Cold Caps Users Past and Present, to Save Hair
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Whatashocker3: My MedOnc was skeptical but accepting and offered no push-back. I'd already researched them thoroughly before signing on. She didn't think they'd work and warned me every week up until chemo #3 that my hair would fall out that week. In 20+ years of practice she'd never seen anything else, so that was her job. By my third chemo, she stopped telling me my hair would fall out, and by chemo #4 she was hugging me, speechless. After watching me use PCCs (I was the first user at my cancer center) she, and the nurses, and all of my care team are converted. In fact, all of my doctors including my obgyn now recommend PCCs to their patients. One physician also referred her best friend to me to coach (now that's an endorsement!). My MedOnc (who has a research background also) was especially interested in how picture-perfect my bloodwork stayed throughout chemo - by the end of treatment, I didn't even visit her weekly. I'm convinced that staying active because I had my hair, and the regimen I followed to keep my hair (water flushing, etc.) had a larger impact in that I detoxed more quickly and therefore had few if any SEs from chemo.
I also work at a hospital, and hundreds of folks were cheering me on through the process, and there's interest in having the caps available for our teen oncology patients.
If anyone's doctor gives them push-back about the caps, remind them that with a simple PubMed search they can see the studies for themselves, which date back to 1973. They should also contact Dr.Hope Rugo at UCSF who ran the clinical study which is just completing.
Also, be very wary of a doctor who is NOT open to new ideas. With that kind of thinking, they will surely not be on top of the most recent research and studies, and that could have a profound impact on your care and your very survival. You deserve world-class care, not out-of-date.
Hope this helps,
Susan
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T-minus 2 days and counting.
I went through some practice rounds with my cap helpers tonight, practicing how to put on the caps, getting them fitted properly, learning what works best. I was surprised at how emotional I got. Up until now, I’ve been busy, busy, busy, in planning mode, a sort of limbo, waiting for next Tuesday to arrive. Tonight drove it all home.
I. am. having. chemo.
It felt somewhat surreal for a moment. A deeper reality of chemo came rushing at me like a freight train. I felt a rush of deep, deep, sadness, and tears come forward. I had an overwhelming desire to cuss like a sailor, and to tell cancer to go ____ itself.
Just damn.
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LeesaAnn,
I can totally relate to your description of the reality of chemo sinking in. You will get through this. We all will, even if we don't know how at the beginning. Good luck with the hair, everything!
-Lisa.0 -
Soccer girl: if you are not shedding and are able to blow dry your hair already, then I guess it would be ok to color early. I just did everything Frank told me to do and had excellent results. Didn't want to lose more and wonder if it could have been prevented by following the PCC guidelines.
LeesaAnn: oh I remember realizing I'm really going to have chemo and could hardly believe it. Even now my family and I can hardly believe we went thru chemo. I found daily comfort by reading the Bible and so often I'd read exactly what I needed to hear for the moment. It is scary. But not as bad as I anticipated. The caps were a great distraction. Drink a lot of water to flush out the chemo (10-12 glasses) and go for walks to exercise.
And this helped a lot: Someone gave me a blank book/journal and I kept a list of the many kindnesses and mercies of God and friends and family. That helped me watch for things in which to be thankful - and there were many. Now I'm one year out from diagnosis and have been reading through what I wrote last year. Has certainly enhanced this Thanksgiving holiday!0 -
LeesaAnn: I remember exactly that feeling even 2 years later. I'll never forget it and I still feel it from time to time. Everything was such a whirlwind, until 48 hours to go, and then it hit me. I used meditation, swimming, and walking to get me through those days (and still do). I was terrified because I didn't know if cold caps worked, but thank god for this list and getting to know the handful of other women around the country who were using them and also keeping their hair.
Infusion day itself flew by, the cold caps were a godsend in that way! One of the greatest gifts of it: I had such a positive, energized circle of care every time I went for an infusion -- with helpers, nurses, other patients rooting for me, lookie-loos... it got better and better each time, and it was contagious. People loved hanging around my infusion chair because there was so much positive energy. The PCCs were such a positive force for me, that it wasn't until months later that I began to *really* process all I'd been through. Some other women here have shared that they had a similar experience, a delayed reaction compared to women who were going through chemo without cold caps.
