Cold Caps Users Past and Present, to Save Hair
Comments
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warrior woman- thanks for the reply! I am ready for my hair to start growing back and get rid of the grey!!! When did you start to notice regrowth? Congrats on the haircut!!
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raindew, I ordered directly from PCC. I gave myself 2 weeks to ensure I had them in time for chemo. If you do choose chemo, I highly recommend the caps.
Good luck!
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hey ladies- I had chemo 3 today. Sooooo much shedding today! Most other days have been shedding, but not at this quantity. Is this normal for cap days?
As I read, I see people having shedding for up to 4 months PFC, and sometimes it's worse than chemo shedding. I'll be bald by then. For reals. How many hairs do you think you're shedding on a daily basis?
I'm going to post my pre chemo hair and my hair this morning.
1st pic was 1st chemo. 2nd pic was this morning.
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wyomama- your hair looks great to me. even if the shedding seems like a lot to you, it probably isn't even noticable to others. I just had my first chemo 10 days ago, so no shedding for me yet. But every time I lose a single hair, I get nervous. *sigh*raindew- my caps were sent to me the next day after ordering, but that depends on how busy they are. you can contact them in advance and let them know your start date. you choose the shipping method. if needed, they can be shipped overnight. I chose the 3 day shipping, so a week was plenty of time for me.
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wyomama- your hair looks great!
Raindew- def. Order the caps! I got mine within a few days of ordering them
Kazzy- I also have hair sliding down. Seems normal to me! We have so much hairs on our head that the 5-10 that may slide down seems like a lot but it isn't
I have a question for everyone- how long does it take for the body hair to fall out?
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2 boys - My hair probably started growing back before chemo ended but became most noticeable very shortly after. Within about a month I did not have to worry about my scalp showing. Now it is really coming in and I suspect over the months to come it will get rather wild.
wyomama - You are going through the "caps worked for others but won't work for me" stage. You're exactly where most are at this point and yes, I shed more on capping days. Remember, your hair will be thinner when you're done and it will take time for the regrowth to catch up. However, you won't need a wig, scarf or skull cap. I suck at tying scarves anyway.
RainDew - As terrified as I was, I am very glad I did chemo. It's over and I can live my life knowing I have done all I can to reduce my risk of recurrence. This is my story. Cap shipment depends upon shipping method. They can be sent in a day or two but that is more expensive than ground shipping.
Sunshine - Hold tight! I know what this waiting and watching stage feels like.
Dlove - I lost body hair fairly early. I noticed it on the soap bar after chemo 1 when I showered. It was great! No shaving or waxing for months. Now it is starting to come back and I am out of the habit of shaving everyday as I had. I'm heading to the gym now with hairy legs. Ugh!
Hang in there Cappers. You will get through this.
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thanks Florida, dlove, warrior,
Really appreciate the quick thoughts!
I seem to be stuck in a never ending cycle of 'just order one more test' to help make a decision - my MO and I as both kind of paralyzed (low Oncotype, but in my 30s). I am a little worried that if this last test suggests go for it, I will have 2 days to prepare...so am considering a pre-emptive order.
Thanks ladies! If we do this, sure I will have a hundred more questions.
Rain
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Raindew - you can put starting chemo off a week while you get organized. I did.
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Hi Ladies,
I've been reading this thread for weeks in anticipation of using cold caps once I finally found out for sure that I was doing chemo and what regimen. At first I was hoping to have TC, but after I had a positive node it changed to ACT. Now, tell me if I'm crazy for even attempting to be successful with this regimen:
AC x 4 (2 weeks apart), then Taxol x 12(!), every week. This means 16 rounds with the caps. I'm gonna try it for sure, just ordered from PCC, but I hope I can make it through that many sessions.
Any advice or caveats?
Thanks!
Kelly
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hi Kelly. I have a dose dense protocol of ACT AC every two weeks x 4 followed by taxol every other week x 4. I just finished my last AC treatment last week so I am officially half way done.
I still have hair! Much to my surprise though I'm not fully confident it'll hold for the duration. I am thin to be sure. In front on my ears is gone and my part is wider than it was. It doesn't help that I've got large root outgrowth and without styling products or treatments it is far from pretty. But it's significant enough coverage that a stranger on the street would never know what I was going through.
