Cold Caps Users Past and Present, to Save Hair
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hi ladies!
I just had my first chemo yesterday. 3 more sessions to go of TC! I did the artic cold caps changing every 15'. So tiring with everything else going on. I just hope it works! I am so scared of going bold. I wonder what did we do right? What else can we do?
They rec'ed start 40' before chemo and continue 4 hrs later! We were exhausted, but if it works.... any tips to make process easier
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Fastgirl, thanks for all of the suggestions. I think I'm going to take Elastogelgirl's suggestion of not coloring until I stop shedding. I'm hoping that will be soon. I'm going to remember that on page 631 you gave a lot of suggestions. I have a lot of white hair growing in, but it is not visibly white at my part, because the white is not visible at all. I have enough brown hair that my part is just normal brown. I can't see the white, and most friends can't see the white. I have a younger friend who has better vision and can see the white, the rest of us don't have good enough vision even with contacts or glasses. Well I can't see it because I want to look at the top of my head, and can't and can't get a picture either.
I think at some point I will read a lot of backs of the boxes of hair color. Early September is the date when I can use real hair dye. I think I would rather do it myself than get it done at a hair place, because I want to make sure what is being used.
I do have Toppik and will use it more.
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Is anyone doing Cold Capping (like Penguin) without help? I have a very limited support system, but definitely want to keep my hair! The facility where I think I will probably get chemo I think has DigiCap but I'm not sure how much they charge. Just wondering how hard it would be to do it on my own. I'm pretty self sufficient, but I'm having a hard time imagining how I will be feeling and how hard it is to change the caps out.
Thx,
Rebekah
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Hi! I'm starting my chemo next week. 4 treatments of AC and 12 Taxol. I am using penguin cold caps and have a couple of questions:
1. Penguin suggests taking Silica Compound but oncologist said no. Anyone use this?
2. Suggestions on a wide tooth comb?
3. Did you use a hair net on hair and under cold cap?
4. Do hair products need to be organic or just parabeen and sulfate free?
5. Can I or should I apply Conditioner on hair, my hair is typically dry so I often do a deep conditioner - Should I continue this or do on treatment day?
6. Wash hair 3 days before and 3 days after....so if treatment is Wednesday July 5th I would wash Sunday July 2nd and Saturday July 8th?
7. Can you use dry shampoo? I assume yes as long as it's parabeen and sulfate free?
8. Do you use castrol oil on brows and lashes? Or something else?? How often did you apply it?
9. Any other important suggestions??
Thanks so much!!
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rdeesides: I am using the Penquin Cold Caps. Just had #3 of 4 treatments of TC. I am going to be completely honest .....In my opinion, I do not think that you would be able to do the cold caps on your own. My husband does it for me and the two of us are exhausted after the day. You need to ice an hour before treatment begins and I am icing 4 hours after infusion. It's a lot of work swapping the caps out of the dry ice, letting them get to the right temp and placing them on your head. All this while tethered to an IV sounds next to impossible.
PS: there is no quarantee that the Cold Caps will work. I followed the directions to the "t" and did not have great success.
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Rdeesides- I am Doing the artic cap, I just finished the first round. I really don't think it's advisable to do it alone. It's such an investment, of money and time. Changing the caps every 20, starts 45' before chemo, during chemo, then 4 hrs later. It gets tiring. Also in my hospital we have to leave the room, for me would me impossible.
If they offer the system at your hospital, and it's not the dry ice with a cooler maybe it's a possibility, but I am not a fully familiar. I was told I need s team! Ppl around me had two ppl, I only had one, we did it was exhausting, I just hope it works
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Thank you rdsm! How frustrating that you went to so much effort and have not had great results! I think it's worth a try but I know that must be disappointing.
Ok, I'm going to think on it some more. I just don't know that my husband has the disposition for this task. I have a little time, so maybe a solution will come to me.
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neverquit- sorry you are going through this! I had the same chemo as you and I recommend going back at least 10 pages you will find awesome advice tips and tricks and will answer many of your questions and probably give you more answers and different suggestions these ladies are all great and strong women.
