Cold Caps Users Past and Present, to Save Hair
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Cassie, I left them in the boxes. It is safer so they don't rip. If you are the only one using the freezer, there should be plenty of room. If you can get home during the time of one cap session, I would go home, but you will need dry ice to keep them cold enough and then would have to take them back to the center two days before to make sure they are cold enough for the next session. Good luck
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I just finished my 12th weekly taxol chemos with 12 corresponding cold cap sessions and I am so happy with the outcome. Yes my hair has thinned but to most people they would not know I'm undertaking chemo. I will post shortly a more detailed summary of my experience and some photos. So glad my oncologist suggested this to me and encouraged me to give it a go
I have two questions for those post cold capping
1. How long did you continue shedding for?
2. How long did you wait before you coloured your hair?
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below is a pic of the igloo "cube" coolers that I bought. I use 80lbs of ice weekly:
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Angiesgo- CONGRATULATIONS!! Yes, please post some pics...would love to see how you did on the Taxol regimin! I am 1/2 way through Taxol this week. 6 more to go after that!
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well today I hit day 20 post chemo #1 on TC and I nervously washed my hair. I only lost a few strands. I've had an increase in hair loss over the past 3 days-maybe 40 strands/day, but no clumps or chunks. And nothing on my pillow in the morning.Is it too early to call cold caps a success? I have my 2nd treatment tomorrow.
Does anyone know why you aren't supposed to wash your hair 3 days before and 3 days after? I really had to wash my hair today. I do a lot of distance running and my scalp gets sweaty. It's really hard to go 6 days without looking really sketchy!
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Runner, according to the Penguin cap inventor, if you still have hair by day 21 you will most likely keep your hair, although shedding may continue. I'm not sure about the frequency that other people washed their hair, but I washed mine 2 or 3 times a week during chemo and in the first 2 or 3 weeks pfc. But I hear you about the dirty hair! I was definitely not a fan of the "crack ho look" as one of my fellow cappers so elegantly phrased it, lol. But, it all passes! And it was worth all the aggravation in the end!
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Just had to share with my cold caps ladies... It's stormy and rainy and VERY windy here. So, I'm not the only one having a bad hair day today!
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Hilarious JCS28, how are you feeling this week? I've got blood work tomorrow and see if I pass for round 5 next week.
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EstelaLorca -- I'm feeling good! This is my "good" week, but this round hasn't been too bad. I am continuing with normal life but just going to bed a little earlier than usual. It's not that I'm tired, it's that I'm SLEEPY. How about you? Good luck with the blood work tomorrow!
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JCS28 - this is suppose to be my good week too but I've been feeling so tired. I wonder if it's the accumulation of chemo or I'm fighting something. So I hope My numbers are good and that I get to pass go to round 5 🚴🏼
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I walked into chemo today and I swear, jaws dropped that I had hair! All the nurses came over to watch the cap changes because they've never seen it. My dr said I should be down to a fuzzy head by now, she was impressed. Hopefully it continues. I worry I'm not doing it right because my head doesn't really seem that cold but the thermometer doesn't lie. Nor do the icicles.
I'm losing 50-100strands/day but I'm ok with that. It's not alarming and even if it doesn't slow down, that's not enough to notice even if I lose that much for the duration.
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EstelaLorca, I'm sorry you aren't feeling well. I know the fatigue gets worse every time. Hang in there. You're almost done.... 6 total, right? And try not to be disappointed if they delay your next one. You know it's just for your own safety. But it's hard when you plan your life around those dates. Keep us updated! Remember how amazing you are. Every. Single. Day.
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Wildflower and Runner- I would definitely sport the "crack ho" look if I didn't wash twice a week. I am on weekly Taxol...so I wash48 hours after chemo and 48 hours before next chemo.
EstelaLorca- hoping your blood work is good and you get to skate into #5 ⛷.
JCS28- lol about everyone's bad hair days! Same here in New Orleans today! I kinda feel bad and sort of smiled to myself when I thought to myself, "everyone has 'crack ho' hair today!! 😆😆😆.
I am officially 1/2 way through today!! Just finished #6 of 12. Hair still here!
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thank you Runner70, that put a smile on my face. I've been in bed all day watching Netflix and eating oranges. And I'm happy to hear that the cold caps are working for you!! I hope for continued succes.🤗
Congrats nolagirl for reaching the halfway mark, and with hair!!! 👍🏼
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Below is my experience over the last 12 weeks with Taxol and Cold caps.
When my oncologist suggested that I needed chemo, his very
next words were "we can retain your hair via cold caps". Like many women, I was
petrified of losing my hair and i really wanted to choose who i told about my cancer rather than being forced to due to how i looked. At that time I had never heard of scalp cooling/cold caps
and had no idea what was involved.My oncologist was confident that it would work for me due to
the Taxol chemo treatment I was about to undertake. He showed me pictures on
his phone of his other patients and the success they had.So I was willing to give it a go and thankfully due to my
private health insurance I was able to get into a hospital that offered the
service very quickly.I used the Paxman machine. Ive attached a picture of what
the machine looked like. Once its connected to your cap via the hose you see in
the picture, it continually pumps out cold air to a certain temperature to
freeze the hair follicles. I do have great admiration for the amount of effort and diligence required for everyone doing cold caps manually because the machine does make it really easy and hope the USA starts to introduce this approach into more hospitals soon.My typical treatment day was as below
- I was given Ativan to take under the tongue to take the edge off that initial cold feeling. This usually takes about 30 minutes to kick in
- Whilst the Ativan was taking effect my canula was put in ready for infusion
- I then went to the bathroom with hubby who helped to wet my hair and place conditioner on it and comb it back to ensure there was no partline
- Back at my chemo chair, the caps were put on.There are 2 caps a silicone one underneath and another one that sits on top with the chin strap. I wore a Large inner cap and a Medium outer cap to ensure a tighter fit. The chin strap was annoying but tolerable. Its important that the cap is fitted properly and you have a snug fit, the nurses were great as they knew what to do but by the end I became an expert too
- The machine is then turned on and cold air starts pumping straight away. A 30 minute timer is set at this stage and my pre meds are given at this point too. The first 15 minutes were the hardest, after that my head was so numb I could not feel it.
- Taxol infusion then started after the 30 minutes was over, this typically took about 1 hour.
- After the Taxol was over I had to sit with the cap on for another 1 hour. When I had Herceptin every 3 weeks, this hour was used for this infusion so no extra time was really needed.
- So overall the cap was on for 2.5 hours, a few times when it was taken off I had icicles on my head J
I repeated the above 12 times over 12 weeks. I really did not think I was initially going to tolerate it as I do feel the cold but it was easier than I thought and my encouragement was when I went in week after week and the nursing staff and oncologist were amazed at how much hair I still I had, it gave me the drive to keep going with it.
My home care was as follows:
- When I got home from treatment, my hair was flat/wet from conditioner etc, so this became my wash day. I washed with mild organic shampoo and conditioner which was free from all parabens, sulphates, perfumes etc. The gentler the products the better. I also used luke warm water.
- I lightly towel dried and then sat outside to air dry, thankfully it was summer and it would dry quickly
- I never used the hairdryer the entire 12 weeks and I usually have styled hair so this was difficult
- My roots became a problem after a few weeks so I used some root touch-up products that were free from Peroxide and Ammonia and they helped to camouflage the grey hair.
- I used some Argan Oil at the ends as my hair got dry as treatment progressed. I used no other styling products.
- I only combed my hair with a wide toothed comb, no harsh brushes etc
My Hair loss progressed as follows
- Hair loss started at Week 4/5
- Hair loss was consistent, I did not have a big shed at any point in time
- Picture with the least hair loss is what I typically got daily after combing my hair
- The picture with the most loss was after wash day, this was always the most I lost
- The other two pictures are what my hair looks like at the end of the 12 weeks, as you can see I have lots of hair left, no impact on my part line either. I did have thick hair to begin with, I can notice that it has thinned but most others would hardly notice the difference.
Im not sure how much more I will keep shedding and there is varying opinions as to when I can color my hair and go back to normal styling. For now im going to give myself another 6 weeks of “babying" my hair as if im still on chemo and then hopefully get back to my pre-chemo hair routine.
I so wish it was available in more hospitals and especially in the public arena. My hospital had 2 machines (2 people can use it at the same time) which meant upto 8 patients could use it daily (AM or PM slots), on some days it was hard to get a machine and as my treatment progressed more and
more patients were using the scalp cooling as part of their treatment plan.
Im planning to talk to my oncologist about what it would
take to do some fundraising to get funds to buy a scalp cooling machine for a
local hospital that does not offer the service as yet, a little way I can give
back for something that was a positive outcome for me.Overall my 12 weeks of Taxol were quite tolerable , yes I got side effects but nothing I could not manage and I contunied to work and with keeping my hair too, this kept me sane during this difficult time.
Best of luck with everyone currently capping, just hang in there as it does work and its worth the effort.
Angie
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angiesgo- wow! You had a great result! I bet you are thrilled!! It's so interesting to see how we all go about the process differently but (hopefully) get the same result. My daily hair loss is slightly less than yours. It's nice to have a gram of reference.