You'll get through chemo; managing the SEs is very very well-understood now, thank god. For me it wasn't at all like I imagined it would be. I felt 100% most days and never worse than about 90% at the very worst. If you start to have any SEs, at the very first sign do/take whatever you need to nip it in the bud. There is no reason to suffer whatsoever! You are kicking cancer's ass.
Susan
p.s. I had Thanksgiving with a writer for Ms. magazine and she wants to do a story on me and the caps. Helping get word out!
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Thanks Howard! I appreciate your input.
LeesaAnn: It is very hard to go through treatment. There are many highs and lows through this journey. For me the emotional piece is and was the hardest! Cancer can be very lonely and having a good support group is very important. Because I kept my hair and kicked ass on chemo, my family did not give me the emotional support I needed. I have communicated this to them and I encourage you to be vocal with your family and friends about what you need.
Having a spiritual practice is very important too. I love yoga and mediation now and they both will be forever in my life moving forward. There are many cds that are for healing and can guide you through mediation. I did it every day during chemo and it helped tremendously. If you pair the mediation after exercise you will experience a deeper relaxation response. Your body will heal super fast if you have a relaxation practice ( religious) while going through chemo. I am 9 weeks out and can run 5 miles again, hike in the mountains, etc.
My spirit is healing but not as quick as my body. I am going to see a health psychologist for added support who is an expert with people who have gone through cancer treatment. It is a battle to fight the depression that accompanies this F disease. I am close to kicking the depression piece but again this part is by far the hardest.
You will get through this!!!
It is so wonderful to keep your Hair! I
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Howard, thank you for your words of encouragment. A gratitude journal is a great idea. When I get stuck down in feelings of despair, I work hard to swing it around by acknowledging the gifts in my life. And even in the midst of cancer, I find many of them.
Susan, congratulations about the Ms. magazine story, that's so great!! Its my intention to work to increase the awareness of Cold Caps, moving forward. I think anytime one of us can use our experience to help future women understand and know about this journey we make an immeasurable impact on the lives of women.
Also, I am realizing the challenge and hard work my helpers will experience. It's going to be a busy, tiring day for them. I am so grateful for their love and support and being on my 'team'.
Thank you everyone! If it wasnt' for this forum, I would have no idea about cold caps.
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LeesaAnn~
Please keep us up to date with how you are feeling.
All of these ladies really care...
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Leesa Ann...that is exactly how I felt before chemo. I am 6 mo's PFC and still can't believe I had chemo. It is a very lonely, scary, emotional and physical journey. Just remember that you will get through this. I am so greatful to have read about PCC's and used them. It allowed me to go through this privately and with dignity and no looks of pity from strangers. Exercise got me through this. I exercised daily through all of chemo and only missed infusion days. I felt good and the cold caps made me feel more normal. Just know you can come here and vent and express your feelings and know that many of us felt the same way and understand. We will support you any way we can through this. Hugs!
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soccergirl: I had the same experience with lack of support. Because I looked and mostly felt 'normal' to outside eyes, I was treated as if life moved on just as before. That had benefits, of course -- not being treated like a sick or dying person -- but it had traps as well.
Everything, everything is different. It isn't fair to us or those around us, but the reality is that many aspects of our lives must change in response. For women, in particular, we must demand time for ourselves - to reflect, to exercise, to meditate, to nourish ourselves, and to not get sick again.
I found my strength even deeper than I knew, and I found love and friendship in so many new parts of my life -- it's like an entirely different life. That can be very hard on others, but their lives too must change for them to grow. Giving back through this process has been enormously healing.
The spirit I carry forward is that I worked too hard to be alive, to spend a single moment unhappy or unfulfilled. Life is short, and this continues to be a journey about living, not about not-dying.
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Hi everyone,
Reading all of your notes and words of encouragement to us who are still going thru chemo and those who are just starting IS SO HELPFUL. . LeesaAnn and other new cap users and new to chemo-YOU WILL GET THRU THIS AND WE ARE HERE TO HELP YOU. I remember feeling some loneliniess and despair when I first started. . It has been 4 months PFC and may sheeding has almost stopped I am grateful to have about 90% of my hair and even grateful to have very long dark grey/black roots (about 4") . I am getting up the nerve to go to my professional colorist who says he uses only a little of ammonia. He says using product like color mark will probably not work very well since my roots are now so long and very different color from my faded out light brown hair. My hair is dry and I have curly fine hair around edge of my scalp and short blackish grey sideburns where the cap didn't touch. I still use cool water but have been blow drying my hair on low heat with no ill effect.
