Cold Caps Users Past and Present, to Save Hair
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I am new to this site and not sure how to start a new thread, so hope I am doing this right. If not - my apologies.
I am wondering if anyone has suggestions on how to detangle hair without losing it. I just had my 2nd chemo with Taxol last Thursday - 4 days ago - and am using cold caps to try to keep my hair. I started losing more and more strands of it over the weekend and unfortunately it is also starting to knot up - almost as if it is heading toward dreadlocks. Would be so ironic to keep most of my hair with the caps but have to chop it off because of the dreds. I am regretting not cutting it shorter than I did before starting chemo. I was going to but was advised against doing anything too drastic before I had to. Should have listened to my gut. Anyway, I am not sure what to do now as far as these knots. And shampooing, etc. I would so like to keep my hair especially with two big family events coming up - one just after chemo ends and the other in Jan. Would be so nice to have my hair for those pictures which will be forever. I have 6 more rounds of chemo to go. Two more with taxol and then four with the dreaded A&C.
Thanks.
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Hi Jammin
If your hair is long I would cut it to right at or above your shoulders. Worry about style later. Then work On all those knots. If I had left my hair to my waist I would be in knot hell!!
I keep a spray bottle and a wide tooth comb and a brush and use those most mornings. The brush for the long ends and every now and then the scalp to make sure I don't miss cradle cap. The comb does not get the flakes out😡
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jammin2 - if you look back at page 525 of this thread there are some discussions on getting out knots. There have been many discussions on that topic over the years! I didn't have that problem so I can't really help, but some used corn starch which apparently causes the hair tangles to slide apart; some use spray detangler. Maybe the people who used corn starch will stop back and describe their method - it's been posted before on this thread, but there are so many pages it's hard to find anything. Not sure if the "search" function would help. We were all advised not to cut our hair before or during chemo, so that the "weight" on the hair follicles would remain constant, but I don't know if cutting hair actually causes more shedding or if the instructions are just super cautious. Good luck!
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I had my 2nd round today (still have 99%of my hair), but it did to go well. I had a reaction to the TC. My throat closed and I could not breathe. It was so scary! I did get a rash last cycle that they said was unrelated, but now I'm thinking it was the beginning of something. I think we are going to try CMF (cyclophosphaide, methotrexate and 5-fu) instead. Any try these meds? Do I need to cold cap? My MO said they are easier on the hair.
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StarsAreStars -- I'm getting treatment at Sierra Hem/Onc at Mercy San Juan. Not a five star experience -- but did survive the 1st tx, whew. Where have you been treated?
WBCs crashed (just found out today), so am on Neupogen this week to see how it goes. Hubs was a great cold-capper, have high hopes for the tresses... Only a week out, haven't noticed any changes, but I know it's early.
Was just looking up Neutropenia on some of the message boards and ran across some posts from some amazing folks who aren't cold-capping. Some righteous ladies were venting their fury on the folks who trivialize the hair -- you know, "it's just hair", etc. And the uselessness of folks shaving their heads in "solidarity" -- just serving as another reminder that we're f'd up (in addition to the reminder every time we look in the mirror). I've felt like kicking some shins when folks say that to me, so it's nice to be in good company.
I actually looked up "shaved head/humiliation" (careful on the Google, some crazy stuff comes up!), because of the emotional/identity/privacy stuff that goes with it. Scalping fits in there too, specifically as a humiliation. Interesting to see a collection/review of how baldness is emotionally traumatic. https://broadly.vice.com/en_us/article/untitled-article-1455633724
Interested in you guys' thoughts on this --
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sheri i'm pretty sure you will still have to cap as cyclophosphamide does list hair loss as a side effect but maybe Google and double check. Good luck with the new regimen
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Ladies,
I am sorry if I repeat a post that possibly was answered before but there are 528 pages to look through.
I am on weekly Taxol. NO AC. I had my 3rd yesterday, using Arctic Cold caps (elastogel). I picked them instead of Penguin cold caps because they didn't offer skipe training and the price for someone to come in and train was 750 a day! The lady who answered my call was not pleasant an. Perhaps it is only my experience. When I called AC C they were so great and their service is excellent. I called to complain that one cap didn't fit right and they replaced right away. So perhaps i didn't do enough research beforehand and who knows I might regret it. But I see most positive reviews from Penguin caps.. I am so worried about my result. Anyway, my question is if anyone was on weekly Taxol only, NO AC, when is the shedding starts? What should i expect? It's a day 15 of my weekly Taxol.
