Cold Caps Users Past and Present, to Save Hair
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I had a part of my scalp that seemed sensitive and kind of numb for a while. It no longer feels that way. ANyone else??
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I too get tender scalp in various areas that seems to roam around from one day to the next and then it disappears. I think our hair is growing faster because of the cold. I have about 2 inches of new growth since December.
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I had scalp tenderness during my 3 months of chemo, but it all went away a month or two later. No residual numbness. Another much less nefarious possibility for your symptoms is you sustained some frostbite and hence sensory changes that perhaps are lasting due to that/some superficial nerve damage...but that is total speculation on my part.
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Thanks guys. I don't know why I am so freaked out about this today, other than that I have been experiencing the symptom a lot. I truly think this is a symptom that started after I started chemo, so it really does not make sense that it would be scalp mets or something similarly horrible. Frostbite, nerve damage, some other thing like that makes more sense but for some reason I'm fixated today. Rhonda, I guess part of the reason I'm feeling freaked out about it is that I finished chemo in early november, so like 5 1/2 mos ago.
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Day 7 and I'm starting to feel like me again. This has been very difficult for me and it surprises me. I mean, it's only a few days and I figure I can survive anything for a few days but it really got to me physically and emotionally.
The low-grade nausea just would not leave and it was horrible. I've never been pregnant but I would have sucked at morning sickness!!! More difficult to deal with was the emotional aspect. As time went on, I felt more and more that I'd been through an ordeal. I couldn't come on line and read the posts. I couldn't think about the cold caps at all. Just thinking about the whole thing made me feel really sick. I began wondering if I could do another round of chemo and especially if I could do another round of caps. It was like a PTSD thing or something. I couldn't go into the freezer in case I would see the caps.
This is not like me at all. I'm normally the one who puts things in perspective and keeps a positive attitude. Yesterday, I finally felt rid of that nausea. My hairy tongue felt less hairy and I began to have hope. I started to consider that my next treatment is just a week away and it was maybe going to be okay. I even read a few posts on other boards, but still couldn't deal with the caps. Today was much better and though tired, I have felt pretty good.
I know in a few days I'll be ready to go for #2 and I know I'll do the caps. I am beyond surprised by my reaction to it all. Did anyone else experience something like this?
Thanks for letting me pour all this out. I didn't know it was locked up in there until it started pouring out.
oh... and if anyone's going to be doing Neupogen, I haven't had any noticable side effects at all, and the self-injection doesn't hurt even a tiny bit.
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Shipsgirl, i think we started treatment the same day. Chemo kicked my butt for the first week also. The physical symptoms were rough but expected. It was the emotional toll that surprised me. It's been one week and I finally feel like I'm coming out of the fog. I went into this expecting to push through and live my life, including work, as normally as possible. I might have to adjust my expectations. My treatments are three weeks apart so I have more time than you to recover for round two of the caps. Hopefully, once we start believing the caps are actually working it will make it all worthwhile. Here's to a better week two...
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Shipsgirl and JC - glad to see you posting again. it's been quiet here!
The nausea is difficult - hopefully it lessens for you, but if it doesn't, you do actually get used to it (whether morning sickness or chemo nausea!!) which will make the coping easier.
As for the emotions, I have my moments of "I still can't believe this is happening and why me?" It's okay and normal to feel all that stuff! Sometimes I find distracting myself with stuff (and my kids of course) helps to lessen the emotional load in the moment, but it's always in the back of my mind, especially when I stare at their innocent faces. They have no idea what I am really going through, as I have chosen to lessen the load for them. I have been separated for a year, which makes this even more difficult. But thankfully I have some good friends that help me through and a great family.
Keep the faith with the caps! I am now day 29 and i still have hair! It has thinned quite a bit, but not overly obvious to others. I do have to say I dread the daily comb, but I am hoping that the major shedding has stopped. There were 3 days of horrendous shedding around TX #2, and now it's better, but definitely daily shedding. I am just hoping for no more dreadlocks, as those really result in huge sheds. Enjoy your ability to comb through your hair right now with no shedding! Boy do I miss those days!
