Cold Caps Users Past and Present, to Save Hair
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chilialli, if you go through penguin I know your rep should have a list of cold cappers. They are expensive about $450 per infusion.
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VivianLu...I hate where you are right now. I was there. My oncotype came back in the dreaded gray zone of 23 and so chemo was a GO instead of a NO. I, too, didn't tell many people and wanted to keep everything on the down low. I cold capped with Dignicap but lost a lot of hair due to a bad fit of the cap. As much as I wanted to keep things quiet, eventually I had to spill the beans.
One thing I've learned is that everyone tolerates chemo differently. My rounds were on Friday, 4 of them that were three weeks apart. You are usually fine for two days due the steroids they have you on for the couple days following chemo. If chemo is day 1, steroid days are 2 and 3, it was the next day that I was feeling very off. I am the poster child for horrible chemo side effects so I won't bore you with that...most women do just fine. You might be tired, you might feel numb and tingly...you may have constipation or diarrhea (who knows!)...you could be tired or a little nauseous. You might not sleep well. Hopefully you have a good rebound and are feeling great for the last two weeks until it is time for the next round.
Take all the advice you can. Buy the stool softener AND the immodium. Be ready for anything. Come to chemo prepared...my DH and i looked like we were tailgating with a big wagon full of stuff ... LOL! Drink water water water and get your rest. I finished on 4/28 and I hope I never have to do it again. Good luck. Stick around here, these ladies are invaluable.
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Hi Monica,
I'm so sorry that you have to join us on this journey. I did Penguin Cold Caps and it was so much work, but I feel that it was worth it. I kept 50% or more of my hair. I had thick hair to begin with and I can tell it's thin, but most people can't. My daughter is graduating from high school and I wanted to look somewhat "normal" for the occasion and I feel like the caps were worth that. The cost will depend upon your type of chemo and how long you will need the caps. I had a $500 deposit plus first month rent of $580 for the first payment. Then it was $580 a month. I only had mine 2 1/2 months. They refunded me the $500 plus a partial months rent when I returned them. My total cost was around $1400. That doesn't count initial shipping charges of $50 or the dry ice each time.Dry ice was around $65 here. I know some people actually had companies give it to them for free.. I had a cooler like the one they recommend, so I didn't have them send one. You will need someone to be your "capper" every time you go in for chemo. My fiance went in each time and changed my caps every 20 min. for about 8 hours each treatment day. It was a lot of work for him, but he was awesome! My MO was not real big on the cold capping, but I told him I was doing it or going elsewhere. In the end, he was quite surprised that I was successful in keeping so much hair. Feel free to ask any of us questions. This thread is great for tips and support.
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Thank you poodles, you are so helpful in this sad cancer journey. What cold caps do you recommend penguin or artic, i would really like to be sure which one works better. Penguin is more expensive But if i am going to do it i hope it works.
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Vivianlu8,
Check out Rapunzel Project, they have a rating scale on the cold caps. Penguin seems to be better for AC chemo, which I just completed. Lost about 15% of my hair on that and still doing taxol so do not know the final results. Penquin caps mold to the scalp really well and I think that is the advantage. Artic has great customer service however, they use the elastogel caps and that has not been as good for us AC people. Others have done really well with Arctic.
You are lucky to have a long break between chemo infusions too. The chemo boards on here are great and very helpful, check out the one that is starting for the month you start chemo. I am with the February group and we have all become very close to each other and are "staying" together past chemo to be each others cheerleaders for all the steps that follow chemo. I am the only cold capper so I just come here for help and this group was a lifesaver for me getting started.
Someone asked about hiring a cold cap helper. I hired the DIL of a friend of mine to do it. I needed someone consistently for 16 sessions and while I had friends and family offer, I felt better paying someone to be there each time rather than have them take so much time off work. I pay her $13 an hour and it has worked out great. So, think about people you know and who might be looking for extra money. I also have back up people for each session in case my capper can't make it, which has not happened yet thankfully. The Penguin people charge a lot for their cappers as someone else pointed out but I am sure that they do a good job. There is a new website popping up everywhere, called Nextdoor. It is local to your own neighborhood area ( a few square miles.) Maybe you could advertise there and see if anyone is interested? At the very least, someone might know of someone. Or a HS student looking for work? The key for me was getting someone who lived close by to me since we cold cap at home after infusion. My capper lives 4 miles away.
