Cold Caps Users Past and Present, to Save Hair
Comments
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its been 30 days since my last AC, i still have a lot of shedding and have lost about 60 % of my hair, it has shed very even but im a bit worried, i have 11 more taxols to do once a week, I know AC is a killer but i made it through, i pray the shedding stops,i dont have to wear a wig for those who dont know me but i do when i go to work, ive heard your hair starts growing back on taxol so im hoping that is the case, im not sure how long after AC the shedding starts to slow down? for all you new girls i wish you the best of luck!!!!
love chey
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hi cheyenna! I've been thinking about you. I'm sorry your hair didn't do as well as you had hoped. Hooray for being done with the AC. I hope you do well with the taxol. I'm sure you look beautiful no matter what. Lot's of hugs to you!!
Good luck with the elasto gels Peggy and Shawnlo - I am soo pulling for you!!! Peggy - your kids sound wonderful. How great for you.
I am now more than 6 weeks past my last chemo and my follicles still seem a little weak after I wash my hair. There is a little more shedding then I would like but I still have a full head of hair. It's a little dry still but getting better. Now if only I could color it I would be all set. I just looked in the mirror and my eyebrows are just about all the way back (they started to seriously thin right after chemo ended). Never lost my lashes.
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Drim: I'm 2 months out from my final chemo (6/21) and this week was the first I felt I had normal shedding. My hair has been re-growing throughout chemo, so I have little 1-2" hairs sprouting all over my head alongside my long hair. I'm going to be very fuzzy looking without some spray or gel to keep things in place :-) My eyebrows are nearly back to normal and my hair "down under" is making a comeback too. I have peach fuzz all over my arms -- my eyebrows and arm hair took a hit during that last chemo. I lost about 50% of my lashes, but I only noticed last week when I saw the new ones growing in.
This week is my final last radiation boost (Thursday) and I can't wait. I've spent my entire spring and summer in this battle and I can't wait to use the long Labor Day weekend to celebrate being free of it! Next up, Tamoxifen.
Good luck to everybody with the caps! Cheyenna, I am thinking of you and pulling for you. I'm sorry you've shed more than you (and we) hoped but you are taking care of your follicles long-term and hopefully where you've shed will start to re-grow even throughout the next part of treatment. To everybody using the Elast-Gel caps, I'm pulling for you too and hoping for a great outcome!
Best,
Susan
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Hi Peggy,
Adjuvant.com is a serious, well-researched tool. I'm not yet sure exactly how many variables can be plugged in, and of course, it's "just" statistical analysis, so not perfect. My onc explained that b/c my parameters are generally put me at the higher risk end of the scale, adjuvant may well be undercalculating the usefulness of different treatments.... one regime for all kinds of tumors?!? Huh?? Maybe the nurse meant tumors like yours?? I mean, for some stages and grades there are indeed very proven combinations, but I've never heard of a one-size-fits-all.
Sounds like I need to look into the cold caps on my own, and not wait for doctor. Wonder if insurance covers? Or if I can use my flex account...hmmmm. thanks for all the food for thought!
BrightEyes
P.S. Senna Tea helps a lot w/ constipation. One cup in the evening, brewed per instructions.
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Hello Everyone!
Good Luck to all the new comers. Cheyenne-I saw your picture and your hair still looks good-you can tell it thinned but it really didn't look bad to me. Hang in there-it will grow back in quicker and fill in those thinned spots alot earlier than not using the caps. Just think -you got thru AC with no wig and taxol will be smaller doses so maybe it won't thin to much more. You should wear them in between (out of the freezer) for a few hours now and than to stimulate your hair to grow. I have been hearing great success with that!! Maybe by the time your done with taxol your hair will be filling i, I think it will!. Hang in there!!! You can do it!!
shawnlo-good luck with the elasto-gel caps. Let us know how they are working. I haven't heard about those to much.
Enjoy the last days of summer everyone!! It goes by to fast!
Geralyn
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Hello Everyone!
Good Luck to all the new comers. Cheyenne-I saw your picture and your hair still looks good-you can tell it thinned but it really didn't look bad to me. Hang in there-it will grow back in quicker and fill in those thinned spots alot earlier than not using the caps. Just think -you got thru AC with no wig and taxol will be smaller doses so maybe it won't thin to much more. You should wear them in between (out of the freezer) for a few hours now and than to stimulate your hair to grow. I have been hearing great success with that!! Maybe by the time your done with taxol your hair will be filling i, I think it will!. Hang in there!!! You can do it!!
shawnlo-good luck with the elasto-gel caps. Let us know how they are working. I haven't heard about those to much.
