Cold Caps Users Past and Present, to Save Hair
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Yes, last chemo was March 25th. I went to my hairdresser first week in July because we were going to Disney. Hairdresser had BC herself so she is ultra careful about what she uses on clients...
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Hi MTG, I used the Penguin Cold Caps this spring/summer and did not lose my hair. My oncologist was skeptical but was one of the most amazed; my rad onc asked me to present at Tumor Board and my acupuncturist is a champion. But the best news is that this summer UCSF began a clinical trial using the Penguin Cold Caps; my neighbor is part of the trial. Frank can probably tell you which physician is running the trial (I think her first name is Hope but can't remember the last name) but I bet you can find it quickly if you check at UCSF.
And, as we know, the caps work and I hope that this will move things quickly towards FDA approval. I don't know of research with any of the other types or brands of caps.
Hope this helps!
Chey: you are awesome! you go girl! I didn't notice it at the time but the hair I'd lost during chemo had begun growing back while I was going through chemo also. So you are way ahead of the game!
Best,
Susan
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ok just got the caps in the mail for my first chemo next week....i feel like im putting them on wrong. we followed the instructions but im worried abotu it not being close enough to my hair line at my forhead but more so around the sides of my head down to my ears and in the vey back bottom of my head...also the chin strap is really bothersome....im feeling so defeated before ive even started...im terrifired of chemo i have 12 weeks of weekly taxol and then im done only need the chemo bc of hte herceptin but im starting to crack...ive been so positive...did great through surgery BMX, recovery, but chemo just seems so scary and im terrified of how im going to feel and if the caps are even going to work or if im even going to be able to tolerate the coldness...so scared and just want this overwith..was supposed to start this week but i have a head cold and they refussed to put my port in til friday.... any help with how to wear the cap would be great..thansk ladies!
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jpmercy,
I know there are some tutorial videos on them on YouTube...I watched them when I was looking into the caps. They seem to very helpful with how to put the caps on and adjust them. I know there will be others that will chime in soon with more useful advice.
Good luck!
Tori
DE COLORES!
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Hey jpmercy~
I hate most everything cold. When you do the Cold Caps you should layer yourself with blankets, coats etc. I had a huge Hot Water Bottle that my husband would keep changing the water on. I do not know if you have access to food but I would eat hot chicken soup during my treatment. I bought myself a blanket that you squish into the microwave and it gets toasty warm and stays that way for awhile.
Big warm hugs being sent your way...
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My sister and I met with a NJ Onc today....very agressive: chemo no matter what MRI and lumpectomy shoes (ok, she is HER2 +++, but still), ABSOLUTELY NO COLD CAPS and pushing for double mx and ooph if BRCA is positvie.....Oy ! Bottom line: we're still looking for a good onc in NJ (northern NJ) or failing that, NYC.0
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MTG: Your sister definitely absolutely needs a second opinion!! It is possible to overtreat, but it doesn't sound like this onc is "open" and there couldn't be a true patient/physician partnership. It must be a partnership, not a dictatorship! Hopefully Drim will see this because it sounds like she had great care and a good team. Hopefully your sister has an Oncotype test to help navigate. The HER2+++ is significant, but the absolutely no cold caps is just not informed (and not surprising. This'll change in a couple of years, trust me!).
Susan (who works at a major hospital and is therefore emphatic about the "partnership" thing)
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jpmercy: the instructional video on the Penguin Cold Caps site is very good with one exception: it fails to demonstrate (or explain) the importance of the straps! We always put the first (long) strap on securing at the back and going along the perimeter/hairline, very tight. A second one (short) strap, went pretty much on top of that one. The third (short) strap we used to cinch any gaps. You will want to play around with that and practice; you'll know when you have your first chemo and you'll be able to tell if there are warm/cold spots on your scalp. Remember that every head shape is unique! The caps have recently been slightly re-designed so that the crest of the skull (I don't know if that's the correct word for it) has more gel and less gap at the overlap. Anyway, we used the third strap to press that in. The old caps looked kind of bat-wings and the third strap pressed it in. I have no loss at those spots.
I should add that I have thick, long, curly hair.
Yes, the chin strap is uncomfortable and one of the recommendations is some gauze or moleskin or something there. And I forgot every single time! Went through four chemos and as we put on the first cap, each time I'd thing "dangee, I forgot to get something for my chin"...
There were times I could swear certain parts of my scalp didn't feel cold enough, but in the end I had no bare spots. I had thinning above each of my ears, esp. my right ear (guess I'm lopsided), despite the fact that the caps were cinched ridiculously tight right there.
Anyway, the hair I lost is now growing back stronger than ever. I flyaway hair because I have long hair but lots of 2" growths all over (the hair was growing back even while going through chemo). Nothing a little gel doesn't fix right up.
As for other body hair, there were some places I *loved* not having hair while going through chemo.
I'm now 4 months out of chemo, and just ran into someone at work today who didn't have a clue what I'd been through. Man that feels great!
Cheers to all,
Susan
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jpmercy--I HATE the cold and I tolerated the cold caps. First, you need to take a pain killer (I used advil, pick what works for you) before you put on the first cap and remember to take another pill before the the first one wears off. I tended to take an advil at 11 am and another at 5:00. I wore the caps for 4 hours after the infusion ended when tended to be 8:30/(9:00 PM).
Second, I used an electric throw (think small blanket) and that kept me warm. I often didn't need the electric throw until the 3rd cap because I was in a hospital bed with blankets. But many woman get their chemo in lounge chairs and you might need the blanket sooner.
