This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.
Posted on: Jun 14, 2009 07:04PM
Can-D wrote:
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
Posts 19531 - 19560 (21,332 total)
Oct 17, 2017 07:52PM linamarin wrote:
Hi There,
As I stared the chemo, and i still have the chance to save my hair, I would like to know if i can have access to this Cold Caps and Scalp Cooling Systems thought the Cancer Society or the Wellington NZ Hospital. If yes, please let me know what i need to do.
Warm regards,
Lina
Oct 18, 2017 03:15PM Willow22 wrote:
hi Lina, I think you would need to check with your doctor or local chemo infusion centers to see if they offer the cold capping system near you (the machine cooled hats). They might also have a recommendation for where to rent caps in New Zealand (the kind you cool on dry ice), or your local cancer resource center might know. I used Penguin cold caps, and you could fill out the email info request online to see if they rent in New Zealand and get more info for your planned chemo regimen and type of hair. I had great results with PCC during my 4 rounds of taxotere/cytoxan, and am very happy I did it!
Good luck, willow
Oct 18, 2017 03:21PM Willow22 wrote:
Lina, Oops - forgot to ask.... have you already had your first chemo treatment? If so, you would want to discuss that with your doctor or cold capping company. I needed to cap from the very first treatment onwards to save my hair, and capping after starting chemo treatments would have been useless since I would've lost the majority of my hair 3 weeks or so after the first treatment.Oct 18, 2017 07:15PM ItsStillMe wrote:
Hi everyone, thanks for the great advice about cold caps and TC vs AC. It’s amazing that regimes can be so different depending on who your doctor is and what area of the country you are in, even given the same diagnosis. I have decided to put my faith in my Dr. and God, and go with TC 6x which I will begin my first treatment on Monday. I received my caps and have been practicing. They are really heavy! I will also be icing my fingers and toes and chewing on ice chips...brrrr!
Am I supposed to wash my hair 3 days prior to each chemo or 3 days after?
Thanks again for all your support and for sharing your stories and giving me courage to do this. Best to everyone!
Oct 19, 2017 12:19AM Willow22 wrote:
It'sStillMe, I used penguin cold caps. My chemo was on Friday, so they told me to wash my hair on Wednesday before chemo (the same day I would take my caps out of my home freezer, where they were stored between treatments since they are 3 weeks apart). The next time I would wash my hair was 3 days after chemo, which for me was Monday. In the written materials they emailed, it said I could wash my hair after chemo and before Monday if I wanted, but I would need to do it again on Monday because you excrete chemo drugs thru your scalp and need to wash that off. I never washed in between chemo and that Monday wash since my hair and scalp have been very dry after chemo, and also because I didn't feel up to it those first couple days. O
Hope that helps,
Willow
Oct 20, 2017 08:13AM - edited Oct 20, 2017 08:14AM by MamaFelice
Well ladies-- I made it through my first chemo and capping thanks to my "pit crew" and all of your support! All in all it went well and made my chemo day go by quickly. No real brain freeze for me, just a sense of cold throughout my body. I was def ready for the last one to come off though. First treatment is extra long to check for reactions so made for extra long capping.
Pambc-- thank you for tip in using hairnet between me and caps-- it got caught in Velcro a couple of times-- better it than my hair!
Willow-- how is the post- chemo shedding going? Nice of you to try and help Lina. I hope it is not too late for her to start.
ItsStillMe-- congrats on making yet another difficult decision on this journey! I too am on 6 x TC, so feel free to ask (here or in PM) any questions regarding my experience with the chemo or capping!
Thanks again ladies-- now to rest, rest, rest and combat any side effects coming my way! 🦋
Oct 20, 2017 01:33PM ItsStillMe wrote:
Hello everyone.
Willow- thank you for the hair washing info. I have been training my hair for the last month by washing only once a week. It gets really oily and yucky by the 5th day and when I finally wash it, I feel fabulous.
MamaFelice- so glad your first treatment went well. Please keep us posted on how you are doing. I’m right behind you. Monday is my first treatment. Did you ice your fingers and toes? Did you change your part with each cap change?
Yesterday we practiced with a cap out of my freezer and it was so cold, I started to cry. Then both my cappers started crying too. I got that feeling I had when I was about to deliver my kids and I was in so much pain that I thought “i’ve changed my mind. I don’t want to do this anymore!” Then the realization that there was no turning back.
