Cold Caps Users Past and Present, to Save Hair
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Love-
I have no scientific basis to answer whether your mom should continue, but can say if she is not shedding more she should go for it, and in my own personal case, gauze protected my considerable bald spot just fine.
Keep pressing the clinic. Good luck to your mom-hopefully she is reading these posts too & knows there are a lot of us in her corner
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LoveandLight - I too am horrified at the actions of that nurse! I would have screamed yelled and done who knows what to get that cap on my head. Alas .... additional stress isn't helpful for anyone in this situation.
I finished my 4 ECs with the cap, but in my honest opinion, the cap just didn't fit well and somewhere between infusions 3 and 4 my bald spot doubled - I cannot hide it will any amount of combing over or pulling it back
. I continuously loose large amounts of hair when I do my daily combing and hair is always on my clothing. Whose to know what Taxol will do. I keep wondering myself. I start up my 12 weekly on Monday and am slated to use the cap but can't stand the thought of it. Then again, if you've done 80, might as well do 100. Taxol has as a side effect hair loss --- but I've been asking around these threads and some people have kept a great portion of their hair. However, if starting out with a 70% loss ... it might make sense to try to keep it and not loose any more. What is your clinic suggesting as post infusion cap time? Mine says 90 minutes. So, 30 less than EC but essential the same time as infusion time is longer.
If she can still pull her hair up and looks presentable, then I'd say to continue.
Love and hugs her way ----
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Loveandlight - everything you feel is spot on in my books. I’m thinking the doctors aren’t going to slam the nurses and vice versa, probably trying to avoid an outright confrontation in the chemo area. At the end of the day what matters is your mom’s comfort and peace of mind during this stressful time (as well as yours). Here’s what I would do this Friday- go into the appointment with mom’s cold cap set in place and proceed as usual. Chances are you won’t be intercepted as they’re all aware of your conversations with the onc. If nurse Ratchet does start up i’d firmly interrupt her and ask that she step aside for a private word, just you and her. No matter what she says, again firmly tell her that the the cold cap IS GOING to happen, that no matter what she’s feels about the outcome it is within your mothers legal right to cold cap, and with the onc’s permission. I’d also mention that she is upsetting your mother during the worst possible time of her life and you will not allow her opinions to tread on her life any further. Turn, walk away and go back to mom. Put a case closed look on your face.
PLease keep us posted!
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mamaloves - sorry delayed response. I have been away from this website this week. Trying to catch up now. The nurse who helps me with the cap told me I didn’t need the pads, that the new cap should fix this issue from the previous version.. But they said if it made me feel better, to go ahead. So I put 2 pads (not too thick, normal flow, in a line right on top in the midpoint (kind of like where’s a Mohawk is). I swear I felt it much colder on top this time around. I’m definitely doing it again the next times. I got a bald sport right there, so I think the cap still has this problem or my head hasn’t a weird shape that’s creating a bubble on top. Hope this helps!
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lovesndlight - I too feel outraged by this nurse’s treatment to your mom. The nurse has no right forcing her opinion on you guys like that. Your mom has the right to do the cold cap. I agree that your moms should continue. if you don’t keep going you won’t know if it would help save her remaing hair.
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hi all! I’ve been away from this site this past week or so. My sister who lives in Australia came to visit so I was busy. I only see her like once a year donor was great spending time with her.
I went through my second shed. As you all had said, it wasn’t as bad as the first. Yet, I did loose quite a bit. My bald spot has gotten bigger and I have a lot of thinning everywhere else. I bought a few hats and scarf-caps and have been opting to go out wearing them. I still use the toppix and L’Oréal spray which help A LOT. I’m considering to get a wig too for special occasions.
Hope you are all doing well!
Many hugs!
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After 4 ECs with the old version of ill-fitting Dignicap. Like Pbello --- when I would squish the cap around on various places on my head it would definitely feel much colder (and much more uncomfortable!). There was no feasible way to spend those three hours with straps around my head to smush it down.
I suppose that in comparison to being cueball bald, this is a success. I, however, cannot be seen in public without some sort of head covering.
Next up Monday I start my 12 weekly Taxols. I am cringing at wearing that cap for 12 more times.
