Cold Caps Users Past and Present, to Save Hair
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After pictures - (I didn't take any before and I was in a hurry to get started and no time to prep -- my hair is thin to begin with - always has been and then got thinner years ago with prior Breast Cancer treatment -- ER+ -- shut down my ovaries at 36 years old for 5 years).
I am thrilled w/ the cold capping results - cause I still have hair!!! 4 of 4 Rounds of TC, Dignicap. Day 3 post final Chemo.
I know that I will still have shedding to go, just doing a little chair dance and celebrating today.
It is not perfect, if you adjust your expectations of perfect, you will be happy. I typically dye my hair bayalage style, get touch ups every 3-4 weeks and use product & wavy curls to make it appear thicker (alternating with updos -- cause I can make it look like more hair up in a bun). Finding a style that works with this process has been a challenge, with every day bad hair days -- I will STILL take it. I have been wearing mostly a low pony tail w/ a rocking 80's scrunchie.
I have thin spots on top and lots of roots (see arrows, that appeared after 2nd dignicap first freak out...I am ok w/ it now).
I am using mostly Blonde Toppix to help with both thin and grays. I have tried many colors and different powders, sometimes, I use a mix, mostly just settled on the blonde -- by the time I wash my hair again in a few weeks, it will be more even tone as I add more topixx when needed.
I hope this post helps someone decide to use cold caps -- this is no product, no styling, 48 hour chemo wash -- still kind of damp -- just feels oohhh soo good to get the chemo rinsed out.
I can make it look more stylish - just not going for it today.
I am sure if you have thicker hair and less gray, you will be even happier. Once again, I am thrilled to have hair after the evil taxotere -- big, big, big smile. Happy Capping.
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I have question for you ladies. I just got back from my oncologist today. I have one session left of TCHP last one on 11\8. Was suppose to go onto Herceptin only til July 2018. Now he said he is thinking about Herceptin and Perjeta til July 2018. Is this even feasible to keep cold capping? Perjeta causes hair loss but Herceptin doesn’t. I am in tears. He is going to some big Conference and will have an answer on December 1st. I have been able to keep 75% of my hair Son far. I know in the grand scheme of things it shouldn’t matter. Has anyone else cold capped for a year? I am so upser
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KCMC - that is a downer -- check with your cold cap provider -- they will be your best bet. I think you can cold cap for a year, if you can handle it -- just ask them about the chemo type, etc. Remain calm and research your options - you have come this far, you can do it.
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travel Girl, your hair looks fantastic! No one would ever know you just finished chemo. Does topix come off on your pillow or leave a residue in your hair? Do you keep adding it between washes?
KCMC, I am so sorry that your oncologist changed their mind on your treatment plan. Mine has thrown some curve balls to me and I've questioned some of his recommendations and asked for specific results from the clinical trials. I'd ask your oncologist what is the % risk of hair loss as reported by the manufacturer. I think perjeta doesn't have a high risk of hair loss by itself but I'm not sure. I would definitely ask that and for the % benefit of adding perjeta for your diagnosis. I'm triple positive too but was led to believe that the risk of side effects from perjeta was greater than the % benefit it would bring me.
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Travelgirl, I agree that you don’t look like you had chemo. My hair is similar after 6 taxol treatments and 3 herceptin treatments so far. I skipped taxol last week due to neuropathy and after talking with the MO, then my family, I think I will not start again. The benefit of the last 6 likely isn’t worth potentially worsening the neuropathy since my chances (at least statistically) of recurrence are supposedly low anyway. Still, one never knows. Anyway, I shed more the past few days than I did throughout chemo, but I’m still hopeful it won’t be noticeable that I had chemo. I have white patches at the top front of my head and above my ears, but I have hair so I’ll deal with the white for now. If I was a man, it would probably look dignified, but it just makes me look older. No fair.
KCMC, I agree that you should ask for percentages and SEs (including hair loss) before making a decision. I’m sorry you’ve got yet another thing to add stress and worry. I hope you can cold cap all year if it’s necessary.