Oct 20, 2017 02:01PM Willow22 wrote:
mamafelice, glad #1 went well! My best tips after chemo: take the anti-nausea meds as directed to prevent nausea rather than try to treat it after it has started, keep sipping on water or herbal tea to stay hydrated and keep an eye out/take early steps if you have constipation (most of the anti-nausea meds seem to cause it). Also write down your SE and what you want to do differently next time.... I usually have a great memory, but the treatments all blurred together very quickly for me!
Itsstillme - i could never go even 3 days between washing my hair before chemo, but my skin and hair has become so dry after chemo treatment that I can easy go 5 days and even up to 7 or 8 between shampoos wirhout it looking as bad as 3 days normally. Best wishes for an easy first round next week! For me it was great to get thru it and get rid of all the worry/fear of what it could be like. The reality (even how cold the caps felt) was nowhere near as bad as I had imagined. If the caps hurt or you are feeling anxious, ask your nurse for something to help.... there is no reason to tough it out.
I am just 3 weeks out from my final chemo (#4), so am still having expected shedding, especially today since it was a wash day. I'm was very excited to find quite a few new hairs framing my face! They are about 3/4" long, so I assume they started growing about the time I started chemo 😄
Willow
Oct 20, 2017 08:49PM ceci4555 wrote:
I had never heard of cold caps, any link I could check? does it work for other alopecia-causing cancer treatments?
Oct 21, 2017 09:01AM Pambc010417 wrote:
itsStillMe - I did change my part every Cap day. I also draped a single strip of guaze taped to the front of my forehead, up over my part, and hanging down in the back. My cap helpers made sure the strip of guaze covered the part or any other bald areas. It really helped me from getting scalp burns and from losing hair at the part.
I'm not sure if you are on taxol or Taxotere. I iced hand and feet just during the infusion of my Taxotere infusion which was 2 hours for me each time. I'll admit the icing of feet and hands was harder than capping. It made me very cold but I put an electric blanket around me and would lift my feet in and out of the ice water. I put thin socks on my hands and feet, then into zip lock bags, into ice tub with a little water (which makes Ice more cold). I purchased 3 small plastic tubs (one for both hands and one for each foot) for $1 each at dollar store. My nails stayed strong and I had no discoloration.
MamaFelic - sooo glad your first treatment went well so far. I agree to keep a log on your symptoms and talk with your doctor. My dr slowed done the infusion time for cytoxan and taxotere, actually double the amount of time the drugs were infused. After my first treatment I had neuropathy in my feet and hands and had trouble walking. Slowing down infusion and icing feet/hands really helped. I would say constipation day 1 and 2, followed by diarrhea day day 3-5, were the worse symptoms I experienced. I started taking one mild ducolax the night before chemo and the day of which helped a ton to keep things moving in my system.
Ceci4445 - check http://www.rapunzelproject.org/ and https://penguincoldcaps.com for more information. I think you will find good information at these sites. The penguin cap site list Chemo treatments that had success with cold capping.
Good luck everyone!
Oct 21, 2017 09:38AM Brightness456 wrote:
I had an appointment with my MO yesterday. The first thing she said when she walked in the room was "wow, the cold capping is really working". That felt so good. I'm still worried it will all fall out before I finish, but she said most people's hair has thinned out at least a lot by now.
4 more weekly treatments to go. I can't wait to put chemo in my past...
Oct 22, 2017 12:45PM JadeShiva wrote:
I had my first cycle of TC October 12th. I used Arctic Cold Caps. I feel like my husband and I followed the directions closely during the first treatment, we got better as it went on. I guess I'll know how well next week when shedding would normally begin.
I didn't enjoy the cold but it wasn't what I'd call painful. Of course, my definition of painful has changed now that I've experienced chemo. My infusion center doesn't have a freezing so we wheeled the cooler in. Our biggest hurdle was that the caps were excessively cold and needed a good bit of time to "warm up" to -35.
It's wonderful seeing the success photos! They give me hope if I even have only part of that success. My hair is very long and has been my oooo feature for so long, I'm sure losing it would be a drastic hit to my confidence.
Oct 22, 2017 11:13PM HWAC wrote:
Hello Travel Girl!
Please visit Hair WIth A Cause Hair Recovery Treatment Center, they exclusively specialize in pre and post chemo hair lost and hair extensions after chemo. They also offer In Home Servicing.