Feel better ladies!
xo
Curly
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Shipsgirl, so sorry to hear about the emotional toll - it is normal and many women have PTSD sx after being dx'd with breast cancer. The caps helped me feel like I had some control over a situation where I felt helpless - that belief or perception I thinked helped me feel better about the stress associated with using them. Our feelings are totally controlled by our beliefs and thoughts. When you feel down, or stressed, or angry, ask yourself "What thoughts am I having that are generating these feelings? What beliefs am I telling myself?" Examine what it is you are telling yourself. If you can change what you are telling yourself, you can change how you are feeling.
At that same time, though, feelings of grief associated to the many losses associated with being diagnosed with cancer must be felt in order to be released and move on. Allow yourself to feel sad in order to move past it. It is important you don't bottle it up, so keep on expressing!
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Thanks ladies. You are so great. It's so helpful to know I'm not alone, and I feel supported. Today is better again. I feel pretty good. Did anyone have issues with smells? That's the weirdest one for me because I have always had very little sense of smell. Suddenly it became acute and everything set me off. I had to wash my pillowcases and dryer-fluff my pillows because I was sure they carried the smell of the cold caps (from my hair).
Curly, I'm glad your shedding slowed. That is great news! That means you will be successful!
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shipsgirl - are you taking Emend for nausea? I insisted on being given it after reading about it on chemo threads here. Other than one bout of nausea the first time that I believe was caused by a sugar overload, I never had any nauseous feelings. If not that, then speak to your doctor about something else to help control any nausea.
Chemo did make me feel lousy each first week, but slowly it got better and by the end of the second week I was feeling almost normal. I had read on here that moving and activity helps, even when you don't feel like getting up and walking. I found that to be true, so I would start pushing myself to walk even when I felt awful and I got better exponentially. It was actually surprising how well it worked.
I remember some things smelling funny or strong, but mostly I lost my taste each time which made it hard to find anything that appealed taste-wise. Oddly foods that tasted good after one chemo session, might be repellant just to look at after the next one. It made no sense at all. I just tried to be sure I got enough protein and liquid to help my body cope. Sometimes I had to drink protein shakes when eating didn't appeal, and drinking enough water was always a problem so I began getting extra hydration through watery fruits like watermelon and strawberries. Hydration always makes you feel better, being dehydrated can cause achey feelings.
Hope things go better for you as you proceed through your treatments. I wondered if I could handle cold caps a second time, but found I could. They aren't easy, but they are worth it.
Cypher - I think many of us experienced some sensitivity on our scalps in one way or another. I am sure you don't have scalp mets. My hair on a section of the top of my head was sensitive to being brushed against the way it wanted to grow when normally it wouldn't bother me, to the point that it almost hurt. That feeling is gone now, eight months after ending chemo. Hope your's fades soon!
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Thanks hortense. It is reassuring that yours lasted as long as it did.... I have to keep reminding myself that I first noticed it AFTER the first chemo, so scalp mets really doesn't seem too logical. Frostbite maybe....
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Hi Ladies - here's an opportunity to get the word out. Today's NYTimes has an article in it on "Living without hair". Here's the comment I posted: "Women should have information and know they have options. Some commonly used chemo agents can result in permanent hair loss 3-6% of the time. Cold caps are an option to save your hair for those with solid tumors (such as breast cancer). They are up to 90% effective with some chemo regimens. I used them. I kept my hair during chemo."
Consider reading and posting!
