Cold Caps Users Past and Present, to Save Hair
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OK ladies...I FINALLY compiled as much as I could all of the tips I could from you guys into one post. Here it is:
Cold Caps FAQ's - newbies - how to save your hair from chemo
I don't want that thread to balloon like this one. I want to keep discussion here, where everyone already is ballooned together, lol. I want the new thread to be a reference and will refer people back here when they ask more questions and need support! Please try to help me with that.
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Thanks Hope for reminding finished cappers to post their pics on the other thread. RoxGo you look awesome - thanks for paying it forward by posting your pics there!!!
Here's the link to that thread where you can post your pics: Cold Caps: Success Stories with Photos here!
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MB12, not to quibble with others, but I think the protocol calls for four hours after infusion time for the most part and research supports the longer post-capping time.
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Does anyone know of any freelance cold cappers in the Philadelphia area! I tried Komen Philadelphia, my hospital, local cancer orgs, etc. but no luck. I have eight rounds, and if my helper gets sick or something or can't get off work, I will need a backup!
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THANK YOU Dancetrancer for the awesome post with all the newbie info - it's fantastic, and I know will be a big help. I'm going to add the post LadyGrey wrote to her chemo center when they were giving her a hard time. (p.s. the link you have for posting pictures actually goes to the new tips page)
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Dancetrancer,
Thanks for putting together the awesome newbie thread - it's so organized and clear, I just wish the information had been that organized when I needed it in May! Five weeks after diagnosis, I was surprised with a recommendation to start chemo immediately, and I didn't know about cold capping at all. I had less than a week to learn enough to decide, including ordering the caps in time, yikes.Picking through hundreds of pages of comments was so daunting that I almost abandoned the whole idea as just too overwhelming. i'm very glad I persevered, but your work has made it a lot easier for newbies like I was to get on board a lot faster than I did. Yay!
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Thank you hope! And thanks for telling me about the incorrect link - I corrected it! That was chemo brain in action right there! ha ha
And thanks so much for adding Lady Grey's letter! It is awesome, so glad you found it!!!Wildflower, you are most welcome! I remember I struggled to learn all that huge amount of data in a VERY short time period, too!!! We all just can keep paying it forward - our way of thanking the cold cap pioneers who paved the way before us. We are all collectively making it easier and easier for those that follow us to save their hair, one follicle at a time!
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Great job dancetrancer on the newbies site
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Hi All. My last treatment is this week. As odd as it may seem, I am anxiously waiting for the day to arrive to get it over and done with barring no issues. I am on TC 4 doses every 3 weeks. I had massive shedding between dose 1 and 2 then it calmed down and now it's picked back up again. Has anyone experienced something similar where there is continued somewhat heavy shedding between doses 3 and 4? Starting to get concerned that I may not have hair left to make up for continued shedding PFC. Thanks for any insight or shared experiences!
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Aj93 I shedded Continueously throughout chemo I was always picking hair off my clothes, hair always on the floor, in the car in fact all over the place. I finished chemo with a head of hair although my part was wider, 14 weeks on my hair has filled in on top and my head is completely covered although my long hair is now very thin and I'm still shedding slightly I have never needed a wig or other covering. At the moment my hair is so thin that I clip it back with little claw clips that a little girl would use as its that thin but when it is washed and clean it does look passable to wear down.
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aj93,
I had the same treatment as you (TC 4). I also had the heaviest shed between doses 1 and 2. It took me until my 3rd chemo to even relax and believe I was going to keep my hair - I'm serious! :-) I continued to shed at a slower rate through treatments 3 and 4. My hair was never that thick to begin with, and I was pretty worried I'd run out of hair before I got through treatments. But I finished #4 with enough hair and you will too! I'm now 12 weeks pfc, have been shedding during all that time, and I still have enough hair that I don't need to wear a hat or wig.
I know it's hard not to worry, believe me, I know! This thread is the best support ever and there are some great folks on here who have given me lots of support both during and post chemo. Just go into your last chemo, do your job with the cold caps, and know that we're here for you!
Wishing you a great final chemo day, no side effects, and smooth sailing ahead!
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Thank you, Aussiegirl and Wildflower, for your encouraging words. I am still happy I did cold caps! I am just a bit freaked out by the amount of shedding after round 3 especially when I feel that round 3 was the best of getting the cold caps on nice and snug on the head.