Deborah
Oct 22, 2017 11:25PM HWAC wrote:
For a more permanent hair recovery solution check out Hair With A Cause, they specialize in pre and post hair Recovery for chemo hair lost and Hair Extensions After Chemo
Deborah
Oct 25, 2017 07:03AM - edited Oct 25, 2017 07:05AM by MamaFelice
Hi ladies!
Today is one week from first infusion (& my 47 Birthday 🎉😃)!! Yesterday I walked the greenway with a friend and got my 10K steps in for the first time since BMX, and it felt great! I did not receive a Neulasta shot because I wanted to see how my body would respond without it first, and I am curious if I will have a fatigue crash in a couple of days as a result. I see my MO early next week to check blood and see how all coming along. I'll keep you posted. I know it is not about my caps, but I find you all very positive on this thread and wanted to share! ☺️
Thank you for the tip to write down my SEs! Great idea, and I will be glad I have done such when the next treatment comes along.
ItsStillMe-- how did port placement go? Do you have first infusion this week or is it next? You asked about changing my part.... I did not, but next time I will because I think I did get a few burn spots along my part in the front. Nothing major but weird zingy-type itches. I think we were so nervous to get each cap timed right the first time that lil things like that were overlooked. I did wear a thicker hair net over my hair as per an earlier suggestion and that helped keep my curly hair from getting caught up in the PCC Velcro. Good luck and let us know how it all goes!
My family surprised me with a beach trip this coming weekend! The Beach is my "God place" where I find greatest peace and can't wait to go....except for my hair. Any beach tips out there? Concerned about the wind whipping my hair out of my head and the dryness of the salt air-- it puts that salty film on the hair. Tomorrow I was planning to wash my hair-- been 5 days from PCC day 3 wash-- but been debating how to tackle beach and washing. Tips??
Thanks ladies! 💗🦋
Oct 25, 2017 07:40AM Brightness456 wrote:
I don't have any great ideas for the beach, but I worry about the wind too and I'm not also dealing with the salty air. Maybe a loose hat? One that covers to block the wind and salt a bit, but isn't tight since technically we aren't supposed to wear hats when cold capping? That's what I did when I walked on a windy day recently, but it wasn't as strong as beach wind. I used a friend's wind breaker with a loose hat which I did not tie.I don't think I lost any hair.
I'll be interested in what others suggest.
Oct 25, 2017 04:02PM Radmonkey wrote:
Hey MamaFelice,
I went to the beach while on chemo and cold capping. We bought a tent from Target... a 4 person tent and set it up. I had a chair in the tent with the "door" open. There was an occasional breeze but it was nice. I didn't have to worry about my hair while in the tent because no one could see (I had a some bald spots). I did wear a loose hat and put my hoodie sweater over it so it wouldn't blow away when I walked on the beach.
Surprisingly, I had less shedding at the beach than at home.
I'm 8 weeks post chemo and I stopped wearing a hat! The bald patches are filling in with hair!
Have fun!
Oct 25, 2017 06:29PM ItsStillMe wrote:
Hello all and Happy Birthday MamaFelice and have fun at the beach! I had my port placement and it went well. I’m on the thin side, so I can feel all the tubing from the port up to my jugular. I’ve heard some people keep their port in for security or wait until they have surgery, if they need it, to remove it in one procedure. I may do that as I still have a bilateral mastectomy ahead of me after chemo. I had my first round of TC this past Monday. I’m 2 days out and experiencing fatigue, some bone pain (managed with Advil), some tingling in my fingers, even though I iced. Combating Big D with prune juice and probiotic coconut water I got at Whole Foods. Just a genreral feeling of blah.
As far as capping. My facility has a biomedical freezer, so we brought the 14 caps on Friday so that I could use them Monday morning. I had also planned on bringing a cooler with dry ice so that we could take the rest of caps home and finish the 4 hr post capping in the comfort of my home. However, I noticed that the digital temp display was only -35 which made me concerned, because when I first toured the facility and looked at the cooler, it was -41. I left the caps in the bio freezer and contacted PCC about the possibility of the freezer malfunctioning. Gerilyn suggested that since we were planning on bringing a cooler, that if there was a problem, we should switch the plan and start putting the caps into the cooler 15 minutes before they were needed to bring their temp down. Sure enough, after the 3rd cap, my team (husband and bestie), noticed the temp of the caps coming out of the cooler was rising. So they switched to plan B. Going forward we are going to just use the dry ice method, instead of the biofreezer. It was a bit stressful, but capping made the day go by very fast. The caps were tolerable, and as everyone says the first is the worst. I did ask to take 2 Tylenol before I capped, Incase of headache, and my MO said that was fine. I switched my part, with every cap change, very quickly, because I have fine hair and I was concerned about freezer burns. My scalp was red after we were done but it cleared up by the next day. Glad I have 3 weeks to recover, and build up the courage to do it all again. 5 more TC to go...