I have to say I am disgusted with attitude at my clinic of some who still say "well happy that it worked for you." I see no one else using them and I plan to do some more outreach.
For me making a grateful list has been helpful. I plan to also give a small holiday party to my team of girl friends who helped me thru the TCH and caps.. I am trying to not get depressed right now but the onc stopped the herceptin temporarily (it has been 7 months that I have been on it) since my heart has showed some changes this past month. So my reconstructive surgery got delayed and also the herceptin infusion stopped, but hey I HAVE MY HAIR . I don't look sick and really don't feel sick. Wierd that I have to take beta blockers and baby aspirin and told not to exercise- they are treating me like a heart patient. This too shall pass. I am seeing another cardiologist in 2 weeks who knows more about effects of herceptin on heart- apparently a rare side effect.
Yesterday went to beach and walked on tide pools and saw a lot of starfish, sea urchins, etc and grateful to feel the wind in my hair. I agree that this is a journey about livng life to its fullest
Take good care of yourselves!
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Hi, ladies. I'm new to this thread, having been lurking for a while as I await word of my Oncotype test. Given my grade 3 tumor and one node involvement, plus history of colon cancer, I'm pretty sure chemo is in my future.
I've been having my hair highlighted for 15 years and colored and highlighted for at least 10, since I began going gray. I'm debating whether it's better to try the cold caps and live with 6 months of gray roots or just lose my hair and look a bit more attractive with wigs.
Serenity, you mentioned going back to your hairdresser. Can you have your roots done while using the cold caps? That would make the choice easier for me. And if I choose to not use them and lose my hair, how long after it begins growing in can you have it colored?
I'm so appreciative of sites like this, where we can vent or ask questions that no one else will take seriously. I'm in my 60s, with grandchildren, so many would just poo-poo my concerns about hair. But I feel a lot younger than that, and take pride in looking younger than my years.
I'd appreciate any advice. Thanks!!
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This is the first bookmark I look at everyday when I log on to my computer. I don't often post, but thought I would chime in. I feel like you guys live in my head!!!
I started chemo on Oct. 8 and have my 4th and last treatment (TC) on Dec. 9th. I loved showing my full head of hair to my sister-in-law over Thanksgiving , who told me when I was diagnosed that I would be so sick from the chemo, I would'nt care if I had hair or not! Who says that??? Like many of you, I feel 100% most days and at worst, just not quite myself on days 5,6,7 after infusion. I am kicking chemos ass!!!!!!
I started exercising pretty faithfully about a year and a half ago, and thought when I was first diagnosed, I thought I would have to give up going to the gym. I couldn't imagine going there with just a scarf or a wig. I was never much for working out,in fact struggled with my weight in my teens and 20's. I think God was preparing me for what was to come, because after working out, I feel so strong and healthy. I definitely think keeping my workout schedule has helped me not only physically but emotionally. Even though I have dear friends at the gym, no one knows and that's the way like it!
Ok, onto my haircare routine. I have very thick, curly hair. I have had a love-hate relationship with it my whole life. But there are so many products out there that have helped me keep it under control. I have straightened it in the past to within an inch of its life! After finding out about cold caps I went natural and everybody thought I got a perm. Now months later, people are used to seeing me with curly hair. Well before diagnosis I started using "Deva-Curl No-Poo" (sulfate, silicone, paraben free), a cleansing conditioner similar to "Wen", if you watch the infomercials. I also use the Deva-Curl One Conditioner. I believe there is a similar product designed for those with less curly hair. I get it at Beauty Brands. Also based on your recommendations, I also ordered the Sea Chi Leave- in Moisturizing Treatment. I really never comb my hair, just detangle gently with my fingers on hair wash days with the conditioner and just wet and scrunch with leave in conditioner on the other days. I have always been a heavy shedder so try not to freak out on hair wash days when quite a bit comes out, but it is still very thick. Like many of you, the color thing had me stumped. I was nervous at first, but the dark, gray roots were getting to be too much! I am a dark blond and found "Fanci-full" rinse, a temporary haircolor. Yes, the same stuff my dear Gramdma used to use! The Frivolous Fawn color seems to match.(Wal-Mart) At first I diluted it and just put it at my temples. Then I got a little more brave and put it at my hairline near the part. A week later I put it down the part and more recently I stoped diluting so much and put it on some more of the roots. I haven't quite put it all over, but it it is no ammonia, no peroxide and just rinses out with water. So gentle you don't need gloves. It doesn't seem to be affecting the shedding.
