Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Cria, I had 4 dense AC + 12 weekly taxol. I used Penguin CC and lost about 50% (overall thinning, no bald spots, may be a little behind the ears). I never had to wear a wig or head coverings. My hair started growing back while on Taxol. I washed my hair only 1Xweek. To have good results with AC you should strictly follow Penguin protocol. Good luck with cold capping!
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ykh, a question for you. I just finished my 4 AC Tx and will start Taxol next week. I'm using DigniCap and have probably lost 40-50%. I know some people start to regrow while on Taxol, but did you continue to shed all during Taxol? I don't have any bald spots but it's pretty thin at the crown.
Thanks!
Kim
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- Pictured above are two partially used bottles of Toppik. Both are labeled "medium" brown. The short bottle I bought off the shelf at CVS. It's darker than the tall bottle which I bought online
- I don't need these anymore. Rather than throw them away, I would like to offer them to one of you - no charge - if you live in the United States and in the continental 48 states
- You can send me a private message with your address.
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I am on Taxol, 12 weeks, once a week. I am using the Paxman Cooling Caps. I just had my second infusion with the Paxman cap, and this time, I noticed splotchy red dots along my hairline. I am wondering if it is the chemo, or the cooling cap. Has anyone experienced this?
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Hello my comrades! I just wanted to tell you of my cold capping experience and give you as much info as I can, so you will be prepared for the trauma of losing lots of hair, but hopefully keeping enough to cover your head! I am more than happy to tell all about this process so please let me know if you have any questions or need any clarification. I absolutely hated the process of cold capping- it made me feel more and more nauseous every time, but I would do it again, and that’s saying a lot!!!!!! Perhaps Ativan would help with the nausea?
First and most importantly, HAIR TO STAY is an organization that helps you pay for this!!!!!!!! It is an easy application and they paid for more than half the cost. Second, and of equal importance, penguin cold caps loaned me “discounted caps” when I told them I couldn’t afford their caps. I don’t know if this was just my lucky day, or what, but you can always ask.
I started with a VERY thick head of hair. First of 4 doses TC March 19th. First big hair loss was around 18 days later. Lost A LOT of hair and it was horrific!!! Bathroom waste basket seemingly full of hair for a couple of months. Combed daily in the AM with wide toothed comb. Used scrunchies (cringe, not my thing) to prevent extra pulling. Washed my hair every 4 days at the most, despite daily exercise! Don’t be surprised when you have more hair loss after showering. Used organic shampoo and organic leave in conditioner (kenra). Shedding will continue every day, but will eventually lessen. Hair will be all over you, your floors, bed... I now dread the sight of loose hairs!!!! Last dose May 21st.
I am now a couple days shy of 11 weeks post final chemo. Hair is still shedding and I scour my scalp for new growth daily but am not yet finding it and worry it may not come. I’m not sure how this would work after cold capping but I guess I would only keep what’s left after shedding finally stops, which may be another couple of months (gasp!).
Pros to cold capping- NO ONE KNOWS what’s happening to me that I don’t tell!!!!!!! This is hands down the most incredible thing because the way some people treat you when they find out can be soul crushing- They just don’t know how to person with you anymore. And when it’s all over, this is one way you can more quickly return to some semblance of normalcy. And it’s also one way you get to rule your fate. You wanna shave your head when this is all over, it’s your prerogative, but cancer didn’t decide for you.
Cons: people that do know about what you’re going through may not be as empathetic as you may need because they are not constantly reminded of your situation by your baldness. And also, as previously mentioned, hair...literally everywhere.
And after all of this, I still have lots of hair! I don’t have any bald spots, but do have significant thinning on top. But it is completely hidden when I part my hair on the other side. I don’t know this will work the same for you, but hell, it’s worth a try!!!0 -
Heart song , thank you so much for sharing!!! Hopefully you will get back more hair!!!
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Thank you, Heart_song!
I appreciate everything about this post, but particularly the part about the nausea -- I was thinking this was my imagination! I didn't have it for the first six weeks or so, and it took me by surprise when it started. Just two weeks left for me. More shedding in the past two weeks than I have had previously, but no one else can tell that my hair has thinned. It also feels like straw it's so dry, but I really don't care!
