Cold Caps Users Past and Present, to Save Hair
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silver lining- great attitude it’s ok to be sad and cry, but also we have to be really positive do everything eill ends soon
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BCSilverlining - I sympathize with you! It's tough losing hair. I try to keep remembering that it is temporary and that it is most noticeable to us and not others.
I was doing kind of ok until infusion #3. Not sure what happened, but now I've lost a ton. For some reason, most of mine is from underneath, so I have coverage on top but just a little bit of scraggly long hair hanging down. I'm not sure what the plan will be to grow out this mess. yikes!
Question - my hair is super dried out and fluffy from the chemo. Does this go away when chemo is finished or will I need to chop most of it off?
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lulabella, are you washing away the Paxman conditioner? They said you should otherwise will end up like me with matts! Lesson learned. I usually would wash them on 3-d said of chem
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hi Bostoiangal...I'm using the Penguin caps and we don't use conditioner on cap day. Just normal dry hair and then we wash on day 3 after chemo. I use a gentle conditioner, but my poor hair is just dried out from inside out. I'm hoping it will turn back to normal after chemo is over, but I'm not so sure ;-/
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lukabella, pkease call them , true- chemo dries out hair - maybe oil can help? Sorry have the same problem trying to figure out..
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BCS-I used penguin caps and am now 11 weeks PFC. Initially, I lost mostly on the top. As infusions went on, I shed less on the top and more on the back and sides. I’m still shedding and probably have lost 40-50%, just a guess. I pin my hair up to cover the thinning. I also trimmed it to help with volume. Still have decent coverage, and other’s can’t tell. I totally get how aweful the hair loss is! What chemo are you on?
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Hi Rwns- I am on TC. 4 rounds every 3 weeks. Cant wait til it's over.....half way there and hoping I have hair left when Im done 😵
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ladies, I have terrible matts- how to get rid of them? Thsnk you
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How about a spritz of leave in conditioner and a gentle brush with a wide tooth comb? Hold on to the hair so you don't pull from the roots. But I don't have much hair left, so not sure if that's good advice haha
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Lulabella-I used my regular (John Friedman) conditioner because the recommended one wasn’t cutting it.
BCS-hang in there, we all feel your pain! This whole thing is such an assault on your body and spirit. If there’s a silver lining, Ifeel like I’m coming through this a much stronger person, and the hair will grow back eventually. Virtual hugs!
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lulls Bella I was recommended this product https://cowboymagic.com/products/cowboy-magic-detangler-shine/
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Bostoniangal:
When the cap is on, before you go numb, you should not feel a significant increase in cold when you moderately press down on a portion of the cap. They have to use pads between the cooling cap and over cap and additional straps over the top of my head to get good contact.
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I am new to this thread. I guess I want to know on a scale of 1-10 just how painful is this? Do you have to wear the cap before and after the infusion? Do you ladies have good success with the cap and where is the best place to get them? Thanks
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Dianarose: Pain: I used Paxman. I found it horribly uncomfortable for a whole 10-15 minutes each time. And then not. Like a huge ice cream brain freeze. Some ideas: 30 min before, take Tylenol, take 1 Lorazepam (do both!) and try deep breathing / meditation techniques. This worked well for me, focusing only on my inhale/exhale through nostrils and after awhile, my brain stopped complaining about the cold and discomfort. Every time. So, it was awful ONLY for that first segment of time.
I've had pretty good success. I have completed my treatment plan of 4 infusions (final was 2 days ago) of TC, and in 20 more days I'm sure I'll have more shedding--it usually is worst right at about 3 weeks after an infusion, 19-21 days. My shedding has been ongoing, and my hair is thinner, and maybe I've lost 30% of it. But, it doesn't look like that to other people. It looks like a whole head of hair. I've chosen to NOT wash my hair much. At Day 3, I do shampoo my hair (because of a lot of chemo coming out through our pores at that time, cleans that up, probably better for scalp skin), and I wash it infrequently other than that. I've avoided using a lot of hair-dryer heat at the scalp, and have babied my hair by not teasing it much, etc.
Paxman needs a machine. The machine is attached to the cap, and the machine circulates the chilled water. My chemo infusion clinic offers this brand to chemo patients, so that's why it's the type I used. I had to buy all of the capping part of it. Not sure yet about reimbursement from insurance, but I'm working on that. My particular chemo protocol requires 30 minutes BEFORE chemo infusion (of cold-capping), and then also 90 minutes after chemo infusions are over. This made my infusion days very long. It was worth it to me, because I've been able to walk around with my hair looking Okay Although Thinner.
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wc3 can you explain me more about the pads between cap and the top hat? What kind of pads they using and where to get them? I think it’s cold but not that super tight, but the last infusion they put chin strap more tighter that it helped . I think small is good but I wish I can try xs to. Ompare.
Thsnks
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Diana rose it is 5 6 maybe not that bad I m taking Tylenol 1.000 mg before and it’s good! Got used to it!