Thanks again! I sincerely appreciate the encouragement and shared experiences.
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so maybe TMI, but has anyone experienced dandruff during capping? I've never had dandruff before in my life so I know it's the caps. I'm not sure what to do since I'm sure dandruff shampoo is a no-no... It's not terrible right now but the flakiness is getting worse. Yuck
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tshire - most likely it is cradle cap, very common for cappers to get this due to infrequent washing. Geralyn told me to mix a tsp or two of apple cider vinegar in with my shampoo, then shampoo with that mixture. It fixed me right up.
If you had frostnip of the scalp, it could be that, too -dead skin flaking off.
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aj93,
yeah, I sort of felt the same way - just as I and my helper were really getting the hang of capping, we were practically finished, and anything that happened during the first round or two couldn't be changed...but on the upside, we were practically finished which was a great happiness in itself!
Keep us posted on your progress!
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thanks for the tip dance tracer I will try that!!
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Hi everyone, I have hesitated to write because of the problems I have had. Between weeks 2 and 4 from the first infusion I lost the majority of the hair from the top of my head. Not totally bald but nearly. I still have hair on the sides although it is quite thin. We did have trouble with the Elastogel caps the first time as the gel shifts and freezes in lumps if they are not shaped by a bowl or other insert while in the coolers. We did not know this could happen. We were more successful the second time. I have 2 more infusions to go and so far am planning to continue capping to save the remaining hair. I can cover my bald areas with a baseball or knit cap, which I feel does not announce cancer patient the way the scarf covering the entire head does. My hair was long, worn in a ponytail, but I cut it to just above shoulder length before chemo. So I still have some hair hanging loose under the hats. I am still shedding some and if I lose too much of the side hair I will just have to give up and shave it. Altogether it is very discouraging and not at all what I expected to happen after all the effort we have made. Has anyone else had the result? We bought the caps from Elastogel as it saves more than $1000 over renting.
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So sorry to hear this MadisonMom! I suspect it is due to the poor fit the first round. Makingway has said that she puts dry ice in little baggies and stuffs the Elastogels to make sure they get cold enough. I never used the Elastogels, so that is all I know. Oh, and she also says you have to change the caps more frequently, more like 20 minutes vs the 30 with Penguin, due to the Elastogels warming up faster. Have you been doing that?
Sounds like the Elastogels are not coming with the best instructions for their success. The manufacturer really should be made aware of this. Perhaps you could write them with your experience? Several have had very good success with them, but you have to know these little tips and tricks, I think. I put them on my FAQ for newbies thread, but unfortunately we didn't have that thread put together before you started. I so hope you are able to make it through without losing all of your hair. Hugs!
Also, Penguin advises you do not cut nor color your hair prior to chemo.
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I did research on recommendations from Penguin and Chemo cold caps and followed advice from several women on this board. I cut 1 - 2 inches from my hair 3 weeks before chemo, had the caps at -30'C, changed the first 2 caps at 15 minutes and all others at 25 minutes, wore caps for 1 hour prior, all during, and for 3 hours post infusion. Elastgegel's instructions are useless as they recommend capping for only 15 minutes before chemo, so i ignored their advice and followed what I had learned from the previously mentioned sources. That's why I thought I was going to succeed.
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Oh MadisonMom, I hope you aren't looking at what I wrote as a criticism? Geez that was not my intent at all. I'm trying to help you figure out a reason for more hair loss than you expected. I hope you can feel that I am trying to be supportive, I only intend to be helpful and encouraging! I guess I didn't come across that way. so sorry, I don't want to add to your time of stress!
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I 'm sorry if I came across as defensive. i am just incredibly frustrated that after all the research I did that the caps have not worked well for me. The only problem I can think of is the lumpy gel in the first infusion. Has anyone else experienced a failure like this? Also should I expect more overall shedding with each infusion?
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It's ok, you are under incredible stress! Hugs!!! Hopefully others with experience with Elastogels will chime in!
You might want to PM makingway, she has experience using elastogels with clients.