Good sleep and peace to everyone.
Oct 25, 2017 07:16PM - edited Oct 25, 2017 07:18PM by Travel_Girl
Mamafelice - the tent is good idea! (or depending on where you are going, rent a cabana - that has wind protection.)
I also did a loose hat and light weight hood - the beach is my spiritual place as well - must go. As long as your hat is NOT pulling on your hair and your hair is not whipping around -- you are good to go. Also chemo makes you very very very sensitive to sun, so the tent and good coverage is a must for other reasons.
Enjoy the beach time, just protect that hair and skin.
I just finished #4 of 4 of TC today -- with Dignicap -- I will post some pictures in a few days -- I still have hair, thin at the crown, and still shedding, Would do it again without question. I just can't wait to color my hair the gray two tone is a bummer. I still have surgery to go, so hoping the 3 months to color goes fast, I may cheat a little with a few spots - haven't decided yet. Nothing near the sensitive crown, maybe just some of the front hairline.
Its worth it, keep doing it.
Oct 25, 2017 08:34PM toughcookie_21 wrote:
travel Girl congrats! I finished 3 of 6 TCH last week and I still have a full head of hair. It sheds a lot every day. It reminds me of after I had both of my children I lost a ton of hair- handfuls would come out in the shower. Now I only wash once a week so it comes out when I run my hands through my hair or when I'm sleeping. But it is not noticeably thinning. What is noticeable are my roots and I may break down and touch up my part and hairline because that is where I have the most gray. I've read through much of this thread and there have been a few women who colored their roots despite it being a no-no while cold capping. I'm still on the fence about it.Oct 25, 2017 09:00PM KCMC wrote:
Mama Felice I went to Jamaica between chemo 3 and 4. I wore my hair up in a loose clip and sat under a cabana in shade. It was quite windy we were getting winds from the hurricanes in the caribbean. I did not break a sweat the whole trip so I only washed my hair once during the week. I did not go swimming since my diep flap is still healing so I never submerged myself in sea water or chlorine. I know it sounds yucky about washing my hair only once that week but now I only wash it once every 3 weeks, just the three days after chemo. This is coming from a person who usually washes their hair every day or every other day. This is now my new normal.
Go have a wonderful time - I did! Never wore a cap didn't shed much during that trip. I thinned a great deal between chemo 4 and 5 and have number 6, my last one on November 8. A bad hair day is better than a no hair day. Yesterday, my Breast Surgeons nurse couldn't get over the fact I still had hair and that the cold capping is working! Good luck and have a wonderful time!
Oct 25, 2017 10:28PM Travel_Girl wrote:
Cheers KCMC -- that is my motto -- a bad hair day is better than a no hair day. I have only been washing my hair every 2-3 weeks after treatment 2 - mostly around cold cap time and 3 days later -- just to get the chemo out.
That is my new normal and I will continue to do that through the next couple of months to honor its fragile state and preserve what I have while working through regrowth. I too shed every time i comb it, that is why some days I don't comb it all - helps with my mental state :) ... if nothing else.
Cold caps rock, even with mass shedding - I am thrilled to have the hair I have - even if I miss looking 'sexy' - it will be worth it even more in 2018 -- typical regrowth takes 2+ years, this option dramatically decreases that and if I have throw on a hat to cover my grays for errands right now - so be it.
Oct 26, 2017 08:16AM MamaFelice wrote:
You ladies are so awesome! Thank you for the birthday wishes and all your wonderful ideas to take with me to the beach! I am going to rest and allow the ocean's peace wash over me!
I love the bad hair day motto! I had chemo for the first time at age 22 and lost my hair-- it was a tough age to go through that (any age is tough)-- but I remember for years after never complaining about a bad hair day and only being so thankful to have hair. I became very thankful for many things. Still am! Gratitude helps the heart heal from so much of the fear that post cancer can create.
I love when you all post pics, so please do!! I am curious of the state of toughcookie's gray roots....if you are on the fence, maybe post a pic and we can weigh in. Travelgirl mentioned some gray too. I use a product that is like a powder compact that just brushes on gray and covers. No spraying color which I wouldn't want on scalp, so I will continue to use my powder. I bought it at Sephora about a year ago & can get brand or send pic if you would like. Not sure how would work on all over gray, but root/hairline/part touch up it is fantastic. It's a bit expensive but I bought it on recommendations of others and it really works!
