Cold Caps Users Past and Present, to Save Hair
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Hang in there all you Penguinistas!
Today marks a year since my last Cold Cap experience. My hair is much thicker than before and I made an appointment for highlights and cut next week. It seemed like this time would never come but it has...
Thinking of all of you and thanking you for getting me through...
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Hip, hip, hooray to Sharon. What a great feeling it must be!!! Can't wait and I haven't even begun yet.
Wow, Ang a year. Wonderful!
Monday is going to be a long day for me. Arive at cenetr at 9:50, have labs drawn (first experience with the port draw), then meet with the NP for all the do's and do nots which I would have though you'd review before your first chemo session. Then chemo. I pray I don't get sick but I'm sure we all have our worries with the first TX. Plus we have to leave home (65 miles from the center) early enough to stop for dry ice and transfer the caps to the dry ice. They'll have plenty of time to get down to temp.
I just want this port to quit bugging me - I feel it when I breath deep or move my head a certain direction and I'm at Day 4.
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Hi fellow penguin cappers!
I had my first T/C TX yesterday, using the cold caps. All in all, was not too bad
I just wanted to check and see how other people are doing the post infusion caps. I have read two different protocols: 1. Wear cap for 4 hours (switching every 30 minutes) after all infusions are completed. 2. Use all caps twice after infusions plus the 1st two a third time. So I guess a difference between using 8 or 10 caps after infusions.
Thanks for sharing all of your information and support!
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MDG: I lost a lot of hair the first couple washes after 2nd chemo also-- I didn't even comb it every day, it was so scary. It mostly came out underneath, sides and back, which means the caps are actually working to save most of your hair--it's just if you have thick hair, the cold doesn't penetrate to those underneath areas as well. And the caps don't stay as cold on those edges. I never really noticed hair on people's temples until I lost it--then I had temple envy, big time!
Sashasz3: I ended chemo Dec 22nd and noticed my first new growth (at my temples!) on Jan 1--that was a Happy New Year's present! The nape of my neck came in next, and fast.
On Tues, I went in for a nipple sparing mastectomy with reconstruction--the next (and final) stage of my journey. It went really well--going to post some photos on the BC picture forum to document that process.
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Hi Bhodges: Frank told me to continue wearing the caps 4 hours after the infusion ends, then two hours three times/week. that's what I've been doing and just finished TC #3 yesterday. One more to go.
The caps were measuring -32-33, but they didn't feel as cold. We packed them really well and they were too cold out of the cooler. My husband had to knead them to bring them up to -32. Perhaps my head is getting used to this. Very bearable this time. Fingers and toes covered with frozen peas are another story - THAT is painful to me!0 -
All: Hubby wants to know at what temp you change the caps. I know with the ElastoGels, we change every 20 minutes but is there a low temp when you really need to change them if they drop too low.
Lucky: That is awesome. Glad your procedure went well!
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Sharon~ Yahoo!!! You are done with your chemo!!! So happy for you!
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Arlene -- I changed my PCC based on time, not temperature.
Colleen
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Arlene, my wife Liddy uses the ElastoGels too and we change them about every 20 mins or so. Regarding temps, if they are around -30C going on (any colder and they are too stiff anyway), they are around -5C to 0C after 20 mins of wear. This varies a lot with EGs but these are the "check" temps we and others have found useful in guiding when to change etc, Hope this helps.0
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Thanks Sam. That helps a lot. Hope they are working for Libby!
Thanks SoCal - sounds like a combo between time and temps.
I'll be planning to change every 20 minutes and will check the temps too.
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bhodges, howard: Yes, the PCCs are worn 4 hours after infusion stops, changing every 30 minutes throughout (except the first two caps, which go on for 20 mins. each to bring your scalp to maximum freeze before infusion begins). The first five mins. of the first caps is a little "brain freeze" kind of like drinking a slurpee too fast, after that, the nerve endings are numb and there is just a general sensation of cold (and, for me, towards the end of each session I had the "shivers" but nothing an electric blanket and hug didn't cure).