Side note: so I've sprayed some coloring here and there on my head (not only am I half bald, but ugly grey is there too!) and of course the product sticks to my scalp and flakes around. How on earth can I get it off without rubbing my delicate remaining hair around? I have Toppix arriving today and figure it will be the same issue ---- how to gently clean the head?
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Hi!!! Amelia, you have a good amount of hair on the sides. That’s great! You can use lots of hats to cover the issue on top. I have been doing that and it sure makes me feel good (and look better).
Like Amelia, I also don't know how to get all the root spray or toppix out of my scalp. I don't want to rub so I just pour water on top. Most comes out, but some clumps up. If anyone has any suggestions, please let us know.
Here are pictures of my bald spot and thinning after I washed my hair. You can see the clumps that I’m talking about. Any suggestions would be great!
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Hi all,
What shampoos and conditioners are you using on wash days? I've been using Acure clarifying, but the smell of it is starting to make me queasy. Maybe I've grown to associate it with chemo. I need to make a change soon. Something with a fresh not too strong scent. I know we are supposed to use a sulfate and paraben free shampoo. Any great conditioners out there as my hair is getting very dry and breaking along with falling out from coldcapping
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Rockcity - Before I developed my scalp condition, I was using a recommended clarifying shampoo from Kenra. https://www.amazon.com/Kenra-Clarifying-Shampoo-10-1-Ounce/dp/B000Z8ESJG?th=1 It has a light, pleasant grapefruit fragrance. I continue to use the recommended Kenra Daily Provision leave-in conditioner spray. The latter is not a "deep conditioner." If you end up using something more moisturizing, you should probably apply it only on the ends, avoiding the scalp.
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Loveandlight- as a nurse and fellow cold capper I think the nurse refusing to do it is way inappropriate. She can recommend, but as long as ur mom herself d idnt want it, or it wasn't causing harm she should not have stopped it. I would talk to charge RN if there is any more problems. Show them pictures, maybe call the cold capping company and tell them the hospital is not following procedure?
Amelia and pbello- I'm in love with toppik, what a life saver! When I wash my hair If any remains I just leave it, I don't think there is harm?
Rockcity- for shampoos I go back and forth between using blnde shampoo ( customized on their site), paxman shampoo, and my kids shampoo ( fresh monster )which is paraben, sulfate). For conditioner , I found palmers coconut conditioner, it's also following the rules and smells great and feel like it's a great conditioner!
Has anyone had a large 2nd shed? After my big shed ,im just slowly shedding.. but I keep being anxious that big one might start again? Anyone have that happen??
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Hi Cold Caps friends! Love all the helpful tips and experience I'm reading. Thanks so much. I'm using PCC and had a big shed after my first round on 3/2. I thinned a lot above the ears and receding at hairline too. Just finished my second infusion yesterday and still shedding quite a bit. Nervous what to expect in next two weeks! My biggest challenge is how to look decent at work. The in between washes and not using hair products or heat keeps it interesting! Are you finding hats or headbands are ok? I do use bobby pins.
How often are you shampooing. Favorite dry shampoo? Myhairline gets terribly oily:/
Have a wonderful weekend! Thanks again!!
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Dd- I hope your shedding slowed down, mine shed alot after my 2nd round, but then slowed way down about 4 days after. I am using those small jaw clips to bring back my front hair and cover my middle thin and back thin parts and I think it looks pretty good and I don't feel like it's tugging at all.( as good as it can get.) I use humble and bum ble dry shampoo.. I tried a few others and like it the best. I have the plain one but I may get the color tint one they sell. Winter hats worked well for me, but it's hard to keep that on at work, I have baseball caps for the spring too but h avent found a good indoor hat i like. Last week I waited a week to wash.. this week might be 4 days since it's chemo week and I wanna get a wash in before, but may wait a week again.
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Thank you so much for the support , I really appreciate it, the situation was just totally out of order, but reading all your comments made me think that i can't just let this slide. So i put in a formal complaint with the head of department friday morning, and to my surprise she answered within an hour. She was genuinely apologetic and said that she is personally going to pursue the matter - so they are going to put this nurse under investigation.