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Madisonmom I used elastagel caps from chemo cold caps. What dancetrancer said was correct. They had my cooler filled with dry is plus a bag inside each cap with dry ice too. After each cap was used the bag of dry ice was put under each cap. I rotated all caps by number and switched every 25 minutes. I wore them 1 hour prior, during and 4 hours after. I had ACT chemo and lost total about 45%. I used a band around my head and another that went under my chin to the top of my head. If the band around your head is too tight the top of the cap will pop up a little and you won't get great contact on the top of your head. I had a lot of thick hair prior to chemo and shed A LOT during with 2 big sheds throughout.
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MadisonMom - I failed chemo cold caps (Elastogels) which I rented. I am now bald/buzzed to nothing and did it 3 weeks after my fist TC chemo . There were very good instructions but I don't think I ever had a really good fit due to the shape of them no matter how much we stretched and shaped them. The straps were also too short but didn't know that until chemo day. The elstogels also never felt super cold to me despite being at -30 using the infrared thermometer (though I have thick wavy hair). The rep warned me that the area of biggest fail was the crown (like where someone would wear a yarmulke) so we were quite diligent in getting contact there. At 2.5 weeks after chemo my hair came out in clumps - this was NOT shedding - entire sections came out and I was bald beneath. I went bald in a donut/circle around my crown! (which is the squared off part of the elastogel - you know what I mean). If you want to see pics I can post them. The yarmulke area/crown was pretty intact, as was around my face and nape of neck. I could not effectively cover the bald areas and I was stressed about my hair all the time. It was not worth continuing. I'm too low maintenance for that. My hair was wash and go - no blow dryer, no styling. The maintenance with capping sucked for me.
I am very happily rocking the bald! I do not wear a wig. I'm in uniform (military) at work and am working in-between chemos. I am very visible around the hospital I am stationed at, but not seeing patients and staying in my office a bit more to avoid some germs. I've lost more hair since buzzing it off, probably because not I am also happily showering and washing my head vigorously everyday (yay!!) and not worrying about my hair. Such a relief!!!! And...the overnight temps are already below freezing in the southwest and I need a hot shower to be happy and that includes my head! My second chemo was last week. I did not cap obviously since I'm shaved bald. I expect to lose my face framing millimeter of hair in 2 weeks.
If I had a do-over, I would absolutely try cold capping again! It was worth it to try and I would recommend it to others to at least try! You can see it works for many! If I had to do it again I would go with a different brand though and try the Penguin caps - the shape seems to be better and more people have success with thinning only and not losing clumps/areas.
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MadisonMom did you rent the caps from the company chemo cold caps in Dallas or another company? I had very good instructions & the caps were always very cold sometimes too cold.
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I bought the caps from ElastoGel and they provide poor instructions so I did my own research.
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hey ladies, AC #3 on Thursday and still doing well. As I look ahead I wanted to see if anyone could share their experience with weekly Taxol, since we can't wash 3 days before or after chemo does that mean only 1 hair wash a week? Did you experience less hair loss? Anyone more hair loss? I think it's the sheer amount of treatments that bothersme even though they are low dose. Would love any feedback! I have still been too scared to do any "hard" workouts where my head gets too warm. I'm so afraid of undoing all the good but I sure miss exercising. Hope everyone is having a good Monday.
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Hi LRFTexan -- I just finished four ACs and about to start my first of 12 Taxols on Thursday. I'm interested in hearing what the more experienced Taxol x12 cold cappers have to say (I don't think there are a lot of them) but I've heard that on weekly Taxol some women have reported new hair growth -- whether they used cold caps or not. And I've heard that weekly Taxol is associated with less hair loss overall than AC. I lost a good bit of hair on AC (mostly on the top of my head but overall thinning too, despite the cold caps) and I'm really hoping that things will start to turn around on weekly Taxol so that when it's over I'll have some new sprouts to cover up my really bad combover.
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Ok ladies, I'm wondering what cold cap companies are out there that I'm not aware of. If you read this, could you please tell me what company you are getting your caps from, as well as the cost, and if they ship to Arizona?
I received a grant from CCAPS, and they "recommend" Penguin Cold caps. The grant is for $300 a month, for 4 months. The cost of the caps is $580 a month, plus shipping, and dry ice etc. So I'm still paying 300ish dollars a month. Wondering if thats the best way to go...?? I really am grateful for the grant, I'm just making sure that I'm covering all the bases here! Thanks so much !!!
Jodi
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Jodes, I think the highest success rate is with Penguins. It's a more adaptable fit and that's the key.
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