Cold Caps Users Past and Present, to Save Hair
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I was a sales rep for Pureology for years and unfortunately it's not all natural, although it has some all natural ingredients. Also, it says sulfate free but it has alternate ingredients that are sulfates but just have a different name. I always felt it was deceptive. As a stylist and rep the issue of the ingredients came up because myself and fellow stylist were having issues when clients were using the shampoos after smoothing treatments, sulfates are a no no when you have had that. I did my research and unfortunately found the issue. They are not the only brand that has this problem. The conditioners aren't the issue, just the shampoo. I really like Pureology and have used it and sold it for years I just wanted to make sure that the correct information was out there. Especially with all of the time, effort, and expense that goes into cold capping. This is the active not natural ingredients in Hydrate Shampoo.
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Thank you ladies for sharing your shampoo and conditioner choices! I def need a spray on conditioner to half with the detangling that is bound to occur if my hair dries naturally and curly.
What about dry shampoos? Anyone use those in between washings?
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I use dry shampoos -- partially because I use them to spray my roots. After the first few weeks, you hair will adjust -- you may even welcome the natural oils a bit, as chemo can be drying. I starting shampooing weekly, now I am close to 10-14 days -- kind of depending.
Basically I wear my hair up anyway and the natural oils help to hold it up better and I comb it less, thus helping me mentally with all the 'strands' that seem to come out.
You asked about hairstyles -- i have done some of the 'twists' that are kind of popular now. I even toyed w/the idea of a headband -- rockin' my 80's style. Something about not wearing a style the second time around has prevented me from doing it
... My best advice is that if you embrace some new styles and don't expect your hair to be the same style throughout the process, you will do better.
As my MO told me, you will notice it thinning and that your hair is different (and those closest to you may) - other people won't - (ie - the elderly lady at the drug store that wants to tell you about the 'chemo' her niece is going through). This is has been true for me.
Now, a super duper professional look, I haven't conquered yet - I have been working from home. That will be my next big personal challenge.
I also use topikk for covering gray, which I may use in general, as I have thin hair and it creates a bit of fullness from not being able to blow it dry or use product. Bonus is that it covers some of my thinning spots. Its been a good find for me, you have much more hair and may not need it.
Trial and error & pinterest ideas -- will be your friend.
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I have only been washing every 10 days or so. I have naturally curly and wavy hair that can be very frizzy. Not washing has sort of given me the wavy look that's popular now. I don't go in public much (also working from home) and I have some grey in my roots that is really noticeable to me. I've been wearing baseball caps to my children's sporting events and when I go to the store. Not sure what I'll do,when I go back to the office if I can't straighten or color my hair.
I use Acure shampoo and living proof leave in conditioner. The acure was too heavy and i found that I needed to wash more often with it. Finding a light leave in conditioner means one less rinsing in cold water. I hate cold water which has also been my reason for washing so infrequently.0 -
ykh- I use hair surge it was expensive but I finished chemo end of July and I still have some left I don't use it every time. I also take the Costco hair and nails and do the latisse and castor oil every night!
I love my extensions they make me feel so much more like myself!
I have 4 more radiations I am on the boosts starting today so it does so fast!
Hang in there everyone!
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Hello everyone. It’s been a while since I posted. I got my port placed this morning. I’m bandaged up but I can feel the port line under my skin running up to my collar bone. When I lift my head to look up I can feel a pulling sensation in my chest. I hope this is normal and that it goes away.
I am scheduled to start chemo Oct 23, but I still haven’t decided on my treatment. I’m waiting for Oncotype Dx results. My MO gave me a choice of AC & T (Taxol) or TC. He recommended TC because he said that there are recent studies (2017) showing that “TC is not inferior to AC & T in my subgroup”. Stage 2A, Grade 2, 3 positive lymph nodes, E+/P+, HER2-. He also said that I will avoid the possible heart problems and secondary cancers associated with AC. I can’t stop analyzing “not inferior”. So...does that mean equal to, as far as being an aggressive treatment? I obtained 2 other opinions, both recommended AC. I am 1 lymph node away from Stage 3 and 1 point on the Nottingham scale away from being Grade 3. I don’t want to under treat this and I don’t want to ever have do this again.