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I've been a lurker on this board for a while, getting good tips from everyone! THANK YOU!I just finished round 2 of Taxotere/Cytoxan, with 2 more to go. My treatment dates are 4/4, 4/25, 5/16, and 6/6. So far, I'm happy to report almost no side effects. After round 1 I did have some achniness from the Neulasta shot but that was the worst of it. I plan to try the suggestion of Claritin for round 2 to see how it does. Otherwise, I've felt quite good!The caps are cold but not at all unbearable, and at day 23 I still have my full head of hair, after starting some minor shedding around Day 17. I am thrilled and cautiously optimisitic! I got so many amazing pointers from everyone on this board. Here are some things I've found work well for me (so far)
- I take Silica as suggested by the moderator on the Penguin Cold Cap board (bought on Amazon) daily before, throughout and plan to continue after chemo to help stimulate hair and nail growth
- I drink 8 glasses of water every day, (not just around chemo days). Your hair follicles need hydration to grow
- Instead of labeling my coolers C1 and C2 as instructed, I labeled them by the cap numbers they contained (1, 2, 5, 6 and 3, 4, 7, 8)
- I didn't take anything before starting the caps other than the normal premeds and haven't had any issues with headaches, etc. It was so bearable I was afraid we did it wrong!
- I didn't ice my mouth, fingers or toes in the first treatment and had no side effects. But after seeing suggestions to do so on here for #2 I did get a ziplock bag of crushed ice from my freezer. I held it with my fingers to ice them and then ate the ice chips during taxotere.
- I started shedding around Day 17. I bought lint rollers for home and a travel/mini lint roller to carry in my purse.
- I loved the suggestion of Color Mark to cover grays. This is a life saver! http://colormarkpro.com/
- I bought a light, breathable straw style fedora hat for bad hair days. The week of chemo is brutal when you go almost a week without washing, but totally worth the greasy, dirty hair that I still have.
- I work out daily and I think this has helped me make it through 2 rounds of chemo easily. For workouts I use a small clip to loosely pin back my hair
- I have bangs which have a mind of their own without a hair dryer and flat iron to coax them into a style. I often wet or wash them, gently wrap them in a round brush, (do not brush through, just hold it there) and use a hair dryer on cold setting to attempt to tame them. I cut them shorter (myself, in front of the mirror) after a week to make this easier.
- I was only able to get dry ice in pellet form. I ordered 100 lbs and had them deliver as late as possible the day before treatment (usually in the afternoon). My treatments usually started around 9:30 AM the next day. (Don't put the caps on dry ice until 2-3 hours before treatment will start)
- I bought a very wide tooth comb but hated it and found a hair pick worked better for me
- I wash my hair every 3 days on non-chemo weeks, but do wet it with cold water in the shower on some other days, especially when I've had a good, sweaty workout
- I bought the starter kit which came with lots of supplies so I didn't have to track them down individually - ear mitts (which I never needed/used), moleskin, thermometer, electric blanket, neck pillow, gloves to handle dry ice, alcohol wipes (to clean caps and to easily remove moleskin when you're done) satin sleep cap (which I never used. I used a satin pillow case instead), neck pillow, large plastic bags for dry ice, etc, Ordering info can be found on this page: http://www.rapunzelproject.org/ColdCaps.aspx
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SuzieQ - Congratulations on your success so far! It sounds like you are doing very well. You have every right to be optomistic. Keep it up!
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Thought I would check in . Last chemo was 1/7/12. I have trimmed my hair about an inch twice to get rid of dry ends. It feels as though the hair I kept is so dry and frizzy. I have been using the sulphate phosphate free shampoo still but have to admit the last two washings I put in a dab of real conditioner and have tried some leave on conditioner. The new hair coming in is soft and like my old hair. I started the Clairol beautiful hair dye a few weeks ago with fair coverage. I was hoping it would help the condition of my hair....it seems to a little. I am still washing once a week. Do you figure if I go to 5 days it would help with the conditioning? No shedding any more. Just normal when using a wide pick in the morning. Hair is shorter due to trimming. Definitely thinner than back in Nov. but it is starting to fill in a couple of inches at the nape and temples. Just waiting for the big loss in the back of my head to fill in again.
