Cold Caps Users Past and Present, to Save Hair
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Pch, too funny!! You can always if you want to try the hair powder!! I works as a filler too. I have the hair too that I can shake on!! Gross but it works. I also started using some natural hair spray away from the roots. My hair was super long before chemo. Then a month and one half before it started I cut off my hair. It is now getting to be just long enough to pull back. I live in the north east and it's been over 100°, so needless to say my hair looks like I stuck a finger in a socket. I am now able to pull it slightly back if I'm going out thank God. But I still have my own hair and I'm very proud of that! This coming week will be heading into my 7 th week post TC CHEMO.
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beatcancer, what type of hair piece are you using? I might need to look into one so trying to prepare
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jbandkb.....I finished using PCC 3 weeks ago and did 4 AC plus 11 Taxols. I am very happy with my results. I would estimate that I lost around 30-40% of my hair. I had very thick hair to start with so unless you knew me prior to diagnosis, you probably wouldn't even notice my hair loss. Look back at my previous posts and you can see pictures of where I was during the treatment process.
Steflove...I ended up buying both a "topper" hair piece and a package of 4 extensions over the weekend. They are amazing! I know they are not recommended so soon after PCC but I have a couple big events in the near future that I really wanted to look like myself. Anyway, the topper piece is great for right now as it really fills in my part and hides my little wiry new growth & grays. It secures with 2 tiny clips and just rests on top of your head, hence the name. I wore it out to dinner Friday night & loved it. Maybe I will post a picture and you can see the difference. Then, I figured once I was further out from chemo, I would start wearing the clip-in extensions I bought to help replace the fullness and length that I've lost. Since they contain more clips than the topper, it's probably best to wait til my hair stops shedding.
Jeannine....I agree with Kazzy...I think the heavy shedding in those areas is most likely due to reduced contact by the caps. It's hard to consistently get the nape of the neck and around the ears covered just right.
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OMG Angiel I saw your pictures of your hair and it looked great. I would have never known you had chemo. I have thick hair so I'm hoping the caps work and what hair I lose you can't tell. Did you do anything for the pain prior to putting on your first caps for the pain and through out wearing them that day? I'm really hoping this works. I have 2 small children and want to still look like mommy. Did you lose your eyebrows?
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Thanks Jbandkb.....I always took 2 Extra Strength Tylenol before I left my house on my chemo mornings and then I either took pill form Ativan 30 minutes prior to starting the caps or had them put Ativan in my premed IV drip. I felt the IV drip was a little more potent; however, if I wanted to get started with the capping sooner, taking the Ativan by mouth was faster so I didn't have to wait for the nurses. No, I haven't lost my eyebrows...they have thinned but nothing too crazy. I lost all lashes on the bottom for a couple of weeks during Taxol and now I have only 1/4 or so on the bottom and about 50% on the top. I did start using Latisse, though, from the moment I was diagnosed & I brush it over my brows nightly too. Who knows if it was the Latisse or not, but since I already had it, I just used it. I had used it off on on for years but was never consistent with it until now. Please feel free to PM me if you have any other questions.
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ladies: Have anyone tried to use the cold cap without taking tylenol? I am allergic to tylenol, and wonder if I can survive the cold capping without it.
Thank you
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I don't recall taking any pain meds before cold caps. First two caps are the worst. Then you get numb and tolerate the remainder much better, just really cold first few seconds of each subsequent cap.
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dancetrace: thank you for the info. my chemo (taxotere, carboplatin, herceptin) starts next thursday July-30. I am nervous about it and tried to get as much as info as I can.
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You are welcome. That's the regimen I did. You will make it through. It's been 3 years since I finished chemo. At the time it seemed like it never would end, and I too was petrified. Head down, push through!
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Alice, I took Advil and Xanax before each infusion. Like Dancetrancer said, the first couple of caps feel cold for the first few minutes and after that you are just too numb to feel anything.
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Hi ladies, I just thought I'd repost what I said in this month's chemo thread. I started TCH on Friday 7/17.
I bought four Elasto-Gel caps, four pairs of mitts and four slippers. I kept them all in my freezer overnight then took them in a cooler with 40 lbs of dry ice to the infusion center (luckily my husband and a dolly made that possible). I changed them all out every 45 minutes during Taxotere and Carboplatin, starting 15 mins before Taxotere and going 15 minutes after Carboplatin. Each time I put on a new set, they seemed colder and more painful, but manageable within 10 minutes. I have bad circulation and my hands and feet are naturally cold, so this might make it worse for me than normal people.
When I was done with a set I put them back on the dry ice, which re-froze them. I used a re-freeze for the last set, and they were the coldest - I actually had a bit of numbness in my pinky that finally went away the next morning. I definitely wouldn't recommend re-freezing. All my future infusions will only take two hours total, so my sets of four should time out perfectly.
Having hair provided insulation that made it much more comfortable on my head than on my hands and feet, even though my hair is naturally very thin and fine. I used moleskin (with adhesive on the back) on my forehead and over my ears which helped immensely - just be careful not to get hair on the adhesive, you'll rip it out when you take it off!!!
I wet my head as recommended before putting on the first cap, but didn't re-wet in between... wondering if I should've. Oh well, what's done is done at this point. Hopefully it was enough to hold on to my hair. We shall see!