I ordered my PCC yesterday. My facility has a freezer but I would like to have the option of going home and finishing capping. I think I will bring a cooler and take the remaining caps home. They come in a keep box for the freezer. I’m wondering if I can take the remaining caps out of the box and put them in a ziplock, then put them in a cooler. Then maybe I could fit 8 of them in a 70quart cooler with 2slabs of dry ice?
I don’t know. This all too much for my brain. Why do I have to make so many critical decisions. Like I don’t have enough stress right now just dealing with my dx. Any thoughts would be appreciated. Thank you
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hi its still me, i just finished 4 rounds of TC and mailwd my penguin cold caps back. The 8 caps in plastic containers (like in the PCC video) is old info. On their website the current kit is detailed, and includes 4 caps with plastic storage bags. They no longer provide/use the plastic boxes for each cap. I changed caps every 25 minutes once the initial 50 minutes of acalp coolong was finished, and wirh a 4 cap rotation, they were always ready on time to switch (axtually they were a little colder than i needed so hubby would pull out 5 min early to check temp and usually had to let them warm up a few min on the sunny window sill to get to my correct temp (minus 26' to -28' celsius).
You can choose whether to get your kit with or without a wheeled cooler - theres no price difference. We chose to buy same style since we can use it later, and it saved a significant amount considering it will increase your shipping costs considerably each direction.
Will attach photo of rec style. Plain ones like this were avail at walmart for about $25 this summer.
You can do this!
Willow
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easily fits the caps and 4 sheets of dry ice. I think you need at least 3 sheets so you can layer all the caps with the white gel side in direct contact with the ice. The blue, outer side of the cap is insulated so you can touch it witbout gloves, but my hubby accidentally had that side facing the ice one time and it had not gotten nearly as cold aa when done white side against ice. We always bought 4 sheets since my engire process including chilling time and extra for delays was about 9 hours. The blocks were rarely a full 10# each since they evaporate over time in the stores freezer, but were often in the 7-8# range each.
Let me know if you have other questions,
willow
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Thank you for the info Willow! Do you know what size the cooler is? Is it measured in Quarts?
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itsStillMe - it is a 60 quart cooler. I used the freezer at the clinic, and then brought some home to wear afterwards. I stayed one hour longer at the clinic to wear two caps, Then I would change a cap and go home. One time we had a traffic problem so I had to stop and change at the 30 minute Point. I put as many caps as I could in the cooler and sometimes I wore them even one hour longer than prescribed. You can keep the caps in the freezer at the clinic until it’s time to leave. I numbered each box or bag so I could keep track and rotate them in order. Get enough dry ice to make sure the while part of the cap is in direct contact with the dry ice. I got my dry ice from a supplier rather than a retail store. I told them why I needed the Ice and they told me to call them two days before I needed it and they would save broken pieces for me, in a plastic bag. They did not charge me for the dry ice. I started taking them cookies and donuts. I would pick up the ice around 2:00 the day before and it lasted until 8 pm the next day.
Good luck!
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MJ -- your extensions look great -- I have always been a fan of them -- I can see myself getting something similar. Your big smile alone has to be worth it
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ItsStillMe - I was given a choice between ACT+H v. TCHP. The H is Herceptin and the P is Perjeta, both targeted therapy drugs because I'm HER2+. My MO (and the MO from the second opinion that I got from Dana Farber) both recommended ACT+H, but said they were comfortable with either choice. My MO said that 51 doctors would recommend ACT+H and 49 would recommend TCHP. She gave me a copy of the study that was done and I ultimately chose TCHP because both Adriamycin and Herceptin can cause heart issues. I didn't want to chance having heart issues from Adriamycin and then not be able to get Herceptin since Herceptin is so important for HER+ patients. That obviously isn't going to affect your decision since you're HER2-, but maybe looking at the study will help sway your decision.