Enjoy the last days of summer everyone!! It goes by to fast!
Geralyn
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I start chemo tomorrow and think I have what I need. I'm totally worn out from all of the errands I had to run. Hope I can sleep, need to be up early to get the coolers ready. Dry Ice is in one right now to keep it colder, distribute amongst 3 in am.
Wish me luck, I'll report back of course!
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Good luck Michcon! We are pulling for you!
Cheyenna, sorry you had more shedding than hoped
I've heard ACT is really tough all around, so glad you are done with the AC and hoping the T is easier for you! I hope your hair starts growing back soon!Drimand Sebm- I am someshere between you two in terms of when I finished (7/9) and my results are similar to yours. The shedding has finally slowed down to what I think is normal again, but then again, I am still not washing everyday! Not sure I will go back to that, honestly. But I have been washing more oftn then during shemo. Also still blow drying on warm, havn'e tmoved up to hot yet, though I think my hair could take it. Just counting down the days til I can color it again, but will probably wait til October on that, at least. But, I feel like I am otherwsie pretty much back to normal on the hair front. Really, even after all the shedding, I don't think you can tell at all on me. Yay!
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Michcon: Really praying that all goes well tomorrow and it will! i will be right behind you! Hope that you were able to get a hold of your doctor..
Golfergirl: You are awesome! Thanks again for all the info!
Be Blessed!
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Michcon: good luck tomorrow! My thoughts will be with you!
Golfergirl: yes, I alternate between braving tepid and lukewarm water :-) but still am washing every 3rd day or so, depending on how sweaty I am. I'm still keeping up my active schedule from chemo-days, but now that I'm going through radiation and can't wear any deodorant at all, and having sweaty hair on hot days, well...a little more frequent washing is warranted. Three days to go and I'm done with radiation. I'm pretty sure I'm gonna fall apart from relief and stress, both, as soon as I hear the last "click" of the machine...I've been traveling this long road since January, discovering the lump...seems like a daily count ever since. No more counting as of Thursday. Btw, I just completed my final golf lesson and my present to myself is a set of new clubs.
Hugs to everyone!
Susan
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Chey~ Dont be discouraged! Your going to do amazing on the Taxol! It's not near as harsh as the AC. Your hair will make it through this :0) Your an inspiration and a warrior!! Taxol weekly is a dose dense chemo and is known to be lighter on your hair and your body. I wish I was able to make it through ALL 12 treatments. Unfortunately, my toxicity levels seemed to peak out at 7 treatments. I had an allergic reaction the first treatment in the form of a rash and each week it progressed. At week 3 the neuropathy began and by week 7 the combination of both se's peaked & my Onc. called it quits and now I'm just continuing on the Herceptin. I'm by all means NOT the norm with Taxol! I had huge success with my hair. I had light shedding...none that anyone else could visibly see. You truly ARE an inspiration...KEEP IT UP! You'll be done before you know it! You have lots of prayers and hugs out here!
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I got through the first Chemo with cold caps. It was quite a production, so wish I was doing it where they have freezers. The dry ice and coolers are a pain, but it works. Thank God for Geralyn's husband Matt. No way my friends could have put these on me without him.
The first cap was the one that made reality hit, I cried. Not all out crying, just that emotional overwhelming kinds of tears down the face. I cried a few more times as the cap goes on, that's when it's the most cold. If you can get through the first few minutes, then it's fine. Just when you are feeling comfortable and alright, it's time to put a new one on. So, don't count on any relaxing or sleeping during chemo like the people around you not doing caps. ha.
Definitely bring a timer, I lost track of how many caps and time of day, just relying on the Timer to tick down and go off.
So, 1 down, 5 more to go. I hope I can do it. It was very overwhelming. Chemo meds were a total 2nd thought. Feeling alright this morning after getting some sleep. Nurses say I won't feel sick until the weekend. Great holiday weekend for me huh?
Let's hope this is all worth it to keep my hair!
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Michcon: So glad the first time is over! yeah! I am right behind you in 2 days. Hope you are not feeling too bad this weekend. You may not cuz everyone is different! Think positive and pray!
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Hi all! It's good to see so many people sharing their tips on the cold cap therapy. My friend has finished with her chemo and would like to pass on her caps. Does anyone live within a one hour drive of Camarillo? Her husband is willing to drive an hour to pass on the caps.