I hope all of this helps!!
Monica, you are WELCOME for the help. As I said, the ladies that went before me were super helpful and I need to pay it forward in droves to just begin to thank them for their support. And remember, after the first Cold Cap day, it is all good - but the first one is a bit of Keystone Cops as mistakes happen.
Anne
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Ladies,
Just an update. My blood counts plummeted so round #10 is delayed. Hair is consistently shedding on this taxol. No one else can notice, not even my close friends and family, but for me, I can tell. My hair is literally down to my butt though, and the ends were already thinning from years of styling/chemical processing, so I bet if I cut a couple inches off it would thicken back up.From everyone's experience, when does the shedding usually taper PFC? I know everyone is different. I'm just wondering when I can start to shower and style again. Wow DREAMING of the day.
ChiAlli- I wish I could help you! I was first treated and diagnosed at Northwestern, but moved my care to Columbus to be closer to family. You could even post a craiglists posting under odd jobs? My mom helps me every week. She is an angel. It can be very cumbersome, and having someone who can transport 60 pounds of dry ice etc. is helpful.
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When does your hair start growing back in general? I'm sure it depends on the treatment.
I am done with the 4 dose dense AC's and just finished my first taxol. I had anticipatory nausea so I started to gag right away when they put the caps on my head. They put nausea meds in me that knocked me out for chemo which was fine with me I was worried I wasn't going to be able to have chemo Wednesday when I started to get sick.
I noticed by my ears is where the hair is mostly gone I have a good layer on top so it just looks thin for the moment! 11 more taxol to go!
💪🏻💪🏻
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Hi Everyone:
I have my 1st T/C chemo on 5/22 I'll be using the Arctic Cold Caps. Any suggestions on hair care (shampoos, products) will be greatly appreciated. My fiancé will be my cold cap "administrator" and if you have any suggestions to smooth the changing process, please send them.
Kim
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This info about AC and penguin is really helpful. Thank you. I have been trying to get their rep to respond to me. I am considering switching from arctics. Can't say I have been happy with them. If anyone else has had experience with cold caps while on AC, I'd love to know.0
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I read the rapunzel project and i did not see the rates of success between the Artic and penguin but i am not sure if penguin provides the freezers like the Artic does. I will be very helpful for the newbies in this forum if they could share which company they used and what is your result. We will definitely appreciate that. I am also confused because in some article it says you cold cap for just a couple hours and here i read others for 8 hours, that is too much. Please help. !
Thanks.
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Powerpuffin- I just finished 4 AC's and probably lost 35% -40% of my hair. I have very think hair. I could not do the full 4 hours after infusion because I was sick every time but did manage at least 2.5.
I used acure shampoo and conditioner as recommended by others and also a spray in conditioner as with AC your hair gets extremely dry at least mine did.
I just started 12 taxol which I hear is easier on your hair... hoping and praying!
If you look back on my posts I have one a few pages back with specific stuff I did.
I chose penguin as the reviews seemed the best for AC.
My shedding seems to have slowed a bit hoping it slows more!
The ladies on here are amazing and have made my journey easier than going alone.
❤️Mj
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hi amaploa, I colored at 10weeks PFC. Which was a week ago.I would not recommend doing balayage just yet. I noticed my shedding slowed down like at 5-6 weeks PFC.
Vivianlu , penguin stated to wear the caps 50min before you start your infusion and 4 hours after you've finished your infusion. I know these are long days. I dreaded my chemo days mainly cuz of the cold caps.
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I'm having problems with large flaky patches of scalp along my hairline. Any recommendations? At my last infusion they suggested I go down to one was a week as I am still shedding but now I have this issue. How do I only wash once a week and deal with flakes like this? Grr I was thinking of just applying vitamin e to the patches but will that affect my hairline? It's of course across my forehead not the back or something I can hide
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mquara I think those flakes are frost nip. Maybe try more insulation up near the hairline.