4 senior nurses yesterday and 2 oncologists said that my mother had every right to continue cold capping her last session without it being an issue, yes she had light hair and patches however each nurse gave their whole hearted opinions saying there would have been ZERO harm to her health had she gone through with it. Its a damn shame that she missed her last cold capping for EC as it is VERY important for it be consistent, usually you stop cold capping after you miss one session but the department were kind enough to encourage mum to try with her first Taxol treatment and see how she feels.
So we went for it, even though she shed quite alot at the hospital yday, but the nurse explained its because she missed the last session! i was genuinely trying to cry infront of her i was so heartbroken because it really was working for her and it took 1 awful human being to ruin that for mum. Fingers crossed it goes well with her weekly taxol.
Sending you all so much love and positive energy and thank you SO much for all the support !
Xx
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I am looking at cold caps now that my oncologist wants to try a taxane and a carboplatin on my metastatic TNBC. I told him I didn't want to lose my hair again and wanted to try the cold caps, but he said in his experience they are very difficult to work with and was overall negative. I don't care, there is no way I'm going to be bald again. Which brand of caps has the best ease of use? He said there's no freezer in the chemo room I can use. Recommendations, Please!
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Minxie - The decision to cold cap is yours, not your oncologist's! Read through several pages (at least) of this thread and you will see that many of us have cold capped with all different sorts of chemos, with at least moderate success. Most of us did not have access to a medical freezer; we loaded up a rolling cooler with dry ice and the caps and brought them into/out of our infusions. Your best single resource for general info is: http://www.rapunzelproject.org/ColdCaps.aspx
I used Arctic Cold Caps, and would do so again. In terms of numbers, Penguin seems to be the company used the most often, and has been around the longest.
Good luck!
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Minxie My MO is conservative and discouraged me from cold capping. I did it anyway and I'm glad I did. You have to do with what is best for you. Good luck.
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Hi Jlove! Thanks so much for the tips and feedback on the shedding. It's overwhelming to experience at first but trying to remind myself that it means the chemo is working! Your hair looks great with the clip! I'll pick some up for sure tomorrow before I head back to work next week. And I love bumble but haven't tried their dry shampoo before, def will grab some. I found a colored dry shampoo - powder form called Acure today at Whole Foods that seems to work ok.
Good luck this week with chemo - take good care!
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dearest minxie-- hate to hear you are having to go through chemo another time. This BC was also my 2nd time enduring chemo (1st time 25 years ago for Hodgkin's lymphoma), and when someone told me about capping, I knew I had to try it. I used Penguin caps, and more specifically, I used their discounted option.
I'll never forget when I asked my MO about capping and he said it wouldn't work and would be a waist of time and money. I still decided to give it a try. When I would meet with him after each infusion I would wait for him to make a comment about the hair that was on my head and he didn't say a thing until finally, after my 5th infusion.... he was leaving our appointment and we were discussing our thoughts on how well TC would go after any possible rogue cells, and I commented on how I believed that God's hands were guiding each drop of chemo to any remaining cancer cells in my body. And he looked at me and said, "well, if God's hands had anything to do with that hair still being on your head, then you can rest assured that he got all the cancer!" And he walked out the door. It was a moment I will never forget! 🙏🏻😃
Like klvans said, you have to do what is best for you! Please let us know if you have any questions, and these amazing women will all offer plenty of help! I am almost 8 weeks PFC and still shedding--I've lost over 50%--but holding onto enough to pass in public as having a full head of hair! Would do it all again in a heart beat! I so enjoy reading how you all are doing-- Sending love and healthy wishes to all!💚😃💪🏼
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minxie-
I used Warrior Caps out of TX and wholeheartedly recommend them. Owner Lisa is hands on, will answer you personally via email text or phone and talked me off a ledge or two. Though I have a bald spot on top & thinned all over -I would do it again in a heartbeat.
Good luck whatever you decide.
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MamaFelice --- please check your private message box
JLove - I "shed" always. Yesterday's comb through was a bird nest. Almost thought of throwing it out the window so some bird would have pre-fab housing.
Did someone mention Botox for pain management post-op? Heck .... I did my mastectomy with tylenol as pain management (until I asked for something to knock me out for the night). If you can choose where to put the Botox ---- I'd vote for the frown lines caused from this awful crap! (note to self ---- ask PS about Botoxing face while doing exchange surgery). Actually, it isn't against any guidelines not to use Botox while doing tx - but as unpresentable as I am I'll wait until I'm done with everything and then treat myself.