This link might help: http://ascopubs.org/doi/full/10.1200/JCO.2016.71.4147
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Willow-- LOVE the extensions! I know I would love to do something similar once I am all through with chemo. Did you have to wait a certain amount of time after last chemo? Are yours woven in or clipped or other? Did you do this on your own or via your hairdresser or other specialist? Please share more because I am clueless and would love to hear about your experience.
ItsStillMe-- My diagnosis is "worse" (don't like that word) than yours, and I will be taking TC. My second opinion wanted to use ACT, but I had already received my lifetime supply of A when I was treated for lymphoma 24 years ago..... my local oncologist even said that he would not give me another drop even with a gun to his head because I am already being monitored very closely for heart failure as a result of the A I received back then. Of course I asked "what makes A the drug of choice by the 2nd opinion, and what can the A do that the TC cannot"-- and my onco explained mainly that the A has just been around that much longer and is considered old reliable at going after rapid dividing cells. He feels that the Taxanes are just as successful if not better, but there just aren't as many "trials" done on them yet. Most likely there will be a different side effect that will come from the Taxanes that they don't even know about yet and it will take another 10-20 years to discover. It's like we are all part of a giant science project!
Bottom line is YOU need to believe that whichever course of medicine you receive that they are going to WORK and rid you of any cancer in your body! Be positive and believe in your body's ability to heal with the guidance of your medical team. I have seen God unveil many things through my BC journey that would have been missed had I not followed my gut and made certain decisions along the way. You've got this!!
My PCCs arrived yesterday!! Yay!! First chemo is next Wednesday, and ready to rally! I went ahead and ordered a laser thermometer on Amazon. Any preference out there between using the probe and the laser?
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MamaFelice - my hair is naturally curly and a bit frizzy. Your hair definitely gets used to the minimal washings. I don't even wash once a week. In the beginning, after every shower, I put in Kendra Leave-In Conditioner, but lately I have been using Sebastian Molding Mud instead and I actually am liking it better. Regarding the thermometer, I ordered a laser and used it the first time and not again. Cold is cold & you get used to what it will feel like.
toughcookie - try the Sebastian Molding Mud I mentioned above to calm the frizzies and just use a little bit. It works wonders for my hair. Also, I have lots of gray hair & was completely concerned in the beginning about keeping my hair but having the big ole gray roots growing out. I have been using Clairol semi-permanent hair color which I got at a Sally's Beauty Supply. It's soo easy to use and works great for me. I don't notice losing any more hair in the areas I use it than not (I haven't been coloring the back of my head, cuz nobody sees the grays there).
It's still me - my doctor said that in general, the east coast doctors recommend the AC & the west coast the TC.
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I definitely prefer the laser. It's quick, easy and so far seems to be working well for me.
I finished treatment 5 of taxol yesterday. I haven't really lost any hair yet, but I still have the hair on the rest of my body too. I'm afraid it's all still going to fall out before I'm done. The nurse said most people getting taxol start to lose after the 2-3 treatment so maybe it's working. It's all so scary. I just want to look normal. I want to keep my hair even if I can't style it or dry it or touch up the roots right now.
This too shall pass, right
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I prefer the laser too and my husband has found several uses for the laser afterwards. He likes to check the air temp coming out of air vents to see if it's cold enough.
I'm 3.5 months PFC of CT. I did not shed during chemo between April and June 29th. My hair shedding, lost eyebrows and lashes started 2 weeks PFC. Yesterday I colored my roots with Madison Reed Radiant hair color kit in Tuscany Medium Golden Brown. It covered my gray, almost all white, 5 inch roots. I left the color on for 45 minutes using the plastic cap included. I just colored my roots with an application brush. I missed a few spots. Otherwise, I feel fabulous! I’ll let you know if the shedding increases even though this is suppose to be a more gentle color kit. I purchased from Ulta but also can be purchased direct online from Madison Reed.