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hi everyone! i'm 16 days out of my first TC, and i started to shed from yesterday. i didn't acutally count pieces of hair i shed, but maybe around a 100?! is that normal? but i hear you shed handful without using the caps, so i think the caps are working!
i'm only shampooing once in 5 days, i tried to make that once a week at first, but i couldn't tolerate the itching and the loads of dandruff!! did anyone have the same problem?? maybe this is because i'm used to washing my hair daily, and my hair is thick... i'm using organic shampoo that i bought at whole foods, but should i use a special brand???
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Michcan - congrats on getting through the first treatment! That was the toughest for me in terms of the caps. I almost gave up but by the time I got to the second treatment and still had hair when other people who started the same day as me were losing theirs, I was willing to deal with the work to keep it!
makingway- so glad your friend is done. I hope she had great success with the caps!
sebm9 - I haven't been golfing this year and I have to say I really, really miss it! I'm jealous that you've been out playing. But between treatments and work and the HOT HOT summer we've been having, I just haven't been able to get myself to go. I can't take the heat on top of the hot flashes I'm getting! But next year, for sure.
sayuri- I washed my hair every Monday and Thursday morning during treatment. I rinsed my hair every day with water, but only used shampoo on Mondays and Thursdays. And I used a spray on conditioner (Ojon revitalizing mist) in between washes to help the ends. I think so long as the shampoo you are using is sulfate-free, its probably ok. At least that is what I used. Good luck!
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I'm 2 days out of first chemo and wondering if anyone had not only itching in their head, but achey? My scalp seems to hurt. Hope that's not a sign of the hair wanting to fall out.
I don't know if I can keep up the dry ice and coolers thing. Not having a husband is hard since I have to rely on friends. They can show up to chemo, but having them come to your house the night before and day of to help load coolers is asking a lot. Why can't all hospitals have freezers? Darn FDA for not approving these cold caps yet.
Emster - Good luck on your first round!
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Hi Sayuri, I began shedding about then too (day 16). Body hair went first (especially "down under"), and my head hair shed all over throughout chemo. First chemo was the hardest on it, and it didn't stop shedding until about a week ago (I'm 2 months out from chemo), but gently. It's normal to lose about 100 hairs/day. I have thick long hair and am a heavy shedder anyway, but to make myself feel better I kept a baggie in the bathroom and collected the shed hair throughout chemo. Whenever I felt discouraged or scared, all I had to do was stand at the mirror and hold the baggie next to my head of hair and realize how much hair I had.
My dandruffy look was definitely worst at the start, 2-4th weeks. Then it seemed to calm down, and I actually almost got used to washing hair once/week. I'm still only washing 2-3 times, gently, and still in tepid water, but I think I might not go back to a daily wash. A daily rinse seems to do just fine except on super-hot or sweaty days. Just try to be gentle when washing the hair and try not to pull the roots, they're really trying to hang in and will pull out easily.
My eyebrows hung in until about the 4th chemo then dwindled to near-nothingness, but they're back to normal now. I used eyebrow pencil to "thicken" the look in the interim, nobody noticed.
Today was my last radiation treatment and I am still meeting people at work who have no idea that I went through any of this!
Let us know! I can't wait til you all are at where I am today, DONE with my chemo and rads! Tomorrow will be the first day I'm not counting anything, since the day I discovered the lump.
Big hugs to everyone,
Susan
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hi, for those having chemo tuesday, get your dry ice paid for early, we checked and all my places say they run out over this holiday weekend, so they will put 40 lbs in the back freezer for me, i told them of the whole chemo thing and they wanna make sure i have the ice, just to be on the safe side. 10 more Taxol to go its there but i need to where a wig beings it is so thin and i do look like a cancer girl,lol My sister did a hell of a job i think it was the stress that did me in, im still hopeful though
love chey
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michcon: Thank you. My hair feels so yucky since I have not washed it and I haven' even started chemo yet! Hope you are doing well. Wish we were doing it at the same place so you didn't have to worry about dry ice and coolers. Let me know if I can help you at all. I don't mind coming out to help you with the caps. By your second treatment I should be feeling good so it would not be a problem.Hope you are doing well.
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GolferGirl,
thanks for the tip! so i guess it's ok to wash my hair every 4-5 days! that'll feel much better than once a week! i washed my hair today, and noticed more shedding than ever! i think i shed like 500 this time!! but i still have alot of hair left, so i'll try to be as gentle as possible!