I don't remember seeing anything in the info from Penguin Cold Caps about the shedding post chemo. Thanks to you guys, I am preparing myself for the fact that shedding may increase after chemo stops. I have never felt sick and I sure don't want to look sick. I couldn't bear the thought of feeling so strong and looking in the mirror and seing a cancer patient, even though I know I am one! Bless you all! Anne
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Susan and Anne Dr. Family can be more frusterating than the treatment. Things people say when you are down and out always seems to amaze me!
Hair update: I am 9.5 weeks post PCC. Hair has stopped shedding but I cut another two inches off today. My hair is collarbone length. My hairdresser friend says I a have 2 to 3 inches of new growth in some areas. However he claims I should cut more soon because the chemo took a beating on my hair. He says a few more inches in a couple weeks will make a huge difference. I am only blow drying bangs and flatironing them. The rest I air dry and or use a diffuser on the ends. I love Carol's Daughter's Hair Mask! I wish I used it on the ends of my hair during chemo. The product is all natural and made for damaged hair. Ojon hair spray is so light and conditions hair when you use it.
Questions for the ladies: I think my hair is in the growth phase because my whole head is growing faster than before chemo, how long does this last for?
I have to shave my legs but have no armpit hair, I am assuming the hair has not come roaring back yet if I have no armpit hair?
Did other women experience that their hair is much more fragile after chemo?
I am going to color my hair in 5ish weeks. I have not met with my colorist but need to do something. The color part is scary.
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I'm 7 months PFC and the hair on my legs has almost stopped growing. After chemo leg hair started growing fast, but now almost not at all. Anyone else experienced this?
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Howard: I'm six months PFC and my leg hair is still gowing like crazy. I have to shave daily and before chemo only once a month so I'll be glad if it slows back down but I'm also happy to see the growth. Arms are almost back to normal as is the down south hair. Non surgery underarm back to normal but nothing yet on the surgery underarm.
Hope everyone is doing well. I go for my yearly mammo and ultrasound in a week or so and am VERY nervous which I understand is normal.
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Howard- same for me...right after chemo...about 6 weeks, all hair came roaring back, legs, arms, down south....but now, it is more sparse on my legs and arms than ever before...I keep thinking I have chemo-pause to thank for that......
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Lmflynn: Is the hair on your head growing ok? Even though hair on legs is sparse? I'm fine with lack of growth on legs, but that makes me a little nervous about head hair. I'm hoping that will have healthy growth.
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Hi Lovely ladies! I have not been on here for so long! Seems like I lived on this last year!
My hair on my legs/arms is so light/slight. Hardly need to shave, which is a good thing. My hair on my head (and my eyebrows too) is growing like crazy. If I lift my hair up by the ends there is about a 2-3 inch thick patch at the base of the hair and thinner hair as it goes out. It is so funny to see the line...from way back in May!
Love to you all going through this!
Annie
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Hi Anniemomofthree~
Good to hear you are doing well...
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My first treatment was 12 days ago - not sure how that is possible in the time space continuum as it seems ages ago.
I think I've worked out that howard is my Cold Cap angel - and I mean angel in the most literal sense. She and her sweet husband spent hours with us working through exactly how to do everything - I'm totally going to pay that forward. Cold caps are going to be part of my ministry - I think we all need the zeal of missionaries to get the word out!
So one of my many quirks is that I have to shave my legs every day - sometimes every other, but every day is optimal. I can't stand the feeling of nubby hairs against sheets. I got really sick after the treatment and just realized today I haven't shaved in 12 days .... and didn't need to.
That strikes terror in my heart for the hairs on my head. So far, no shedding. I do occasionally tug a bit just to see - yea, I know but I can't stand the suspense.