I've made friends and family swear to tell me if I reach a point where it looks pathetic and desperate. We are not there yet.
Well see what the next 50 days holds but so far so good. 50 days into treatment and my hair should have been gone by day 25 or so. Happy with my decision to use cold caps.
Best wishes as you move forward. As for advice or caveats? I am taking biosil and biotin supplements. I have also tried recently to extend duration of caps over the recommended 4 1/2 hrs after infusion and wear a cap on off nights maybe once or twice a week for 45 minutes or so.
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Kelly - I did 12 rounds of weekly Taxol. My thought going in was "oh no, my helpers have 12 chances to make a mistake"! But my helpers were awesome and there were no problems. I had two things in my favor, simply because of where I live - a wonderful Penguin rep, who did an in-my-home session with my helpers on how to do the caps (and who was available if one of my helpers couldn't make it to a session, which happened), and a medical freezer so I didn't have to schlep dry ice.
Anyway, I can tell you that the caps worked perfectly for me on weekly taxol - I had virtually no shedding during or after chemo. If you can get through the AC, you should be just fine on the taxol.
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Just thought I'd check in with everyone here, including those of you who are considering trying out the caps. I used the caps starting August 2013 and finished up my chemo in December 2013. It's now been 6 months since I finished with the caps. I am happy to report that they worked like a charm. I lost nearly half my hair but I maintained enough that it just looked like my hair had thinned out a bit. No one could tell I was going through chemo unless I told them.
I stopped using the Penguin protocols fairly soon after chemo was done. I got a haircut about two months after my last chemo and that made a world of difference in preventing more hair loss. I was getting a lot of tangles in my long hair and cutting off those damaged ends really helped my hair from coming out in the comb/brush. I also started using regular shampoo and conditioner about a month after chemo. It didn't seem to cause more hair to fall out and I've been washing it normally since with no issues. Now I've got all these little curly Shirley Temple hairs all around my ears, the nape of my neck and my forehead. Those were the spots that the caps seemed to not be as tight on and so I lost most of my hair there. Those hairs are about two inches long now. When it comes back, it comes back pretty quick! Just wanted to encourage the new to chemo to hang in there with the caps. They do work in most cases and the cost and trouble of it will seem worth it when all is said and done. Good luck!
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I just finished chemo 3 on weds. I'm shedding upwards of 200 hairs all of a sudden. Nothing in clumps, it's just dozens of strands everytime I move my head. When I combed my hair I counted over 180. I've pulled out strays all day, and it's never less than 8 or so hairs.
Please tell me this is normal. I haven't done anything different that I know of. I often have to keep it in a loose scrunchy because of work, but I follow all the rules PCC lists. what can I do? There just doesn't seem to be any way I will have enough hair for 3 more treatments. 4 if I include the fact that Wednesday's chemo has nothing to do with this shedding
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wyomama - I think you are just experiencing some extra shedding due to the recent chemo, I had that happen. It will settle down shortly. Try to remember that you started out with about 100,000 strands of hair on your head, we all have at least that, and some of us have much more. Put today's loss of 200 hairs in context with that number and it is not something to worry too much about. Deep breath, and relax
You will probably be fine. (((hugs)))0 -
thanks hortense
I'm trying to be calm and cool. There's just so darn many things that cause stress right now.
I'm just going to breathe.
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wyomama, I agree with Hortense. I think you will be fine and are just in a high-shed period.
Yes, just breathe and remember that you can't control everything in life...cancer creates so much stress because it slaps us with that reality hard! You can and WILL make it through this! Life on the other side of cancer treatment is indeed wonderful. You will get there...this is just a really big detour you have to follow - but it is temporary.
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wyomama - I have so much darn hair growing in that I look like a beast. BUT, I was exactly where you were and survived just fine. Yes my hair was very thin but I never needed a wig, scarf, hat or anything else. Everyone goes through the freak out stage and I did too.
I am reposting this lovely photo that is the result of just one washing.
Like a weirdo, I saved my hair in baggies. Here's one of my daily bags. It made for great nesting material for the birds this spring.
All of this came from my head in one wash or one day and I made it through with hair. I am very glad I used the caps and after the stressful period is over you will be too.
This last photo is a repost of my before and after shots. See - I have hair. I lost load of hair and I still have hair.
Hang in there!