For those using Advance and EGs: I'd recommend trying to keep them towards the -30C degree as the goal temp when they're coming off. This is the protocol that PCCs works with, and it's highly effective. The gel contents (patented of course) of the PCCs is very different than Advance or EGs. The PCCs really hold that cold temp for the thirty-minute duration, which is key for many folks, and also floats right at the "frostbite" level -- warming, then cooling -- so that most folks don't experience frostbite with the 8-hour -30+C cold (which is amazing, if you stop and think about it).
I offer this advice only in the spirit of total support! I was a PCC user but hope that everyone battling cancer and using one of these methods has success. It seems that EG users swap them more frequently to maintain the colder temps. Not sure about the Advance, but am very interested to hear the feedback.
For those using PCCs who don't feel as cold: two factors in this. One, the nape of the neck and above the ears are two of the warmest parts of the head. The other factor is that after the first two 20-min changes, your head has reached max cold and your nerve endings are frozen, so you don't feel it. My awesome rockstar hubby, who was my helper, took incredible notes and charts of my cap changes, measuring inside/outside before/after each cap change, dutifully noting the exact time it went on my head, etc. (He's a world reknown cosmologist so this type of documentation and study is right up his alley.) We were able to monitor the consistency of the cap changes, but also identified a couple of instances when a cap was failing (mine had been through 3-4 cycles of users, all dry ice method, which they are not designed for. The stress of the dry ice reduces their life span). This info was incredibly useful for Frank, he was very grateful for our charts and graphs.
Good luck to all Penguinistas and cool cappers! And a special shout-out to our helpers, who *really* do the work in this. They are gods and goddesses and there's a special place in heaven or nirvana for them.
Chey: you are a rockstar goddess and it is great to hear from you!!! xoxoxoxo
Susan
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Hi- I am doing TC treatments every three weeks, second one happening Friday, April 1st 2011- six treatments total. I am using cold caps- the Penguins- and I did not know about some of the things that people are talking about on this site- for example- frozen toes?? Why? Ice in your mouth?? Not sure I understand. Would you mind explaining about this? Also, I am learning about wearing them in between. Wish I had known this three weeks ago! I have had a little bit of shedding....a clump actually- and have also had some trouble with the person who committed to help me; she has decided she cannot help me beyond the second treatment, so it is getting complicated- but I am trying to find a way to continue the caps. Anyway, I wonder what the frozen toes and ice in the mouth are about....Thank you!
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Interesting post- thank you for your candor. I am trying the cold caps and it is complicated- a lot of work and the person who was recommended to help me, and who committed to helping me, has told me she doesn't want to do that anymore- so I am trying to get others to help and it is very difficult so I am not sure I can continue either....also I was not aware that we should wear them in between times until reading this group of postings- had not found it before, not sure why. I am losing some of my hair, so far after one treatment 15 days out but not much. I am just trying not to touch my hair at all now. I am afraid to wash it but I know I will have to eventually. I hope it works and then it will have been worth it. Good luck to you.
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Advance caps are elasto gels but not in good condition - as we and a lady in MI found out the hard way. Now my daughter seems to have given up on caps after chemo three with the poorly preforming Advance caps. MI lady had the bad experience on cemo 1. I hope this bad actor doesn't give cold caps a bad name. What we don't need are failures at a time when we are trying to get the medical community on board.
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Yizbieta: I am on Taxotere and Cytoxan and the taxotere can cause neuropathy in fingers and toes as well as some woman have had their finger nails be effected. I ice my fingers and toes starting 15 minutes before taxotere starts and stop icing about 15 minutes after taxotere is over. I also try to keep ice in my mouth to prevent mouth sores. I had TC #2 on this past Wed. So far no issues with fingers, toes or mouth. I had no shedding until the past few days. It started....don't know what's going on today as I won't even touch my hair....too scared! A lot came out yesterday but no clumps. I hope you can find someone to help you contiue using the caps......that's a bummer that your helper bailed on you. Good luck!
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Hi Yizbieta: I used small gel pads w/ velcro to ice my fingers and toes and have not had much neuropathy and no nail problems. The principle is the same as for the scalp cooling, I think--decrease the blood circulation to those areas so they take up less of the chemicals that cause cellular damage. I also found L-glutamine (a powder mixed in juice) very helpful and am still taking it 3 months out to help w/ some lingering side effects.