Itsstillme-- So 😀first chemo behind you!! Sounds like you have a plan for capping moving forward. I am a bit of a control freak (working on that), but feel better using the dry ice in cooler so I know we can have caps just right without having to worry about another piece. I look forward to hearing how all goes in the upcoming weeks. Did you ice fingers and toes too? I did not. Cold cap was enough for me to manage for the first one, but debating for future ones.
Well- I'm off to pack for the beach-- scarves and loose hats here I come! Enjoy your weekend ladies! ☺️
Oct 26, 2017 02:13PM toughcookie_21 wrote:
MamaFelice, is this the powder you mentioned? I've had it for a while and used it once when I had to work at a tradeshow out of town and didn't have time to touch up my roots before leaving. I wasn't that happy with it and ended up never using it again. Below the picture of the powder, I also uploaded a picture of my hairline. The right side of my part has the Wow powder on and the left is without. You can see how gray it is. UGH. What do you all think? Does the powder cover the gray well enough? Please don't mind my messy hair and pajamas. I've been working from home since chemo started and most days, I just stay in my comfy pjs and don't leave the house. And like many of you, I only wash weekly if that.
My children have a Halloween party tomorrow and 2 soccer tournaments this weekend, so I will be seeing lots of people. I plan to wash my hair tomorrow and try this powder out to see how it works out. I am going back to the office in January and I'm going to try to hold out at least until then to resume coloring my hair. I can't wait until I can schedule an appointment with my hairstylist and get pampered for a day! Lots of things to look forward to. It's these little things that keep me going and I appreciate the little things so much more since my diagnosis.
BTW, this is the first time I've posted pictures of myself!
Oct 26, 2017 02:23PM toughcookie_21 wrote:
I actually have a funny story about the spray on color. My previous position with my employer was in sales. I work for a medical device company and physicians are our primary customer, along with nurses and hospital administrators. One time, I used the spray on color on my roots prior to a big meeting a few hours away from my house. It was a warm day and I probably sweated on my head at some point. Throughout the morning of driving there, I must have put my sunglasses on my head and back on my face, never noticing that some of the spray on color had gotten on my sunglasses and smudged on the bridge of my nose. I went to the meeting and discovered the big brown smudges the next time I used the restroom. I'm sure they were there when I was presenting.
So now you all know how OCD I am about my gray roots. I got my first gray hair when I was in my mid 20s and I've been on a mission to color the crap out of the gray ever since. I wish I could be one of those women who embraces it, but I'm not. On the other hand, I barely wear any makeup but I certainly make up for it in the things I do to try and make my hair look good. I'm not at all bothered by my eyelashes thinning or losing my eyebrows. It's my hair that I'm most concerned about, which is why it was so important to cold cap for me!
Oct 26, 2017 07:16PM JadeShiva wrote:
Yesterday was day 14 and I started shedding. Not clumps, strands- but a lot of them. I have really long hair so that may make it seem like my shed ball is huge. I wonder, will I consistently she'd until chemo is done or will I shed intermittently? I guess time will tell!
Oct 26, 2017 09:22PM Travel_Girl wrote:
Toughcookie - the WOW powder works - you can see the difference between the two sides -- you should def use it. Thx for sharing the post -- my hair is a little worse than yours, as I have grays --dark and light -- so my hair is this 3 to 4 tone dark gray, white gray and blonde -- I will post my pix after I was the chemo out tomorrow. I have been using topic to color the gray in most spots -- it gives me some needed volume as well - as I am not using product.
I am 48 now and my hair started going gray in my 20's as well. Once again, bad hair day is better than a no hair day. Yay to cold capping!
Oct 26, 2017 10:20PM - edited Oct 26, 2017 10:37PM by MamaFelice
Toughcookie--Totally think the wow powder made a huge difference!! That is not the brand I have-- I put pics of mine below. Love the spray color story! Hilarious!!
My mother grayed in her 20s too-- I have been lucky to just start graying near my ears recently at 47; more like my dad. I keep wondering if my post chemo hair will be all gray! I have heard of that happening!
We made it to the beach! I brought my extra hair nets with me to wear out on the beach and hold it in while in the wind, and a scarf to put on top. I think it will work well!
Oct 26, 2017 10:36PM MamaFelice wrote:
