Cold Caps Users Past and Present, to Save Hair
Comments
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Icandoallthings- I didn't take it that way at all, just wanted to share my reasoning so you wouldn't feel alone if yours was the same and it sounds like we have many feelings in common
.Capping is going pretty well so far. I posted some pics a page back to show how my hair is doing at this point. I started with short hair and was worried it would be an issue but so far so good...knock on wood! I find the actual capping process to be pretty tolerable. I take some Tylenol beforehand and they give me benadryl so that seems to make me a bit out of it which helps too. My hubby is the busy one those days with all the cap changes!
I am sorry to hear about your step mother. My mom is a 30 year BC survivor and this wasn't an option back then so she thinks it is really cool that it exists now!
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Icandoallthings
Just took off my Arctic cap after wearing caps for 6 hours,such a relief! # 5 Taxol for me.7 more to go. And for you only 4 times of capping.I am sure you can handle it! Take Tylenol 30-40 min before and maybe take some anti-anxiety drag. I take Xanax. Plus they give me benadryl. These all makes me so sleepy and easier to handle it. However, I am not going to lie to you , for me last 2 hrs most difficult- it is when i get home already and i guess most meds not so active anymore. But because of meds I mostly slept all the way through these 6 hrs. My husband woke me up only to change caps.
Also the hint, for ACC we don't follow instruction of changing caps every 20 min. We do every 15 . I feel the cap gets warm after a while. Plus, once you take a cap from cooler you need some time to shape it . IT is not easy and takes time. Take it into consideration. Who will be your caper? I have infusions at 3pm normally so my husband leaves work earlier around 2-1pm and joins me in the Hospital. I drive there from home with the cooler and he just comes by subway to the hospital in the city. It works great this arrangement. I just can't hire someone to do it for so much money. And friends i feel bad to ask to take days off, plus i think it will be very hard for a woman t shape caps. It is really hard physical labor to stretch caps and put it on every 15-17 min.
I am sure you will be OK with the caps. I know it is must be very difficult time for you at 28 with baby go through all these....
I thought i was the youngest one in my breast center. I see mostly older people and I am not so young -47 even thou I look younger, but it feels I am the only one in a younger category
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viktoryak - I am 41 and feel much the same way as you. I think my onc office typically has older patients although I will occasionally see someone younger than me.
I love your chemo day pics - very funny! I haven't tried any fun ones yet, just the few of my hair, lol. Maybe I will try some tomorrow
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A Hair washing technique.
I use a plastic beaker while in the shower. Keep filling it with water and pour over my hair till wet. The dilute shampoo on it and pour that over hair. Then spread shampoo by combing it through hair, Then rinse, rinse, rinse. Towel dry by covering hair with towel and squeezing hair and towel at various places. Then , as i have long hair, walk around house doing things while hair air dries, and little rag type curlers, are in my thinned out bangs. Long for the day I can use hair dryer again, but for now, this works.0 -
ladies, sorry to sound dumb ..Am I not suppose to wash under shower? I use barrely warm water but under shower. My shower is on of those side rain heads It doesn't look it it very strong....
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Victory-I washed hair in the shower. I am able to adjust the water flow, and I just adjusted the temperature and flow for hair washing.
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victoyak- your pictures crack me up!!!!
I wash my hair in the shower, with lukewarm water and I use a very mild shampoo, I am using dignicaps and I don't know if the protocols are different, I can also use conditioner on the ends only which is a great help with the troll hair.
icandoallthings I am on the same regimen as you, next week will be my 4 and last treatment, I was terrified before I started, and I think a lot had to do with not knowing what to expect, the first shed was horrible, I lost what seemed to me like 60% of my hair, but somehow people really don't notice it, toppik has been very helpful. The SE for me were relatively mild compared to other women, but #3 was the toughest. Remember to drink lots of fluids, and don't hesitate to call your nurse or dr. regarding any side effect, they can give you medicine for anything so that you can take care of your baby
And I used to feel as if I was very vain as well every time I told anyone that I wanted to keep my hair, I hate how people tell me oh its only hair it will grow back, but really its so much more than that, and I think its very difficult for someone who is not going thru this to understand that even though it will grow back, the hair falling can represent so much more, there is a reason why so many women find this to be such a traumatic experience. At the end of the day you can't really see any other side effect, but the hair you see every time you look in the mirror and beating this can be the first victory in this fight.
good luck!
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Victoryak
I. too, just adjust my shower head to the lightest spray setting and have showered underneath the past three months. I also used a helpful tip from Angiel and use an extra large white cotton t-shirt to get moisture out of my hair afterwards.
ILoveArt
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I totally admit I cold capped out of vanity and I don't care who knows it. LOL! 😁
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I felt vain about saying it out loud too, but it was absolutely the right decision for me. I kept nearly all my hair! And no one ever knew. It allows a little sense of control over this NIGHTMARE, and it allows privacy.
It really bothers me that everyone says, "wait a minute, don't go jumping to a double mastectomy, you need to stop and think about it". But then out of the other side of their mouth they say it's no big deal to lose your hair. EVERYONE can see my hair. Only myself and my husband ever see my boobs.
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Thanks for the advice on the tylenol before! Do I need to request benadryl when I go in, or is that part of the treatment anyway?
I am sitting by my door right now waiting on my cold caps... Fed EX is taking forever, and I have to be to the doctor in 1 1/2 hours for a class and I think Lupron injection.
My husband will be my capper- Im not sure he knows what he volunteered for! hehe!
I also have to get dry ice today... I can only find it in blocks near my- no pellets. Anyone have experience making your own pellets? How did you do it?
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Icandoallthings, They also give me blocks of dry ice as well as put begs of small cubes of dry ice inside each cap. It doesn't have to be exact as company says .Plus we found out that you need to seal cooler or dry ice evaporated. You can use tape to do it. My treatment usually in the afternoon and a few last times I was afraid ice melted so I stopped by dry ice company on the way to the hospital to get extra few pieces. If anyone needs dry ice in North NJ I can recommend amazing guys. They prepare all for me. I txt early morning and they have all ready. 8 begs for caps and pieces to put in a cooler. Also they didn't charge me first time and after that they charge only $20. Nothing extra if I come next day to get more....;)
Today I started getting free laser retouch on my bikini area....well I guess it is finally when it is starting hair loss on Taxol. I am worried about my head hair.. If caps will work or will I be shedding to. So far today the same no significant shed yet....will see .... Very worried:((
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Victoryak,
Nice picture, lol!
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Hello ladies, I was wondering why some of you avoid getting hot when exercising during coldcapping, I'm on dignicap and I wasn't warned to stay away from heat except for very hot showers. I live in Miami and can't escape the heat! I walk/run every morning and just got the red light to go back to hot yoga. I just had my "big shed" and yesterday completed my 2nd chemo, TCH, I'm feeling very confident even though I shed almost a sandwich bag over the weekend. I hope everyone is feeling good this evening.
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Edu, with penguin they tell you to avoid getting your head hot because it re-activates the chemo drugs.
I exercise a lot and am very careful to take steps to keep my head cool including a fan on my head when I can, changing hiking time, yoga is now at home, and on Sunday, I hiked with a little umbrella to keep the hot, direct sun off my head.
I am at 36 days and started a very mini shed. Maybe 10-20 hairs a day. Nothing that I wouldn't have lost with normal brushing. I also had a friend who cold capped who didn't lose any more than you usually would.
I wonder if there is somewhere you can research it more
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I distance ran throughout most of my chemo and I'm pretty sure my scalp got hot. I suppose it depends on the chemo but I think generally they are out of your system in 2-3 days so I don't know how you could reactivate a drug that isn't there. Not trying to disagree with you, Susan, I just think penguin might be wrong on this. Besides, aren't we all getting hot flashes? My head gets pretty hot.
Running was one of the few things that made me happy during chemo so I think we all just have to pick and choose our battles. Not running so I wouldn't get a hot scalp was asking too much.
Now I'm just looking forward to having a glass of wine again. I'm trying not to kill my liver right now.
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SarahRae-- I am still shedding a lot, but not quite as much since I have less hair (I think!) I actually have been saving my hair in dated sandwich bags, and plan to weigh it just to see how the volume changed over time. I usually comb my hair twice a day, when I notice loose hairs falling on my arms... All that said, I can tell I have less hair -- but recall that hairdressers in the past have actually "thinned" my hair during haircuts. I think my hubs still can't tell I have less hair yet. It looks flatter when it hasn't been washed in a while anyway. I do see how cold capping isn't an option for everyone. Folks who naturally have thinner hair might just not get as good results. However, decreasing permanent loss, increasing rate of return growth -- and keeping some "starter hair" could also be good reasons to go through with it anyway, especially in those golden days in the future when insurance will actually pay for this.
