Cold Caps Users Past and Present, to Save Hair
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Hi everyone,
I just had my last 6 of 6 chemo yesterday. All done with coldcapping thankfully! Those pesky caps are getting boxed and shipped out back in a few hours. Hope to never need them again. So far I have about 80 percent of my hair left. It's very dry, brittle and breaks easily from the chemo. It's shedding quite a bit too.For me the shedding accelerated after chemo 4 and hasn't let up. I don't know what the final results will be, but I'm hoping for some regrowing before I lose too much more. Currently, I have mostly thinning with some part widening. Everyday since starting chemo 3 1/2 months ago has been a “ bad hair day" for me but despite being a mess, no one could tell I am a chemo patient. It really helped to look in the mirror and mostly see myself. So far it has been well worth the hassle and pain of capping. My MO claimed they don’t work and discourages patients from capping. It’s my goal to prove her wrong.
When I get a few months PFC I will post before and after pics on the site.
Good luck to all fellow cappers.
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Thanks to everyone who replied!
I am meeting with the new oncologist tomorrow and will now start chemo, with the Dignicap, next week!
Interestingly enough, I receive a patient resource book from my original oncologist yesterday which described scalp-cooling as an option during chemo. This morning the MO nurse called to confirm my switching doctor's and reiterated that the doctor does not believe it works and it hasn't been approved because of the slight risk of scalp metastases. Hmm, they may want to get their story straight!
I'm not looking forward to chemo, but I'm finally not dreading it like I had been.
Kim
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Jsan, I am 8 month PCT. I stopped shedding in the middle of Taxol treatment and started to see new growth. Now I am totally back to "old" me
Try to take biotin (10000 mg) daily and you will see a difference. Good luck!0 -
Did a practice run with my Penguin Cold Caps tonight. Holy cow, that was complicated! Please tell me it gets easier!
I'm struggling to figure out how to protect my ears. I read that some use baby socks - how the heck do you get them to stay on? Any other earsuggestions welcome
Tomorrow is Day 1 of 12 weeks of Taxol. Thinking of everyone who is on this journey right now!
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Someone on this website recommended using pantiliners to protect forehead and ears.... use one pad for forehead and cut another in half. Use each half on an ear. I bought unbleached organic ones, and the adhesive kept them in place through 7 hours of capping. I had back ups cut in case I needed to replace during my 4 rounds of chemo, but never needed them. I developed a sensitivity to the adhesive on bandaids, steristrips, paper and plastic tape after my 2nd surgery, but the pantiliner adhesive never bothered me. Super easy and provided excellent protection... no problem with skin damage from the cold on those areas.
Capping does get easier after you've done it a few times. I used penguin and while it seems like so much to remember, you really do fall into a routine.
Sending positive thoughts for an easy first session!
Willow
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Mobscene-Baby socks...that’s awesome, hadn’t heard that one. I’musing panty liners, works pretty well, but certainly not as cute! Yes, it gets much easier!
Ykh and Rockcity-yay for you!!! So glad you’re done and thank you so much for the encouragement!
KDrake-Good luck next week...sending warm thoughts for your 1st cold capping!
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mobscene207- yes. Putting on the PCC gets easier. Some of the caps were a battle at first , but by the end of treatment my husband was a cold capping machine! He even had the timing for cap temperature down to a science. I also want to let you know that for me personally, the caps got less painful each round. I don’t know why. Maybe I just got used to it. I did start taking 2 Tylenol and an Ativan starting with round two.
Pantiliners work great for the forehead and ears. Just cut to fit. They never fell off during treatment but removed easily afterwards.
Good luck with your capping and infusion. Let us know how it goes
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Kdrake, I’m hoping you can go into your former dictor’s office after you’re done with chemo and show her that you still have hair. I know my oncologist was skeptical but after seeing how well cold capsworked for me and other women, she now recommends them.
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Treatment #1 went pretty smoothly. Timing the placement of the first cap was the most stressful part.
The coldcapping provided lots of laughs for us, and for the nurses (as I told one of them "I have a panty liner stuck to my forehead and baby socks on my ears - it's ok to laugh!"). The nurses all said they have seen it work for other patients, and were supportive. Mostly they seem a little baffled that I'm willing to put in that much of an effort!
Also, our local dry ice dealer sells it wholesale to chemo patients!
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Mobscene-One down! Good for you! How nice of that ice dealer! Glad it went smoothly...wishing you minimal side effects!