Does anyone remember how long post chemo you can lose eyebrows and lashes? I need to pick up some latisse once I decide for sure if I’m really stopping chemo and moving on to radiation
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I am using Chemo Cold Caps in Dallas. They provide EVERYTHING other than the dry ice and they have a deal with Emergency Ice for purchase of 80 lbs of dry ice for $25. PLUS they send a representative with you (if you are in Dallas area) for the first cold capping/chemo session! It GREATLY put my two capping helper friends at ease having an "expert" there with them the first time. This Tuesday marks 14 days since my first of 4 chemo(Taxotere/Carboplatin) so I am anxious to see how much I shed. I have pretty long hair and have washed it twice and mostly just keep it up in a big loose, messy bun with a soft scrunchie. I sleep on a satin pillow case. The first week I actually wore a satin sleeping cap with my hair just piled in it but switched to the messy bun at night. I use a wide tooth comb once a day and hold my roots and just comb out the ends. Using Brian and Joseph's gel for brows and lashes. Getting nervous for the upcoming shed! During the hour of Taxotere I also iced my hands and feet and munched on ice. I sat in a heated chair with an electric blanket, a heated pad, two warmed blankets and two regular blankets on me for that hour. It was torture but doable! Next chemo I am bringing popsicles and apple sauce to enjoy during it since it is hard to open my mouth much with all the straps holding the cap tight.
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Hi Ladies,
I had my first treatment yesterday and did the Dignicap system that my hospital offers. It was definitely a long, cold process, but totally worth it, if it works. I have thick curly hair which I thought would be a plus with this capping, but read that the shedding can be worse because the hair protects the scalp. Just keeping my fingers crossed for the best results possible.
After looking around for sulfate and Paraben free shampoo and conditioner, I settled on Burts Bees with Polmegranite. I love it!
Also, I read in my pamphlet from Dignicap that curling iron or flat iron heat is ok as long as your hair is long enough to keep the heat away from the scalp. Has anyone tried this. I really want to, but am nervous.
Oh and Travelgirl, your hair looks awesome. Definitely gives me hope!
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Trinity411 - I blow dried with a boar's hair round brush very gently on dry hair during capping, and I didn't lose any extra hair as compared to when I didn't blow dry it. I made sure there was almost no pulling or tension that I could feel. I found it was easier to have less tension on dry hair, and my hair got smooth even though I let it air dry first.
I had the regimen that was harshest on hair, Adriamycin and Cytoxan, followed by Taxol. I lost a lot on day 23. But afterwards I shed at a steady pace. I needed to use Toppik to cover my thinning crown after my 11th week of treatment. But by Week 15, even though my long strands were thinner than ever, my scalp was starting to fill in with new growth. By Week 20, my final Taxol, I didn't really need a lot of Toppik to cover my scalp. My baby hairs were doing the trick!
3 weeks PFC, I finally trimmed off the few remaining long strands and was left with a pixie cut. Not the best result, but I still managed to pass off my hair situation as a style change. In that sense, mission accomplished.
Hang in there!
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I am still waiting to find out what chemo protocol my oncologist recommends. If it is a taxol/taxotere/etc regimen, I will definitely cold cap, but I am wondering if he will put me on AC, because I need neoadjuvant therapy to shrink it before they do the mastectomy.
If it is AC, is it even worth it? I will be renting from Penguin no matter what, but gosh, the AC results seem like it might not be worth the huge hassle and expense. My husband can come be my capper until January when he starts teaching again, and after that, I guess I will have to have friends pitch in?
I am just dreading this whole thing.
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Corduroy - I had the worst results I've seen among the cappers here for AC chemo, and never once did I regret capping. I guess it depends on your motivation. If you have any desire to save your hair for privacy, then it's worth it. I couldn't keep my bob because the long strands were almost all shed, but the baby hairs gave me coverage at the end of treatment for a nice pixie. I would say the unless people knew my diagnosis, nothing about the thinning during treatment would have led the casual observer to think I was a cancer patient. When I started going thin, using Toppik, comb-over, and hairspray provided camouflage. Then the new growth started to fill in. Even family members, who I chose to not tell, simply complimented me on my new hairstyle. I saw them during my rat tail phase, when the strands of my bob were so thin that the ponytail was as large around as a toddler's pig tail. When I ran into them unexpectedly, I thought the jig was up, and I couldn't believe they didn't ask me what was going on!
Some cold cappers on AC were able to keep enough to get hair extensions after their final chemo to maintain their old length!
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Just hitting my second week after 1st chemo and cold capping . Got a dry, dark, flakey "line" near my hairline. I touch it and big flakes come off. Should I do anything about that?
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Thanks Elberama! Yes, I too am getting AC + Taxol so I'm very nervous, but I have 3 young boys at home and I if I can keep some hair I think this whole thing will be much easier on me and them. I just onbioscan't wear a wig 24-7 and really don't want them to see me without hair. It's good to know you used toppix, I will have to get some. Right now, I guess I'm just in the wait and see phase......which really stinks!!
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Hi ladies!