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Wow Pam, your color looks great and your hair is so thick! You certainly look like a success story! Please do keep us updated now that you've colored it
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Brightness, so glad to hear that you haven't lost any hair. You and I started chemo right around the same time. I'm on a different regimen (TCH) and I will be halfway done (3 of 6) next week. I have only lost strands, no clumps or bald spots. Sometimes it feels like a lot of hair is coming out when I run my fingers through, but I can't really say that it is any more than I lose normally when I wash my hair. I'm only washing it once a week now and I don't really run my hands through it or scrub when washing now, so barely anything falls out in the shower. I have lost all the hair elsewhere on my body :0
Pam- looks great! I don't know how long I can hold out before coloring my roots. The gray is driving me crazy.
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Pam - all I can say is WOW! I would never guess you've had chemo recently!!!!
Brightness, I had the last of my 4 taxotere/cytoxan sessions 2 weeks ago (so 11 weeks since 1st round) and I haven't lost any eyebrows or fine body hair (face, arms, etc - the very light colored fine hairs) yet, but my eyelashes started looking skimpy between rounds 3 and 4. Pubic hair, legs, arm pits etc are long gone (aprox 2-4 weeks after my first treatment). I noticed a tiny bit of leg stubble growing back before my 4th session, but that is gone 1 week after chemo.
My MO said that the different kinds of body hair grow at different rates, so they are not affected the same way by chemo, since it kills the fastest growing cells. Of course it made sense as soon as she said it!
Willow
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Holy Hair Pam!! You look amazing! Please post more pics!! Love the color too! I know from our PMs that you had 4 treatments of CT. I will have two more than you and I hope the extra two will not be the hair end all for me. You asked me in the PM about why I have 6 instead of 4... it is because my cancer is in an advanced stage and I would normally receive ACT, but I cannot receive anymore Adriamycin so my onco decided to add 2 more TC to the normal regiment of 4 for good measure-- lucky me!
You all are sooo inspiring!!
My PCCs arrived yesterday! My treatment is Wednesday. Am I supposed to get them in the freezer asap before 1st treatment and defrost 2 days before treatment, or just leave defrosted now and place in freezer between treatments? Thanks
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mamafelice, I emailled the PCC rep about storing caps in the home freezer since their booklet says 2 different things. She said to store caps in freezer if they wont be used for 1 week or longer. If they will be used in less than a week, follow the directions for storing them flat in a cooll location out of direct sunlight.
Willow
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Thanks Willow!! 😘😘😘 I appreciate you checking on that for me. The booklet had me confused as well and I had figured the reps had gone home for the weekend. Glad to have an answer...I just want to do it all "just right"--& there seems to be a lot of picky rules to follow, so walking on egg shells a bit. How your extensions doing? Can you share a little more about them-- what type they are? Have you had them before? Thanks!
I do like how the capping gives me something different to focus on then chemo itself. It empowers me a bit. I want to have one up on it!
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Hi MamaFelice, happy to be able to answer questions and "pay it forward" for all the support I've received on this board! My MO suggested capping, but I honestly would not have undertaken it without the info on the website and all the honest feedback and photos from the ladies here! You may be thinking of MJPow or Vl22' s extensions.... I had my last round of TC 2 weeks ago, and am babying my hair big time, since I'm still shedding.
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MamaFelice, I feel the same way about the caps. It's one thing I may have some control over. It still may not work, but 5 down and 5 to go, I have all my hair. Even though I can't style my hair and white roots are popping out, I don't look like a typical cancer patient and that helps me navigate my every day life a little easier.
I actually have a team of two friends help each week. I can zone out if I need to and I know they are on it with the timing, checking the temp etc. When I get overwhelmed by what's happening to my body, it's comforting to hear them comparing notes and discussing whatever it is they discuss. It's like a soothing background noise that reminds me I'm safe. I don't worry or watch the time because they do it for me and I trust them.