I got big flakes at first from super cold lumpy cap. Hubby got better at smoothing the cap and did not keep it as cold. He raised the temp and changed it more often. If you feel a really cold spot it could cause frost bite.
Not suggesting you mess with the temp unless it is just so cold you are frostburning your head....my hubby raised the temp after I got serious frostbite on my ear. My ear was covered but it got wet. He insisted that a warmer cap with more cap changes was better. I was worried about the temp the whole time. He would check my scalp temp in between cap changes and my scalp was coming in Between 57f to 62f we aimed for 60f. There was always a little film of ice in my hair in between changes. With elastogel you wet hair and wear a shower cap. Our caps were only -20f not as cold as reccommended but we changed every 15 minutes.. a total hasssle but we got scared after the frostbite. There was no question my scalp was super cold with the visible ice in between changes...
If the cap is so cold that it is stiff you might get gaps and frost nip..
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amapola-don't get too frustrated. Just keep using toppik. Try to be patient with your hair. don't mess with it too much like I did. My hair is growing back filling in completely now at 7 weeks.
I don't wash much. I rinse with warm water fast then rinse with really cold water.
Wait a little longer until you stop shedding. You want to keep as much hair as possible. Have you been taking a hair vitamin? I thin Viviscal is working wonders for me. My eyelashes and brows are starting to come back.
Cvs has viviscal.
Hang in there
Hugs
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Vivanlu8,
The information on Rapunzel Project is not super clear, but they do discuss their success rate with AC on this page. http://www.rapunzelproject.org/ColdCaps.aspx. I asked the smart ladies on this board a lot of questions and made the decision to go with PCC based on their success and what I had read on Rapunzel. I started in February and there was a special at PCC (due to competition?) so I pay $495.00 a month and they supplied me with everything including the cooler. I did get a new thermometer to measure the caps temp as the one they supplied was not very good. Bought it at Home Depot and glad as it is very accurate.
Penguin sends a list of instructions for the chemo you are getting. For AC they recommend capping for 5 hours AFTER infusion and T is 4 hours after infusion. I have not had trouble with capping so have managed to do it for the length of time recommended but it is a long day of being alert and helping my cold capper with the change and keeping the timing going correctly.
Anyone who has specific questions is welcome to PM me, glad to help.
Anne
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Happy Mother's Day! here is my hair after 4 AC's and one taxol. Thin but still there bought some topix yesterday on Amazon.
Yesterday was a wash day so it's manageable today but so hard not to style and blow dry!!!
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Thank you and good luck to you! I'm starting my 4 cycles of AC later this month.0
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mj pow you look beautiful! You cannot tell. Hang in there. Taxol will be easier.
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Thank you lovesgreent i am still researching which is better for me. MJPow whic caps did you wear? You look amazing.
Powerpuffin i think your stage and size of lump are similar to mine, did you do the oncotype test? Which caps are wearing?
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Does anybody here use the paxman coolers?
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elastogel- thank u so much ❤️
Vivian- thank u so much. I used penguin cold caps the research I did it seemed like it had the most success for AC.
I am experiencing some pain with the taxol but so far it's manageable
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Welcome to all the newcomers...I just want to chime in a bit about what I have done...I used Wishcaps which was the cheapest I could find, $324 per month. Not the greatest customer service, though. But once we got going, we really didn't need their help. The 60 lbs of dry ice cost about $70 each time. The drugs I was on were Cytoxin and Taxotere x 4 infusions. I did not have a thick head of hair to begin with and now my hair is very thin and scraggly. The shampoo I used was Acure - but I did not love it - difficult to rinse out using the careful technique of cool water and low water pressure. My hair looked dirty and I fought that with corn starch.
I am 3 1/2 weeks PFC and I don't see any regrowth, yet. The shedding has slowed some but it could simply be that I have so little hair. But I don't need a wig and I only wear a hat outdoors if it is Very windy or to protect my head from sunburn or rain.