Anyone with good story about elastogel caps?
VK
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Victoryak - I used Penguin caps on weekly taxol/herceptin and had virtually no shedding. When I finally went in for a haircut after chemo, my stylist said he thought my hair was thicker than before! Here is what fluffqueen, posting on the Triple Positive board, said recently:
"On weekly taxol, I started shedding about day 16. I was able to not wear a wig until about week 7. I did not shave my head. At the end of chemo, I kind of had a beetlejuice look going, and then suddenly, all the odds and end pieces fell out right afterwords. But I did have hair growing in by then. My eye lashes and eyebrows did not fall out until after chemo was completed, so that was nice, an they were already growing in then. I will say that while on herceptin, it was slow growing in."
(Needless to say, she did not use cold caps.) I have seen other weekly taxol posters who didn't start shedding until well into their treatments. I think it's pretty variable for weekly taxol. You might consider asking about shedding on one of the weekly taxol boards: https://community.breastcancer.org/forum/80/topics...; or https://community.breastcancer.org/forum/69/topics.... Or there might be others.
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PatinMN, Thank you! I am glad you had a positive outcome!
I asked a chemo nurse yesterday when the hair usually start to fall she said week 6. So I guess i will not know till then if my cold caps work. Hope it is... I keep asking my husband did he made it tight on the top of my head when he put it on was it cold enough? I am so worried..My husband is my caper and it is a very hard job with these caps. He has to fix them bcs they so stiff out of dry ice and we keep changing them every 15-17 min instead of suggested 20 just to be sure it is cold. My hair short so i hope it will work bcs of the short hair and not to much on the top and sides cap probably touching scalp pretty good.
So we try, hope i will not have a bold spot. I am so worried.... and wish i would do Pinguins.. I think it might be too late and too costly to change company now. But ACC just great with service and i hope it works the same way as they so good with service!
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Ladies, wanted to share a small victory with you. I don't have a great relationship with my MO, partly due to cold-capping. (She was NOT supportive -- it's bad.) But I persevered and she accommodated.
So I'm only on Day 7 post first TC tx, but have to go in for Neupogen & PICC maintenance. Part of my
f-umorale maintenance when going into the MO's depressing, dysfunctional office is to make sure I look CUTE (as possible) and make them think twice before treating me so carelessly. Since it's 95 degrees today, I wore a knee-length flowery skirt and snug t-shirt (with PICC line hanging out, whatever), with my hair big and fluffy (I'm only Day 7
. Guess what? A redneck yelled at me from his car as I walked across the street!
Normally, I'd be inclined to give 'em the 1-finger salute, but this morning it made my day!! F cancer! F mean MO's! Look good, feel better, sisters!! 0 -
Great storcy SacCat. No one is going to do that for me today...I have a bald ass crown on my head. My baseball cap covers it but damn. They need to figure this hair thing out PRONTO!
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my mo who kind of blew off my cold capping said today at my last pre chemo appointment "your hair looks amazing!" I said "see!! You need to recommend it to all your patients! It works even if I've lost like 50-60% of my hair, no one knows but me:)
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SacCat, I read your other post in Starting Chemo in May group as well. You should not take crap from your MO!!! change her! My MO actually great. He is consider to be one of the top in the field.He didn't object for me to wear cold caps but he said why you need it? Who cares look at me!( he is bold ) lol. But he was ok with whatever I wanted even though I seen he was not supportive of my desission. But he told me medicly he has nothing against this.I actually love his personality he is funny and Makes you feel so good. I leave his office in good spirit. This is what you should expect from your MO ! You go through so much crap with cancer why take more crap from doctors ?
Good luck!!
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7of9 , what company cold caps you are using? Do you think bold spot because cap was not touching right top of your scalp? Do you have a lot of hair?
P.s. try to get a topper to cover it. It will clip to your remaining hair and cover it.
Good luck!
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I heart you all!
I would LOVE for my relationship with an MO to be psychologically healing -- or at least professional and reliable and not abusive... But it doesn't seem to be in the cards for me. (although I did just learn of a new doc in her practice who might be a candidate... another research project) I really went to the mat to get a good doc, or one that I could work with productively, but after three second opinions I ran out of time and couldn't delay chemo any more. My HMO only contracts with one oncology clinic, and I'm stuck with them. But I will eventually file a grievance... and either I'll change medical groups as soon as radiation is done (I like my radiation oncologist) or I'll get transferred to another MO in that practice. I do have to say I feel like I need to have one more chat with this MO to be really clear about my expectations and directly ask her whether she can meet them. I already know she'd rather I moved on though.... (My Nurse Navigator told me the MO asked, "why did she pick me?" Poor thing!)