I did my first of weekly Taxol on Monday and again, I cannot stand the two hour capping time. I was ready to rip it off and throw in the towel! How is everyone else tolerating the cold? I think for the most part the dignicap just doesn't fit well enough, so when I change positions or squish it against another part of my head, I feel the cold as if it were new, and not a constant all over cold all the time. I have an electric blanket, and electric shoulder warmer and I am still just not tolerating the cap. The first two times were ok- then again I had all my hair to insulate. Now with sparse and balding head the cold is unbearable. MO actually suggested that I give it up. WHAT???? I've gone through 4 ECs and still have enough hair on my head to not nauseate myself and she says to ditch it? That, in itself, is impetus to keep going. But alas, I've only done 5 and have 11 more times!!!!!
Does anyone have any suggestions on how to ease the discomfort?
On a supplement note, I was told not to take any B vitamins for hair or neuropathy but was oked L-cysteine for hair growth. It is an amino acid and should help regrowth and protect the bulb. 500mg / day twice a day with meals (holistic MO's indications).
I had my wig trimmed yesterday. It looks just fine everywhere except at the top of my head. It is too squished around my forehead and I can't seem to fix it -- plus, I have the constant need to push it back off my face, but then it looks like a rug because the cap part is too visible. I'm fine going out in hats, but isn't the point not to have to use a hat? Paid a ton of money for it, and it just doesn't convince me
LoveAndLight - please send an update on how Taxol went with Mum. She and I are on the same program, it seems. I hope missing the cap on EC 4 isn't detrimental to the rest of her capping.
PBello - from what I've understood, our EC and AC are the roughest on hair ... here's to hoping the Taxol will be more forgiving! Are you doing weekly Taxol too??
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Amelia- your post made me laugh🤣 I should through my nest out the window too! And I got my wig trimmed last friday and brought it home, I still feel ridiculous in it, feel like I too want to just push it back or toss it and I just don't feel like myself so hats and toppik it is until I can last till the end! My wig cost more than my cold capping! Tomorrow is my first infusion since losing so much hair so I'm nervous how cold it's gonna be. .. I'm hoping if I just smooth back my good hairs and cover up the bald spots in the back I'll be ok.. hopefully.. if not may be gauze? Have u tried gauze in some places?
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Amelia - My infusions lasted 5.5 hours each (after the first one, which was 8 hours) and I tolerated the cold caps without any real difficulty. Are you taking Ativan and Tylenol before your sessions? If not, that may help.
Amelia & JLove - Re wigs: There are styling products designed for them, different for synthetic versus human hair. I use Jon Renau "Piece Out" contour fiber cream to style the fringe on my synthetic wig and a small amount works pretty well and can be refreshed with a bit of water. Another great tip I picked up on YouTube is to use a small amount of Got2B Ultra Glued Invincible Styling Gel along your hairline and nape to hold your wig cap in place (if you are using one) and/or along your hairline to hold the wig in place. It's water soluble, so you just run a wet washcloth along the area when you're ready to remove. https://www.target.com/p/g-246-t2b-ultra-glued-invincible-styling-gel-6-oz/-/A-15088485
Does your wig actually fit your head properly? My first one did not; it was much too loose even in a "petite" cap size, and I realized that I disliked the permatease on top, which made it look poufy and "wiggy" to me, and also added weight that made it slip around. Fortunately it was not expensive so I bought another inexpensive one that fits my tiny head much better, has less volume/density and zero permatease. This one feels light and comfortable, looks quite convincing, and my friend thought it was a pricey human hair piece! Cannot recommend this site highly enough both for shopping and info gathering: https://cysterwigs.com/
My eyebrows have become extremely sparse and are still shedding and I am terrible at drawing them on. Went for a consult on Monday re microblading (which my MO gave the okay for now that I am PFC.) It's a big splurge for me but I liked the salon owner and think it will make a huge difference, so I'm booked to have it done in about two weeks. Collecting photos of my "ideal" brows between now and then.
