Cold Caps Users Past and Present, to Save Hair
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Hi Nisha517
I had the most fall out after #2 but the shedding did slow down - I’ll be doing #5 Oct. 1 - I still shed every day but not a huge amount - my hair has thinned and I have thin hair to begin with but I still have hair - I also have an extremely thin spot on top but ur right it could be worse - I am also doing TCH and I am cold capping with paxman - just crossing my fingers to hang on to my hair the next 2 rounds - I hate brushing and washing my hair lo
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hi bheg79,
Thank you for your response. I am hoping that the most fall out will just remain to the 2nd treatment. I am using the penguin cap. If there is a little bit of fall out, I completely understand. I just don’t want to lose all or most of it. And yes, I dread washing and brushing my hair, especially washing. There’s so much fall out when I’m brushing my hair after washing it, I just want to cry. I have decided now that I just won’t wash my hair much since it doesn’t feel too dirty anyways (no grease/oil). I will pray and keep my fingers crossed that you have no more fall out for the final 2 infusions
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Hi Nisha517,
Everyone is different, but I also had a big hair shed after round 2 and thought I'd be bald by the end of chemo. Got some great support from other cold cappers on this forum which made me feel much better. I think I've lost 40-50% volume, but I can still go out without a head covering (granted, my roots are really grey, and I have to use StyleEdit, which is the spray temp color I have always used on my roots between salon colorings). As everyone told me, hang in there!
I also made a couple of changes. My hair is a about 4 inches past my shoulders. I would normally wear it down with a thin plastic hair band to keep it out of my eyes. I wore it that way until the big shed. I think that was a mistake, because it made it more likely to tangle. Then it would take me longer to brush/comb to untangle. Since then , I wear it tied back loosely with a satin scrunchie. I also found that for me, brushing very carefully broke/pulled out less hair than using a wide tooth comb. I also use a spray Argan oil leave in conditioner all over when my hair is wet after a wash (cut that down to weekly), but don't try to comb/brush hair until completely dry. As it's drying naturally, I will fluff a bit with my fingers to separate hairs I carefully brush my hair in the morning, tie it back with the scrunchie, and leave it alone the rest of the day. Before I go to bed, I carefully remove the scrunchie, making sure to hold my hair above the scrunchie to take pressure off the roots as I remove it. Then just carefully fluff a bit with my fingers. I sleep on a silk pillowcase to minimize tangles.
Timing wise, I just had my third infusion 9/20. I’m also nervous about my weekly wash because the 3 day after chemo was on round 2 was my biggest shed so far. Hoping that doesn’t repeat for round 3
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appyfan-
Thank you for the advice! I do conditioner in the shower, but I should start doing the leave in conditioner out of the shower, as well. Yes, I’m afraid that if the hair does continue to fall out the way it did after the second infusion, I will lose all my hair by the time this is all over. So I ordered a prosthetic wig which will arrive in a few weeks. The uncertainty of now knowing whether or not the cold caps will fully work was too stressful for me. Especially at a time when life’s just too crazy right now. I feel the wig will help me relax a little bit about my hair. However, until the wig arrives, I will continue to cold cap The only new concern I have is that I recently found out that Taxotere can cause permanent hair damage. I really hope that she not true!!
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Nisha517, that chance of permanent baldness was what pushed me to cold cap. I can take anything as a temp side effect, permanent is a different story
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I had also read about the possibility of permanent hair loss with taxatere. This certainly was a major factor in my using Penguin cold caps. Paxman or Dignacaps aren’t offered anywhere in state here. I certainly didn’t see the success that so many have, but I did keep some hair and the new growth is coming in very quickly. I would suggest you continue with the capping, as some hair saved is certainly better than no hair. I also had ordered a wig, but I’ve been mainly wearing baseball caps.
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yes, being permanently bald would be a constant reminder of the cancer. Everyone’s telling me that the chance of permanent hair loss with Taxotere is rare. Here’s hoping
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Hi Nisha517,
I still have my hair, of course it's thinner but no one in my office or friends notice a difference. I always colored my hair but of course we can't do that with the cold cap, however I did find this little compact with a powder to cover up my roots and or sparse spots that I have on the very top of my head. It's called "Color WOW Root cover up"
I didn't really follow all the rules exactly, so I do was my hair maybe 4 times a week gently and I blow dry gently cause I still have to go to work and try to look normal. I did cut it to shoulder length or a bit above to make things easier.
Going for my 10th taxol/herception this Tuesday. So three more to go, I'll let you know how the hair holds up...anyway its just hair
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yes, definitely let me know. Sounds like so far it’s going great for you
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Has anyone here buzzed there hair while continuing to use cold caps? I am 2 treatments in and have a big bald spot in the back at the top and am very thin on top and sides. I'm considering just buzzing it so it doesn't look so ridiculous, but I want to continue cold capping to prevent permanent baldness (Taxotere). I'm not sure If I can with Paxman though. I feel like I have to have SOME hair under the cap.
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I used Paxman for all 4 rounds and was extremely disappointed. I was told over 50% of people keep over half their hair but I didn't. I started with very thick hair and was told I would lose hair all over but I ended up with several completely bald spots (top and back of head) and tons of hair loss. I followed the directions to the T and even kept the caps on for a full two hours after treatment ended. My opinion is the caps help you regrow hair faster but you still end up buying a wig or using a scarf or whatever works for you. I think they are oversold and overhyped. I think they work better with thinner hair because it is easier to get the scalp cold. The video tells you specifically not to cut hair (trims are ok) because it supposedly shocks your hair follicles and makes it more likely that hair will fall out, so I didn't cut it, only tiny trims but the three different hairdressers I spoke to thought the theory of shocking your hair was wrong.. Good luck, hope it goes better for you. (I'm 2 months-post chemo and all the bald spots are gone.) I think the biggest benefit from Paxman is really growing back in faster. I also found washing or brushing my hair so depressing so I hardly did it.
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I am a week post infusion 2 of 4. I am doing Paxman but have most 70% or more of my hair. I have amplixin growth serum - I am thinking of starting it a week after infusion 3. Thoughts? Thank you!
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I used the paxman cold caps for DD AC- T and was quite pleased overall. I had very thick hair log hair, and I kept 90 percent through AC, but Taxol was hard on my body and it thinned significantly as treatment progressed. However, At least it thinned evenly, and due to the volume of hair I began with, it was absolutely unnoticeable to anyone but me. I was able to work, go to functions and events without anyone suspecting. Annoyingly, I lost all my eyebrows and lashes and continued to shed head hair rather heavily in the weeks AFTER chemo finished. Right now, at almost 6 weeks post chemo, it’s at about 50% volume . I think it’s it’s very thin, straggly and quite blah, ugly even, relative to my thick healthy locks of before, but i have no holes or patches and at least thin is way better ( for me) than bald . I suspect that my surgery ( bilateral mastectomies 2 weeks ago) will contribute to some further hair loss, , but that has no bearing on the cold cap.
In reply to an earlier poster, I also wanted to say that I found that the type and fit of the cap was crucial to success. It must fit perfectly snugly and closely to work. Bald patches are a direct result of improper cap fit. I myself have a small high narrow head, and initially the caps they tried to use were a terrible fit for me - suited only to shallow large square heads. My attendant was very diligent about the fit and brought out the newer caps from the UK which were a massive improvent in fit and function over the older models. I also found that the attendant on duty made a massive difference to the outcome of the service. Some were fabulous and fitted the cap very carefully, others, not so much. I had to call their attention to air bubbles or adjust myself . I’m in Canada and used Cold Comfort. I’m happy to answer any questions anyone might have
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I also had good success with Paxman. Had pretty thick hair to start with, says my stylist. Kept at least 50%, maybe 60% of my hair. No one can tell, until I point it out, that it's kind of thin, especially at the crown, and my scalp is more visible than normal there, and also visible where I part it. But, styling can really cover all that up. At my infusion clinic, nurses accommodated, and the Paxman machine was onsite, but I had to put my own cap on.
