Cold Caps Users Past and Present, to Save Hair
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Hi everyone,
Kathy119, mje123, sashaz ~ it looks like we are all going through this at the same time,, I'm a little ahead of you all (5 days post Tx#3 of 4) and zlota is a little ahead of me (haven't heard from her in awhile ... hoping all is well and it's just the busy holidays)
Lucky60~ Congrats on being done with chemo! Would love to hear from you how getting back to the "new" normal is with your hair!
My hair did not shed as much today... but is still shedding more than normal ... someone asked and I had looked it up when I started this journey -- so here's some hair trivia -- ha ha....we have approx. between 100,000 and 110,000 hairs -- some hairs are thicker than others but usually the same # of individual hairs on each person. Each hair has about a 6 year life. (Frank told me that we should expect to lose the ones closer to the end of their life cycle -- they are weaker I guess??) We shed between 50-100 a day (if you aren't getting chemo!!) ..
thanks to everyone for keeping me positive... I am feeling better today -- both mentally and physically.
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So ladies,
I was at the cousins house and they all said "Oh, you look great."
Then one says "Look at those cute little curls by your ears, how did you do that?"
OMG.
We can thank chemo for those.
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Lucky60, thanks for the info and coupon code. I ordered it a few minutes ago. Since many of you are going through chemo at this time, can you give me some advice on how you deal with not having nose hairs and sinus infections, also what do you use for dry eyes? Thanks
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Hello -- I'm new to the forum. I used the cold caps for the first time two weeks ago. Has anyone learned of anything to lessen the 'scalp' sensitivity following the use of the caps? I'm planning to be a little more prepared next time with an electric blanket and neck pillow! I know it's not suggested but I was trying to come up with some type of thin thin thin head covering to hold hair in place to make cap changes easier. Has anyone else tried something like this? Glad to find this forum -- thanks.
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Ang7~ LOL!!! Gotta love it --
motherofpatient~ I haven't lost all my nose hairs yet... but I have had nose bleeds and chemo dries out everything -- including your nose. I use saline spray 3-5 times a day after the first treatment b/c of the dry nose and bleeds. Knock wood - but I haven't been sick and I don't get Nuelasta BUT I am very careful -- when I go to the grocery etc I wear a mask b/n days 10-14 and if not comfortable with that I carry a small Purell everywhere. I have also had issues with my eyes -- a common SE of taxotere esp in Day 14-21. I use ReNu Dry Eyes every single day 3-5 times... and limit wearing my contacts.
littlepenguin60 (love your user name) ~ Welcome to the forum! I would not use a head covering ... but one layer of gauze has been used ( I did for Tx#2) where your part is and in areas that are really red -- remember its usually coldest on top so a layer of gauze lets the cold get through but protects some as well. Try to change your part for next treatment. Also make sure you wipe out the caps before you put them on.. I will tell you the first treatment was the hardest on my scalp... I think we "shock" it ... I've been through 3 now and my scalp seems to be fine now.
Still have my hair -- 6 days post Tx#3 of TC.
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Hello everyone,
Thanks to all who responded to my post. I have ordered some of the products, including the thermometer(which Frank said I wouldn't need), but I want to be sure the caps are the right temp out of freezer, they could be too cold, so I want to gauge the temp. I had a Flu shot today and am getting a pneumonia shot this aft. That is because I will be taking chemo all winter long. I usually don't get sick, but with a depleted immune system, I want to be on the safer side. I felt a strange hard lump in my chest under the breasts in the center and got scared, so when I went for the Flu shot, I asked the Dr. to check it. He said it was a particular bone and not to worry--I feel like a jerk, but again better safe than sorry. Having breast cancer has made me worry more than I ever did before, but I guess that is to be expected. My best to all of you doing chemo now and hooray to those who have finished and good luck to those of us who will start soon!( Jan. 6th for me.)
I have a silly question, How do you go to the bathroom with the cap on your head during the chemo day? I will be there for about 1-1/2 hours before, 2 to 2-1/2 hours during the infusion and 4 hours after and with drinking all that water???
Keep positive and keep fighting!!
Nancy
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keeppositive,
It is not a problem getting up and going to the bathroom. You will be able to walk to the bathroom with the IV in place and running. I had to do so a couple of times during the infusion. Also they will probably not let you stay for the 4 hours after the chemo so you have to finish the caps at home. I left the hospital with the cap on after my last chemo and changed it once before getting home then finished the last three and a half hours at home with the caps
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For dryness and irritation in nasal and sinus area, try the Nasopure saline wash system. This is like the Neti pot, but easier and lessy messy.
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Thanks MT ~ I did go and buy the SmartMouth BTW and it has really helped with the "coated icky" mouth feeling.