I do mine the old fashioned way. Dry ice, cap changes every 25 minutes. But I do cold caps for 7 hours!! 50 minutes prior to taxotere starting, during my 2 hour infusions, then hurry home and do 4 more hours of cap changes. It's so much easier to tolerate at home where I can watch movies and relax. Omg I hope I have the same success.
One thing I've notice right off is because I have hair and look healthy, people at work forget I feel bad and tired a lot. So I suppose there is a downside to keeping hair. But the last thing I want is people thinking their doctor is sick and isn't capable of taking care of them. So I'll keep my hair.
Nolagirl- I went to New Orleans once and everyday was a bad hair day for me! Lol. I can't believe you have 12 treatments! I don't think I could do that. But I guess if that's what I needed I would find a way. Yay you!
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Angiesgo- Congrats again! (I posted a note to you, but on the weekly Taxol page). You are an inspiration to all of us!! 💕
Runner70- yes, 6 more to go! That's what Angiesgo did too! I have to wear mine for 5 hours daily. And the dry ice is $80 per week....so we have cut out eating out, almost completely!
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angiesgo-
What a great write up!!!! Congratulations!!!
Would you PLEASE consider re-posting the same post with pics on the cold caps Success Stories thread? I would love to have it there - you are a great example of a Paxman system success story!
Here is the thread:
https://community.breastcancer.org/forum/6/topics/...
Thank you!
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ok, so I am at day 16 with no hair loss other that like 30 hairs yesterday. Has ANYONE on TC lost their hair using cold caps around day 16 or later? Like most in this TC have said their hair fell out totally by day 14-16? I'm just so worried I'll wake up tomorrow bald:(
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Phalia, although there are no guarantees, TC has been one of the more successful chemo regimens for capping. I started to notice thinning by day 13 but I'm now pretty convinced it happened because my first capping session was a little out of control, and I'm not sure we did everything correctly that first time. Most people on TC have reported thinning - some more, some less - but keep enough hair post treatment so they don't need a wig or hat.
But I totally get your worry! I was so paranoid I'd wake up bald that I actually had nightmares about it. After the 2nd treatment - still with most of my hair! - I was able to trust in the process and could relax a bit through the remaining sessions. If you're not seeing clumps coming out, and just overall shedding, that's a good sign. Frank Fronda, the inventor of Penguin caps, stated somewhere that if you still have hair by day 21, the caps are working. I know it's kind of nerve wracking, though. Hang in there!!!
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ThNks:)
It's like with all the work effort and hassle, not to mention money for caps supplies and ice, it would be devastating for it to fail ya know:(
I'm gonna lost my hair with all the stress!
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phalia - a good gage of how it is going is whether you have started to lose your pubic hair. I lost that in clumps (sorry to be indelicate) but the hair on my head hung in there and started shedding about a week later. I made it thru with plenty of hair.
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Scarlett I lost all my pubes day 13. Soooo
Weird! No head hair loss yet :
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Phalia, if the downstairs apartment is empty but you still have tenants on the top floor, you're good! Lol!
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phallia I think you're ok. I think you would be pulling it out in chunks by now. I'm just a little ahead of you and I felt the same way, especially when my scalp started hurting. But then I lost all hair from the neck down and that's when it hit me it was probably working
So a general question, I did chemo 2 yesterday. Does this degree of shedding continue the rest of the time or does it slow down any? I'm not losing much hair really but I was wondering if I can expect heavier shedding to start 18 days after every cycle or if it just stays at its current rate. All I heard was "make it to 21 days" but I haven't heard much about what happens the rest of the time.
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Runner I had those same questions. Like is it 4 days of shedding them it stops and repeats the same process each cycle or does it shed ALL THE TIME??
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It varies with shedding - I have kept up a steady shed with DD AC and Taxol…
Karli
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Regarding shedding - it varies from one person to another. I had the biggest shed between my first and second chemo, followed by slow continuous shedding from that point on, till it finally stopped about 12 weeks PFC. Even so, I still had plenty of hair left! Just don't want you to stress about it if you end up being one of the slow shedders like me :-)
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thank you everyone. My 2nd chemo was Thursday and I've had continual shedding since day 18 but it isn't bad, but it's definitely more than the norm and getting my attention. I have different textures of hair and it seems like the thicker, darker hairs are all I'm losing. I do hope it slows down though. Maybe this shed period will be the worst and it will start slowing down in a few days. It looks like I have less hair today but I think it's because it hasn't been washed in awhile!
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Runner70- When I do wash, it makes my hair "poof up" again with a little body,and it looks like I have more hair!
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