Used a lot of cinching and a lot of conditioner (as directed) to slick my hair down everywhere right onto the scalp--maybe 2-3" near roots. Spent maybe 15-20 minutes each time, in the bathroom of the infusion room, getting my inner cap on and then the outer cap cinched super tightly everywhere. Medium inner cap and size Small outer worked for me, for Paxman. And the supplied hairband at front hairline. Wish there had been even more straps, and the new ones do have extra cinching on the outer (neoprene) cap now. But it really did work. Followed the long protocol that they specify, which meant 30 minutes before infusion and 90 minutes after. It was absolutely worth it, and my thinner hair passes for a regular head of hair. Never put on the wig that I bought Just In Case.
I'm 2.5 weeks PFC and hair continues to fall out, as it has all along, but just a few hairs a day now. When it was 20-50 hairs a day (every cycle at days 19-22) it was never clumps, just strays everywhere. Definitely have been wearing a kerchief or snood when cooking, since hairs fall out everywhere all the time, and that's a bit icky in food!
Lost 50% of eyebrows and 75% of eyelashes, but teensy new ones are starting to grown in while old ones are continuing to fall out!
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Well infusion 5 took out much of my left side, which had been of relatively sufficientthickness until then. We used a smaller cap this time and the sensor was digging in to my scalp there so I am guessing it blocked the cooling fluid. Anyway I have invested in some hats. I have one more infusion left and I think it’s going to be pretty sparse by the end of this.
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BCSucks1:
I’m using Dignicap but it’s the same type of thing as Paxman. I had thin, slow growing hair so I thought my hair might be more resistant to the chemotherapy and the cold capping would be more effective but I have lost over 50% of my hair and am pretty bald on top and have some bald spots on the sides.
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HikingLady:
While I’ve lost a lot of the hair on my head, I haven’t lost my eyebrows, but my eyebrows have always been sparse and thin. A few eyelashes fell out in the beginning but most of them are still in there
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unfortunately, cold capping isn’t an exact science. I had my third infusion yesterday and hopefully my last time using cold caps. I’m hoping my prosthetic wig will arrive before my next chemo and I won’t have to deal with cold capping. The uncertainty of whether or not it’ll continue to work and the process is so stressful. I’m using penguin caps so the preparation is tough and having to change the cap every 20 minutes is super difficult. No time to just relax. And we have to continue the caps up to 4 hours after the last chemo treatment of the day. At least with the prosthetic wig I’ll feel like i have all my hair and can wash and style it like I used to before all this chemo nonsense started
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Hey Girls,
Long-time lurker, first-time poster!
I am on Taxotere, Carboplatin, Herceptin, and Perjeta for 6 rounds. Just had my 2nd round yesterday.
Like others, I had some shedding days 19-22, but it hasn't been too bad so far. Maybe 10-20 hairs a day? I still have 4 rounds to go, so fingers crossed it stays this way.
Anyway, I wanted to share my experience using Penguin Cold Caps in case it helps anyone else.
For the first infusion, we actually paid a local PCC therapist to show my husband the ropes, so he could take over for future infusions. She does one major thing differently, which I think might help a lot. Penguin's kit comes with a stick thermometer (like a meat thermometer) that you're supposed to use by folding over part of the cap and waiting 40 seconds for a reading. The problem is, it doesn't give you a consistent reading throughout the entire cap.
INSTEAD, the therapist used an instant infrared thermometer (it kind of looks like a gun— you hold down the trigger to take readings, and it's instantaneous). It allows you to take readings of every single area and corner of the cap. If it's too warm, you can take a smaller chunk of dry ice and vigorously rub that part of the cap until it cools down. If it's too cold, you can take a washcloth and rub that area so the friction warms it up. Or you can lay chunks of dry ice on the warmer parts, while letting the colder parts warm up by themselves, etc. This process takes about 5 minutes, so plan accordingly.The result is a cold cap that's virtually all the same temperature, which I think helps prevent bald spots, or uneven cooling.
Again, I'm only 1/3 of the way through so my experience could change, but I thought I'd share my experience so far!
FWIW I have thin hair to begin with, so that might also help(?), but on the flip side, I definitely don't have much hair to spare, so I hope I don't lose too much!
(We're also going to try to wear the cap for a couple hours every Saturday (just from the freezer, no dry ice) to see if it helps protect some of the new follicles from any roving chemo. I got the idea from reading posts from the weekly taxol gals who said their hair started growing back during that time. Maybe it'll help, maybe it won't.)
Happy capping!