It's too bad you can't find a helper--where do you live? Maybe someone on this board can help you, pay it forward. Good luck, Lucky60
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Hi all,
Yizbieta: Try to hang in there, this really works. As others have told you, the ice frozen gel packs on fingers and toes are for the effects of chemo on nails(they can peel or even come off depending on the type/amount and your reaction to it-also chemo can cause neuropothy to hands and feet-that is a kind of nerve damage). Another thing I think can help us all--when you sign in add you city and state-I did-this. It can help you either with someone being able to get you their caps when they are thru or even helping you with the caps if they live near you, or helping you to find another helper in your area.
You can find the gel packs for fingers and toes in CVS- they are called frozen peas or something like that. You can also get sheets that you can cut to size at K-Mart in the camping dept. Look for sheets with little boxes of gel packs.
Advance Cold Cap Systems is not a manufacturer of caps, they buy Elasto Gel Cold Caps and put their label on them and package them in a cooler with Dry Ice and ship it to your place of infusion to use on the day you have Chemo. You rent them each time you have chemo. They are selling you the convenience of not having to get dry ice and a cooler and taking it back and forth to the chemo session. When you deal with Elasto Gel Cold Caps directly, you buy the caps and they are yours to keep or resell or give away to the next person, you have them to use at home between chemo sessions, but you have to get dry ice and a cooler and have to take them to the chemo sessions yourself . That (and the price) is the difference between Elasto Gel and Advance. The caps are the same. I would imagine that the ones you own are in better shape, because you are the only user. The advance caps probably have more users per cap. Penquin Cold Caps are totally different. They are made by a different manufacturer and work slightly differently.
Keep Positive--that really helps alot!!!
Nancy
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Yizbieta, Please post your location. Perhaps one of us can help you. Keep putting the need for help out there. Have you tried friends, church, family....? There are so many people who would help, if only they knew. Perhaps an ad on Craig's list. In this recession, people have more time than money. You just have to put yourself out there and ask. When I passed my caps to the next user, a sister was getting them for her. She has young children and couldn't help with the caps, but she was so happy to be able to do something for her sister. Keep searching and don't give up. There was even someone who did the caps herself on the board at one point. You can do this.
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Happy Sunday everyone and welcome Yizbieta. Yizbieta - odd question but perhaps someone at the Infusion Center might be able to offer some assistance or know of someone who might be able to help. Don't give up!
Regarding the caps - I'm using the ElastoGels which I ordered and purchased myself and they are brand, spanking new and I'm going into this as positively as I can and, of course, hoping they work but if not then I'll deal with the baldness but hoping that doesn't happen!
Nancy: Thanks for the information on the gel packs at CVS - I'm heading there now and if I can't find them, guess I'll find something that might work.
Arlene
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Yizbieta: One of the possible side effects of Taxotere is neuropathy in the toes and feet. Nurses have long advised using ice/cold on fingers/toes during infusion, to prevent neuropathy. (It's exactly the same scientific basis as using cold caps: slowing the blood flow to the chilled area, which prevents as much absorption of the chemo and prevents the SEs.) Sucking on ice cubes helps prevent mouth sores -- again, the same scientific basis - slowing the blood flow. Finger nails, toe nails, hair, mucous membranes are all fast-growing cells, as is cancer. There isn't a worry of finger, toe, or hair cancer however, so cooling during infusion is fine (and European scientific research supports this, if your doctors inquire). I used mini-gel packs and stuck them in my socks and used another pare of orphan socks as mittens, with mini-gel packs tucked in. My hands had the added cold of constantly massaging the PCCs on my head, and my hands have experienced less neuropathy than my tootsies.
Also effective in preventing neuropathy: L-Glutamine (there is a powder form, I took a pill form and still do), and ***acupuncture*** which I can't recommend enough. I'd never tried it before going through chemo, but it was available through my cancer center (and strongly recommended by my nurses and doctors), so I tried it. Boy, was I impressed! Every week I went in, described whatever physical, mental, or emotional symptoms I was having, and wow -- after an hour treatment and a good healing nap (it is tiring!), I could feel my energy realigned. I don't know how to describe it, except it felt like a massage except internal, not muscles and tissue.
Luckily, it is still available to me for life through my cancer center, and it's covered by my insurance.