But I am happy to report that my hair looks better after switching to Avalon shampoo (I don't have the whole name of it, but it's organic and it has Biotin in it). It looks clean for the first time in 3 months. I bought it online at Walmart and got free shipping when I picked it up at the store. I also bought Viviscal and Toppix through Walmart.com and picked it up at the store.
I am also using castor oil with Rosemary on my eyebrows at night. My eyelashes are nearly all gone, but I am not putting anything on them. I have to be so careful not to use too much oil on my eyebrows because it will irritate my eyes.
The Toppix is wonderful!!! So I thank the gals here for helping me and suggesting these products.
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Hi Vivianlu8,
I have triple positive Invasive Ductal Carcinoma of the right breast, also in the lymph nodes. My treatment is neoadjuvant, which means I am doing chemo before surgery.
I am using Arctic Cold Caps, though I have not been very happy with the support. I am currently investigating if I should switch to Penguin though they are not much better so far with their willingness to respond to my questions.
Good luck to you.
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PowerpuffinSF2017 and other wondering about AC- I did my chemo in the reverse order of many- I stareted with Taxotere, Herceptin and Perjeta (have hear Taxotere can be hard on hair in the Taxol family) and then did dose dense AC. I used PCC (and their people were never particularly friendly or helpful.) I probably had lost about 30% of my extremely thick hair before AC. My first couple of AC treatments my hair stuck with me, but shedding was much heavier on the last two treatments and continued after treatment. I had surgery a month after chemo and during and after surgery I lost most of the hair I had left. BUT I never needed wigs and my hair started growing back in immediately. o I ended up chopping off the long hair I had left, which was maybe 20% of my hair? It was just too weird looking having it growing in so thick underneath the longer hair. During chemo though, I was able to keep my cancer hidden at work because of keeping my hair, it was also (I think) much easier on my kids to not see me bald. And for me, it was one less thing to worry about even though chemo days were extremely long. So although the cold caps didn't completely save my hair, overall I think they accomplished what I was going for. My hair grows fast, I am six months PFC and already have a few inches of hair. So no regrets. But also, I do want to be realistic that results with AC can vary, and can happen later after treatment is finished.
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hi amaploa, I had my hair dyed and trimmed 10weeks PFC. my hair is still ugly and straggly and super thin but just had like one inch cut off. I think you will know by feeling your hair when it's safe. When the shedding stops. I started viviscal anout 3weeks ago so im hoping that helps
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Thank you meg2016. I am on the same treatment path as you - started with THP, 4 cycles every 3 weeks. I am now waiting to start my 4 cycles of AC, every 2 weeks, starting later this month. Surgery will take place after AC.
While I have already lost quite a bit of my hair through shedding, I am still able to go to work everyday without a wig. My experience with cold caps:
1. Read and research shampoo and conditioner recommendations. I ended up trying 3 different brands before finding something I like.
2. Wash your hair once a week, in cold (or as cold as possible) water. Don't comb it unless you need to.
3. The silk/satin pillow case was a good investment. It helped me/my hair.
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Kim--Use a gentle, sulfate free (sulfates will make hair even drier) and paraben free shampoo. Some ladies were using Acure brand but seems to build up over time. There are so many to choose from at Target. I accidentally started w/ Johnson's baby shampoo and found out it had sulfates but used it anyway because I was scared to change! But now I use a sulfate, paraben free thickening shampoo. It's not so much the shampoo as it is babying your hair when washing and combing.
Sherry--I started showering instead of sink washing at 12 weeks. You'll know when your hair is strong enough. Once my shedding slowed, I would still get a couple combfuls at washings for a few weeks. Once it was only 1 comb full which was normal before chemo. I'm 15 weeks PFC and finally feel like I can blow dry, style, etc without having a bunch fall come out on my comb.
MJPow. My hair started to grow about 2 months PFC. I'll post pics from the past 4 months:
Last chemo January 18. This was mid February
This is mid March
Mid April:
This week:
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Hee hee--you can see the growth of the eyelashes in those pics too!!
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wow Pamela your hair is really filling in!!! Looks good
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