My oncologist would not let me do silica but some seem to be ok with it. I used a hair net just cheap ones off Amazon and it helped keep my hair out of the caps Velcro during changes.
I used acure hydrating shampoo and conditioner. I also tried a few conditioners as AC dried my hair out. I liked Hask macadamia oil. I also sprayed unite 7 seconds leave in conditioner on my off days.
I braided my hair when I washed and the comb did not go through my hair so I used a wetbrush I got it off Amazon for $8 it's truly amazing goes through my tangles so easy
I have chemo on Wednesdays and wash on Saturdays.
I use castor oil on my brows and still have most of mine I apply it at night when I remember.
I take a pain pill before capping but some only need Advil.
When you get to taxol make sure to ice your hands and feet to help with neuropathy. Start 15 min before all during and 15 after. I painted my nails with shellac to save my nails I still have all of them and no neuropathy. I have 5 more taxol to go!! Yay!
You can do this
Rdeesides- if your hospital has digicap I would do that! No cap changing yourself!! I bet it's similar in cost. I use penguin and between dry ice and capping its over $500 per month
Mari- it's a long day and exhausting they give me premeds that relax me and help with nausea that seems to make capping a little easier. You can do this!!
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Hi: Pamela23 thanks for reply: regarding frost bite tips!
June 26 #2 round (TC and coldcaps) and the 2 time worked like a charm - used moleskin and covered forehead and ears very well plus added little ear caps - mini looking shower caps for ears! Used gauze along the top of my head for the area thin area and it all seemed to work just fine! Whew!
Now on 3 day (of 2nd round) and other than a tired - so far so good - waiting for that Neulesta shot to kick in from yesterday and hoping it's also not as bad as first round...had some shedding around day 14 +...we'll see what #2 does...
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Thank MJPow! The Cancer Center website says "we support cold cap therapy" so I don't know if that means they have Digicap or just that they are supportive with the capping in general. I live in Southern California and you would think a big hospital here would have it. It doesn't sound like Digicap works quite as well, but I may be willing to drive up to O.C. if I need to, depending on what my chemotherapy schedule turns out to be. It's still a little early in the game, but that's good because it gives me a little time to figure things out.
R
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reesides, the Rapunzel Project website has a lot of information, including which locations have Dignicap and/or medical freezers (so you don't have to buy and haul dry ice). Here is a link to the location information: http://www.rapunzelproject.org/ColdCaps/Locations....
Hope the link works; if not, just google Rapunzel Project.
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rdeesides - do they have cold cappers for hire in southern california? Could you hire one for the first session to help your husband? My husband cold caps and the first time was crazy with getting the dry ice, timing and putting them on but the second chemo went very well. Now he takes care of the cold caps, and I don't even worry about it.
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I'm sure they must, right? How do you find one?
I know my husband wants the best for me, but he is so impatient and I just can't picture him handling this well. He would get frustrated and I kind of want zen, you know? I have loads of friends but we just moved here from Northern California so they are all up there. Can some treatment only be a few times? If so I could imagine I could rotate friends down to help, but that seems like a lot to ask. Hmmmm. It may also be worth the drive up to Orange County if there are Digicaps up there. Again, I think it all depends on which treatment I end up getting.
That being said, maybe I am underestimating my husband. He is a get it done type of person, so maybe it would be fine. I know he would be super careful and meticulous.
Meeting with surgeon today and don't have an oncologist yet, so more to come....
R
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Hi rdeesides,
You can do it! I'm Stage IV doing my second round of chemo and my second time cold-capping- this time by myself.
It's hard, but doable. The biggest hiccup for me was simply picking up the cooler full of ice and caps. Now, I bring the empty cooler and box of dry ice separately to the hospital and take out the cooler and assemble the caps and ice in the parking garage and wheel away. Sometimes I ask a random stranger for help getting it back in my car, some days I channel superman.
During chemo you just have to stay on top of the time and prep your cap before you need it. Use the alarm on your cell phone to keep on target, even if you fall asleep. It does suck quite a bit, but it's not any worse than having a less than enthusiastic helper like my husband was.