I just wanted to stop in to offer some motivation. I am officially 15 weeks post chemo! I can't believe how fast the time has flown, and how great I feel. My shedding has completely stopped, and I swear my hair is growing in even THICKER than before chemo.For those of you who don't know me, I am an ovarian cancer interloper, but I did a common BC chemo. 17 rounds of carbo/taxol. My shedding stopped around the 10 week mark. The growth since has been insane. Last Thursday, I had my first post chemo checkup. Scans are clear. I go back in 3 months. Life is wonderful
Cold capping sucks, its hard and stressful. But I've been able to resume my life seamlessly. Good luck to you all!
Heres a picture of my hair from this weekend.
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Toughcookie - I think that some of the toppik comes off on my silk pillow cases, however, not much and I would do it anyway -- I bought several of them and wash them very fews days anyway just to get rid of the chemo from sheets and room. The topic does leave things in your hair, as it is designed to be 'hair fibers' -- so it leaves things to fill in bald or thin/spots-- I can't say I have perfected the application - I have utubed several times. My biggest issues has been w/ my multi-color hair and trying to find a match. I can see myself using it post chemo just to create volume -- we will see
In between washing -- I add it when I need it - mostly to roots around the face -- those stubborn ones in the front hair line, probably washes off when I am washing my face or through the shower cap.
Sherry - Fantastic news about the scans and thanks for sharing your motivational pictures. And agree cold capping does suck, and I would still do it again facing the same decision.
I hope it helps.
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Angiepie - I got the dark flakes of skin as well. I didn't want to pull at my hair, so I just endured them and picked off the ones I could reach with my fingernails without pulling at my hair. The flaking stopped after the first few weeks. If you were a daily shampooer before, your scalp might need to go through the usual oily, itchy phase before it gets used to not having to produce so much oil. That might increase the flakes. Years before my diagnosis, I had really bad dandruff, and decided to transition to weekly shampooing after reading about a no-shampoo movement. I never went that far, but I did manage to stretch out my washings until I was weekly. It was an itchy, flakey, and oily time for a few weeks. I read that the chemo will slow down oil production anyway, so maybe it won't be so bad for you. Good luck!
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Sherry - you look great, and your hair is amazing. Here's to clear scans again in 3 months!
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Sherry you look amazing! Congratulations on the scans! Thank you for the motivation!!
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For those icing for possible neuropathy, I made Ziploc bags of coldness by mixing alcohol and water (got the recipe off the internet). I bring two bags for each area and rotate them in and out of the cooler to keep the hands & feet & nails cold during the taxotere.
KCMC - I will be doing the Herceptin for a year once my rounds of TCHP are done. My oncologist said she considered Perjeta as well for the year, but said said there was less than 1% benefit to adding it, so I am going Herceptin alone, thank goodness. I will be interested to hear what your doctor concludes is best for you.
Corduroy - tough decision, to cold-cap or not to cold-cap. Have you decided yet?
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sherry -- all I can say is WOW! You look fantastic and I would never have guessed you have had chemo! Congratulations, because if I remember correctly, you capped for 18 or more sessions of chemo!!!
Travel girl and tough cookie - thanks for the photos!!! I'm 4 weeks PFC, and have been wiped out dealing with my chemo plus my father-in-law's recent health issues (at 86, he was just diagnosed with bladder cancer and very likely the enlarged prostate is also due to cancer). My grey and roots are horrendous, and now that I'm out more, I need to figure out which color and start using one of these!
Willo
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corduroy - loved the way penguin cold caps are custom fitted around the head ---- i have a small head, and was very concerned that the elastogel caps would not fit tightly to chill all of my scalp.
Penguin rents used caps at a discounted rate of $300 per month. The caps are easily cleaned between users, and I would have loved to have ordered those if I had known prior to starting treatment. They don't mention this anywhere on the website or over the phone -- you need to ask for it. Makes them the same price as elastogel rentals I believe.
Willow
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I spoke with my MO and my RO yesterday and I’ve officially stopped taxol after 6 treatments. Everyone thinks the benefits I got from a limited amount, in addition to not knowing if I really even needed it to begin with, is enough, particularly given that I was starting to have pretty bad neuropathy. So I’m ready to return my cold caps and move on to radiation. I’ll continue herceptin for the rest of the year
Can anyone tell me when it’s safe to start wearing mascara again? I’d stopped because I didn’t want to put any pressure on my lashes. Both my lashes and eyebrows did thin out, but they are mostly still there and I’d hate to lose them now. I’ve been using Brian’s Joseph’s on my lashes and EES on my brows. I’m going to get latisse soon and start using that. Is it likely I could still lose my brows and lashes? I’m 2 weeks out from my last chemo.