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I had 5 cold cap treatments while in taxol and my hair was in tact Then I had to switch to Abraxane Because of an allergic reaction to taxol
After 2 Abraxane treatments my hair shedded and thinned to the point that I had to get a wig to be seen in public Has anyone else on Abraxzene had this happen
Very disappointing and expensive
Manza 1
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Manza - I received 6 rounds of Taxotere and Carboplatin (as part of TCHP) and had enough shedding/thinning, including PFC, that I am wearing a wig in public as well.
Although I wish I'd held onto more of my hair, I am still grateful for what I have and glad that I cold capped. I'm 11 weeks PFC and new growth is definitely filling in. But the texture is fine and "fluffy," and much too fragile to blow dry or color. So it's just not pretty.... My wig looks *much* better. (I attended a wedding this past weekend and received multiple compliments on my hair.)
I'm hoping I'll be ready to go to my stylist for gentle color and a chin length bob in another month or so. But after all of this time and effort, I will wait a bit longer if I need to.
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Attention Dignicap users:
Just to share that it took 4 EC and 5 Taxol to FINALLY understand which cap combo (the old caps, not the new click caps) to fit me. I lament the way the clinic didn't try to mix and match the sizes but can't put any true blame because they honestly thought they were doing their best.
I completed 4 EC with minimal to no patches (shedding, but not visibile) and then it all went south from there. The extensive daily shedding in the following weeks was purely due to the cap not fitting with enough adhesion to my head, because where it did fit closely (underneath the sensors) I still have a good amount of hair.
In these last 4 weekly Taxol treatments we have done silicone cap M with neoprene S on top. It gives the best fit because the silicone S doesn't fit a human head without bubbling up at the crown (And I am a size S normal head for any other head covering).
I wonder how my hair would be had I had the proper fit from the get go ---- but wondering isn't going to solve anything, so I just thought to share my experiences.
Wig everywhere for the past two months. I am hoping to use the wig hair for extensions once the base grows out enough. Has anyone tried that?
The good news is that my hair has stopped shedding in the past 3 or so weeks (so starting Taxol 5/6) and has started to grow back. It looks like something that came from someone else's head (all grey and thin and straight) but hair it is and any hair at this point is good.
Like many others have said, any bad hair day is better than a no hair day.
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12 weeks PFC here and I have much the same situation as magari-plenty of dark & grey fill in where crown bald patch was, but it feels fluffy and fragile. I am going to my stylist tomorrow where I was going to lighten up with either a temporary color or a more permanent one but I think because I am still waiting for that hopefully-not-mythical day when I stop shedding, that I might chicken out and just keep wearing my blonde topper exclusively. What with summer coming on it sure would be nice not to wear anything though...
Has anyone found a blond hair color that is really gentle?
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Question to all of you cold cappers out there. I'm using Penguin Cold Caps with no success. Currently have only about 10% of my hair remaining after 4th infusion of Carbo+Taxol every 21 days. With 2 more treatments to go, what do people use to help cover up? According to the cold capping company hired to change the caps, they said to not use anything.. no wigs, toppers, hats, scarfs... nothing. Has anyone not followed those rules to the letter? If so, what worked, what didnt.
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Question to all of you cold cappers out there. I'm using Penguin Cold Caps with no success. Currently have only about 10% of my hair remaining after 4th infusion of Carbo+Taxol every 21 days. With 2 more treatments to go, what do people use to help cover up? According to the cold capping company hired to change the caps, they said to not use anything.. no wigs, toppers, hats, scarfs... nothing. Has anyone not followed those rules to the letter? If so, what worked, what didnt.
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NoRouge - Sorry to hear you're not having the results you'd hoped for. There are many of us in the same club.
I am not a poster child for following the cold capping "rules;" due to a scalp condition I've been washing my hair at least every other day after the first few weeks.
I developed a very thin spot on top around my Round 2 (of 6) that continued to get worse before it got better. I wore berets when out in public during active chemo treatment, and switched to a wig shortly thereafter. Two of the berets are wool, but I also have a cotton knit one for warmer weather. https://www.amazon.com/Classic-French-Beret-Adult-Cotton/dp/B00CIZHK44 I've actually received lots of compliments when wearing the berets: "I love your hat, you look so French!"
If you read through this thread you'll see that many women have had to wear scarves or head coverings of some sort at some point. The important thing is to find something that doesn't pull on the hair or allow much heat to build up. This is a difficult process and we each just have to figure out how to make it work for us. Best of luck.
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Hi! I will be undergoing 4 rounds of TC in 2 weeks I don't have family in Las Vegas who can help me with cold capping during chemo. I was wondering if you know anyone based in Las Vegas Nevada who knows about cold capping can help me do it or who I can hire to do it for me?
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Hopeisetern- contact your cold capping representative and they will probably help you find somebody in your area. I pay extra to have an attendant who brings the caps and stays with me through the whole process.
