Cold Caps Users Past and Present, to Save Hair
Comments
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Texas, are you using the black band around your head?
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I am and a gold one. And my DH is using the cold bands to get the nape of my neck. Any advice would be appreciated.
I can send a pic of me in my cap to see if that helps.
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For those about to start capping, I suggest that you save one or two shampoos worth of normally shed hairs in separate baggies to be able to compare to what comes out during treatment. I found that doing so helped me realize that after the big shed around the second treatment, I actually was not shedding much more than I had shed pre-chemo.
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Texas,
I used an additional strap we had (kinda like an ace bandage, but not quite as elastic, so it had more "force") to pull the cap down closer on my crown area (I didn't purchase the extra bands from Penguin b/c I was trying to save $). Not sure if this idea will help you or not. Here is a pic where you can see how I wrapped it across the top of my head and under my chin to secure it. You probably are already doing something like this, but sharing, just in case!
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Thanks for all the great advice. I am nervous but not ready to give up on this so I am going to work with my DH to incorporate some of these changes for round 3.
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Hi Ladies -
My Oncotype results have been delayed but my oncologist did tell me my chemo would most likely be Cytoxan & Taxotere once every three weeks for four sessions. Based upon the information you've provided, I may well be a good cold cap candidate and nail icer.
I've read your comments about hair washing. About a year ago, simply from aging, I noticed my hair was dry. Friends told me to limit washing to 2xs per week and so after grossing out I gave it a try. It worked like a charm! Within a short time my hair was noticeably shinier and I had more time in the mornings. My hair does not get a greasy as it had in the past. However, when I do wash it, significantly more hair comes out. I attribute this to less shedding on days I don't wash my hair. And this is without ever having chemo. And so, for those who say you shed more now that you're washing your hair less, I wonder if this is just part of the change in hair care methods rather than chemo.
Anyway, I should know by Friday about chemo so if you have any other advice for me please go for it.
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I am starting to lean toward not bothering with the Cold Caps and I am curious what others think. While I have long hair, the Penguin video states that I cannot color it for 6 mos. post chemo. That means I will have 4-5 inches of grey roots. Yuck. I may just say, "to heck with it" and go bald with the wigs, turbans and skull caps. By the time I would have been able to finally color my hair again, I should have a couple inches of healthy hair growth. I hope. I will ice my nails and greatly appreciate the advice.
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just know that for some women the hair loss is permanent
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I finished my last TC treatment on Dec. 27th. The cold caps were a pain during the infusion, but I kept my hair. I appreciated the fact that no one knew I had cancer and I didn't get those "poor thing" looks. It was worth it for me, but might not be for everyone. I definitely could not have pulled off the scarf look
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Warrior Woman - While I understand that plenty of women use cold caps with success and find the effort worthwhile, I have to add that not using the caps has it's benefits. I found the work involved to be too bothersome while going through tx. I wanted to relax and get through each infusion without the fuss and worry of whether or not they would work. Losing my hair was not a big deal. My husband shaved my head before I lost everything and I had two wigs ready to go. They were fine. I bought mid priced synthetic wigs that were easy to care for. I had a 'work' wig and a more sassy 'weekend' wig. No one knew I was undergoing treatment unless I told them. In fact, I had many complements on my new hairstyle. I teach high school so it was important for me to look healthy and able to manage since I worked throughout tx. At home I went bald or wore hats or scarves. I didn't have to worry about dirty hair between shampoos, bald patches, roots, etc. I was bald during the winter so I wasn't hot wearing the wig. By the summer I had enough hair to go topless. As soon as I had enough hair to style I went with an edgy short cut that got tons of compliments. Now (18 months later) I have hair to my shoulders. Its a little curlier but pretty much the same color. In addition, I spent very little ($400+- total) on the wigs and head coverings. Some insurance will cover the cost of wigs, mine did not. There are also free wigs available through different organizations (ACS etc).
Whatever you decide will be the right decision. You have to weigh the pros and cons of each path and take the path that is right for you.