Hi Susan,
Congratulations on your last radiation!! Yay!! I'm so happy that your hair still looks so good!!
i first noticed shedding "down under" too! today is day 17, and i shed alot more! i think i rubbed my scalp too much trying to get rid of the dandruff! i'll try to be more gentle with my scalp and the hair trying to hang in! hope my dandruff will get better soon...
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Congrats Susan on being done with Rads! No more counting down! YAY!!! You did it...chemo & rads are over! YOU ROCK~ Chey...You can do it too! Stay encouraged...we're ALL thinking about you and sending hugs your way! To all our sister PCCr's...it's WORTH every "brain freeze", weekly cold hair wash, and the hour plus it takes to gently comb through our hair, counting each strand for any additional shedding. They do work and are successful!
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cheyenna - thanks for the heads up on ordering dry ice now. I have my last chemo on 9/7. I am hopeful that the fever I developed Wednesday and was put on antibiotics for won't mess up my schedule. The onc nurse practitioner said that I "might" need a neulasta shot after this chemo session. It will depend on the bloodwork.
I had about 3" of raggy ends removed last Friday because I had an event to attend on Sunday and I couldn't stand my hair. My hair is slightly past my shoulders now so I am not worried about the PCC. One more brain freeze to go.
Colleen
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I am trying to be able to use the cold caps for my upcoming chemo. I live in Hawaii and on our island they have never been tried according to the two chemo infusion centers here. We also have only one place to get dry ice. I have a few questions mainly about hair maintenance during treatment. I see all the info on when to wash, how to wash, what to use...my question is I have a lot of straight very fine hair that I always blow dry and put a curling iron to. If I don't it just hangs limp. After 2-3 days it looks stringy. Anybody else with this type of hair? If so,any tips on "styling". Also how long does it take to receive the cold caps? I really want to do this and hope I can.
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Hi Everyone! (I am an Elasto-Gel Cap User)
My treatment: AC x 4 (every other week), then Taxol x 12 (weekly) then surgery, then radiation.
Congratulations to all of you who are done!!!! and those starting. I think of you all often, though I haven't been on here for a while. Friday is my second treatment. I was terribly nauseated until about four days ago. None of the medications seemed to help enough. They gave me Emend and Ondansetron and Lorazepam. I know I made myself 'sick' before I ever got to the doctor's office for the chemo, and I am thinking this next time (Friday) I will be better. The nausea is my biggest fear.
The treatment itself was a piece of cake other than the rolling nausea. At home, I was fine on the day of the chemo and the next, tird for a few after tha, but not bad. I think if the nausea was controlled, I would have done much better. Of course, a spider had to bite me, but I called the doctor and am on anitbiotics...and it is healing fast!!
Just don't let these types of 'normally' little things get out of hand -- the spider bite, it turned red and bloody and a stripe up my arm in less than 24 hours...normally, it wouldn't have affected me at all. lol 
I am washing my hair 2-3 times a week. It doesn't seem I have lost any hair or enough to notice yet, after the first chemo 12 days ago, though I think the ends are more brittle and thin looking. I do feel my hair and skin are dryer than normal, but I am not absolutely sure. I am a BIG water drinker, but find it hard to drink enough to keep myself hydrated as much as I used to. But, I am forcing myself to keep it up.
So, as of Day 13, including the day of chemo, I have hair, everywhere still.
kalaoamom I have fine, thin hair, too....if I don't wash it every single day! it looks like I oiled it to my head. Now, it seems to look like a poor neglected stuffed animal...it seems like my normal oiliness is gone, and the body it had, too. It looks flat and dull, except for the day I wash it, though others tell me it looks fine. (I am sure I/we are just super-aware of how our hair looks since it is possible we could lose it.) I guess it is the chemo and lack of daily washing, which I hacve done always. Now, I am afraid to wash it more than 2-3 times a week. It was nice and full looking as long as I kept it washed....I joke that I have 22 hour hair, because I MUST wash it every day or it starts to look limp and oily. It was hard for me to was it so little, I 'feel' like it is dirty, but, I am determined to follow the advice of the women here who have been through all of this. I SO want to prove my doctor wrong....well, at least I want to prove that these cold caps DO WORK!!! (So far, so good.) I will very likely wash only once or twice a week from here on out, or try daily rinsing to see how that does. I so want to tug on kmy hair to see if it still holding tight, and at the same time afraid to touch it at all!
