Cold Caps Users Past and Present, to Save Hair
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my last AC is this week and I still have a full head of hair. Then I start the low dose weekly taxol for 12. Did everyone here continue capping for the 4 hours they did on the heavy stuff? I was reading the paperwork from many of the European companies and they only recommend an hour on the low dose Taxol. Some were 90 minutes. It would make sense to need to cold cap less time since it is low dose.
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LRFTexan, I had the same chemo treatment as you....I continued per the PCC instructions and capped 1 hour prior and then 4 hours afterwards. It was a 7-hour day wearing the caps each week during my Taxol infusion. Yes, the dose is less harsh than the AC but I don't think it's worth risking at this point especially since you have done so well thus far. I continued to shed for several weeks after the Taxol too. Maybe PatinMn will chime in also - she did 12 weekly Taxols and no AC. She had minimal shedding during the Taxol but did wear the caps as prescribed by PCC. Just my two cents....
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LRFTexan, I had the same chemo as you - AC followed by 11 weekly Taxols. I continued to cap according to the PCC instructions during the Taxol - 1 hour prior and then 4 hours following the infusion. It was a 6-hour day wearing the caps. I don't know if I would risk it if I were you especially since you are doing so well thus far. Maybe Patinmn will chime in...she did 12 weekly Taxols (no AC) and had very good results with very little shedding but she did wear the caps for the full time recommended by PCC. Just my two cents...
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I just wonder why there isn't a difference in timing when the dosage is so much different. I was reading studies from Paxman last night and they also say you can wash after chemo. I think the machines will become the mainstream once FDA approves so hopefully they all get on the same page.
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LRF, it may be ok, but maybe not - I would suspect the timing afterwards is based upon how long the chemo stays in your bloodstream afterwards. Once it is no longer circulating in your bloodstream (and has been absorbed by the tissues of the body), then it couldn't get to the hair follicles. There may be a different clearance time based upon the type/amount of chemo...but I would suspect only your onc would know that, if at all...???
Also, ask Suladog, another Taxol capper (no AC).
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LRF, I did dose dense taxol every three weeks and followed the PCC protocol. I know it's kind of a different animal. But honest opinion? Why risk it when you've done so well this far on a regimen that so many women have had much less success with. What a bummer it would be to lose your hair now just for the sake of shaving off a few more hours of discomfort. My two cents.
Good luck either way!
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LRF, I had 12 weekly Taxols and I kept the caps on for 3.5 hours after the chemo (may hair is rather thin and this is the time that PCC rep told me to go with). I wouldn't risk it either with a shorter time.
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FYI, from the American Cancer Society. Short answer...it depends. lol
Many people wonder how long the actual drugs stay in their body and how they're removed. Most chemo drugs are broken down by your kidneys and liver and then are removed from your body through your urine or stool. The time it takes your body to get rid of the drugs depends on many things, including the type of chemo you get, other medicines you take, your age, and how well your kidneys and liver work.
http://www.cancer.org/acs/groups/cid/documents/web...
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Taxotere/Docetaxel Biological half-life 86 hours https://en.wikipedia.org/wiki/Docetaxel
Taxol/Paclitaxel Biological half-life 5.8 hours
https://en.wikipedia.org/wiki/Paclitaxel
Adriamycin/Doxorubicin Biological half-life
Triphasic; 12 minutes, 3.3 hours, 30 hours. Mean: 1-3 hours
https://en.wikipedia.org/wiki/Doxorubicin
FYI-Medical Definition of TRIPHASIC
: having or occurring in three phases0 -
I kept the caps on 2 hours after infusion. I can't imagine 4 hours! Wow....it was a long enough day with 2 hours but you gotta do what you gotta do.
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I had a question for anyone who has already used the Penguin Cold Caps. I'm about 15 days out from my first chemo session (TC) and just started to shed quite a bit. I know everyone is different, but what's "normal" cold cap shedding versus hair falling out from chemo? At what point did you know it was working? The shedding was kind of shocking yesterday and today I'm wearing a hair net around the house! I don't want to give up yet since my next round is in 6 days, but I have no idea if this is working or not... Thanks in advance!
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Suzanne, what type caps did you wear that the protocol was 2 hours?
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milkchess, it depends where you're shedding from. If it's sideburns, over the ears, and around the nape of the neck, you could see some significant shedding there around week two. Those are the spots where cap fit is an issue. Did you otherwise follow PCC protocol re: cap temp, cap change timing, cap fit at the crown, and the four hours of capping after your infusion? All those affect success.