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For me, using cold caps was absolutely the right decision and well worth the anxiety and expense but I understand that it may not make sense for some women. Warrior woman, I'm glad you found out about cold caps and you have the opportunity to make an informed decision whether to use them. It bothers me that many women are not aware of the cold cap option or find out when they have already started chemo and it is too late.
Let me add that I just passed the 6 month mark post chemo and my hair now looks completely normal. Yes, you will have some really bad hair days while using cold caps but to me, bad hair days were better than no hair days.
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Thank you everyone for your input. The number of people who never regrow hair is few and I'm hairy to begin with. I don't expect that would be the case for me. I appreciate your decision, Janet, as it is precisely what I am thinking. I teach college. It's a fashion show. I'm not one who looks great with short hair but hair grows back. The cost is less of a factor. I think this has more to do with not needing an extra layer of complication to my life. BTW, Janet. I originate from the Philly burbs myself. My surgery was at Penn and I am extremely happy for my decision to go there.
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I'm also from the western Philadelphia suburbs (Chester County) and had my surgery and treatment at Penn.
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JC - Montgomery County and now in NJ. My Onc. surgeon is Dr. Fisher and PS is Dr. Wu. So far so good! Penn is in the top 10 in the country for BC treatment.
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We're fortunate to live in an area that has such good medical facilities. I never appreciated it until I was diagnosed. Good luck with treatment whatever you decide.
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Hi warrior woman, I echo the sentiment that we are glad that you found this site so that you could ask questions and get informed, and decide what is right for you.
The caps are definitely a hassle and expensive. Each chemo session was like a three ring circus. Although we made a fun "penguin party" out of each chemo session and got private rooms, I did enjoy my herceptin-only infusions after that, where I could just sit back and work quietly on my computer.
Having said that, I am SO glad that I chose the caps and I would do it again in a heartbeat.
One thing I wanted to add is that, although it is true that you cant color roots for six months, the hair actually grows more slowly, at least it did for me, during that time. So it isnt as bad as you would expect.
Also there are things like colormark and temporary colorings that are acceptable, there has been a lot of discussions on this board about them.
Whatever you decide- Good luck with chemo and Happy New Year!
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Sciencegal - In other words, there are things I can do to hide the roots? Otherwise I would look hideous with half a head of brown hair and half grey. I'll read back through the posts. That could make a difference for me. Thanks everyone!
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I am almost 3 years PFC and using cold caps.... I am happy with my decision and happy with my hair today. I used Clairol no ammonia no peroxide (semi permanent) on my hair one month after PFC... There are pictures somewhere in this thread:-).... My hairdresser did it for me the first time... I had a friends birthday in February ... Cold water no blow drying ... But hid my roots well! ....since only washing every 3-4 days it lasted 5-6 weeks.
Good luck with your decision.....
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WW, yes there is a temporary hair coloring product called Colormark that's similar to a fat magic marker you can use to touch up your roots. It has to be reapplied each time you wash your hair, but it does a decent job of hiding grey roots. I used it and was pleased with the results. Also, although recommended by Penguin Cold Caps, many women do not wait the full 6 months to color after finishing chemo. A lot depends on how long you continue shedding post chemo. My hairdresser used semipermanent color applied without heat at 3 months PFC because I couldn't stand the grey any longer. My hair survived just fine.
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You're making me reconsider, Ladies. Thank you. In the video it also said wash hair only one time per week but it seems most here washed 2xs a week and that worked well. Am I correct?
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Yes, the video is outdated IMO. I was advised by the Penguin rep to wash every 3 days, except for right around your infusion - then you have to wait 3 days before and after to wash - so a full 6 days of no washing around each infusion. My hair definitely was not pleasant during that time (I wore bandanas to cover it at it's worst moments), but otherwise waiting 3 days to wash was just fine and it looked decent. Never great, b/c I need to blowdry my hair to get body and couldn't do that, but it was fine - just not my normal style. Your hair is drier after the first chemo - really does something to it - so you can go longer without washing it before it looks oily.