Interestingly, I’ve lost more hair through shedding in the past two weeks than I did in the other 6. You can’t tell from looking though. The other thing that’s been significant is that my head has been peeling, mostly on the top. It must have been frost bitten? And there are places on the crown of my head where I can feel prickly new growth even though I didn’t realize I’d lost any hair there.
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Brightness -- Congrats on the milestone -- done with chemo. Woohoo!
I wear mascara on occasion -- have throughout chemo -- on the rare occasion I was going somewhere - I am an eyelash person, always have been. I don't know the official 'stance' on when to do this -- I would think try it and if you can't tolerate it, don't -- and don't wear it everyday? If you don't need too?
Also check out GrandeLASH-MD - as an alternative to latisse -- they sell it on amazon, however, heard some rumors that it might not be legit from that site, so recommend direct from the website. You can utube before and and after videos of make up bloggers -- i have never used latisse -- i just found better reviews for this doing my research.
I am 9 days post my last TC and I still have brows and lashes -- just keep wondering if they are going to fall off myself -- I had read they fall after TC finishes -- so we will see.
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Brightness and TravelGirl - congratulations on being done!!! What a wonderful feeling to mail those caps back
I am 5 weeks PFC, and while my eyelashes are a bit skimpy, I still have about 25-30% remaining. I haven't used mascara during/after chemo because I was afraid using makeup remover & cleansing might make more fall out (nothing I've been told or read, it's just my worry). My eyebrows are pretty much normal looking - no new hair to be removed since starting treatment, but no noticeable gaps or thinned areas. Wonder if I'm past the time frame for losing eyebrows or if that is still possible after 5 weeks....
Willow
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My first post. I start chemo next week, and will be using the Dignicap. My hope is that I retain enough of my hair to look "normal" to the outside world, espcially my clients, and especially to my 7 year old daughter. I am having 12 weeks of taxol (weekly) + Herceptin, then Herceptin only. I have read everything on the Dignicap website, and spoken to the technicians at the hospital, but I still have tons of questions.
1. First, can anyone recommend a shampoo? I don't want to make a mistake and the hospital was not able to give me guidance.
2. Also, someone posted here that Dignicap says it's ok to use a flat iron on the ends of your hair? Is this correct?
3. My oncologist says that the success rate for my type of chemo are better than the 66% quoted by dignicap. Have you found this to be true? How far in do you think I will be able to tell whether it's working or not? (if it's not working, or not working well enough, I am just going to stop, because the cost is per treatment).
4. I am mostly gray, but I color my hair red (close to its original shade). I'm going one last time and my colorist is going to lighten it up so the roots don't show as much. For those of you whose color grows out noticeably, how did you handle? Is it OK to use any of the root touch up products? Or did you just go au natural (or wear a hat).
5. Is it safe to wear wool caps or do they pull on the hair too much?
6. I am dreading the actual treatments. I am cold all the time to start. Any helpful tips other than to wear warm clothing and blankets? They told me at my fitting that I will also be icing hands and feet. Ugh.
Thanks so much for any advice you can give!!!!!
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Brightness- Congrats! That must be an awesome feeling to send those cold caps back!
Just posting a quick update. I saw my breast surgeon today for the first time since right after surgery. He hasn't seen me since I started chemo, but he was SHOCKED to see my hair. Both he and his nurse were asking me all kinds of questions about it and they were truly amazed at the results. It made me so happy to see their surprise because everyone in that oncology office was skeptical of cold capping, including my MO and his nurse.
Red332- I have to run, but I'll come back later tonight to help answer some of your questions. You're in good company here.
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Hi there red332...so sorry you have to be here, but this board was so helpful to me during my treatments. A lot of the ladies here have used manual capping systems, but I used Dignicap like you will be doing so thought I could help with some of your questions.
I used Acure hydrating shampoo, I had read somewhere that was a recommended one to use. You can find it on Amazon and most Targets sell it too.
I did use a flat iron/curling iron on the lower half of my hair. I lost more hair than I wanted to, but I never felt like the heat treatment is what caused it. I would also sometimes use my hair dryer, just for a short period with the cool air and the lowest speed, just to give a slight lift at my roots.