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NeverquitWW
1. Penguin suggests taking Silica Compound but oncologist said no. Anyone use this?
I used it occasionally, I was taking a lot of drugs and I had to cut my silica in 4 pieces to be able to swallow it. I can't even remember if my doctor knew I was taking it. I did a little online research and there is research that Silica helps with hair growth. I just had low commitment to silica.
2. Suggestions on a wide tooth comb?
I got a wide Afro comb, very wide. I don't have an afro, just the widest comb.
3. Did you use a hair net on hair and under cold cap?
I didn't know about hair nets because my (worthless) hair consultant at Penguin never helped me or mentioned hair nets, but they are great, I used for the last 3 or 4 treatments, you really need them, in my opinion. Got the info from this board.
4. Do hair products need to be organic or just parabeen and sulfate free?
Penguin consultant said just paraben and sulfate free. She wouldn't give any names of products, but said you could buy at Target. I ordered Acure on Amazon suggested on this forum. I didn't have the energy to check labels at Target
5. Can I or should I apply Conditioner on hair, my hair is typically dry so I often do a deep conditioner - Should I continue this or do on treatment day? Listen to others about conditioner. I never figured it out.
6. Wash hair 3 days before and 3 days after....so if treatment is Wednesday July 5th I would wash Sunday July 2nd and Saturday July 8th? I had my Chemo on Monday's and 3 days later was Thursday, which was always the worst day of the week. I was often just too sick to do my hair on Thursday and washed it on Friday instead.
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rdeesides - I totally understand how you feel about your husband doing your caps. Mine is the sweetest husband, but I could imagine his hands shaking, sweaty, and losing his temper (like when he is nervous.) We decided to hire a Penguin Cold Cap assistant. I was treated at UCLA and they have freezers. We drove a little over two hours from central california and the PCC assistant met us there. He charged $350 each time. I went to see the MO 5 days before infusion and I dropped off the caps at UCLA and put them in the freezer. I regret not being treated at Tower Oncology by Dr. Philomena McAndrew. She is one of the top MO's in California. They have the most cold cap friendly facility I found. PCC delivers the caps directly to Tower Oncology and the nurses put them in the freezer for you to have them ready for your infusion. I can give you my assistant's phone number, with his permission, if you are interested. He might be able to tell you which facilities nearest to you have freezers. I got so sleepy, there is no way I could have handled the caps by myself.w
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hello today was very sad day! I went for my 2 chemo and i saw at 9 the surgeon because a seroma i had and last week it got infected, the surgeon was out so she couldn't see me until today. Oh surprise she had to open the incision of the sentinel to take all the liquid and pus , So i had no chemo today reschedule for next week, my husband went at 7 am for the dry ice 80 dls for nothing. I was very dissappointed. On the top of that remember my 2 pony tails tangled that i couldn't do it by myself. Yesterday i spoke with the representative of penguin and she recommended to go to a hair salon to help me. I went and spent 5 hours to detangled my hair finally She did it but i lost half of my hair in it. I was so sad i cried a lot. I couldn't believe it.
But happy to take those pony tails from my head.
Now i have to be careful the next time i wash my hair. And i will continue cold caping because all the hair i lost was near the ears like Pamela said. On the top i am fine so i can disimulate those bald spots with the top of my head. And i will have my hair all the time with a pony tail because now is thin, short, awful and dry. Not to have it loose.
I will buy the wet brush, the accure and conditioner, comb the hair in the washer.
Any other advice. ? Thanks.
You can see all the hair that i lost with the tangled pony tails.
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Vivian- I'm so sorry about your ordeal! But now it is history try to put it behind you.
About dry ice...hey if you still have it in blocks in bags I would attempt to return it! My husband returned excess dry ice to my supermarket repeatedly! Always late at night after every chemo. Sounds crazy but they were sympathetic and they realized that dry ice sells by the pound anyway. So even slightly shrunken pieces still have the same per pound value. And dry ice can get contaminated. Ours did not shrink much.
Of course it's summer now you may not have any left by now. We had the advantage of a very cold winter when I did my chemo.
I sure thinks will get better good luck.