Thanks too, for the point about a lack of empathy. I am not a complainer by nature, but I find that I have to mention how I am feeling, because I don't look sick and my co-workers seem to have forgotten what I'm going through. And yet, I am so grateful that I don't look sick and so do not draw attention when I am out in public.
Thanks for sharing, and for everyone who is just starting out -- it's totally worth it, I swear!
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Maybe an encouraging shedding report? …I’m 61/2 weeks PFC and still shedding lots. But I noticed that the shedding is coming more from the back and the sides, where I did not shed during chemo. The places where I did shed, the crown and the part, seem to have stop shedding. I hate the overall thinning, but I’m happy that the crown and part area have stabilized, as that is a harder area to hide. Anyone else notice this PFC pattern?
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Rwns, I'm glad to hear that maybe there is hope for me. I'm 5 weeks PFC and still have quite a bit of daily shedding from the crown and front. I keep telling myself that eventually, the shedding will stop. I had my first hair appt and he cut off quite a bit more than one inch, but the hair does feel much healthier. Now, if I could just color all the new gray growth, I'd feel quite a bit better. I know Penguin says to wait 6 months before coloring, but did any of you color sooner? The stylist asked about trying a temporary (no ammonia or peroxicide) product in a few weeks.
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A quick update: I just finished my third week of weekly Taxol using the Paxman cooling cap. Absolutely no shedding yet, though one of my infusion nurses told me hair loss usually happens about a month after the first dose for women on weekly Taxol. I am only washing my hair gently in lukewarm water twice a week. So far so good. I will report back next week.
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Glad you are off to a positive start acee-ess!
I am so happy to report that I have one week left! Penguin caps are working well - I am shedding more in the past few weeks, but have no bald spots or noticeable (to anyone but me) thinning.
I am so grateful for this technology, and will be so glad to pack up those crazy caps and send them back!
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Maggie - yes, I colored early, at about 7 weeks PFC. however, I was not shedding at all; I had weekly taxol and hardly lost any hair. The first two colors I used a temporary color, and then went back to my regular salon color. No issues, and it was awesome to get rid of my long gray roots!
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PatinMN, thanks for your reply. I was on Taxatere and am still shedding a lot. What temporary product did you use? I have my exchange surgery next Wednesday. As impatient as I am to get rid of the gray, I’m thinking maybe I should wait until after this recovery before I do anything to my remaining hair
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Maggie-right there with you! I’m 7 weeks PFC and super nervous about doing anything! Worry my thin remains will vanish if I do anything! On a bright note, I am definitely having less part/crown shedding-still plenty from everywhere else. But overall, definitely slowing down. Lashes went awol awhile ago, but eyebrows have just recently departed. Learning how to draw them in, but really adds on time to the morning routine!! Just started Arimidex (day2) will up-date. Overall, I’m super grateful for CC, made this whole scene easier..hang in there everyone! 😊
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Maggie - it was Clairol Beautiful. It wasn’t that great, but it was better than nothing! As it washed out it turned my hair sort of green.... I’m sure there are other products out there that are better
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Patin, I think I’ll wait a few weeks before I go for the green look! After I’ve recovered from the exchange surgery, maybe I’ll ask the stylist for a recommendation on a temporary color that he’ll do in the salon.
Today is 6 weeks PFC. My front hairline and crown arecoming back pretty well, but now like you, Rwns, I’m losing hair from the back of the head. My eyebrows were gone weeks ago, but are also starting to grow in, though patchy. I still have enough sparse eyelashes to use mascara, luckily. Even though I haven’t had the success with CC that others have had, I am grateful for these results.
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I waited 6 months to color my hair, but when I went in, my stylist suggested I wait another couple months. So I waited 8 months PFC and got a non-permanent color done. I used dry shampoo with some color in it for a while - Batista is the brand. There may be other brands out there of dry shampoo with a hint of color.
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GoKale, thanks for the suggestion. I hadn’t heard about that product. I’ll look into it, as this gray growing in is very annoying. It is way too dramatic with my old hair color to even try to pass It off as ombre
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I have a question about Paxman cold caps fitting. I m 123 pounds, not a big person. Tried small cap and it’s feeks ok but not extremely tight. The nurses who trained to use Paxman system are new - they just installed recently the machine so I have so many ifs... what is small size is big on me ? It doesn’t gathers up on a top of my head but when I pressed my hands down on the cap it’s felt more tight.
