Cold Caps Users Past and Present, to Save Hair
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I had my first chemo Wednesday with my first cold capping. It was a brutal day for me. I was so nervous I didn't eat enough in the morning I think that started the whole day on a bad note.
It was a learning experience for all of us to do the cold caps plus all the chemo. I have 4 rounds of the AC. Then 12 of the T.
The first cap was -26 and tolerable I thought this isn't so bad. Well the next was at -32 which was a huge difference. I was told between -30-32. I did make it through and they seemed to get a little better each time but still hurt every change.
I cried when I watched the red devil chemo going in something about the red and the big syringe.
I do not do well on meds they upset my stomach and they gave me nausea meds before we started. I started to feel nauseous a bit and my head felt like a migraine but I endured.
We made the decision to drive home after chemo to finish the caps. I think that was a mistake as we had to get me up fast and out to th car then drive then stop half way get another cap but we made ithome.
I started to panic when I could hear my husband preparing the next cap. I made it half way through my second to last cap and tore it off and threw up about 5 times. Hopefully that was long enough because i was done.
I ended up having to go to the ER and get hydrated by the IV. I told myself I was never going to cap again but I calmed down the next day and tried to go over the mistakes we made.
I know I need to eat more and finish the capping at the hospital. They are going to hydrate me after the chemo now at the hospital.
I did take Tylenol before does anyone have any tips or suggestions? Every time I think of those caps I feel ill but I really want to try again.
I think they may have capped me too tight so it gave me a headache. How tight does it have to be? Can I lower that temp to -28 or something and be effective?
Thank u in advance my cold cap sisters
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Hi,
GoKale here. I'm on Taxotere and Cytoxin, and I have had two rounds with two more to go. I have cold capped during these two rounds, and have had heavy shedding. Recently, my head has been tingling so I wonder if I am going to continue to shed heavily and lose too much to make cold capping not worth it. Has anyone else's head tingled, yet not lost so much hair?
Also worried about neuropathy. Just today I notice if I sit with my toes bent, my toes go numb.
Thanks for any thoughts on this.
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MJPow,
sorry to hear you had such a difficult first round. One thing they do here is give me fluids in the IV, then anti-nausea medicine before starting the chemo. I also drink a cup of coffee since I will get a headache without it. I don't think the cap has to be so tight - it just needs to be touching your whole head. I was told that it is painful for the first 20 seconds then it gets more tolerable. If your cap stays painful, maybe loosen the straps a bit.
Best wishes for the next time.
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il33, your hair looks amazing. I'm 3 weeks PFC and your picture gives me hope.
For the new cappers. Good luck to everyone. I know it seems hard and challenging but its doable. I think the capping gave me more anxiety than the actual infusions.
Hugs
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GoKale, I had a big shed for about a week around my 2nd round of TC. My head tingled when I was shedding heavily. It has slowed to a lighter shed and I have my last round this coming Wednesday.
MJPow: I'm sorry that you've had such a rough time. I hope your next round goes much better. Just make sure that the cap has contact with your head, but don't have it too tight. I will agree that it hurts every change. Mine are usually around -32 and I hate it! For me, the first round was the worst because I didn't know what to expect.
IL311: You look great! Thank you for posting! I can't wait to color and style my hair after all of this. I'm just not sure how long I need to wait after my last round. I'm pretty thin on the sides and styling would go a long way in making it look thicker!
Harrysmom: I'm sorry that you need to do this again, but also glad that you have the cold cap option to help you feel "normal".
Pamela: I just hope my poor eyes stop watering so I can line my eyes. I've had such watery eyes that my liner won't stay on! I guess it's a side effect that I'm getting. I hope it goes away before my lashes do! Your hair is coming along great! I can't wait to see some growth in my bald spots! I'm really getting worried about my final round on Wednesday and how much hair I'll lose!
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MJPow,
Sorry your first time was so stressful, but there is so much going on that it is bound to be. Good advice on the extra fluids, that helps tremendously. I drink a ton of water, every day and swear that it helps with all of this. I usually eat some toast or some kind of carb prior to infusion to help settle my stomach. I also have been taking an OT pain med for the first capping, like you did and I too have some coffee (half real/half decaf.) It is just very cold for me for a few minutes then goes away. I adjust the cap chin strap every time as well and use my hands to hold the cap on top and press it down all over when I can. We can only do the best we can do with this and I try not to worry about it too much. Most of these ladies have had great success from my perspective and we have all had the same hiccups that you have had. I consider this a science experiment to put it in perspective.
I live literally 5 minutes from my infusion center, so we have time to get out of there and back home to cap again. Much easier to manage it at home without an IV hook up to my port. But staying at the center in your case seems wise if that will help keep the flow going for you. Plus, they can continue with fluids and get your nausea under wraps. That is key to recovery after an infusion. It sounds like your session went pretty well over all, if you read back in the threads you will see others who had mishaps too. My last infusion was Tuesday and the last two caps were not cold enough, not sure what happened with my ice and capper buddy, but that is the way it goes. I kept them on longer and crossed my fingers.
There is a chemo string on here as well you might want to join for ideas on the medications and tips. For us cold cappers, we have two things to worry about - hair and the meds. I have found it helpful to review both. The Side Effects of the drugs are noted and some great ideas on how to mitigate things before they happen.
Congrats to everyone on here who is doing so well! Very inspiring to us newbies and thanks for sharing so much. I have a tingly scalp and on day 18 post chemo so know I will be shedding soon, but figure I have not done anywhere near as much to my hair in the past month, so hoping it is the 180 hair follicles that were ready to go anyway according PPC. I have reread their literature so much I think I could spout it off in my sleep. It sure felt good to wash it yesterday and get the chemical smell out. Not much came out in my wide toothed comb, yet. 2 more AC to go . . . . I ordered Daniel Fields also. Has anyone used it DURING chemo? Please say yes. I have the powders, markers, etc. but am holding off for a bit until the big shed comes in to see what I have left.
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IL311--You look FABULOUS!!! Thank you so much for your generosity of sharing color cover up tips. You are so right--this forum has been a life-line for me. Everyone has been so good to share color/coverup experiences, styling, makeup and nail tips. It has given me the anecdotal evidence I needed to try some gray coverups and light styling products, so far with no bad effects.
Pamela23--WOW! Great new growth! From your styled photo, no one would ever know you have this "thin" spot, and it is certainly regrowing quickly. You look great! Thanks for all your support.
MJPow--I find that the capping is more anxiety producing than the infusion! (It actually distracts me from the real reason I am there) I am on a weekly taxol, every third week herceptin, so just finished week 7 treatment yesterday. I can assure you that the capping gets easier every time. My husband and I acknowledge that we are doing the best we can do; it is certainly better than not doing this at all; we learn something new every week. My PCC rep is. Geralyn. I have found her to be very accessible by phone--I would ask her about your concern that the the caps are too tight. It is so important that you can tolerate the process. I have been fortunate with no nausea--but I can share that I felt the worst after week #3 when I completely forgot to take a snack or sandwich to the infusion center. Instead, I snacked on what was available there--Lorna Doone cookies, punt butter crackers--nutritional nightmare. Once arriving home, and eating an early dinner, I felt so much better. We do all capping at the center. We tried once going home, and it was too stressful, rushing to get in car, get through traffic etc. Last bit of advice--definitely stay hydrated especially on infusion day. I drink about 3 liters of water. PCC recommends 16 oz every hour of infusion. With your nausea, I know that may not be possible, but perhaps the nurses can help you with Meds. Good luck--you can do this!!!
Catgirl2--Congrats on last one this next week!!!!!
Lovesgreenthings--Great advice. And I too an interested as to how soon anyone used the Daniel Field product, how it covered grey. Sounds like the Clairol product purchased at Sally is the most widely used
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Hi Everyone, I'm interested in the Daniel Field color. I'm going to have to do something as soon as I feel safe. I will not be able to wait the recommended amount of time or I'll be house bound! My grey is very hard to cover and my hair stylist is willing to try anything I feel comfortable with. I doubt anything will give me full coverage except a permanent color, but I'll try a safer alternative.
How soon after the final round has anyone colored?
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MJPOW---I was given anxiety meds to take through chemo. I had the dignicap cold capping system and I believe that the anxiety meds, Tylenol and tons of water really helped me get through both chemo and cold capping. I don't know if that may be something you would like to look into and if your oncologist will prescribe. Just a thought!
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MJPow, I feel for you. I had saline and chemo dripped into me at the same time, so that I stayed hydrated, in addition to drinking lots of water. Can you ask about getting getting hydrated at the same time as chemo. Your doctor should be able to get you on the right amount of meds for nausea during chemo. I took a whole lot of anti-nausea meds before AC given to me by the nurse. Even when I didn't drink much, I still had to go to the bathroom, due to the saline being dripped into me.