All~ I have been shedding quite a bit... and decided last night to do the hour in the caps out of the regular freezer. Today the shedding is much less .... I really don't know if it helped or if the shedding comes in waves...but may help. I'll need to ask Frank about this? Has anyone else experienced this?
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Just back from my nulasta shot----shedding quiet a bit for the last 4 or 5 days---mostly nape of neck hair------well finally-----the nurses are starting to believe that the caps may have some validity! The one that usally says don't get your hopes up to much--now says--she can't wait to see me next week---hopefully that wasn't sarcasm!!! Oh well tx 2 behind --no Se's at all today--usally hits me 3-5 days later-----
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Okay, I'm one of the new kids here and I apologize if these questions have been answered a 100 times already -- I did try to read through the entire forum.
1) What's this about using the caps between infusions from the 'regular' freezer?
2) What is the exact recommended temperature for the caps -- is it -30 C? My first experience was so tough -- I think a few of my caps were colder than that, but when we're talking that kind of temp does it really matter?
Next time I'm going to take them out sooner and have them kneeded longer for more pliability. They were pretty rock hard the first time.3) I'm on day 15 and have a little 'shedding' but nothing too serious -- I keep telling myself that this is to be expected.I'm doing FEC every 3 weeks x 6; one down and 5 to go.
4) Is everyone receiving Emend? I think my first one was a shot day of infusion and then two pills to take in the days following. I read or saw somewhere that Emend contributes to hair loss. Anyone know anything about this?
4) Did I understand that some women remove the caps from their storage boxes and place them in ziploc bags and then into the dry ice on infusion day? I thought Frank said they had to remain in the storage boxes -- the ziplocs would save a lot of space. My first go around costs $200 in dry ice but I'm not complaining if I can keep my hair.
Thank you all so much for being here -- I don't feel nearly as alone knowing that I have penguin sisters and we're all cheering for one another!
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Hey littlepenguin60~
I did hear that a SE of Emend was hair loss. For that reason I did not use it but I know some ladies have used it.
We DID take the caps out of the boxes and put them in ziploc bags when I did it but I think Frank might have said it was bad for the caps? Maybe someone else can comment...
I will be cheering you on...
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littlepenguin60 (love that name too)....
1. Caps can be used an regular freezer temperature periodically. It's supposed to stimulate the follicles and promote hair growth. I know that inflamation is very bad for the follicles so perhaps it helps with that too (or maybe that is why it works). You don't have to do it and it. I hardly did that and I hardly lost any hair.
2. Everyone has their own recommended temperature based on the information you provide Frank (mostly hair thickness, texture I imagine) but around -30 is the typical. I know it's already cold but it does matter. If the caps are too cold you can get frostbite. You should also be wiping the frost off the caps before you put them on.
3. Sounds like you are doing well!
4. I did not receive Emend. It's supposed to be good (and very expensive) but people have mentioned the possible hair loss thing so I'm glad I was not given that.
5. You are correct. Earlier on we were placing the caps in ziplocs to save space and to get the cap temperatures to be more even. This worked great but Frank does not want people to do this anymore as it is rough on the caps. I had broken caps as a result of that process I imagine.
Yes, we are a great penguinista group and we are happy you joined.
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I had been thinking about supplementing in between cold cap sessions with just using them out of the freezer intermittently but have not done so yet. I wasn't sure if it would be of any benefit. Frank had not mentioned adding this in between. For those that have done so, at what time point in between chemo sessions and for how long?
I have had 3 doses of Emend and no SE of hair loss now 26 days out and 2 sessions of TC ( I am doing TC x 4). I have had no nausea whatsoever after each session.
littlepenguin60,
I keep the caps in the storage boxes on the dry ice in the coolers 4-6 hours prior to starting the treatment. After 2 sessions we have learned that we have to remove and prep each one for approx 30 min to get it down to the desired -32 degrees. They are rock solid and much colder when removed from the cooler initially. It takes my husband some time to knead it so it is pliable enough. Once you get a system going, it goes fairly smoothly. The second time on after being back in the coolers is much easier to get to the needed temp. I believe that the caps need to be in the storage boxes as compared to the zip lock bags due to fact that many were damaged easily in the bags compared to the boxes due to the extreme low temps
Drim,
How often did you use the caps at regular freezer temperatures and for how long?
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Hi everyone,
I do think this is a "newer" recommendation from Frank. He told me to wear 2 -3 times per week for an hour ( I wear 2 caps for about 30 minutes each) throughout chemo and also said he was thinking about recommending having us keep 2 caps after treatment to do this for the first month or so after PFC. I actually don't mind it -- it's not too cold or uncomfortable at all.