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I have been using Organix Argon Morrocan Oil Shampoo/Conditioner and deep conditioner since my cold cap days. I still only wash 2 times a week....my hair doesn't get greasy. THe conditioner and deep conditioner make my hair feel really good. You are suppose to leave it on for at least 5 minutes I believe. Maybe that will add some moisture to your hair? I also use the argon morrocan oil gel like stuff before styling my hair. For those of you that color your hair -once you are ready to use real color on your hair try Naturtint. I have been using that for the past 1 1/2 years. My hair does NOT get dried out at all like it did with regular color kits. I use it every few weeks and the color is pretty. My hair is healthy. It is a more natural color kit. You can get it at health food stores. Once I decided on a color I liked, I order in bulk from Amazon. It is cheaper that way so once you know your favorite color do that and it will be so much cheaper. I use the Warm Chestnut or Light Chestnut color....can't remember the exact name but it is one of those. Just wanted to share.
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I have the moroccan conditioner. Will leave it on longer and see if it helps. Its the frizzies that get to me!
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I love reading about aftercare. It is so fantastic that you have afterhair!!!
I haven't started shedding or lost body hair or anything, but I'm already dreaming of aftercare. Congratulations to you and Iknow we'll be joining you on the "other side" before too long.
Starting to think about next chemo. Just a few days ago, I couldn't let myself even go there. Now I know that I'll be fine by Thursday. Not sure what to ask the MO for to help with cap discomfort. Maybe Atavan will help me relax and the discomfort will be managable. I used T3 last time and I'm not sure if it helped. It wasn't just the first cap, it was every time I changed caps.
Today is Day 11 and apart from some bone ache from the Neupogen, I'm feeling great. Still get tired, but can do a pretty active day.
Best wishes to all for a beautiful Sunday
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Did someone say that a cold cap rep was going to be on The Doctors on May 2nd?
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That's what I saw posted on the Rapunzel facebook site a few weeks ago.
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Shipsgirl, I definitley recommend something to relax you in addition to the T3. I took a Xanax and although the first few caps were rough, I also only half- cared about it and could just kind of zone out while my head adjusted...give it a try and see if that helps. Also maybe double check with Geralyn that the temp is appropriate. Good luck!
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That's good advice Hope. It made me realize that I was pretty wound up last time. I mean, my mother was a great help, but she'd been expressing a little overwhelm about all that was involved and I felt I had to be totally on top of it and be the manager. I'm sure that didn't help.
But Mum is more confident about the next round and my brother will be there to help her. So I wll ask her to take over managing the timing. And I'll ask my MO to give me something to help me relax.
Thanks for great input!
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I wanted to post my experience so far with cold caps - I'm on day 20 after my first of six Taxotere/Cytoxen treatments. Just started losing hair at the nape of my neck yesterday and more today, however I have a huge head of hair anyway. I had a little freezer nip on various parts of my scalp but that was over a week ago and it only lasted a day or two. I am careful to wash my hair only twice a week with the PH balanced shampoo and conditioner recommended by the cold cap rep in my area. The thing I find most interesting, is while I am losing hair on my head, I have not started losing anywhere else. I don't mean to jinx myself but the area I tried to protect is the one with the hair loss.
I will continue to use cold caps as long as there is significant hair to save. One thing I absolutely had to do was get a wash-and-wear hair style as not being able to blow dry or style my long hair made me feel like a bag lady. I had about 5 inches dry cut by my stylist and it looks great. At least now when I get out of the shower, my hair will air dry into a professional looking style without any fuss.
It's interesting to note that the areas where my hair is shedding is tender to the touch and I think I read others had that same experience. So that's it so far. Good luck to everyone else using cold caps.