Hug e
My hubby say buy dry ice at an 'air gas oxygen supply place it's way cheaper. We did not have that option
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Cali58,
Yes, if I could have you PCC assistant's name and contact info I would appreciate it. I can't imagine that someone down here doesn't have freezers. I know they are common in LA, but I am not sure about here. I just found out who my Oncologist will be so I will ask her when I have my first appointment.
I'm going to look into Tower Oncology though I think LA is too far for me.
How did the caps work out for you
Thank You!
R
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Harrysmom,
I like the way you think. Especially if the place has freezers, I think maybe I could manage. BUT I bet I will get sleepy. To your point that would suck, but not as much as a grumpy husband. I'm impressed by yourget it done attitude. How have the caps been working?
R
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redeesides - I manage all of the cap changes myself. The one thing I bring with me that I couldn't do without is a mirror about 5 or 6 inches wide that has a stand. That allows me to ensure that the cap is on properly and that the velcro straps are in the proper locations. My ex-husband is at the hospital with me to rotate the caps in and out of the cooler, but I do it for the four hours after chemo once I get home. It would probably be tricky while getting the infusion, but it can definitely be done. Maybe your husband can just rotate the caps while you handle putting them on your head? You can always practice once you get your kit to see if it's something you can do on your own. I know a lot of people say they take Benadryl before their infusion and that makes them so drowsy that capping by themselves would be difficult, but my MO told me to take Claritin which doesn't make me drowsy. I would run it by your MO if you're planning on capping on your own.
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Hi everyone - I'm a newbie to the discussion groups and so thrilled to find all the great information and positive support posted! I'll be starting CT every 3 weeks for 4 sessions in July, and my med onc suggested penguin cold caps. I've seen the info on what they are and how they are applied, but I'm curious what they feel like. I am pretty susceptible to cold - car heat seat on pretty much year round
- and the thought of wearing a minus 35' helmet for 8 hours seems awful. Can anyone tell me how it feels? Penguin website says something about wearers getting used to it after the first 10-15 minutes, but I don't really believe that can be true.... Thanks for any feedback!
Denise
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Denise/Willow 22 - I'm glad to hear that your oncologist actually suggested using cold caps! When I used them, nearly 5 years ago now, my oncologist never said a word despite the fact that my facility has a medical freezer and a room dedicated to cold capping. I only found out about it by accident. Anyway, to respond to your question, the caps are shockingly cold at first, but in not too long your head gets kind of frozen so you definitely don't feel it as much. For some reason, my second cap of the day was the worst. I wore warm clothes and had an electric throw to keep me warm. In addition, the chemo chair had a heating element. Some people take tylenol or ibuprofen or something stronger to help with the initial pain; I take tylenol regularly for arthritis but didn't need to take anything more. Overall I think most people tolerate the cold OK.
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Willow- I am on round 16/18 Taxol/Carboplatin. I have worn this caps 16 times. I can't even believe it.
They are cold, but not unbearable. I powered through the first half, but now that I'm towards the end, the thought of the caps leave me with a visceral reaction. But I've done this SIXTEEN TIMES, so it wont be nearly as bad if you're just going for four.
I'm at the point where I really really dread putting them on my head. But my results have been amazing! It is painful, but it's incredible how quickly we forget the pain. I suffer 9 hours once a week, but the caps have allowed me to keep 95% of my hair. Completely worth it.
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Hi Willow tge temperature is between - 28 to -32, it feels cold the first 5 minutes. But it is doable. I wear winter boots and a blanket. Yesterday my surgeon saw me after my first chemo and she was impressed i still have hair. Although yesterday i had the big shedding and i cried alot. I still have hair and nobody notice it. So if you can do it.
Good luck.
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Thank you ladies - hearing it from someone who's actually worn the cap during chemo makes such a difference to me! Sherryowang - 16 of 18 treatments done - you are a wonder woman!!! 95% sounds absolutely wonderful
Vivianlu8 - what is "the big shedding"? I've been losing a bit of hair during the perimenopausal process already, so I'm worried that if I shed a significant amount I'll look very straggly and patchy....0 -
Vivianlu8
I'm so sorry for the not getting to do chemo today and also the loss of your hair. A hair net really helped me during cold capping for tangling and getting hair stuck in the velcro. And I've been there on getting to medical center for chemo (with dry ice) and not getting to do chemo. It sucks. In my case after cold capping for 2 hours, my MO decided I was too sick for chemo that day and I came back the next week. Then my whole schedule for the rest of chemo had to change (childcare and people to help with the cold capping).