I did forego icing during chemo #2 and regretted it immediately; had incredible neuropathy, an intense burning and tingling, in both my toes and feet, for about 48 hours. It was the most uncomfortable I was during all of my chemo, except for the time I ate a raw strawberry without thinking. Every once in a while I still get a spasm of neuropathy, but nothing like those two nights post-chemo, but continue with the L-Glutamine and accupuncture.
Hope this helps! PM me if you want more info on how I did the caps and other pointers on going through treatment. I quickly realized that my nursing team was extremely advanced in their advice on managing SEs -- they wrote a book on going through chemo (which I'm still trying to find; I moved a couple of months ago and am still unpacking).
keeppositive: thanks for the clarification on Advance vs. EGs. I'm surprised that would be allowed, to re-package and re-sell used caps, but I guess there's nothing stopping that from happening. I guess the lesson is: keep monitoring the temperature and change as frequently as needed, to maintain sufficient cooling to the scalp.
Susan
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Susan: Thanks for the sock idea. I'll definitely use it tomorrow.
Socks - Check
Moleskiin - check
Gauze - check
Frozen Pea Pads - check
Check, check, check and hope I don't forget anything or I'm done since I live 65 miles away.
Darn steroid is doing a number on my heart - it is beating so fast! Need to talk to them about that tomorrow. Took the first one this morning and nothing but the late afternoon one I am really feeling.
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Hi All,
Arlene:Take mini sanitary napkins-CVS brand is cheaper and works well-They are good for forehead and ears- cut them to fit. They are better than moleskin on forehead and cheaper too!
For next time, try Ear Pops-Goggle them and see what they are. They are $7.95 plus shipping-that comes to about $9. They will ship right away-I got mine in 2 days. They are earmuffs that stay on your ears without a band. They work great for the chemo treatment, and you can use them afterwards as ear muffs.
If you can't get the brown sticky tape at your infusion center-the stuff they put around you when they do a blood test-don't know what it is called-it is good to wrap around neck and chin for chin strap to rest on and protect you from the cold, then use a mini pad there too. The chamois cloth is a pain because it falls off and you need to hold it and then do up the chin strap. With the 2 items I mentioned, they sick on or stick to themself, so your hands are free to do the chin strap more easily.
Good luck. Don't worry all will be well!!
Keep Positive.
Nancy
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Hi Candy (or anybody who can help with this),
I am on day 25 and have had two chemo treatments, but starting on day 21, I have had an enormous amount of hair shedding every day, which is quite worrisome. I notice it in my comb after very gingerly combing my hair. Did the shedding finally stop for you, and how many days did you experience this until it started to slow down? Thanks so much for any information you could provide on this! I have four founds of AC followed by four rounds of Taxol every two weeks for my treatments.
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Just had a major milestone--I just returned the caps to ups---bitter sweet--I hope it's not to soon I just finished thursday---but a great feeling thinking hat someone else will benefit!
For those who are starting --yes alot of work--but the end result--is wonderful----hang in there--be gentle--follow the rules!
Patwriter12---keep in mind--on a regular day--a person can lose 100 hairs a day---I started with what seemed a great deal of loss too---I have at least 70% of my hair my last chemo thursday--so much better than zero hair--still no one has questioned my look---have heart--try to be strong!
Sharon
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Good afternoon ladies!
Thanks for the information, Howard & Sebm9 (and for the acupuncture tip, I will definitely look into that)!......Does anyone have any tips on washing their hair (how often, what shampoo, styling products)?
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Thank you, Sharon, for your encouraging words. It seems like the excessive hair loss is a normal progression, and I now have some confidence that I will come out of this as you did, with no one ever suspecting anything because of my hair or lack of.
Do you know how long the shedding lasts until a normal amount of shedding becomes the norm once again, or is it different for everyone? Just looking for a ball park estimate.