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Yup! We followed it as closely as possible! I even got freezer burn on the top of my head many days later because it was so cold!
I can't really tell where the shedding is from... It's just like I'm leaving bits of hair around the house all day and finding strands on myself. Nothing came out in clumps really, but I have no idea what's normal. When people shed from wearing the caps, how considerable was it? I'd say yesterday I shed something like 10xs as much as I normally would in the shower.
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When I had chemo in 2013, without caps (cervical cancer, large dose taxol/cisplatin, once every three weeks for nine weeks), my shedding commenced exactly two weeks after the first chemo session. I have thick, strong, dark hair. Normal for me, if I run my fingers aggressively through hair using all five fingers, would be for 2 or 3 hairs to come out. At that time, it was 50 or more hairs each time. It just felt like the roots were really brittle and the hairs had nothing holding them to my head. I probably could have pulled it all out in a day. Hoping to keep it a little longer, I immediately left work and got my chin length hair cut into a pixie cut and barely touched it. Waste of time! I shaved it a week later.
Your hair loss with the cap is MUCH less than this.
Luckily I had purchased a great wig and it was winter, so I hunkered down and six months after the first treatment removed it in summer to reveal a VERY short pixie cut. Shorter than most women get it cut. I pretended it was because I was doing a lot of triathlon training and it was hot. Not terribly attractive.
I'm having a PET scan and surgery on a complex ovarian 'mass' this week. It's summer where I live now and I can't bear the thought of 5 months in a wig again if it's malignant, so am very keen to hold onto my hair, hence following this thread.
Good luck and keep posting, I am keen to follow your progress!
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I will be honest - I don't know what type of caps they were. I ended up using them free of charge. Someone else had rented them and hadn't returned them yet so they were just sitting there in freezer. I think they were Penguin Cold caps but not positive. The staff there gave my husband the directions and showed us how to use and then we were on our own. They started with the pre-drugs (40 min before chemo) changed every 20 minutes the first 2 rounds and then every 30 minutes. The first chemo session I was there from 8:30-4:00....long day but they had to give the chemo slowly to make sure I didn't have any reaction and then the caps 2 hours longer.
milkchess - I was told if they are not going to work, you will know after the first treatment. I was also told to expect some shedding and don't shave your head after first round when you see you hair coming out. Hang in there and see how it goes. My hair did thin quite a bit - the nape of my neck was the worst since the cold cap didn't cover there.
I wore a moleskin on my forehead to protect it from freezer burn. They also cut a panty liner in half and covered each ear with one to protect the tops of my ears.
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Riesling
I returned you PM but I accidentally touched something and blocked you I think I have fixed it and un blocked you so I hope you have recieved my message if you haven't let me know and I will try again.
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these are the studies I referenced a few days ago. Their website overall is very interesting. I attached a picture so you could see the web address if interested.
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Ordered my caps today!! This is happening!!
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woo-hoo jodes!!!!!! Big step!
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I'm definitely keeping my fingers crossed for the next few days. I really hope I make it to my next treatment on Thursday!!
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Bring it on Jodes! You got this and we are with ya!
Milkchess - I started shedding on about day 21 after my first TC. The hair down south started shedding several days before that...as time went on I lost hair all over my body but only shed from my head and still had hair there so I knew caps were working. Also remember that since you are not washing and styling hair as normal, the hair that would normally come out when washing/styling hair is just falling out whenever instead of going into your hair brush. Hang in there!
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Hello there! I read the blogs all the time and they have helped me a lot, I'm very thankful! So I figured it's only fair to finally add some of my experience.
I'm 4 weeks post first cytoxan/ taxotere and using the penguin cold caps, I followed their recommendations as close as possible including the 4 hours after, however, I started having aggressive hair loss last week, right before my second chemo. I lost big clumps of hair but it's only until now, that I'm thinking it's not going to work. I have a bald spot where I part it regularly, that's where I got burned with the cold the first time and I have few more bald spots behind my ears and in the back. I'm still not giving up but I have lost about 70%of my hair and I still have 2 more treatments left... Good luck to all!
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Wow! You go! I find it hard not to just give up and shave my head, but I keep telling myself to hang in there... I guess if I'm at the point where I have to wear a wig or can't cover up bald spots, I may send these cold caps back! I wish they would at least my give you a small refund or something if they don't work!
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Milkchess
I feel the same way! I ordered some chemo hats in Amazon, I'm doing a weird hairstyle to cover but i think it's noticeable.... trying to figure out how to explain it to my 3 and a half and 2 year old girls, they live in rapunzel and Elsa world, they both love long hair.... I also feel like I can't keep paying for the caps rental if it's not really working, but I don't want to give up, I feel like any hair is better than none.... will see. Have a great day everyone!