On the hair-washing note, I've been washing it in the bathtub, since it's easier to keep my PICC line dry there than in the shower. I've used cool water coming out of the bath spigot, but wish I had a hand-held spray head... I couldn't sit in bathwater cool enough to wash the hair in (by the cold-cap rules).
AmyAbs, your hair looks GREAT!!! I ordered a bottle of Toppik just in case (so I won't cry as much if I get bald spots), but if mine looks like yours I won't need it. I'm at day...22 post first chemo. Two more rounds to go.
Viktory, you go girl. I don't feel like walking the dogs around the block, but you are an inspiration!
Runner70, I was wondering about your steroid dosage since you're having such a reaction. I'm only on them the day before, of, and after chemo. (Don't know what dosage is off the top of my head.) And chemo only every 3 weeks. Did they have you on a heavier load of steroids? I'm so sorry to hear you're feeling so poorly... And I know the cumulative effect is real. You are an amazing inspiration too -- I can't imagine running a 5k right now, let alone a half-marathon. And I went on medical leave last month, 2 weeks before chemo even started. Hats off to you, but dear -- there's no doubt in my mind that you will make it out the other side, physically and financially in tact.
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One more tip for new cold-cappers; I did my second round yesterday, and found that having a thermos of hot tea with me really helped keep me warm from the inside. Like everyone else, Tylenol in advance, warm blanky, even a scarf, etc.... but still got chills in the afternoon of the first round. Never did when I had a cup o' tea to sip on. HTH!
Nighty-night--
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Thinking more about "vanity" and hair... It's so wrong to trivialize it and reduce it to that -- and I know that's not what folks are saying here. (Even though it's ok to be vain too!) A friend reminded me yesterday of the racial and gender violence done to folks by shearing long hair or pigtails. I posted an article earlier about the shaming/humiliation that goes along with shearing womens' hair against their will.
My darling husband surprisingly related a story to me about how humiliated and ridiculed he felt when his hair was shorn going into the army in the late 70's, meaning he stood out recognizably in that era of long, beautiful hippy hair, and how uncomfortable he felt being stereotyped and shunned, even. Even though it was his choice to go into the military.
For me it's always been about preserving a sense of normalcy and privacy. Not having to talk about myself again, over and over, which I avoid as a rule anyway -- as I do keenly avoid being the center of attention. Going from having hair halfway down my back to bald/wigs/short hair for 2-3 years until it grows back... well, that's the last thing from maintaining some normalcy and privacy. And cold capping 4 days in may case is SO worth 3 years of privacy. I know many others have more rounds than that, but in the overall scheme of things, the privacy & normalcy (and even "starter hair") gained per day of cold-capping is so worth it.
I find it's so much easier to share my story with you folks because the folks on other boards are dealing with the additional trauma of the normalcy/privacy loss and exposure that goes with hair loss. So grateful to have you ladies to connect to. xxoo
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One last thing (I'm hopped up on steriods, hopefully the Klonopin will take over soon!) -- I did look up CT chemo metabolism rates; Taxotere is supposedly metabolized out of our bodies ~85% within a week. The Cytoxan metabolizes out sooner -- just a few days/2-3-4. It is a little mysterious to me how the cold caps help when there's still so much in our bodies over time, but maybe the most of it does flush out in the first 24-36 hours. Maybe Runner70 can get better medical precision on that -- mine was just a Google search (when my MO couldn't answer the question!)
XX
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Hi ladies, some very good news to report, before I started chemo I had in the back of my head a couple of small bald spots, a result from stress and anaesthesia from the BMX, I am a week away from my 4th and last TC and I was checking this morning on those bald spots and I can't find them! than means that even though I have lost so much hair that I don't really feel comfortable going outside without a scarf or hat, my hair has been growing while on TC, which I hope means that the hair I lost on the first horrible shed may be starting to regenerate and hopefully I will see some regrowth soon?
Edu I am using dignicaps too, I think the rules are a bit more relaxed, I was even told I could color my hair with an all natural product (I haven't done that) Im curious how long do you keep the cap on after the infusion? and what kind of chemo are you getting??
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Hi
I am almost 4 months out from last chemo, and shedding is getting worse. In the last week, the morning when I go to carefully comb my long hair, I find a knot of hair clumped together in what we call a rats nest. Finding this mass of hair in a clump is worse than finding shed hair here and there. I think maybe I am stressing during sleep but do not know how to avoid doing that. Any suggestions would be welcome.0 -
Windward - would it help to loosely braid your hair when you go to bed?