I waited the full 6 months to highlight - but that is VERY different from coloring. Highlighting is bleaching the hair - very damaging. I've heard many women on here decide to color their hair with a gentle product prior to the 6 month mark with no adverse outcome.
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Everyone is so helpful. Thank you, Dancetrance. Does the luster return to your hair after chemo? Am I able to wear my hair in a bun or ponytail? (Not during the infusions, of course.) They need to change that video. The video is what led me to decide against the caps and you're really helping me to appreciate the advantages. Thank you very much!
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Warrior - I'm originally from Montgomery county as well and a HUP patient. I work for the HUP Health System, so it was an easy decision for me. Almost everything is covered in my health insurance as long as I stay within the system. Both of your drs are top notch. I hear that Dr Wu is a perfectionist. Perfect for a PS! My doctors: Dr Czerniecki BS, Dr Kovach PS, Dr Gogenini MO, Dr Freedman RO. They were terrific and I highly recommend HUP.
Will you be having chemo at Perlman? If so, they have very nice private suites. If you decide to do the cold caps, you will have your own space and some privacy during tx. They have had a few cold cap users so the nurses are willing to work with the cold cap schedule. The only problem I could imagine is transporting the coolers up to the third floor. It is a busy place so the elevators are packed at times. I think people would accommodate you though.
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I just finished with chemo (TCx6) about three weeks ago. I've lost about half my hair but no one can really tell. I would agree that the caps are a hassle but it's really only one day every three weeks and I didn't find it to be as big a deal as I anticipated. I took two Ativan before every chemo and frankly, I didn't really care that much what was going on after the Ativan kicked in. I had a family member with me each time who took charge of changing out the caps and I just let them handle it completely. The entire experience was an exercise in trust but it worked and I'm glad I did it.
Warrior Woman, I can understand your concern about your roots. I've been using dye or henna to color my hair Lucille Ball red for over 20 years and I haven't been able to dye my hair in several months (basically since I decided to use the caps, which was over 6 months ago). The hair that has been growing out is dark blonde with some natural reddish highlights but it's an obviously different color than the rest of my hair, which is quite long. It's noticeable and my hair has looked pretty dry and frizzy for the last few months but it's really not the end of the world. I've been meaning to try out coloring my hair again with henna but I figure I will give it a month since chemo ended before attempting to do that. Henna is all natural and can be mixed with vinegar, olive oil, lemon juice, egg yolks or just plain water before applied to the hair. It can also be left on for half an hour or for up to several hours. Henna is different than hair dye because it simply stains the hair and it leaves your hair shiny and in good shape after you wash it out. I started using it about a year before I was diagnosed and found that it does a great job of coloring grey hairs and adding good color in. The only concerns I have about using henna are that you must have high quality henna and that you must adequately assure that the henna paste you apply to your head is thin because I think too thick a paste could weigh down the hair and cause it to fall out. Low quality henna sometimes contains sand and other additives which are bad for you hair. I use the Frontier brand that I bought from Amazon and I've been happy with it. It's pure henna. You can find some sites online that detail how to use henna on your hair if you are interested but I think this might be a viable solution for people who have big problems with roots during and after treatment. Unfortunately, it doesn't seem as though anyone has tried it yet (at least no one here on the boards that I could find) so I may be the guinea pig for us. I'm going to give it a shot sometime later in the month and will report back. I had considered coloring with henna during my chemo treatments but my roots didn't actually look as bad as I'd thought they would and I didn't feel a real intense need.
As stated earlier, there is no right answer as to whether to do the caps or not. Not everyone feels traumatized or upset about losing their hair. It's really an individual thing. I'm a young woman and it was hard enough for me to accept possibly being infertile after chemo; the idea of losing my hair really kind of sent me over the edge. Other people I've talked to say they didn't feel it was a big deal. To each their own, really. Also, I should mention that I decided not to ice my nails because the cold caps were enough to deal with and I had literally zero nail issues. My nails look completely normal - no color change, no ridges, no lifting, nothing. It would have been a lot of discomfort to ice them for nothing. Unfortunately, there is no way to know ahead of time if you are one of the people who will have nail issues but just want to put it out there that it is not a for sure thing that you will have nail problems. Good luck with your treatment!