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Hi Kathy!
I did my first chemo today of AC and used penguin cold caps - you rent them - 4 of them plus headbands which are optional but useful I think. In Spain where I live the medical centers have no facilities to freeze them for use so had to buy dry ice, train my husband to change them every 25 minutes. They are cold as go on at minus 30 degrees but after 5 minutes your nerve endings go numb and it is totally doable, although after having it on for 4 hours after chemo finished I was happy to get it off!
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I cheaped out and did elastogel. I think we nailed it the second time taking hair bands and an ear band (like you wear in winter) and snugged it on the top of my head and sides over the cap. But only had 3 caps and not enough dry ice (30 lbs) for first round. A fourth cap and 40 or 50lbs second round seems to have slowed the shedding way down. I justified the price savings and booked a vacation. Kinda wish I would have pulled the money out of savings for the penguins now. Sigh. Lessons learned. I am still capping my final two rounds to see if can coax hair back sooner and keep the tom petty stragglers to wear under baseball caps the rest of treatment. Also chilling does work...not one bit of neuropathy on hands or feet. I keep the cold caps switching for four hours after but not the gloves or mitts - those work! Well off to ready the coolers, mitts and caps etc....3 weeks tomorrow and I am done. Sure hope this, radiation, surgery, ooph, and AIs keep this crap away for good. Plus Zometa this summer.
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7of9,
why you have only 4 caps? Arctic caps come with 8 caps. And we don't follow protocol of every 20 min we do it faster sometimes when I feel it is getting not so cold we change after 10 or even 15 min. It also comes with thermometer that we measure temperature before putting cap on to make sure it is not to cold or cold enough. But I am extremely worried if it will work, what if it is not touching my scalp on the top and i also get bold spot :(I have nightmares about it:(
I also use dry ice. I found a great dry ice company in NJ that they prepare ice pallets and 8 bags of ice to put in each cap for me every Monday (my treatments on Tuesdays). These guys amazing ! First time i came to them they didn't even charged me anything for dry ice and after they only charge me $20 each time. They said it is for a good cause and they will not charge more. I was very touched that there are nice people still exist!
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Well, I'm doing the Newsboy look for the next while. Hair wash yesterday and Round 2 damage is done, my top bald spot is twice as big, its bad...4 more rounds to go...The rest of my hair is thinned but I look fine from the front, back and sides. Toppix covered up the Round 1 damage so tomorrow morning I try it on the bigger spot.
Add sunburn to the sensations of the scalp...I did a hike with Toppix on and never thought about the sun on my bald spot.
Cody - I think we're in the same boat...Toppix, hats, scarfs, bandanas, head gear...
Hanging in. Next Thursday is Round 3 and I will be 50% DONE.
A
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7of9- are you checking the temps of your hats? I'm finding that 80 pounds of dry ice is needed to maintain the temp. I rented 8 elastogel. Do you think yours aren't cold enough by the time the are used the 2nd time?
Sorry to hear about your bald spots. I have one but I just call it my little skullet. It covers with other hair. I'll fit in just fine at the fair or in prison.
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I am using Penguin. Today was week 4 of taxol, herceptin and perjeta. I have had NO shedding yet. I know it can still happen, I am only at day 21 but they say if you have most of your hair by day 17-20, they are working. I have met other women who are using Penguin and are having great results.
I will say, I am militant about following the rules. We have 14 caps and 4 gell bands plus the elastic bands. Normally we go through 12 of them. Luckily there is a freezer and coordinator at our facility so I don't have to worry about temps. I think you can try to get freezers at your facility.
When my husband caps me, I make sure that baby is TIGHT. I use the gell bands and the big elastic bands. I also follow the suggestions that penguin gives you for daily care. The only thing I do is add conditioner to the ends of my hair, keeping it off the scalp.
I wash once a week, take steps to keep my head cool when exercising and am extremely careful. That said, I still could have shedding but like I said, I know women who didn't shed at all.
I also haven't lost the hair on my arms, legs, eyelashes, eyebrows but I seem to be on my way to my free Brazilian, lol. Every one is different.
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I'm a newbie posting and I've had great info, comfort & some good laughs from your posts ladies & from other groups along the way. I started TC chemo with the Paxman cold cap 20 April & thought I'd add my bit on my current obsession - the hair shedding. I'm shedding lots. In fact, I find myself looking at Donald Trump's hair with pangs of envy at this stage. It no longer looks bad on my bad hair scale. My post is a bit long so apologies!