For the temperature -- pretty much it seems most all of us were given -31/-32 and 4 hours after infusion. Penguinistas? Am I right on this? I know it is specific to regimen and hair type - but seems that way.
I bring a few 2 gallon ziplocs and a thin towel to use during the day if needed to lay on top inside the cooler -- they get cold quick this way if needed and stay cold if early in the kneeding process.
Happy New Year Everyone!!! I am so hoping 2011 is a BORING year for me.... I have had more things that have happened to me in the last 2 years that I'm hoping for good old BORING. (Of course after my final exchange and reconstruction, finishing chemo and getting my hair done!!!)
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hello everyone,
I have been gathering many items for the big day, hairdryer with cool setting/pure shampoo/Alterna hemp spray on leave -in conditioner/silk and satin pillow cases/satin hair cover/infrared thermometer(which my husband likes-so it will be his when all this is over)/smart mouth and biotene mouth wash/nasopure saline solution/wide tooth comb/neck pillow/timer that rings/ moleskin plus pads/2 gallon zip lock bags/insulated gloves(for helpers)/electric blanket/colormark root touch up. A big list, plus filling all perscriptions from Onc. I haven't been able to find the chamois cloth--any suggestions? Also ice packs with pellets--where to find that--is there a brand name?? On a very early post someone mentioned mittens and toe covers with ice--anyone know anything about that?? I am trying to have most things on hand, so if I need them, I won't panic about where to get them and when. One big problem is that I don't drive and I need to rely on my husband to drive me for things. There are some stores within walking distance, including a CVS, so I can get a lot of the things there. I called my Dermatologist for a script for the generic for Latisse, but pharmacy says it is new and not available yet. Does anyone know where and how to get it online? Latisse is $100.00, I don't think its covered by insurance.
mje: I spoke to Frank and he suggested I use the caps at home from regular freezer 3X a week for 2 hours each time, changing the caps every 1/2 hour.
To all you Penqunistas: Have a very HEALTHY New Year and hope it willl be happy for us all because we are beating this lousy disease and keeping our hair too!!!!
Nancy
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Latisse generic:
here is a source http://www.drugs-health.com/womens-health-generic-latisse-c-77_78.html
I have been using this for quite some time and it is fine, works and is safe, well packaged and a third of the price!
Chamois (The real, suede kind) : Try a store where automobile goods are sold.
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keeppositive,
You can find chamois leather at local auto store such as autozone or pep boys if you have one in your area
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I have had two rounds of the emend--I have had NO nausea---but do not want addition hairloss---sitting on the fence wondering if I should decline it at my next infusion---Jan 20???? If anyone gets word from Frank on this please inform me--
HAPPY NEW YEAR TOO ALL OF US PIONEERS!
SHARON0 -
HEALTHY & Happy New Year Everyone,
Does Emend cause further hair loss? I just heard from someone that Emed caused her to have nausea and when she didn't take it she had a much more comfortable session. I thought Emend was FOR nausea.
Keep positive ,
Nancy
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I had Emend for all 6 treatments, and it absolutely worked to annihilate any trace of nausea and with no other additional remedies required (didn't need Zofran, compazine,etc). The infusion can be tough though, and may need to be somewhat diluted or slowed because it can cause irritation at the infusion site.
As for exacerbating hairloss, it is impossible to quantify the thinning that it MAY have caused vs the thinning that we experience with the cold caps anyway. In any case,Ithe Coldcaps were quite a success for me despite the thinning AND the Emend.
Conclusion: i recommend Emend; insurance covers it, and anyone who wants this relief should receive it.
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I have to echo what mtri111 experience was with Emend. I have used it 3 times now and have had no nausea whatsoever. I did not need to take Zofran or any other med. I have had no hair loss to date at day 27 and after 2 sessions of TC. I am sure there will be shedding which is to be expected. The exact contribution that may be contributed to Emend can not be determined although after researching it I do not believe that it is a major contributor
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I was too chicken to take Emend. My onc. had given me a pamphlet about it that had hair loss as a side effect. That being said, I had some awful nausea where it would have been great to be able to take something that worked...
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Hi everyone,
Regarding Emend: Because it was first tested on chemo patients, all SEs had to be listed. Naturally, hair loss was one of them. However, when Emend was tested on surgical patients, HAIR LOSS WAS NOT REPORTED AS A SE. Therefore, the logical conclusion is that hair loss was part of the chemo process rather than the Emend itself. After carefully reading the original studies, I decided to use Emend. I had no hair loss. I've not met any Penguinistas who used Emend who had hair loss due to it. And I had ZERO nausea throughout. (It could be that the cold caps not only prevent chemo from getting to the follicle, but prevent Emend from getting to the follicle. It'd be a great study, as we're the first significant group to go through chemo without losing our hair.)