But there was one bright spot that came from that day. The delayed radiation moved my window for surgery back a week and I was able to go on Spring Break with my family. I hope you find a bright spot in the end.
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Usually the shedding starts 20 days after the first chemo that is when everybody have to shave their head becsuse you start loosing your hair. Everybody is different. I have curly hair so it tangled so much that i spent 6 hours in a hair salon to detangled and that hair was the one that was falling and was inside near the ears i guess because the cold caps dont reach that part but i still have all the hair so it covers the bald spots inside. You have to make sure to wear the cold caps and fit them with the gelbands very tight to your head. They said that although you loose hair the cold caps help for the regrowth during the chemo. So if you really dont want to loose your hair at all and shave it is worth it. You can cover the bald spots with Toppik. and find some tricks to deal with this.
I hope you can find this tips helpful.
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Vivianlu8 - I did cold caps (Dignicap) during chemo and kept most of my hair through treatment until around the last chemo infusion and in the weeks after. My hair became so tangly it was unreal. My hair became like velcro. I was literally pulling sections apart trying to detangle my hair (I thought it was because my hair is already curly). I was afraid I was going to pull it all out trying to detangle it after shampooing. I think the thing that literally saved my hair is Ouidad Melt Down Extreme Repair Mask. For some reason it worked when nothing else did. It's a bit pricey, so I'd never used it before chemo. But after all the money spent trying to save my hair, the price seemed like nothing. The mask smoothed the cuticle of my hair and seemed to somehow snap it back to normal.
I don't know if it will work for you, but I was desperate when I tried it (it was weeks after chemo and my hair was heavily shedding and coming out in clumps). It still took a few weeks for shedding to return to normal, but I felt like at least I wasn't losing hair through a detangling nightmare.
My last chemo was January 12th and I lost probably 40% of my original hair volume in the weeks post final infusion (my hair was a bit thick to begin with - though I didn't appreciate that fact until I realized how thin it could get). I lost all of the hair around the perimeter of my head (where the cap didn't touch). I had to wear hats, scarves and headbands for about 2 months. But no one at work knew anything was going on with my hair (just thought I had a thing for hats, and when asked I just played it off that my head got cold, since it was winter still).
I definitely consider my cold cap experience a success though. My hair has grown back in to where I don't feel uncomfortable not wearing a hat. And strangers still regularly compliment my hair (which always catches me off guard b/c I know what I've been through with it). I would say that I have maybe 70% of my original hair volume currently (though a lot of the new hair growing in is much shorter than the rest it blends in). Most of my shedding was in the front and crown (like male pattern hair loss). But I never lost all of the hair in any area (though some parts got really, really sparse). So the parts of my hair that are growing back in and thickening up are able to be camouflaged by the surrounding hair.
The only issue is that I'm having reverse "chemo curls." Instead of starting off with straight hair and ending up with curly hair, I already had very curly African American hair, but the hair is now growing in way looser than normal and with very little curl to it. I started taking MSM for my joints following chemo and I know that causes hair loosening for some, so I'm not exactly sure what's the biggest culprit. But since I only wear my hair in ponytails I can keep it from being too noticeable.
In case anyone is curious, to help with regrowth (especially once my shedding went back to normal), I started taking Viviscal and 10,000 mcg of Biotin (in addition to MSM and the vitamins my MO recommended at the beginning of chemo - D3, Vitamin E and B complex. I'm also taking Iron). I also used Women's Rogaine foam (I used it daily for about a month and now I use it maybe once a week. I don't want my regrowth to be solely dependent on Rogaine).
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thanks for all the info! As I was reading it, I realized I have another issue - I use a Cpap machine at night, and the mask is held in place over my nose with adjustable fabric straps. Unfortunately, they need to be snug.... if I wore a sleep cap underneath, do you think it will be enough protection for my hair
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