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Cheesequake, I hope you have success with your schedule; however, most of us here followed the Penguin Cold Caps schedule, which calls for capping 50 minutes prior to first chemo, changing the first two caps after 20 minutes and all other caps after 30 minutes, and continuing to cold cap for 4 hours after the end of chemo. The caps do warm up quickly while on your head - that's why the first two caps are changed after only 20 minutes. Then once your head is pretty frozen, the caps don't warm up as quickly and you can go to a 30-minute change schedule. Penguin wants to make sure that your head/follicles are quite cold before the chemo drip starts, hence the 50 minute time frame. The post-chemo capping is meant to protect your hair while the chemo is still circulating through your body. I don't think 15 minutes is enough.
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Wow, I had no idea. So much for that. :-/
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Well cheesequake, don't throw in the towel yet! Just wait and see - perhaps you will just shed more than others, but not lose all hair completely...fingers crossed!
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Goodluck Cheesequake - like danctrance said, don't lose hope yet! Maybe you could change your plan for your next treatments?? I did Penguin Cold Caps too & followed their protocol, so my 2-hour infusion turned into nearly 7 hours of cap wearing & using a total of 14. I did not ice my fingers or toes for any of my 15 infusions and was fine. I did take L-Glutamine for possible neuropathy though.
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JeannineBender, that nape/above the ear shedding is a cap fit issue. Just keep going and don't worry about it. (The shedding is probably entirely different, yes? Not diffuse? That's cap fit.) But that will be the first hair to grow back when you're done (at least it was for me). I don't know how long your hair is, but the rest of your hair should cover it well enough to get you through. It isn't a sign that you'll lose more hair from hot flashes. Don't worry. (But do try to get a snug fit on the rest of your head. Readjust if necessary. The few extra seconds during cap changes to get good contact all over is worth it.) Hang in! The program works!
beatcancer4life, I have every kind of hair powder imaginable. It's comical. I'm pretty close to being able to dye the freaky silver streaks though so I'm just going to gut it out. Or may that hair topper, Angiel … that sounds alluring.
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how much dosage did you take L-glutamine? is it powdered or capsule?
thanks for the info.
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Thank you for the responses about my nape/around the ear hair shedding. My hubby swears he is getting it as tight as he can, but I wonder if we are doing it wrong. We are using the frozen gel headbands around the nape and ears, but we are using those in place of the elastic bands. Should we use both?? Maybe the elastic bands would keep it tighter. I was just worried that those elastic bands would keep the cold from reaching my skin, so we nixed them.
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J - losing that hair at nape and ears seems normal and may be unavoidable based on what I've read on this board and the women I've met that capped. Try not to focus too much on those areas
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so I'm done with the dreaded AC and now working through taxol and carboplatin but I just wanted to post my results so far. AC really did a number to my hair but I still have a decent amount and I'm hoping the shedding slows down now on taxol. I used to have long thick hair and it's still long, def not as thick. I'd estimate I lost 50% of my hair so far.
still have 10 more Taxols to go. The thin and bald spots I'm also going to assume are from the cap not being completely in contact with my scalp for some reason. Each treatment I feel like we get better at it but who knows what happened the first few times.
This is from this morning before I used toppik.
The shedding from combing it this morning after I washed it last night... Still so much hair
And then after toppik...
Ignore the insanely messy bathroom!
(and bedroom...oops! haha)I'm still going to say that I'm happy with the results, I just really hope that it doesn't get much worse for the remaining taxols!
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Alice12, the usual dose of glutamine is 30 grams per day, taken 15 grams x 2. Powder form - capsules are 500 mg, so you'd need to take 60 capsules per day. I got some free samples of Glutasolv powder from my onc, which came in convenient 30 gram packets. You can buy those packets on Amazon. When I ran out of the packets I bought a tub of powder from GNC. I didn't start taking it until I started having the neuropathy tingling (at the suggestion of my chemo nurses). You mix the powder in the liquid of your choice. It doesn't really dissolve, just suspends.
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steflove, those Toppik fibers are pretty amazing! And you still seem to have great fullness in the length. Are you doing weekly taxol? Hopefully it will be kinder to you than the AC. I barely shed at all on weekly taxol, but I didn't have AC first.
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patinMN, yup! Weekly taxol with carboplatin every third week. I hear 'great' things about taxol and cold caps so crossing my fingers the worst is behind me and now I can smooth sail through the taxol!
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StefLove I'm going to be starting ACT on 7/28 and an on trying the cold caps. It gets my hopes up when I see women like you and other that have kept their hair especially during the AC. Will the toppik damage your hair since you aren't done with chemo yet
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you look great!!!
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I finished 6 rounds of TCHP about a month ago. I lost what I feel is maybe 40-50% of my hair, with a lovely bald spot on my crown. Still shedding a lot, but it seems to be a little less. Even though my already thin hair is even thinner, my hair has still grown in length, about 2 inches, since I last cut it before chemo in February.
Here's a picture of my crown progress - left is May, right is July!
And I have hair growing in!
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Jbandkb, don't lose hope! A lot of ladies on here have used toppik and haven't had any issues. I don't think it's endorsed by Penguin Cold Caps but it definitely helps hide the bald/thinning spots!
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wpmoon, you look great! and your eyebrows look fabulous!
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Thanks, StefLove! I still have to fill in the eyebrows - they're taking their sweet time growing in. They're about halfway back to normal. Hoping that within the next month, they go back to pre-chemo fullness. My lashes are falling out more now than they did during chemo, which makes me sad. I had fabulous lashes!
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*sigh* wpmoon, I had fabulous lashes and eyebrows too. Since I'm still going through chemo I still have both but the thinning has definitely started! I should probably start learning to draw on eyebrows bc it's only a matter of time!
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