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Hi AmyQ. I'm in the Twin Cities too - where are you getting your treatment? I was at MN Oncology at Abbott, and I still go in every 3 weeks for Herceptin. I always look for someone in the cold cap room hoping I can give someone encouragement, but so far since finishing chemo myself in December I haven't seen anyone in the room on the Fridays that I am there. I had fantastic success with the caps (different chemo than you though) and I know from reading this board that there are plenty of TC folks here who also had great success. I think the hair on your head grows faster than hair elsewhere on your body, so it goes first. The nape of the neck is a pretty common place to lose hair if the caps are not quite big enough to cover that area - and luckily not very noticeable there to anyone but you!
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AmyQ - It took a while before I saw any hair loss on my body. 20 days is still early so don't expect it right away. To my surprise the loss wasn't sudden, it was gradual, although I understand head hair loss is sudden. I seemed to have lost most of my body hair eventually, except for some in the creases of my legs. I really did not like my chemo Brazilian and am glad to be back to normal. I have to say that while I have never had a lot of hair on my arms and legs or underarms, I seem to have less of it now, nine months PFC. I sometimes can't see anything to shave. I wonder if that will change. If it doesn't, that will make me wonder if I might have been among the unfortunate women who's hair never recovers from chemotherapy. Thank goodness for coldcaps!
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Hortense-I've heard the same. A couple of the women who I have helped with the caps had had chemotherapy a few years prior. They both said their hair never grew back as dense as it was prior to chemo.
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PatinMN I'm being treated at Fairview Health Services in Edina. So far I'm pleased with my care team and I absolutely loved the kindness and compassion I received at Fairview Southdale Hospital for my bilateral mx.
I had round two of TC today and the nurse was telling me she sees a few people who use cold caps. She said those on TC generally have good results but everyone she sees on Adriamycin absolutely loses their hair. This of course is only her observation. I wonder if its true and if it is doest the Penguin Cold Caps website tell client's this?
I wish someone in the US would conduct a study about the Cold Caps but as my husband suggested who wants the placebo when they really want to save their hair?
Thanks for the update - I am holding out hope that I am one of the lucky ones. Regarding shaving, I cannot get a razor under my right arm because the way my TE is encroaching and causing a cavern-like shape and greatly reducing the space under my arm. So maybe hair loss there won't be so bad.
Hortense my husband sees a lot of cancer patients as he is a Palliative Medicine Doc. He said his patients have amazing stories about their hair growth after chemo. One fellow was practically bald before he went through chemo and lost the rest of his hair. But after chemo he regrew an entire full head of dark hair like he had when he was young.
Another woman lost all her grey hair but after chemo it grew back much like her color as a teen and very curly.
So I guess there are some advantages to hair loss after all, I just don't want to find out.
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The opposite is also true. I have a friend that asked her MO about cold caps and her MO said they don't work and she didn't want her to use them. She told her that her hair would grow back fine. Unfortunately she has permanent hair loss from TC as do MANY women. MO's just don't tell you that or don't talk about it. My friend was crushed at the permanent hair loss. Most women are not warned there is a possiblity of permanent hair loss...but of course they ARE told that cold caps cause scalp mets.
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One of my good friends (using PCCs) is now through with 7 of 8 AC-Taxol treatments. Her hair has thinned - especially on top - but she has hair! And - as everyone on this board says, "Any day with hair is a good day." The literature is pretty clear that Adriamycin is tough on one's hair and that the results are not as good as with some of the other regimens. That said, some hair is better than no hair.
AmyQ - I have a bibliography of all the research done on cold caps. I'm happy to share it if you PM me your e-mail address.
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MDG I have read that permanent hair loss is a possiblity which is one of my main reasons for doing everything I can to save my hair. I also have read scalp mets are a possiblity as well but I am willing to roll the dice just as I am with the treatment I'm receiving. At some point I have to put my trust in my care team and God and know that they know far more than I do.
301724 I sent you a PM - looking forward to seeing what you have on the subject. thanks
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