During my first chemo I rote cap 45 min prior and 2 hours for treatment and 90 min after.
Can someone explain me how tight tha blue cap should feel on my head- extremely tight or not !
After they removed- I had ice on my hair- is that indicator of right fitting?
Ps. I didn’t feel so cold during treatment only at the end . And at the beginning just a bit. Otherwise had 2 cups of tea and warm soup and 1,000mg of Tylenol before.
Concerned.... Thsnks for input
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Bostongal, I’m using Penguin caps with dry ice, so I can’t help with your specific question. I hope someone who used Paxman will chime in here. I did want to tell you that not feeling cold doesn’t mean the cap wasn’t working. We were putting caps on with -30c as the temp, I was icing my hands and feet, and I was in a t shirt the whole time. Nurses thought I was nuts. I’ve just normally hot, and have always had a high cold tolerance.
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Bostoniangirl25 - I am also using Paxman - I am using a medium cap as the small was too tight but the medium is slightly big/loose at the back of my head so I made a Velcro strap to wrap around the Cap to keep a tight fit at the back - I think as long as the cap is fitted/touching all the areas of your head it’s fine. I don’t think it has to be extremely tight.
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Thsnk you ladies, it’s also a little bit loose on the back , maybe I should use Velcro!!! Thsnks for advice!!!
Does anyone had ice in their heads after?
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Did anyone use the Arctic Cold Caps?
Also, can anyone help with suggestions on changing the cap for the ride home after receiving treatments? Im thinking we will need to stop on the way home?
Thank you!
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Cindymb, I m using Paxman but you can google Arctic caps some bloggers use it and write about their experience. Going home you have to take off the cap
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Cindymb, I'm using Penguin Caps and just had my first infusion on Thursday. We did have to stop on the way home to change the caps. We hung out in the waiting room of the infusion center for 10 minutes after I was done to change a cap right before we left, then took a route home that had a lot of stores on it, went to the back of a Walgreens parking lot, and changed caps again. By that time, you and your capper(s) will be so good at it, so you'll get it done quickly and be on your way! I ended up having the caps on for a total of nine hours, and I was fine. If you have any questions, please feel free to ask
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Appyfan,
Thank you! Also, do the caps get cold enough by the time you would need them again? The amount you receive is less than the number of times they get changed.
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They did, but I had followed the Penguin protocol for the initial cooling-completely defrost the caps for 2days prior from the home freezer, then add cap 1 to the dry ice 50 minutes prior to 1st cap, next one 30 min prior to 1st cap, then 3 mins after. Those first caps didn't feel cold enough, and didn't seem to measure cold enough. Luckily, the infusion center was running slightly behind, and I had been told they couldn't hold up the infusion if we weren't ready with the caps, so we got there early and started capping in the waiting room. We had already done a few cap changes before I started the pre infusion meds. We met another patient whose boyfriend had really been practicing with the caps, and he adjusted my cap twice, and gave my cappers a bunch of pointers. They thought we had been initially doing the temp wrong, and it was actually ok from the beginning. I’m highly cold tolerant, so from the midpoint on, I was telling my friends to just put the caps on at -35C (my target temp was -28C). They really didn’t feel that cold to me, but I’ve always been hot. I’m not sure how the chin straps are for Artic, but that was the only thing I found uncomfortable. We were strapping them down so tight, my jaw hurt at the end, and still is a little sore today. We put a towel under the strap. Next time I might try a fleece noseband cover (horse stuff). Other people have said a thick, soft sock works well too. Or we could just not strap my jaw shut, LOL
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Cindymb, I used Penguin. They sent 4 caps and I was concerned as to whether they would get cold enough after each swap. After the initial chilling on dry ice, we never had an issue with them not refreezing in time. With my infusion appointment, we were always driving home during rush hour. Like Appyfan, we chose a route that had lots of shopping with parking. We always stopped to switch caps twice and sometimes even three times
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Like Appyfan, We also arrived for the infusion early and would start capping in the waiting room.
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Thank you girls for all of your advice. I am grateful that I am able to do this. Were they successful for you all?
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