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I'm undergoing Taxotere-Carboplatin chemo. I had my first round 3 weeks ago tomorrow--second round is tomorrow. I'm using Penguin Cold Caps and we followed the instructions to the letter! I just started shedding hair as well, over the weekend, so 18 days after the first treatment. I'm so glad to see some other people sharing that exact concern. I thought the timing was weird and that since I hadn't lost any hair yet, I expected it to start after my 2nd round. I have extremely thick hair that I normally treat very gently to enhance the curls, so there really hasn't been much of a change in the way I treat my hair, except that I'm shampooing closer to once per week instead of twice. My hair has been shedding from underneath, behind my ears mostly. No one, including myself, can tell at this point, but I have had it come out in smallish clumps. My hair is long and wiry/coarse, so I'm wondering if getting a couple of inches cut off would help. I'm waking up with these clumps of dead hair tangled in my long hair and it takes a long time and a ton of detangler, and my husband taking over when I just can't take it any more, to get my hair combed in the morning.
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Hi Sara208. It is not unusual to have cap-fitting issues around the nape of the neck, at the sideburns, and over the ears and therefore those spots are not protected the way the rest of your scalp is by the Penguin caps. I also shed early in those spots and in a typical chemo (as opposed to protected) way--just hair falling out around the edges. If the rest of your hair is sticking around and you're at week three, you should be fine. You will find before too much more time passes that the older follicles will begin to shed. This shedding pattern is very different. When the hairs come out they are sort of evenly spaced. This is the expected shedding that occurs since only the middle-aged and younger follicles are protected.
You might try a) washing your hair more often so the shedding hair doesn't get tangled up with your other hair as badly. I think that's a more common problem with women who have thicker, coarser hair. And b) I used a brush called the Tangle Teezer (you can order it online). First massage conditioner through your hair (avoiding the scalp the best you can) and then very gently brush it through from the bottom up to avoid stressing the roots. The brush is made to detangle wet (i.e., swimmers') hair. It's great, much better than a wide-tooth comb. If you wash more often you'll keep your scalp in better shape and lessen the shedding per wash, which should help out in your situation.
I think I also heard way back in the threads at some point that others used---I want to say corn starch or something to get really bad mats out. Perhaps some veterans will chime in here. I started back in January and heard about it then, so cruise way back in the thread and search mats, corn starch, etc. to see if you come up with something.
Anyway, good luck!
Hha! Here it is. It was good old Hortense:
Use dry cornstarch on your mats when your hair is dry to help detangle them. It is very powdery and silky and will not harm your hair. It can be found in the baking aisle of every market for about two dollars. I used it to get out my mats when I was shedding.
Sprinkle it on the mats generously and work it through them gently with your fingers. You will be amazed by how slippery a dry substance can be and you will feel the hairs begin to slide over each other. Comb the mats out painlessly by starting at the bottom of any size tangle, working at it patiently, a bit at a time. Use a comb, the leading edge of a dry wet-brush or your fingers to pull the lowest hairs apart, whatever works best for you - always working from the bottom of every mat. As you free the bottom parts, you keep working higher.
If you have long hair, try to hold the hair above the tangle with one hand while you work on it from the bottom with the other to minimize pulling on the roots of your hair. You will end up losing any hairs that have already come out of the follicles, but you will not lose any extra hairs as long as you do not pull on the roots of them.
I learned this cornstarch grooming trick from, of all people, a top dog handler when I was showing a long haired dog that easily got major tangles. Corn starch works miracles. Just this spring I used it to get a gigantic, thick mat out of a friend's hair after she had been in the hospital for five days with no one combing out her hair. Everyone thought her hair was going to have to be cut off, but it wasn't necessary. Corn starch got the 3" thick mat out.
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So i go to my onc this friday to decide on chemo start date. I will be doing TC. Just wondering if anyone has had success with cold caps and these drugs? And any luck with insurance paying for them? My onc never brought it up. She just told me i would lose my hair and it is slower too return with these drugs.
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I am on TC and having my second treatment this thursday. I used PCC and am still trying to figure out if it's "working" or not! Sometimes I get a few clumps that fall out and other times it's wide strands like other people mentioned. So far I've lost behind the ears which is fine by me as long as the rest of it stays in place! I will let you know how it goes...
Sara208 - i have the same problem w/the mats. I sort of just use my fingers to get those out, but seriously, it's scary when so much comes out!! I keep telling myself to hang in there but it's hard!
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