Thanks! Patwriter123
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Patwriter: I am in the same boat as you! I started taxotere and cytoxan on 3/2 and had zero shedding until Wednesday, 3/22. That was my second chemo day. That day I noticed a little shedding...not bad though and figured it was because we were doing caps and messing with my hair all day with that. Then the next day a little more shedding but nothing bad. By Saturday when I washed...I freaked! There was so much shedding.....I cried. I am still shedding, but it apprears to be less than it was on Saturday. I hope it slows down. I just try not to touch/comb my hair much and loosly pull it back. It looks horrible, but it still looks like a full head of hair. No one would know. I can tell I have lost a little near the side burn area, but nothing anyone would notice but since I am obsessing over my hair right now, I know. If you want to PM me, feel free! I have 2 more treatments to go.....half way there! Good luck!
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patwriter and mdg: Yes, the cycle of shedding can be scary, but hang in there! One thing I did (which others have also adopted) was keeping a ziploc in the bathroom and collecting the shed hair there. My shedding was heaviest around day 14 each treatment cycle, and also my once-weekly hair wash (which yielded about a weeks' worth of hair). Whenever I got nervous, I simply held the ziploc up to my head to compare -- NO comparison!
Try not to stress -- it's hard, but stress itself also causes shedding. Take a deep breath, get a walk, know you are doing everything you can and accept the results. Make sure you get your exercise and *hydrate hydrate hydrate* to continue detoxing the chemo and to help your liver stay strong. (Liver function is closely tied to the hair results also.)
The hair looks funkiest after that first chemo -- my scalp was flakey (dried from chemo), my hair felt oily -- but then that first wash ...aaahhhhh... and after the second treatment, it became more normal, oil-wise. Eventually it got drier and less fluffy.
But man, has it roared back. I feel like I am going to have twice a head of hair, and it's shiney and curly and I love it. (I lost very little, but of course I noticed it!).
Btw, be prepared: the shedding continued for a very long time PFC -- in my case, a few months. This also varies for everyone. I did not use the caps between treatments, it wasn't a recommendation back then, so perhaps that would have helped a bit.
Hope this helps! Hang in there, keep your spirits up, think positive thoughts, you can do this.
Susan
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BHodges: Hair care: only wash once/week and only in cold or tepid water. Use only about a dime-size of gentle shampoo (no laurel sulfates, chemicals, etc.) and be GENTLE. Try to not agitate your roots -- they are desperately trying to hang on.
If you must use conditioner, try to not get it on the roots, use very little, rinse thoroughly.
Use only a wide-tooth comb, not a brush, and hold your hair so that the roots don't pull as you comb.
If you must use a hair dryer, do so sparingly and only on the cool setting. Obviously, no curling iron: NO HEAT.
It's okay to rinse your hair inbetween washes (I did so daily, helped it look more normal, plus I swim every day and continued to do so throughout chemo).
This protocol lasts until your hair shedding stops -- my final chemo was the first day of summer and my first warm hairwash was around Halloween.
I feel like I'm forgetting to add something, but I'm sure others will chime in.
Btw, you can get these hair tips on the Penguin Cold Cap instructional video and also on the Rapunzel Project website.
Susan
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Hi Ladies:
Day 1 came and went and the beginning was tough as I was so frightened and even though I have a port they did my labs the 'old' way but not next time, especially since they forgot one test and had to take more blood.. Why have a port and not take advantage of it. The NP realized how nervous I was and ordered a VERY small dose of Antivan for me along with the Benadryl and nausea medicine.
They started with the Herceptin (90 minutes) which gave us plenty of time for the setting up of the caps. All the nurses seemed really interested in the caps and kept coming in to check them out - I so hope they work. No way to tell yet as I am doing my 3-4 hours after. I do admit not all of them felt as cold as I had expected but perhaps because of all the medication. Iced my feet and toes during the Taxo treatment (2nd TX 60 minutes). Last was the Carboplatin at 30 minutes.
Still wearing the caps and one more and I'm done for the evening. Will use them the next couple of days out of the freezer.
I so pray they work if not just for me but so the nurses see what they are all about and that there are options out there.
Guess if I'm going to have any SE's Wednesday will be the beginning so tomorrow needs to be an active day for me. NP says some go right threw with little problems and hoping that is me, of course .
Ear pops are definitely going to ordered tomorrow and will pick up mini-pads too. Thanks for those suggestion!s Keep! My hair falls over my ears so only one of them seemed impacted but I kept gauze on them but the pops sound so much easier.
Congrats Sasha.
Happy to hear all your great tales today!
ONE down FIVE to go!
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