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looking fabulous Warrior!!!!
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Great pics WW - they really show that you can lose a ton of hair and still look fabulous - one would never know!
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For those of you going through the process right now...hang in there. The caps work for most of the ladies and everyone's shedding is a little different. I finished chemo in Jan 2013 so I am 18 mos PFC. I have trimmed the frizzy dry ends periodically and my normal 5 inch. down my back is shoulder length. The new growth is soft and healthy and curly. The hair loss around the ears, nape of neck and side burns is all back. My normal thick hair is thickening again to 75 % maybe of it's natural thickness. I am thrilled to have used the caps. I shed, panicked, cried and siged relief. First pic is last day of chemo. Blue and white pic is day one of chemo. Hang in there.
Hang in there!
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My goodness - you ladies give me so much hope! You look fabulous. I hope I have as much luck with the ACT regimen.
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kpmacmill - Please remember ACT is tough. Many women on here made it through but some did not. It's worth a try.
Schoolmom- When you say, "My normal thick hair is thickening again to 75 % maybe of it's natural thickness." does that mean that all the hair doesn't come back? I am really hoping to have 100% of my hair back.
Does anyone know what usually happens when hair grows back in? Does all of our hair come back or just some of it? I really want the thickness I had before.
BTW, I had a recurrence scare last week. I go for surgery # 5 this week. They'll double check but I think it was just a scare....and suddenly hair doesn't matter.
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WW, so sorry to hear about the recurrence scare. I have had several of those, all turned out to be fatty benign cysts in the breasts. I also had a spot on my liver that I had to have CAT scans for; turned out to be benign. Hoping you have the same experience as me - benign!
Regarding hair regrowth, I feel my hair is actually THICKER. This probably is because the regrowth has some wave, so now my hair has some body as opposed to being completely fine and straight. So in my experience, it appears all of my hair has grown back in. I am 2 years PFC. Feels good to say that!
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I meant 75% grown back. Still some thin areas. New hair is thick and tight wave. I think in a few months it will feel normal. I may be under estimating ...maybe 85 %...
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I am a few years out and my hair is healthier and thicker than before chemo. Remember that taxotere can cause permanent hair loss. I know quite a few women that did not use caps and they never got a full head of hair back. I would imagine that some people could have some level of permanent hair loss even with the caps but imagine if they did not use the caps? I can tell that the hair on legs and under arms is less than before chemo. Glad I used the caps to save every possible hair on my head!!!0 -
I am having another freak out moment. I just had round 3 of TC last Tuesday and today my head is itching like crazy and actually hurting in a few places. I know the people that didn't use caps and lost their hair say it hurts before it falls out. I know the itching is common, that was my last freak out a couple weeks ago but the hurting is new. Anyone else have this? I'm still shedding too but it sounds like that has been the norm for most cappers. Any reassurance would be greatly appreciated. Yikes!!!! I have one more round in 2 weeks. I'm so ready to be done.
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Missyjean the soreness is normal in my opinion. My scalp hurt quite often in between treatments. My suspicion is it was indeed that I was losing hair - shedding SOME hair. But I never lost all of it. I can only imagine how sore my scalp would have been if I hadn't done the caps.
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dancetrancer - thank you, I appreciate your feedback. I still do have a full head of hair, as in a full covering, it's definitely thinner. I really want to scratch the heck out of it but that probably isn't the greatest idea
. I have a wig and I do wear it occasionally when my hair is looking just too gross in between washes and I have to go out, maybe that is what is making it hurt. 0 -
Missyjean - sorry to hear about your discomfort. I didn't realize that it was ok to wear a wig when using the caps. I was reading the info that PCC sent in advance of receiving the caps, and I saw that it said not to let your head get too warm ever, don't wear hats or scarves (or wigs either I assumed). I was a little bummed because I got an awesome wig on Saturday just in case caps don't work for me, and then I read that and figured I either have to go with the thinning hair or give up on caps and go with the wig. You haven't suffered any ill effects from wearing a wig while still undergoing chemo? I'm so afraid not to follow the directions to the letter because of my difficult regimen, I would be very interested to hear about your experience.
- Kelly
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Missyjean, I'm pretty sure wearing a wig is a big no-no for cold cap users. Better to just have a bad hair day. Very few people even notice!
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