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What is the best shampoo to use during cold cap?
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Bostoniangal25:
I'm pretty sure they are some generic brand of maxi pads actually, lol. But they work. When they are needed, they go betwen the actual cold cap and the outer cap with the strap on it to serve as pressure points to get better contact where needed.
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Wc3, Angelyn, I wrote answer and it didn't submit so I took a picture of it0 -
I’m currently 10 days out from infusion 2/4 of taxotere/cytoxin and have been using Penguin Caps. I shed a lot of hair on the 2 day pre and 3 day post washes this cycle. It’s a uniform shed, but I’ve lost at least 50% already. I’ve been gently washing my hair in absolutely cold water. I’m currently shedding around a normal level, but since nothing is likely to grow during chemo, I feel like I won’t have any hair left after 2 more cycles if I have significant shedding after washing again (trying to hold out for weekly washings).
Did anyone’s shedding roll back to almost nothing for their last 2 cycles? Does anyone have any suggestions? My hair is about 4” past my shoulders, and has gotten thinner/brittle as I’ve gotten older. Using Maui shampoo, Argan oil leave in conditioner, both sulfate and paraben free. No styling/blow drying, I let it completely air dry. Looking for some hope here! Thanks
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Yes, my shedding slowed way down after first cycle. Stay hopeful, keep cold capping, was what people told me when I felt worried at the same point. My shedding was less after first time. It was definitely connected to how tightly the cap was tied on--the more contact, the less hair I lost.
I chose to not wash my hair very often. Almost never. My hair has looked okay, I just styled it very simply and didn't stress it with washing, and chemo seemed to keep it kind of dried out and not greasy looking, and I just chose to do this in case it helped. I think it did help my hair stay in. I always washed at Day 3 as suggested (when a lot of chemo leaves our body), but almost never aside from that. I have enough hair left (I'm on Day 4 after final infusion, #4 of TC) to look okay if I style strategically, so I'm glad I cold-capped. I know that shedding has been continual, and that it's expected to continue for a few more weeks. But, I figure that whatever hair I have kept, I'm ahead of having no hair, so I'm glad I did cold capping.
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darn! I am starting chemo Tuesday with a cold cap and was hoping to learn more here! Anyone
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Thank you HikingLady! I was hoping others experienced less shedding after the first big ones.I'm trying not to wash my hair, but have to at least once a week. I washed it on Monday, and my scalp is so itchy, I want to wash it now. I'm working for weeks 2 & 3 of each cycle also. I'm holding out to wash Sunday night so it hopefully will look ok for work. Going to try a different shampoo. I saw on the UK forum that Palmers Coconut Oil Shampoo is recommended. I will still keep capping, unless it all falls out. Luckily, I’m very cold tolerant, so the process itself doesn’t bother me. 2 more to go
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when you ladies say day 3... is the day of infusion considered day 1? Or is the day after infusion day 1?
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j bluesky, the instructions from Penguin say “the third day after chemo” re washing. So I count the day after as day 1, and wash the night of day three. For everything else (like SEs, shedding), I refer to the infusion day as day 1.
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hello warriors -
I've been following this page closely as I know chemo is in my future. I have an appointment with my MO on October 1. I anticipate I will need AC-T which I understand is tough on hair. I am planning to cold Cap (Paxman). I am always looking for success stories from ladies who receieved AC-T. Has anyone had any success with cold capping while receiving AC-T? Thanks so much
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I used Penguin caps. I had chemo every third Thursday and would then shampoo on the Sunday after.
Sadlynew, I had Taxatere-Cytoxin so I can’t help with questions on AC-T or Paxman
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Sadlynew,
I follow the scalp cooling research and there was a german study of different combinations of AC/T and scalp cooling published recently. The AC+T treatments had the lowest success with 47.4% success rate in the treated patient group according to the common judgement method. However, the interesting conclusion was that the results were greatly improved with reversed order T+AC, with 73.9% success rate, almost as high as T alone.
Seems the forum does not accept links, but the name of the publication is "Sensor-controlled scalp cooling for chemotherapy-induced alopecia: Safety and effectiveness in primary breast cancer patients exposed to anthracyclines and/or taxanes in the neoadjuvant or adjuvant setting."
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thank you DHT!
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Sadlynew2018, I am using Dignicap and have 6 more Taxol tx, did 4 DD AC to start. By the definition of success (50% hair loss), I have not been successful. BUT, sitting here at week 11 of treatment, I have had hair throughout and while I may end up with about 90% loss I'm still glad I cold capped. I have regrowth and have been able to look decent most of the time. Shedding is a hassle, there is hair EVERYWHERE and there were times when I was tempted to stop. But when I remember that I would have been completely bald for the last 9 weeks, it has most definitely been worth it for me.
DHT, interesting that T+AC seems to be so much more successful. I've seen some centers (Memorial Sloan Kettering maybe) that now do that order. Too late for me, but I might ask my MO about it.
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