Timeline: I'm day 28 after 1st chemo dose (counting chemo day as day 0, if that's right?). I've been shedding continuously since Day 17. Day 21, had 2nd dose. Still looked like full head of hair, despite constant shedding. Since then, it's accelerated considerably in volume of loss. Yesterday was washday & a big shed.My fringe is 3/4 gone, sideburns almost gone, ever widening side parting, in fact a few "wide partings" areas, really thinning. I'd say I've lost 50% of my hair and getting to stage where I'll need head gear. From a distance it does look like I have a full head of hair but on closer inspection maybe that I've let a small kid cut it & desperately need to see a hairdresser.
Hair type: medium brown wavy to curly hair, average, not thick in a layered Bob (using that description loosely). Like some of you, my hair loss seems even darker.
To wig or not to wig: Had wig fitting day 22, but hope springs eternal & I'm putting off collecting it. Would wearing a wig on top of this fragile hair perhaps add to the hair loss? It's a limbo, waiting for the shed to either slow down or just get on with it and all drop. That's a downside of the cold cap, the wondering is it working or not.
Will it last? I've 2 more cycles to go through and reading your posts I am encouraged that perhaps within the next week shedding may abate. Also the comments that the cap promotes regrowth, so I'll keep it up. Fingers crossed.
How cold? For anyone concerned about the cold, everyone is different. The woman beside me took ibuprofen & was wincing & clenching her fists in pain for 15 mins. Yet I was worried mine wasn't cold enough as it didn't bother me at all. Perhaps swimming in the cold Irish Sea over the years helped.
The fit: I'd agree on the importance of fit too. 1st treatment, I had a small cap & outer cap. I felt the inner cap rise slightly & I wasn't happy as it felt like there was a small bubble on my crown despite being clamped down by the outer cap. It's very important to be vocal with any concerns 1st treatment which is hard as its all new. Thankfully, there was ice on my crown when it was removed. I still worried but when I started shedding, it was all over & not specially the crown. For 2nd dose, I was refitted and the new size combo combined with a Terry makeup band I brought from home to secure the loose nape of the neck area worked great.
@lydialydia you sound in the same boat as me, same start date. But I'm guessing if we hadn't cold capped we'd be bald by now.
Good luck everyone!
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Now I am getting more worried. Girls, did anyone with NOT Penguin caps and on Taxol only used caps that worked? Hope to hear positive reviews. I am so worried, have nightmares that my Arctic (they are elastogel cc) will not work.. It's too early to say, I am on a day 16 and with weekly Taxol I believe it starts shedding much later. My Chemo Nurse told me hair lose starts around week 6.
Hope to hear some positive reviews....
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Just to add to the MO discussion, my MO is wonderful and is the one who suggested cold capping to me. But she didn't know much about it. She was very impressed and said she will recommend it even more after my great results! We really are trailblazers, ladies!
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For those of you with questions about shedding, I did't start shedding until day 21. I'm on TC. I am 26 days past #1, but did not have #2 because I had an allergic reaction and had to stop the treatment. I am still shedding, but no one can notice.
Anyone take Abraxane instead of Taxatere? I am meeting with my MO tomorrow to discuss my options.
Sheri
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Sheri - I didn't have Abraxane, but it's the equivalent of Taxol but the "solvent" used is something different that doesn't cause allergic reactions. (Or something like that...) My understanding is that it's a lot more expensive than Taxol, which is why they only use it when someone has an allergic reaction. Anyway, if you end up with weekly Abraxane you should have excellent cold capping results just like weekly taxol.
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Leesville, thanks for sharing your experiences and welcome to the group!
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victoryak- I had my last chemo today and I've been using elastogels with great results. I have one bald spot under some hair on my crown but the rest of my shedding has been very even. Everybody at the infusion center is impressed. I'll be done with cold capping in 2 hours! I'm glad it's over but I would do it again in a second! I had so many people tell me going bald was a badge of courage. That's great for people to have that much confidence. I'm not one of those people. I just saw it as me looking in a mirror and seeing a sick, bald person looking back. I don't have to go bald to earn my badge of courage. ALL of usearn it every day we fight this disease.
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Sheri - I don't know if taxotere and taxol use the same solvent. They're related drugs - both taxanes - but you'll need to ask your MO about why in particular they think you'll do better on Abraxane than on taxotere. And let me know! I'm curious now!
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