hair grew back.
I also had a lot of dryness and breakage. At the time I could not always tell which hairs fell out from the follicles and which simply broke off. The broken hairs will continue to grow longer, as you can tell by their natural colored roots, and the ones that fell out will replace themselves after a few months of normal dormancy. That means that ones that fell out first will be the first to regrow, and those that shed later will start coming back later. They will not all wait until after your treatment is over to begin their dormant cycles.
I could not tell at first that mine were regrowing and almost despaired that they ever would. About two months after my final chemo I finally realized with delight that I had umpteen new 1/2" long hairs all over my head, they were just very pale and thin at first, so were hard to see. The hair shafts thickened up as they grew longer and took on their natural color, leaving just the tips slimmer in diameter and almost invisible.
Re: Amy Rohback not losing her hair, she might well be on CMF. I was offered it as an alternative to having to lose my hair and was told by two hospitals that it would not cause hair loss. I did not take it as it would not have given me as good a percentage of staying cancer free as taking T/C, so I used cold caps.
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schoolmom - we are all rooting for you, ok? Please keep us updated on what happens.
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Schoolmom - sounds like you are in good hands. Now just take care of yourself and feel better.
Sweetmom - I think if you can tune out the naysayers and pay attention to all the women on this board, it will help. We are all real people, with different levels of success with the caps. The nurse at my infusion center was the same way - when I told them i was using caps, she gave a little laugh and was very condescending about my using them. I just smiled and continued to bring in my coolers, caps, electric blanket, etc. It was a circus. On my last infusion, she came in and said - "you've made a believer out of me". I hate to admit it, but it felt like an in-your-face win.
So I totally get you WW. My onc, whom I really like, made it my decision, but stopped short of endorsing them because the FDA hasn't endorsed them yet. I think medically, professionally, that's fine. I am still shedding (sigh), but I am sitting here about to meet a casual friend for coffee who knows nothing about my chemo or what I've been through. Ooops, gotta run. Gotta go do my hair! 0 -
SchoolMom - I am looking forward to more good news!
Texas - A lot of women on here had capping mishaps and got through this just fine. If I remember correctly, the old protocol only called for 2 hours of post chemo capping and then it was extended.
SweetMom - When I first found this thread I actually suspected that all these posts were from fake profiles in a grand conspiracy to swindle my money. If that is the case, they've done one heck of a great job and earned every penny!
MakingWay - It makes complete sense that a professionally trained medical person will resist new information from a lay patient. I'm glad my MO supported me. I think his feeling is that whatever a person wants to do to get through chemo is fine as long as they do the chemo. I'm sure he sees patients who refuse chemo for the hair loss fear alone. And that is really a shame.
reneer & tmb - Yep. I think it is a combination of hair loss and breakage. Okay. It will grow back.
Hortense - You always jump in at the perfect time with the reassurance and it really helps.
Having read each and every post on here and paying careful attention to the various patterns of shedding, I hope I am one of those people who has a big shed days 18-24 after the infusion and then it slows down. That was one of the many patterns identified. I have to wash my hair today and I am admittedly nervous. If it's anything impressive I will brighten your day with a new baggie pic!
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WW - As no doubt you are aware, you are at the most sensitive point in your treatment right now - as it affects your hair. You do not want to place any extra strain or pull on it or you will lose hair that you would not have. Just a friendly reminder - when you wash it, wet it gently with very cool to cold water - no direct shower spray unless it's an extremely soft spray, and wash it extra gently by patting the shampoo through rather than scrubbing or rubbing, before rinsing very gently. Same with any conditioner. Comb through it more carefully & slowly than ever. Try to hold down each section as you comb through it, to avoid any pulling at the roots. Start from the bottom and work softly through any snarls.
You may lose what seems like a lot this time as you are in the midst of your main shed, which means you are losing your oldest hairs. Try not to panic, though I know it might be hard when you collect a fluffy handful of hair from your shower floor. It only happens for a few shampoos, then the shedding scales way back as most of the oldest hairs have gone.
Getting your hair its usual squeaky clean should not be the goal right now. In another month you can start cleaning it more thoroughly when you shampoo. Slightly dirty hair is better than no hair. Air dry if you can, and use only cool air near the roots if you must use a dryer. You can use warm on the ends, but try not to pull on it as you style.
Best of luck, Sarah
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schoolmom - so glad you got some clarity. not knowing what's going on can be so hard so i'm glad they were at least able to say what's possibly going on. please keep us posted - we're all in your corner.kay
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Hi. I'm new here on the board but not new to the group as I have been reading pages of posts obsessively--so thanks to all of your for your wealth of information! I started my first of four courses of TC on January 21 and my next one is Feb 11, next Tuesday. I'm doing the cold caps and my oncologist actually was the one who convinced me to do it. The staff gets the whole procedure which is great. I'm waiting for the shed to start but it hasn't yet. I do have a halo of frizz all over the top of my head though--either from lack of product, new growth, or hair breakage. Not sure which is the culprit and it is driving me crazy, but today, after I had a nice normal chat with the check out woman at Trader Joe's, I realized how different the conversation would have been if I didn't have my hair. So I'm incredibly grateful for the frizz today!
Happy to join you lovely women!
Corinne
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Schoolmom, I'll be praying for it to be just the cold and new CT will show nothing.
Warriorwoman, I've been reading all the testimonies here and I'm sold too. My husband supports me and he said he didn't like that nurse.
Mfm, I hope I can go back to the nurse and show her that the caps worked. I'm in Miami, and there is no information around here. I've been trying to find someone here who have used them to teach my husband the process. I hope he doesn't squish my head trying to put the caps the tightest.
Thank you girls, I have no doubts I want to use the caps, how long does it take for them to ship. I still have two weeks before my treatment starts. Just don't want to start paying way ahead of time.
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Corinne - Welcome!
sweetmom - you have plenty of time. I got my caps in just a few days. Just be sure you put in your application so the cap paperwork gets started. Your representative will guide you through. I had to set up a FedEx account but that was easy.
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