Everyone needs to make their own decision; not all cancer centers offer Emend because it is quite expensive, but it is tremendously effective.
Hope this helps!
Susan
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Susan ~ you always have such helpful information!! And always so positive and have a wonderful way of saying things.
I'm with Ang7 and was so cautious of anything with hair thinning (wish I had posted here about it) so I get Zofran (onadestron) in my IV as a pre-med. I haven't been nauseous at all and haven't needed any meds. I'm on TC and nausea seems to be a less frequent SE -- and I take glutamine which is supposed to help with intestinal issues and neuropathy - but hasn't been an issue (knock wood) I hear that adrimycin (A) is much harder on you with this SE and most need some anti-nausea meds.
As many of us say, everyone has to make their own decisions and all decisions that someone makes are right for them.
Happy New Years Eve!
Ok so I don't know if you all think it's funny? (my counting:-) but WAHOO -- It's Day 50 for me!!! I think I mentioned I used to run marathons and when this chemo journey started and decided on the PCC I've decided that I'll feel I'm successful with my hair and able too get back to my new normal at 100 days post first chemo. Well for me I just reached 13.1 miles... everyday now I have less to go than what I've already trraveled....
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Well, I'm on day 16 after first treatment of FEC; I washed my hair today and it began to 'shed' a lot -- really creeping me out right now. I happen to have a lot of hair and hadn't really lost any to mention until today. Now I'm afraid that's a sign that it's going to go -- I was afraid of hanging too much hope out there on the caps. Anyone have any advice? I wish everyone a Happy New Year with all of your dreams coming true!
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littlepenguin60,
Do not be discouraged. You are at the point where shedding is normal and to be expected. It does not mean the caps are not working for you. You are in the time frame of days 14-19 when there will be some shedding. Once you get past this time frame you will see that the caps have been successful for you. If you feel that you need to do something you can try and supplement wearing the caps out of the freezer for 1 or 2 hours a few times a week. Some have described decreased shedding after doing this.
I know that its difficult but hang in there! We are all here for you and going through the same things together.
All the best for a healthy and happy 2011!!!
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littlepenguin60 ~ I will second -- do not be discouraged! The shedding is scary -- I washed my hair once -- and I stared in the mirror as I saw hair "flying: away" -- every time I combed there were 10 or so hairs and it did not seem to want to stop as my hair dried -- this is when I wrote this board and asked all to get me off the ledge!! I was crying in the mirror. That was almost a month ago.. and the shedding does continue and comes and goes... but when I look in the mirror and really ask myself you can't see a difference.
I think I thought I would not lose any hair at all .... and everyone that talked me off the ledge would say yes you are going to shed but in the end you will have your hair. SO I'm saying the same to you....
You are doing great!!
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Thanks for that insight---I am going through the same thing--the hair is everywhere----to me more than a shed--I do the caps a few times during the week--just trying to hang on----thinking that 2011 will bring an end to this tx---and better times to come!
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littlepenguin60: That initial shedding is normal, which doesn't make it any less startling! That is the point at which otherwise your hair would be falling in clumps very quickly. Try to manipulate your hair as little as possible -- it really is trying to hang on -- but know that this is normal. I began keeping a ziploc in my bathroom at about that point, and I kept the shed hairs in it. Whenever I panicked too much, I just held the bag up to the mirror and compared how much hair was on my head to the little bit in the bag. It helped! The shedding is heaviest during the once/week hair washing, and about 2-3 weeks (you'll find your pattern) after each infusion. For you it's day 16; mine was day 14.
You'll probably start to notice other body hair departing at this time also. Everyone is different; for me, my eyebrows and arm hair hung in until #4. My eyebrows got very faint after that, and I didn't even notice my arm hair gone until it started regrowing. Never lost nose hair and not much of my eyelashes. Didn't have to shave or tweeze all summer, that rocked! Believe it or not, any hair that you lose -- head or body -- will probably come zooming back in a hurry!
Hang in there! Take a deep breath, and just keep following the protocol. I see that Frank now recommends using the cap from the regular freezer a couple times a day for 1/2 hour or an hour. Any cold will help preserve hair and stimulate new growth, so it makes sense.
lmflynn: Congratulations on your 13.1 mile landmark! woo hoo! I also measured my chemo in terms of miles swum and miles hiked. The only 4 swims I missed were my four infusion days; otherwise I swam 1.25 miles every day, even at the end (at that point I was just plain stubbornly determined!) I probably walked/hiked a good 10-15 miles each week; it was hard to do hills or stairs at the end of chemo because my quads were very tired -- but the more I walked, the more the RBC oxygenated and the easier the walk/hike became. I just kept at it.
Happy new year everybody!
Susan
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