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windward i have been using a silk pillowcase and it seems to work, no knots
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windward - I second the silk pillowcase suggestion or loose braid suggestion. I have short hair now during chemo so no knotting going on but I have been using a silk pillowcase and it seems very gentle. I had long below shoulder hair before a pre-surgery cut and I used to wear it loosely braided or in a loose bun to keep it from tangling at night. Good luck - I am sure that is super stressful!
Cody - awesome news on the hair growth! Based on the pics I have taken throughout I would say mine has grown on TC too although not sure by how much.
SacCat - I always had to have my hair thinned too so maybe that is what is helping since I have not cut it or thinned it out since February - I am just hoping and praying it continues to hang in there. I keep shedding but it has been not so noticeable to others at this point.
Runner - I am sorry you are struggling. I just had TC3 yesterday and it is definitely hitting me faster and harder than 1 or 2 did - not a fan of that for sure. I hope things improve and you can get back into your usual swing of work and life soon!
From the workout discussion - I have been exercising as well, I just try and cool down as soon as I can and I do workout in my cool basement or at the air conditioned gym so I am sure that helps with my head temp. I do get outside for activities a lot though but my skin is super sun sensitive while on chemo and my skin has been reacting to most sunscreens since on chemo so most of the time I try and stick to shady trails/areas to avoid the sun complications. Hoping that passes soon too!
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I had my first treatment today! I was super easy, and even tonight, I feel like myself. My doctor told me usually sickness sets in day 3-10. Just staying positive that its not going to happen!
I cold capped today, and to be honest I'm skeptical. I'm not sure if we did it right. It was very easy, and my whole body was never cold. I just had a cold head ache. When I was done for the day (I started at 8:45am and ended at 5:15 pm) my head did not really feel that cold. It was definitely numb, but never like tingly. It felt more like Novocain effects. I guess I may have had false expectations. My head heated the caps rather quickly... and even though I switched them every 15 min (per my cap nurse's advice)... they were still between 30-50 degrees when I took them off. When I put them on each time they were between -50 and -30.
I feel like I followed directions, but it was just different than expected.
Anyone else feel this way?
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sac cat, my best guess is the caps are worn until the major part of the drug's 1st half life has circulated and is gone. It takes 5 half life's for a drug to be considered out of your system. Maybe the drug is so diluted after the initial 4 hours it has less effect on the hair follicle. I'm just guessing here.
Sarah, thanks for your encouraging words. I'm slowly coming back. I think I'm just emotionally exhausted. I haven't been able to run much since my 3rd chemo so that has been a source of frustration. That's a big part of my social life.
Here's a funny pic I saw today and my first thought was that this is me, pre and post chemo. It made me laugh! It's exactly how I feel!
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Yesterday my nurse at radiology and my RO both said "so were you on taxol" with confused faces. I said "no, I was on TC" and my RO said while waving her hand in a circular motion "but your hair..." I said "I saved it by cold capping" she said she had never heard of anything like that and that was just amazing. I explained it to her and also explained that I had lost at least 60% of my hair. She did an "ohhhh ok" sigh. But she still was kinda blown away.
Now in going to go wash all 100 hairs hen brush all 80 that are left after that. But at least it's not zero right?! When I put my hair into a bun for the first time today it looked pathetic like a mini man bun. I saw one last night and it cracked me up which gave my my inspiration for mini bun today. I mean if joe doe can do it....
Last night
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Phaila, It is so cute what your son wrote. It made me so emotional just to see it and made me cry. Is it only me or you girls, also so emotional lately?Is ti bcs of drags they give us ?
My youngest son is 11 and he is also so worried. Yesterday he looked at me and said: Mom, you not that bold lady I though you will be ... Well, I still have 7 more Taxols to go and not sure if caps will work for sure. But so far, I am grateful that I still have hair after a month of chemo.... Hope it will be this way still. I just had my weekly wash and have a lot of hair coming out but not so much more then I believe usually happens after one week not washing hair..I used to wash them every day so hard to compare...
Also, Phaila, why did your dr. said You on Taxol? Is it because it is something more gentle on the hair ? I read it is still 98% hair loss without caps anyway.
Hugs,
V
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phalia I was wondering how you were doing, how was your last chemo? the shedding still bad? I am a week behind you in treatment and Ive had similar results as you
victoryk I too am extremely emotional, I cry over everything
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