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One last thing - I've been wearing my hair in a loose side braid for the last several months. It looks pretty cute and it seems to help my hair from getting knotted and tangled (which has been a serious issue since starting with the caps). I'm not sure how other people are wearing their hair but this is the style I've been going with and it seems to be working.
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Happy New Year Everyone!!!!
Um, can I tell you how glad I am that 2013 is gone gone GONE? Well I am. Being diagnosed, going through sugery and chemo... so stressful. But this board - and in particualr this thread was such a haven during a period of unbelievable craziness. I just wanted to pop in and thank all of you who e-held my hand through it all.
I'm about five months PFC and my hair has filled in nicely. I kept some length for a month or so after final chemo - but once I had enuf hair to fill in the thin areas I chopped. And I love it! It got thin on me but I never wore a wig so the caps were worth it to me.
New cappers - hang in there. It's so scary at first but it does get easier and better.
Thanks ladies. I really appreciate you all,
Kay
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I am so glad the caps worked well for you Kay! You had a great attitude through it all, that helps. It is a crazy year for sure but then hopefully we go back to our "new normal" and put it behind us - I sure hope that happens for all of us on this thread. Here's to GOOD health in 2014!
Warrior, I see you got some great answers already, I just wanted to add that you can go into Sally beauty and see what kinds of gray covering products they have in advance, if that helps with the decision. There are several.
I pulled my long hair back VERY gently with the smallest claw clips during my capping days, and wore loose headbands or silky scarves tied like a headband (loosely) to cover the fact that I wasnt brushing my hair or washing as much.
No one had any idea what I was going through, most still don't- that was important to me. On the flip side, since you are not "identified" as a cancer patient everyone's expectations remain just as high and it can be hard to keep up with work, since chemo is exhausting.
Whatever you choose, you have a great group of people here on these threads- especially this one. GOOD luck!
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warriorwoman - yes the luster returned to my hair AND it has more body than it ever had. I love it. The hair that I shed has grown back in with curl, but it mixes in with my straight hair and just gives me overall much more body. I like my hair now better than it was before chemo! It is a bit more frizzy, but you would have that with or without caps - much worse if all the hair growing back in was super curly. I smooth it down with a tiny bit of morrocan oil after I dry it. That stuff is awesome.
Here is a link to my cold cap photo album. I just uploaded a recent pic from Dec 2013 showing how my hair is still doing very well, despite highlighting every 6 weeks or so.
https://coldcapphotos.shutterfly.com/pictures/8
Most people say don't pull on your hair at all during chemo time and the few months post - be gentle, gentle, gentle. So I avoided ponytails because the band really would pull the hair tight. BUT, I used a clip at the back of my head to pull my hair back and up. I did not feel it pulled hard on my hair at all, and my hair was none the worse for it!
This is the kind of clip I used (not the exact one, as mine were all plastic, but similar duck-bill style):0 -
Janet - I figured I'd go local for the chemo but HUP sounds appealing for the reasons you mentioned. Are the nurses there familiar with and helpful with the cold caps? I can just imagine my husband fumbling around.
Gilded - I used henna many years ago and unfortunately the color was funny on me. Honestly, if I were younger I think it would be harder. As we get older we care less about what others think. This is a lot to handle at any age. You must be so glad to be done with this and have your hair and your health back.
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Gilded - I can do a braid!
Sciencegal - I think everyone knows about my cancer. It spread at my job like wildfire. I don't care. The advantage - No one expects anything from me! LOL But keeping my hair would be nice.
Dancetrance - Thank you for the photos. My husband doesn't believe me and when I can actually show him he may be more likely to be optimistic.
Should I plan to bring one or two people with me to help with the caps?
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