My chemo regimen was different from yours so can't speak to the success rate. I was told upfront that the success rate for AC+Taxol was only like 25% and I guess they were right. I lost a lot of hair, but most of the loss occurred about halfway through my treatments (I had 4 AC plus 12 Taxol). My hair began to get so thin in those last 8 weeks that I looked sick so I started wearing a wig. However, some new hair was already growing back in before I finished the treatments and when I was done, at least my scalp was fully covered. I had long hair prior to treatment and not much of the length was left, so I cut that off...but now I'm starting regrowth with 5 or 6 inches of hair on my head rather than stubble...so I'm still glad I did the capping.
I am blonde (with the help of my hairdresser) and I was also worried about roots, so before I started chemo, I had a balayage treatment to darken my hair. It was a fun way to try something new, but looking back wasn't really necessary. I don't think I would have ever had much root color showing because my hair did not grow during treatments.
Not sure about the wool caps...I probably wouldn't wear them for a long period of time. I did wear a baseball cap some during the thin times.
If you are cold-natured (and I am too)...treatments are not going to be fun. The treatments themselves are not bad, but the cold is hard to endure and the cap itself is uncomfortable (heavy and tight under your chin). But - I can honestly tell you, if you get through the first 10 minutes, you will be ok. I almost had an anxiety attack at my first treatment when they got the cap on but I talked myself through it and was fine after that. Hopefully your chemo clinic has heated blankets, they are a lifesaver!
I hope this is helpful. Best of luck to you and prayers for complete healing.
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red332- I would recommend you read through this thread by going back to page 1. There are lots of good tips on shampoo and cold capping. For instance, you can click on my user name and it will bring up all of my postings in this thread.
I strongly suggest you do not use chemicals on your hair so close to treatment. Most advice and tips I read said no chemicals 2 weeks prior to chemo and up to 3 months afterwards. I hate to see you have poor cold cap results because of chemicals on your roots and hair follicles. They also recommend mild shampoo like Acure Clarifying shampoo (green /white tube) and I also used pureology moisturizing shampoo and conditioner (just on my ends of hair) in light purple bottle. Start using the milder shampoo now to prepare your hair follicles. I am 4 months post chemo and have 75% of my hair with no bald spots.
Best wishes
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Thanks so much for your advice, Pam and Sonia. Am supposed to get it colored tomorrow (6 days out). I should have had it colored sooner but was not able to find the time with all my medical appts and working at the same time. Argh. The colorist was going to add some highlights as well so the gray wouldn't be as noticeable as it grew in. Wondering if I should go ahead and do that but leave the roots alone or just have her color the roots around my part (can always part on the other side if the hair thins there because of it). I love the idea of the root touch up powder when needed but it's very difficult with red hair as there aren't many options for red and it's unlikely to match my hair. I also work at home but have a young daughter I walk to and from school every day so I am out in the world. At least winter is coming so I can cover up.
It's kind of surreal to be obsessing about this with everything else going on. But it's the only thing i have even a smidgeon of control over, so obsess I will. :-)
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red, I colored my hair shortly before chemo (like within a week) and had no issues because of it. I had weekly taxol and herceptin but used Penguin cold caps. It's far and away the easiest regimen for saving hair, but your success will probably be dependent on how well your Dignicap fits your head. I lost very little of my hair - maybe 5% if that
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Hi all,I keep coming to this thread to get motivation and finally decided to post.
I've just had my second treatment on 11/2. I started cold capping using arctic cold caps on 10/12 at my first treatment and am happy to report I haven't seen any excessive hair loss so far (not more than before starting thr treatments). I'm on TCH regimen 6 doses 21 days apart. I keep the caps for 4 hours after the carboplatin is finished as recommended. I have a short thick black hair, still natural color. I use tresamme nourish shampoo (no parabens or dyes). Since I don't use any products (I ditched even the conditioner) my hair stays annoyingly flat in between washes. I just bought a fleece hat for the cold days ahead I hope I won't have to wear it constantly.
I can report that the first 4 caps I put make me wanna cry. For the first 5 minutes or so I clench my teeth and have to talk myself not to pull the cap and be done with all this vanity. But then as red332 and many others pointed out it's the one thing we have control over, so I'll keep going. My husband is very supportive - he does the hard work of getting everything ready, shopping for dry ice and meticulously following the instructions. I'm so lucky!!!
I have Aetna insurance and I am planning to submit a claim after my third session and see what happens. When I spoke to cust service they told me to submit pretreatment to see how much they would pay. Since the cancer center I go to is not very familiar with the process (they had only one other person before me use CC) they did not know what to do with insurance so I have to figure it all out by myself. So far my MO says she'll support and sign anything I need. I'll be back to share my experience:)
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