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Hi ladies! I have lost most of my hair on top. At this point, I don’t think a combover works anymore. I’ve bought a few hats and a few scarf-caps. I can’t tie a scarf on my head for the life of me. So I found these pre-tied scarf caps that work great. Next step is a wig. I’m already spending so much money on cold capping to avoid loosing hair, that it just doesn’t feel right having to spending more on ways to cover my lack of hair. But I cannot go out without something on my head. It’s pretty bad. I’m hoping Taxol will be easier!
Amelia - yeah, AC was not kind to my hair. Not at all. But my MO is still surprised that I have any hair at all. He said without capping I would be completely bald by now. So I guess I can call this a success. Lol! I’m doing taxol every two weeks. Not sure why my MO preferred this, but that’s what he recommended.
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I now 4 weeks PFC, don’t see any new hair growth, still shedding but mayyybbee slowing down (or possibly wishful thinking), starting to lose eyelashes which I have thankfully had the whole time, and have thinning-but-still-there brows. My hair is at least 1/2 as thin as it was to start so I wear a human hair topper when out. My stylist gave me a 2” dry trim to below shoulder length hair a few days ago to cut the dead split ends off so my hair would blend better with the topper. It looks SO much better & I haven’t noticed any more shedding than usual. Cold capping still totally worth it!!
What I would like to ask about today is: has anyone experienced leaden legs and edema (in legs) PFC? The heavy sore legs started around round 5 but edema started PFC-onc assures me ‘it’s a thing’ (aka not out of the ordinary), but with bilateral bmx coming up 4/11 I’m a bit concerned. If you did, how long did it last?
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I realize I’m obsessing but for anyone who has done both AC plus 12 weekly Taxol and cold capped was the Taxol even just a bit more foregiving in terms of shedding?
A ton of hair still comes out every.single.day
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Amelia, I had 4 AC + 12 weekly taxol and used Penguin CC. Even though I lost about 50-60% (overall thinning), my shedding slowed down about 3-4 weeks into Taxol, then I stopped shedding completely around week 6 and new hair started growing. I know at least one more person who experienced the same. There is a light in the tunnel. Keep capping and baby your hair. Good Luck!
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2catsintheyard - Yes, I experienced edema in my legs and mine started a week or two before my 4th Taxotere/Cytoxan treatment. I can't remember when it went away, but it took maybe a month or two. I was a regular at Physical Therapy for my arm so my PT gave me some compression hose to wear (not fun). She also advised me to lie on the floor with my legs straight up against the wall whenever I had the time. At work, I sat at my desk with my feet resting on some cases of water. A low stool will work or something just so my legs were not constantly straight down. I think walking helped. There are all kinds of foods you can eat to help with lymphedema.
Even after the lymphedema went away, my legs felt "wooden" when I ran, and that lasted a good 5-6 months PFC. Radiation also added to my lymphedema.
But now I am 11 months PFC and I can run so much better. I don't have the wooden feeling anymore in my legs. That might seem far away right now, but once I was several weeks PFC, I started to feel better and better. So even though my hair was still looking awful, at least my body was feeling a little better each week. And really, I have felt like my previous self since 5-6 months PFC.
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I haven't posted too much lately, but am thrilled to now share that I am officially "PFC" after completing my 4th/final round of TC today! My MO was so happy with my blood counts throughout, including this morning's pre-chemo draw, that she approved my getting my port removed ASAP, so her office was able to get me scheduled for next Thursday (4/5)! Next stop: 3.5 weeks (19 rounds) of radiation. I've scheduled the simulation (mapping) and hope to get it started by the latter half of April. After that, I'll meet again with my MO and start on the aromatase inhibitor meds.
They didn't have a real bell to ring at my chemo center, so I have go with the next best thing.
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Yay Shlomit! Congratulations 🎈🍾🎉 to you on ringing your 🛎 real or not! Another hill climbed, another battle won.
I also won a small battle today-it was the first time I saw any hair growing on my crown bald spot! My husband mentioned it & then I felt it (can’t see up there too well). Baby bird fluff-yay!
Thanks GoKale-it’s always nice to hear that “it’s a thing”, that others have been there before & and there’s a ‘normal’ to look forward to.
Does anyone else have surgery next month? I have bilateral nip sparing direct implant scheduled 4/11, have been gathering & readying according to surgery advice board. I’m 1/3 let’s get this over with, 1/3 I’ve totally got this, and 1/3 holy crap this is really happening.
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