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Hi everyone!
I am due to start chemo in a few weeks and have been researching endlessly on Penguin cold caps vs the Dignicap or Paxman. I luckily have access to all three but want to see if anyone has feedback for which may work the best?
My chemo treatment is still up in the air but AC-T is a very likely possibility and I know the chances of me keeping my hair is the least likely with this (the other possibility is TC).
I would prefer to do the Dignicap as less of a laborious and manual process, but will do whatever is best in order to increase the chances of at least keeping half of my hair! Any feedback would be greatly appreciated and apologies if this topic has been already addressed. There's so many pages on this topic which shows how wonderful and supportive everyone on here is.
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Manza - YES!!!!!!! That happened to me and I didn't put it together until I read your post!!! I did 3 Taxotere infusions and lost VERY little hair but had some major reactions to it so oncologist switched to Abraxane for my last one. Three weeks after that one Abraxane my hair fell out in droves. Bald, patchy spots on top and very thin!! and I continued to shed pretty bad for a good two months. I am now 5 PFC and wear a topper/volumizer.
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DTR808 - I had AC+T and used Penguin CC and lost about 50% overall thinning. The studies show the Penguin CC has the highest success rate with AC+T. I would definitely recommend Penguin CC! Good luck!
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thank you, ykh! Appreciate the feedback
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DTR808-I used Warrior Caps out of Dallas TX and Loved their personalized service, educational videos and level of caring. They were great partners to have through the already stressful chemo journey.
Also, I took the plunge and let my stylist 'lift' my color and add some highlights using non-ammonia product and no heat processing at 12 weeks pfc. It's not perfect and not totally blonde, but SO much better and and it's all still there! There IS a light at the end of the tunnel-we won't always have bad hair days. Hang in there everyone. It's totally worth it in the long run.
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8 days past round 3, and definitely still shedding, but still able to avoid wig/cover. Fingers crossed. Good luck with that pain-in-the-rear capping everyone! 0 -
Hi everyone!
Just wanted to update 1 week after my first AC infusion. The Dignicap was bearable, pretty good headache for about 10 minutes as it was cooling and then numb. That darn chin strap! I did use a washcloth to pull it away. Time will tell how well it worked. I'm using the new cap with 3 maxi-pads to shim the yellow (largest) size to fit.
A question - my scalp feels "funny". Almost like it's numb but not really. I figured it's because of the "frostbite" induced by the cap, but thought I'd ask if anyone else has felt like this.
Thanks!
Kim
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kdrake1007- I recently completed 6 treatments with Penguin Cold Caps. During chemo, my scalp frequently felt tingly or even sore. This was more common early in my treatment but it continued off and on throughout the entire 3 1/2 months. I think it was caused by the chemo, not the caps. These sensations did not have any correlation with hair loss for me.
Good luck with the dignicap and the rest of your chemo!
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Thanks, Rockcity
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Hi, everybody. My onc makes DigniCap available to his patients. I had my first chemo infusion on Thursday, which meant I wore the cold cap for a total of 5-1/2 hours that day. Fortunately, the machine can serve two people at a time, so I had a chemo buddy for the duration. I took Tylenol before--never got a headache. The first 20 minutes were of adjusting to the cold was pretty bad. After that, though, my scalp was numb and I didn't feel anything but a distant coldness numbness on my head. Before I switched to this doctor, I had planned to use Penguin Caps. In retrospect, I'm glad I didn't have to. I don't know if I could have coped with cap changes every 20 minutes. My onc does not charge anything on top of the $300 Dignicap fee, for which I'm very grateful. His nurses attend to everything, which is a great comfort.
After the 3-hour waiting period, the nurse removed the cap. My hair was frozen underneath and sticking to the cap in places, so we had to let it thaw for about 5 minutes. The tips of my ears were bright red for about half and hour after the treatment. My scalp warmed up quickly.
In addition to the cold cap, I also iced my hands and feet during the Taxotere infusion.
One unexpected surprise was how low the cap was on my head. I had expected to be able to listen to an audio book through earbuds, but that was not possible.
I'm all for anything that gives me a little hope -- and some sense of control through all this.
Will report success / failure.
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SandyF- which chemo are you doing? I’m doing Dignicap and never had it for 5 hours. I did it during pre-meds (30 minutes), the hour of Taxol (30 minutes with EC) and one hour post cooling.
It needs to warm up to 10-12C before taking off your head (after post cooling) - which is a few minutes (maybe 5-7) more.
I’ve never tried ear buds with it but maybe your cap isn’t fitting properly?
It is essential that it squishes to your head otherwise it won’t work well enough. If you scroll back I wrote about my experience.
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