I have always combrd my hair caredully, but now it seems to be such a chore, and every hair seems so precious. I have not lost any hair anywhere yet.....and maybe I will be one of the rare ones who don't, but I don't expect that. My doctor says hair loss is expected to be 100%.
I also used frozen peas for my fingers, lol, even though I forgot until halfway through my first chemo. My doctor told me that the AC isn't as hard on the nails as the Taxol is, but I want to use them anyway.
I was told by my dr. that the chemo would be out of my body within 24 hours....but, that wasn't true....and makes me doubt what he is telling me. I had some issues, but not sure this hair/cap forum is the place.
I also read that the Taxol doesn't work for all breast cancer. That, in some cases the increase in mortality is only .3 - .7 % If my research on this is strong enough, I will be passing on the Taxol. Does anyone have any thoughts on this? I want to be as educated as possible on this without doing anymiore than I need to do.
I just want to thank everyone for taking their time to come here and post....you are all great!
Peggy
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Oh!! I wanted to say......I felt like pulling te cold cap off and just giving up the first time....I was so nauseated....but am I GLAD I didn't. I took 2 Iboprofen about 45-60 minutes befire I started my cold caps, and I did not get a headache, at all.
I bought mole skin, but, on a whim, I also bought some shoe insoles, the cheap white ones with tiny holes in them. I cut them to the shape of my hairline and used them on my forehead. The only time I had any trouble was once when that slipped down and I got an immediate brain freeze. We repositioned the insole and the brain freeze went away in just 2-3 seconds. Not problem at all....I used square cosmetic pads for my ears...and I folded my ears down so they wouldn't be pressed against my hair above my ears, since I read many women lose hair in that spot. My girls wrapped my Elasto-Gel Caps with Ace bandages, and we all think probably much tighter than we needed to, so this Friday we will wrap a little looser.
Also, we had to take the caps out about 5 minutes early to knead them so the fit against the top of my head, since they were flat on the bottom from sitting in the cooler. This time I have some small Halloween skulls in them so the shape of the cap is more like the shape of my head.
I will also lay them on their sides to prevent any flattening of the top of the cap, so there is less shaping before they are put on my head. My girls and son were all great, as was my friend....she is a reall trooper....always there when needed...we have known each other since elementary school. Here name is Kathy. My son is Jim, the girls are Billi, Peggy, Deanna, and Amanda. they call themselves my Pink Crew! 
SO.....girls! Keep the faith, believe in yourself and all of us who believe in YOU....and take this journey just a step at a time.....even if that step takes you into the next minute. Remember, when times are tough that I am thinking of all of you and I know all the rest of us are thiniking of each other.
We are a team, and we are also the cheerleaders!
All my best, and all my love,
Peggy
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Hi girls! Just got my second round of chemo (TC) yesterday! So far I'm feeling fine.
But I was so devastated to find bald spots above my ears!! Especially above my left ear, I have almost no hair there! I didn't realize until 2 days ago, because the spot is covered by my side hair. From outside, you can't tell that I'm balding, but still it came as a big shock since I was hoping to keep as much hair as possible! I hope my shedding decreases, but as of day 22 out of first chemo, my hair is still shading alot!!
This time I tried to fasten the two blak straps as tigtly as possible around the nape and the side of my head (above the ears). Hope I won't continue to bald like this!! Does the shedding become worse? Or does it decrease as you go on? Did anyone have the same kind of problem?!
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Hi Sayuri,
I had the same bald spots above the ears around the same time as yours (right after Tx 2) and I too panicked that it was an omen for more shedding. Do you have thick hair? I attributed the hair loss there to the fact that my thick hair was covering the areas and preventing the cold from reaching there.
The good news is that those are the only areas were I had major loss, and the hair started growing back during chemo. I'd say by chemo # 4 hair had completely covered both spots. In fact, I used those areas as my baseline to assess hair regrowth. I now have about 2 inches of hair there (that's almost 2 months post-chemo). Don't worry, those areas are your proof that the caps are working! Every time I look there I realize that my whole head could have looked like tha and I am so thankful I used these caps.
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Could these bald spots be where your ear is pressed against your head, therefore not allowing the cold to penetrate in that area as we want it to?
I folded the tops of my ears over and covered them with small square cosmetic pads before I put on the caps.
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Hi Kalaomom, Please email me offline (sebm9@earthlink.net) and I can send you a
summary of "tips" for Penguin Cold Caps including some hair care tips (and including
tips you can begin now, before you begin chemo, to help you out!).
Signed,
Susan (Kona is my home away from home!)
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