I'm hyper aware of my scalp. My hair hurts a lot, but I get fever every afternoon about 3 into the night and I know fever makes my hair hurt - lovely flushed cheeks though!
And sometimes my scalp tingles in spots. And stings.
So if the caps didn't work, how will I know if my hair is about to fall out in clumps? Naturally, the school I am interested in FINALLY called and I am substitute teaching Thursday (day 15) and Friday (day 16) - I'm terrified my hair is going to start falling out in clumps in front of all those teenagers and the baseball cap look I've been sporting ain't going to cut it.
I almost wish I'd just let the hair go - the anxiety is killing me and I have post chemo PTSD. I feel like I'm just sitting around waiting for the next blow between now and next Monday, which is obviously my hair falling out since I've pretty much had every other hideous SE available.
On the bright side, tomorrow is hair washing day!!!! Yea!!!! Cracks me up the stuff I celebrate now - "kept the egg on toast down!!!! Yea!!!" What a weird world we entered.0 -
Howard....the hair ...my wonderful hair...continues to thicken...I did not shed hardly a hair from 6 months PFC to 10 months....but I sure got "wings" around my ears and at the nape of my neck....I have trimmed every 6weeks since 4 months PFC and the new hair is catching up. I feel close to my old self...my only issue is dry scalp....at my temples both sides...nothing seems to work...I have tried everything. My latest that I'm going to try is a mixture of neem oil and olive oil....any ideas anyone?
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TheLadyGrey~
That is great that you had howard to help with the Cold Caps. I think most of these ladies on here are pushing forward to have the Caps become a choice for all women. My husband and I have gone on a couple of "home visits" to assist a husband or two...
I was told that if I was going to lose my hair on TCH it would start to come out by day 21.
Not sure if you are on the same protocol.
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LadyGray...I did TCx4 and did not start shedding at all until my second treatment which was day 21. It did not fall out in clumps or anything...just when I combed it, more than usual was coming out in the comb. I know it's hard...but have faith. They will work
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Wavewhisperer, age doesn't matter, of course you don't want to lose your hair. I wish I could help you out on your coloring question, I don't know, but hopefully someone here will have some answers.
TheLadyGrey, . My scalp also tingles, hurts, etc. at times. I remember after my first treatment, I was so anxious and scared, just waiting for my hair to fall out! I just knew the caps wouldn't work for me. I will have my 6th and final treatment in a week and still have all of my hair. Please try to relax. Just follow the PCC protocol and you will keep your hair. Every time you have another treatment and still have your hair, your anxiety will lessen and you will find that you have quit worrying.
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Regarding coloring our hair : Wave whisperer - I recall that during chemo, we are definitely not suppose to color our hair and the roots, we really need to be careful, see protocol from PCC's. There seems to be many ideas on when it is ok to use color after chemo. . I would guess we are all different re how our hair might react to stronger coloring ie using product that contains ammonia and/.or peroxide
Does this make sense: if we are done shedding or it has slowed considerably down PFC, then it might be safe at that point to color hair using permanent color. ??
Re scalp tingling during chemo, that was scary to me. I kept thinking my hair would start falling out when I got that sensation. but It did not happen. I am now 4.5 months post Taxotere and Carboplatin and the sensations I get now is an itchy scalp. I still don't wash my hair using hot water but rather cool now. Ideas welcommed on how to treat itchy dry scalp.
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FIrst day of chemo and caps. Was tougher than I imagined. Important lessons learned for next time. Exhaused from a day of stress and shivering. I kept telling myself this is worth it, approximately 24 hours of total cold cap time over the 3 treatments and I will keep my hair. When I wanted to quit and thought this was totally crazy, I imagined how I would feel facing months of baldness and months of regrowth. 24 hours of cold caps won out.
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Did you get an electric blanket and take ativan? That made it tolerable for me.
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I was worried that the Ativan would knock me out too much, I felt calm going in. Next time I iwll get it, and I will bring an electric blanket, definintely. I think my helpers were overwhelmed by the experience. I was. LOL! It will be easier to manage now that I know the drill and how to better manage the process.
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Lisa...glad this first round is over for you and you have a better sense of the routine under your belt. How are you feeling?
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