Seeing the hair pictures gives me hope, but I try to balance that with knowing everyone is different and I may not be as successful. Still, I really appreciate the hair pictures, so keep them coming!
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Oh yes-- my apologies Willow! It is MJ Pow that had placed in the extensions (still want to hear more about them). My brain is so foggy from the nerve meds I am on after my BMX. Can't imagine where my brain will be once chemo starts! Thank you for understanding. I feel like we all need to post or PM photos of each other....I so enjoy putting a face with a name. 😀
Thank you Willow and Brightness for empathizing with me about how the caps mean so much more than the physical aspect of keeping our hair. I have a team of family and friends that are ready to cap! I feel so blessed to have all their love and support.
Toughcookie-- I think you and I are both receiving 6 infusions with Taxotere-- you with carboplatin & herceptin, and me with Cytoxan. And we both have wavy/curly hair that can tend to be frizzy-- so I went ahead and purchased some of the products you suggested. SJane has a similar hair type too. I've been trying to go as long as I can without washing to "practice " and I find thatmy roots dont seem so oily when i left my hair to dry more curly rather than combing it to dry wavy-er-- but then the tangles seem to be worse when I go to wash it next. I guess it will just be trial and error once I start it all.
I know I have been writing on this thread a TON lately-- more and more as my chemo date grows closer--& I really appreciate all your time and patience with me!! 😘💗😘
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MaMaFelice- call your infusion center to see when you can bring them in prior to treatment day just in case someone else is using the freezer too. I put mine (14 caps and 6 headbands each in a plastic box or zip lock freezer bag) into the bio-freezer at least 48 hours prior to use but I think you could get by with 24 hours in advance. The bio-freezer gets them cold fairly fast if the freezer door is left closed. Make sure you are the only one using the bio-freezer on treatment day. Rapunzel states the freezer should have one user per day but another person's caps may be stored in freezer if room. Once my treatment was on a Tuesday, so I took them to the infusion center on a Friday. In addition, I put them in my home freezer 3 days prior to taking them to bio-Freezer. Otherwise, my husband wiped any moisture off the caps and laid them out flat on a big table on top of dry towels or sheets, not in sunlight.
I recommend wearing the caps one hour longer than prescribed, or two extra cap changes, after chemo. It was no big deal to do that and I think it helped just in the chemo was not through my system yet.
Good luck and make sure caps are cold minus 32 Celsius and very snug on top and sides of your head to prevent bald spots. Especially with your thick hair, let your hair hang down so you do not hair bunched up in areas. The cold cap needs to reach each hair follicle. I put a thin hair net over the top of my hair to keep the hair from getting tangled in the Velcro straps as the caps were being changed.
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Hi All!!
I had to share since my last chemo was this past Thursday (yayyy!). We had great success with Penguin Cold Caps. I was able to save 70-75% of my hair. It feels thinner to me, but my friends and co-workers told me they haven't been able to tell a difference. My boyfriend came with me to each treatment and has been officially dubbed my "Alpha Kappa!" He did great!
If anyone has any questions about potentially using PCC in the future, I'd be happy to chat with you. Best of luck to all of you warriors!
xoxo
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Wow Hailey! Congratulations on finishing chemo!! AND for having such amazing results with capping!!
Thank you Pambc for the capping input! My hospital/infusion center does not have the freezer available so I will be bringing the caps in a cooler with dry ice. I'll be only one of 5 patients that have tried caps at my center...but I think it will be catching on more in the future!
Did my pre-chemo wash tonight and scrubbed my scalp for a good 10 minutes since won't be scrubbing for a while! Felt great!! Counting down to first capping!!
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Haily congrats!! Awesome picture and awesome result. Cheers to your Alpha Kapper - awesome title and thanks for sharing.
Mamafelice -- you have got this -- lots of hair to start with. And I agree w/ you on the distraction of cold caps and process to the chemo process - good way to redirect the mind.
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