I think anti-anxiety meds really helped me stay calm during cold-capping. Also having the right equipment. Heated blanket, pillow and laying back (all the way) in the chair at the medical center. You need to take the weight off your body and let the chair take it. It is still not fun. I took Tylenol once to see if the pain would go away, no difference for me.
I too had to change cold caps on the way home. We had a planned stop at an IKEA parking lot ,which is better than the side of the road. But being home was way better than being at the medical center. For one thing, I could lie on my side on the couch, which I found more comfortable than lying back in the chemo chair. I was at home and that felt better.
Cold Capping is brutal and for me it didn't get any better. I got more anxious, (thus the need for anti-anxiety meds). I think staying calm (and being well medicated for nausea) are the two things that helped me thru this.
I just had my last chemo 6 days ago, and send those cold caps back!
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Harrysmom--Wishing you the very best with your next Taxol treatments!
Pamela23---my new growth looks like your photo only I have both temples and top of my head. I'm going to look really funny as it all sticks out on top but not going to complain....so thankful to have kept most of my hair
Wish my fingernails were doing as well as my hair. They are still yellow, flaky all sorts of lines and blotches on them. Hand neuropathy has improved but my feet are a disaster----terribly painful and the more I walk the worse they are 
----Hope your Rads are going easy on you!!IL311---So great to see your Awesome photo! Gives me hope of my hair looking normal again! Most of you are dark haired and using color. I am a blonde with now lots of gray new growth. Have always highlighted to have a brighter blonde and now that I am 5 weeks PFC want to have the gray highlighted but worried about damage.
A huge Good Luck to all our New Cold Capping Friends
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catgirl2, i waited the full 3 months (per penguin cold caps) it hard to see the colors online i went with the darker shade because that was my original color coming in (along with gray) it covered very well. it stayed in for about 5-6 weeks then i bought more and went with a lighter shade and i found it didn't cover as well. its about 8 month PFC and I think i am going back to the regular color from my stylist.let me know if you have any other questions.
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wow thank you so much to everyone for all the info!! On Wednesday I swore I'd never look at a cold cap again but Thursday I looked in the mirror and thought let's fix the mistakes and try again.
I talked with my doctor assistant and they are going to work really hard to keep me hydrated during and after treatment!
I messaged my cousin and asked her if she had any panty liners for my ears. After I wrote it I just laughed because it sounded so funny! Cold cap humor we call it 😂😂
💪💪💪 stay strong ladies
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MJPow--I'm glad you'll give it another try. I threw up on my first round 5 minutes before the last cap was due to come off. Penguin said to hydrate starting 2 days before so I filled up a 2 qt pitcher of lemon water and made sure I drank that each day prior. I also read to drink a cup of water every 15 minutes during so I made sure I drank a bottle of water every half hour. I also took a xanax the mornings of chemo--mostly because I think the IV is the worst and I've been known to pass out from them as well as an Exedrine Migraine. I brought snacks and lunch with me so I know I didn't puke from an empty stomach. They put in anti nausea meds but I think it's just EVERYTHING that day, and with you not eating much on top of it, it was a really crappy experience for you. But it is SO worth it. There were some pics on pages 595 and my hair is on pg 596. Seems people have lost anywhere from 30-50% of their hair but only we can tell. Stay strong, you can do this!!!
Looking at the other posts after you posted, looks like most of us use an anti anxiety med (which is funny because the chemo part is actually noneventful) and an OTC pain med and lots of water.
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MJPow - Wow do I feel for you and your misadventures (understatement) of your first chemo. I had a similar experience though not as bad. I threw up during the first infusion which seemed to surprise everyone. It didn't happen at subsequent infusions so fingers crossed that may be the case for you. What helped a lot was cannabis spray. I see you live in OR. It might be worth checking out if you're so inclined. It wasn't knock -your- socks- off phenomenal but it took the edge off the nausea and anxiety in a way the other drugs (ativan, steroids) didn't. Also be sure you have a neck pillow. Those caps are not feather weight and weird pressure on the cervical nerves/vertebrae is enough to cause nausea for some people. I agree with lovesgreenthings - loosen the chin strap a bit and just press down on the top of the cap to feel like you have good contact. That chin strap was killer for me and I felt much sicker if it was too tight. Best of luck to you.. it will get better.
IL311 and Hangin in - you look fantastic! So much good hair around here.
Pamela - your new growth is great. Once it springs up a bit more you'll be surprised what a difference it makes to the overall feel of your hair. It didn't take much for me to learn to love the mullet.
Catgirl and others worried about gray - the gray thing is rough. I'm not a risk taker by nature and didn't stray off the 3 month PFC mark for color. I just dreamed about it every day. But, Catgirl, I have dark hair like you and got pretty nice coverage from Framesi semi-permanent , which happens to be my usual color . It does have a little bit of peroxide and ammonia in it but my hair felt soft and looked healthy and shiny. The color lifted a bit at the roots but not in a way anyone but me would notice. Anyway, you might not need permanent to cover well, and a semi permanent will keep you "safer" while l your hair gathers strength. You could ask you colorist to do strand tests with different options. I did that, waited a week for something horrific to happen and was happy when it didn't. That gave me confidence. Also, there's another (inactive) thread on here called Life After Cold Caps that includes post chemo color info. Framesi was mentioned quite often. I think a number of people used it about 4-6 weeks out. One of the ladies here, KD2016 (dark hair), colored 4 weeks PFC. Her colorist kept the color off the scalp and she did really well.
So, HAIRPRINT. https://www.myhairprint.com/ Has anybody heard of this product? My acupuncturist recommended it. It was developed by a guy here in SF and is made with all natural ingredients (no chemicals). It's supposed to return gray hair to its original color. Only works for brown or black, although other colors are in development. I'm so curious. It strikes me though that if this were the holy grail for gray hair coverage then the company would have had a plethora of investors. And we'd be well aware of it. I may try it anyway just to see if it works. I want to find a less toxic approach to hair color - maybe Daniel Field will be next.
I had my second hair cut and color PFC today. My hair is thicker but it's still fragile and not behaving like my pre BC hair. Still babying it - no blow drying or styling products. Washing just 1x per week or it's the finger- in- the- light -socket look. Still wearing it up which makes it look normal (ish) and helps me forget about it. And still so grateful that I was able to cap.
You are all amazing. So much love and luck to you.
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Can I get advice on Toppix? I just read some of the threads on Toppix and watched videos and read the website.
How long does it last? Only until the next washing or some other amount of time. Does it wash out or is that stuff stuck in your hair.
Did you order the darker of 2 shades? That is what I'm thinking would be best. (Dark brown, vs medium brown)
I had my last chemo 8 days ago, so I'm probably not technically PFC until 14 days. I'm worried about having thinner and thinner hair before my own hair starts to grow back. Maybe this is something I need to order instead of a chemo cap. I will be on vacation for Spring Break and I want to have some solution incase my hair keeps falling out.
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Hanging_in_there: I started using it before I finished chemo and didn't notice any additional shedding from it so you should be fine. Once you put the spray on it, it will pretty much stay to your next wash. I never noticed it coming out on my pillow case or clothes. I ordered medium brown and a dark blond to give it some contrast but I have highlights in my hair.
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Everyone has been so helpful on all of these threads. I wish I would have joined sooner.
MJPOW--- another suggestion to the ones given is bring Gatorade -- G2 with you to chemo. My nurse navigator suggested it to me to help stay hydrated. I also bring water. I found I had to loosen the chin strap ( having a pad, cotton, or anything under the strap helps), if it was too tight and I couldn't swallow, I would panic. Best Wishes for next time.
My last chemo is tomorrow. It will be interesting to see how much I shed.
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Good luck on your last chemo tomorrow MichCali, what regimen are you getting? Hope it's smooth sailing through your last round of SEs!
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Thanks Pamela23, I appreciate it! My regimen is: 4 rounds of taxotere and cytoxan. I was very lucky and feel blessed I only needed the 4 rounds.
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That's what I did, MichCali, we are fortunate! High Oncotype score?
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I didn't have the oncotype done. It wasn't offered to me but My tumor was 8mm, grade 3. Are you finished with chemo? I hope you're doing well
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Yes, 8 weeks PFC. I will start my 5th week of radiation this week out of 6. I researching Tamoxifen and dreading doing more foreign things to my body, especially for 10 years!
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hi all,
I haven't been here in awhile and had a lot to catch up on! Seems like we have lots of new folks on here. It makes me happy word is getting out about cold capping. The local news did a story last month about it and it was too bad they didn't interview someone after the entire process. They made it look like you just wear a cold hat during chemo and that's it. As we all know, it's a huge, exhausting, and stressful process.
Tunegrl- a few pages back I saw that you had return of ovary function after a Lupron suppression. Yay!! I know how great that news feels! I'm 46 and had no signs of menopause at all. I refused to let my ovaries die without a fight. I only had roughly a 50% chance of it working but without Lupron I only had a 20% chance of not going into permanent menopause. My oncologist let me do Lupron and 6 mo the after my last chemo, I had normal estradiol levels after having zero estradiol for 6 months. I was so happy! I haven't had a period in a year though but my doc said it's just the tamoxifen doing that. I think they are working pretty normally too because I can tell when I ovulate and it's pretty much on schedule like before chemo. I still get hot flashes but they aren't too bad. About a week before I'm supposed to ovulate my night sweats come back. I guess it's because estradiol levels are lowest at that point. I take clonidine before bed and it helps a ton! Plus it causes drowsiness. Bonus!
Ok so the reason I came here- has anyone tried microblading? I'm getting it done next week! My best friend got it done and it looks like real eyebrows! I was not blessed with full brows to begin with and now after chemo they look even worse. I'm tired of this cycle of losing all my brows and lashes every 8 weeks because of chemo putting them on a weird growth cycle. Microblading will fix that. I've never had facial tattooing and have never seen anyone with tattooed makeup that I thought looked right so this is a huge deal for me. I'll post some before and after pics when I do it. I think it would be great marketing for aestheticians to advertise at cancer centers. I would have done this before chemo had I known about it.
Ok that's all. Have a great week everyone. Stay strong, persist, and God bless. 💕
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hangin in- I used Topix for special occasions and it stayed put until I washed my hair. It worked great! Absolutely hid my bald patches! It gave me a bit more confidence even though I felt like I had troll hair. And I slept on white silk pillow cases and it never came off on them.
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So, my big shed started yesterday. I'm trying to remain calm since everyone has warned me about this. My second chemo treatment is Wednesday. I was asked a few time yesterday if I'll keep cold capping and of course, I said yes! I'm in it for the long haul. I believe I'll be shedding a lot for about a week from everything I read? I'm a little concerned about shedding like crazy on Wednesday when I'm cold capping. I'm using a hairnet which I hope helps a little but I have long hair and last time, my hair sometime got caught up in the Velcro. Anyone have any solutions for hair not getting caught up in the Velcro?
One more question, before I started cold capping I visited a wig store just in case. I was upfront about trying the cold caps first but wanted to be prepared in case I needed a wig so we choose 2 wigs. She ordered both in but said I had no obligation to buy. Well, the wigs are in and she wants me to stop by to try them on. I'm a little scared to try them on while I'm shedding so much. Any thoughts? If the "big shed" lasts only a week, I'm thinking about pushing back my wig appointment to next week when it slows down.
Wow.....I'm such a low maintenance person that becoming high maintenance in regards to my hair is so weird for me. I'm so paranoid I'm always saying "be careful for my hair" to my husband and kids.
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STLgirl - on hairnets. I did not even know to use them until the last 4 treatments, my cold cap rep, never mentioned them, I got the info. from this board. But that being said, I have long hair and one hair net, was not enough. I finally figured out that I needed 2 hairnets on top of each other to work. Two was much better than one.
I used to be low maintenance too about hair, now I don't want anyone to touch it, and do not look forward to my once a day combing where more hair comes out each day.
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michcali and hanging in, congrats on finishing chemo. Must if all finishing cold caps. Now the waiting for our hair to go back to normal. I'm 3weeks PFC and just want my hair back. I hate it. It looks so thin and dry plus my hair is short neck length.
Runner, I did the microblade on my eyebrows about 3yeara ago just because I wanted my eyebrows to be filled in more. It was called 3D eyebrows. The do them like hair strokes. You will go in the day of then go in 1-2 more times to touch it up about 3weeks after your first session. I just scheduled a new session. I go in the end of April. The place I go to is always so booked and like 45 min away. But well worth it. Good luck. It does not hurt .
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hanks for the encouragement!! I will definitely use your tips
I actually feel really good today have been getting back to short workouts and drinking tons of flavored water. I used to love water alone but the taste is awful right now!!
I feel good that some of you were sick (not that I wish it on u) on your first chemo but did better as you went!
So I can wear a hair net during capping to stop the catching of the hair in the Velcro?
I am thankful for you all!!
💪💪💪 stay strong M
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Hanging in - thanks for the info on wearing 2 hair nets. I'll definitely do that Wednesday. I ended up ordering a box of 100 so I've got plenty
Today has been a shed full day
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