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Hi Ladies
Thanks so much for starting this forum and for sharing your experiences. I need your help. I finished my first round of chemo about 18/19 days ago, and going in for my second this Friday. I used the Penguin caps and think I have been following the rules as they have described. I started shedding some a couple days ago and it has definitely increased the last day or so. I just can't figure out if this is normal shedding and I should stick with the caps or if this is the beginning of the end for my hair. Any advice? The penguin people said its normal to shed but just not sure how much is normal. Any advice? any thoughts on what is shedding is normal?
Thank you
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hi I also used PCC for 4 rounds of taxotere and cytoxan-kept about 80 percent and then shed some for another 5 months-so ended up with about 75 percent-thrilled with those results-no one could even tell=made all the difference for me emotionally-sounds like you are right where would be expected--you will lose hair-just a different amount for each person--Do keep capping-- is your best shot for keeping as much as possible and for helping regrowth of new hair--dont give up!!! Hugs to you,Kaylie
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2018summersuck Oh, I SO like your name on this forum, ha ha. That's exactly how I feel about my 2018 summer!
Ditto exactly what kaylie57410 says, and people said the same encouragement to me at same point. Yes, it's shocking when some falls out, but my Paxman success was pretty great.
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I'll reiterate what kaylie57410 & HikingLady said although I did not have their success. But with 3 Taxol Tx left I already have significant re growth started and it's not the typical post chemo baby bird fuzz. I'm hopeful that it will hang on through the next 3 weeks and the PFC shedding.
Good luck! I really do think it has been worth the $ and the shivers!!
Kim
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Ugh!
DigniCap machine down today! Second time having to delay a treatment because of it. I'm so close and I just want to be done!!
Wahhh!
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Using dry ice and Penguin caps as my only option for cold capping, I was very envious of everyone that had access to either Dignicap or Paxman. Kdrake, I hadn’t thought of the downside being that the machines could go down and end up with treatment delayed. That would really be upsetting.
2018summer, I followed Penguin’s guidelines exactly. I still lost about 70% of my hair. I’m 3 months post chemo and definitely have much more hair now than if I hadn’t cold capped. I would reiterate what others have suggested that you continue on
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I will also reiterate - keep up the cold capping if you can stand it. I lost a ton of hair the first couple chemos and it got thin. However no one knew I was undergoing chemo unless I told them. Now, five months out, my hair is so thick! I never had to wear a hat or a wig (didn't even buy one). I thought it was horrible and thin at the time, but looking back at pictures, I can't even tell.
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Thank you ladies for all the encouragement on the cold caps. Had my second round of TC yesterday and my doctor said you will probably lose your hair in the next week. He isn't really supportive of the ice caps, and it was quite the downer when he said that but I going to listen to you ladies and keep going.
thanks again!
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do keep going!! Many docs still havent had much experience with cold capping-I also had 4 rounds tc-kept 80 percent of my hair thru it and lost another 5 percent thru shedding over the ensuing 5 months-I had no bald spots or widening part-most of the hair I lost was all along the lower hairline at the edge of the caps-didnt eve realize till it started growing back in--is so important to make sure the crown of the cap is pushed down tight to scalp and held down with the straps-this is with Penguin caps--pelleted dry ice much better to use than slab--be positive- you can do this--hugs,Kaylie
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I have been using Paxman for 6 rounds of TCH - I have thin hair to begin with but I’ve kept prob 80% of my hair so far - I have one more round left - I do have a definite larger thin spot on the top of my head but unless you’re looking at the top of my head you can’t notice - I have also thinned overall - just wondering if any of you can give insight as to how fast the thin area will start to fill in? I’m hoping by feb or March it will be filled in somewhat for when I go back to work - I am very grateful to have been able to use paxman as I was able to physically look and feel somewhat normal. Too bad I couldn’t save the eyebrows and lashes but I’m hoping they will grow back pretty fast after my last treatment oct. 22
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Thank you.. it appears that Im losing the most from the nap of the neck. Thanks for much for the support. Its tough to hear from a dr that's not going to work and then see shedding, but you ladies are helping me. Thanks for taking the time.
Did any of you use any special products to help stimulate growth? Seems like penguin doesn't want you to use too much besides a natural shampoo and conditioner.
Thanks again.. truly!
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