Third, those darn chin straps. I used panty liners on my ears and neck (moleskin PAD on my forehead). The "3rd strap" is not shown in the video which was very confusing to me. But if you are old enough to remember comics that showed someone with the mumps--that person had this rag tied around his/her head. That is what the 3rd strap is like. I did find out that the strap could be loosened once the caps was on securely.
Finally, the worse time with the caps was the first practice session. It took my hubby what seemed like 10 minutes to get that first cap on and since I had NO forehead protection it hurt like hell. A piece of moleskin PAD, some practice and there was no pain and the caps were on in under a minute.
The uncertainty of the process is the most stress producing. At least it gave me something to fixate on othe than the chemo. Many woman have used the caps successfully and I can't imagine that we all put them on in EXACTLY the same manner.
Good luck, and it is worth it!
Colleen
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thanks ladies....the anxiety is slowly deminishing! anyone know if you can take xanex before to help with anxiety and advil? ill check my doctor just worried about mixing all htese things iwth chemo.....getting my port tomorrow morning...yuck!! oh ya and i only got 2 straps not 3????
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Hi Ladies: Thanks Sebm9 and Michcon for the tips on dry ice. I guess I need between 40 and 100 lbs for 14 caps and will pick a number somewhere in between! Ohmygosh what a crazy day yesterday, My caps were supposed to arrive then (Wed for 1st chemo Friday) and they didn't. Spent all day on the phone w/ FedEx (ground) and it looks like they've finally arrived in OR last night; I'm going to have to go drive somewhere to pick them up. Then practice tonight. Argghh. Well at least I shoudn't have to reschedule the chemo. Jpmercy--looks like we'll be going thru this together, more or less, good luck!
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jpmercy
The nurse dripped ativan for me when I got there the first time. I told her my anxiety was through the roof! Then she got the doctor to write me a prescription. I take it the night before and the morning of Chemo. Seems to help relax me. Good luck with the port surgery, mine was pretty simple, didn't last long so you are awake quicker. And pain was minimal, more like it's just uncomfortable because there's something foreign in your body.
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Lucky60
It's up to you, but I don't know if I'd buy more than 50 pounds. Although, mine was in pellets and sounds like you may be buying it in slabs and breaking up. I did 40 this week and it worked fine. One thing you don't want is the caps to be too cold, but better than not cold enough... Start checking them about 6 minutes before you need one. If it's too cold you can get it out and start kneading. They cool down pretty fast once you start doing that. The norm for me is taking them out about 2 minutes before and kneading ,now that we have it down after 3 times. At 2 minutes out a -40C cap, after kneading for a few minutes went down to 32.
Good luck with fed ex, how annoying! And I'm sorry I didn't record a how to this week. I was planning to take my flip video camera to do it, but then ended up with only 2 helpers, so there wasn't a third to hold the camera. I too thought the youtube video was not helpful enough for showing how to do it. After a few caps my friends had it down though and they are now pros!
You just inspired me to bring the camera next time so I can help other people understand how to put them on.
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To All -- Amount of dry ice. I had four treatments and 14 caps. I needed to keep them in 2 coolers. The first time I got 100 pounds. Divided between two coolers that worked well; however, we were following some directions that suggested the caps would get cold enough (-31C) in a few hours. NOT. We had to apply dry ice directly onto the first two caps to get them cold enough. I think it took at least 6 hours for the caps to reach the right temp. Dry ice seemed to last for days. So for treatment #2 I got 90 pounds of dry ice delivered the night before and put the caps on dry ice then. This was so much better! We didn't worry about getting up at the crack of dawn to put the caps on ice. They were a few degrees colder than needed and would come up to the right temp in a few minutes with some needing.Lots of dry ice left. So for treatment 3 - we thought 80 pounds would work -- wrong. With two coolers my husband was concerned that the caps were not surrounded by enough dry ice. He made a quick trip to a store to buy #10 more. Treatment 4 - got 100 pounds of dry ice the night before, put caps on ice, went to bed and didn't worry about caps. They were fine the next day.
Practice makes perfect.
Colleen
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Wow Colleen, such a different story! I guess it's like side effects are different for all. I put the caps in the coolers with dry ice about 2 hours before and they got cold really quickly between 3 coolers and 40 pounds of dry ice pellets. Did you keep the caps in your freezer or were they completely thawed? Mine are in my freezer. I bought the dry ice the day before and kept it all in one cooler before transferring amongst the 3 in the am and placing caps in. Interesting!
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Michon- i will be usign pellets too for 13 caps.....what size coolers do you have? im so confussed with all this dry ice stuff and its making me a little crazy! we are practicing this weekend getting the dry ice friday night and pretending its chemo day on saturday and seeing what happens- i dont ahve chemo until wednesday. im doing weekly taxol x12 and herceptin. so overwhelmed iwth this!
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Hi jpmercy- I put the cold caps in ziplocs instead of the containers provided, that helps to cool down the caps down to the right temperature more quickly! and like michon said, you should keep the caps in your freezer, though it takes up a lot of space!! I totally understand how you feel right now! I was so anxious and couldn't sleep just thinking about the caps and the possibility of losing hair! My advice is to put the straps on as tight as possible especially around your nape to above the ears. I failed to tighten the straps the first time, and got bald in those areas! I'm Asian and have very thick hair, so it was probably more difficult to cool those areas covered with thick layers of hair. Luckily those areas are covered, so I don't need to wear a wig after 3 rounds of chemo (TC). Yeah, and the darn chin strap!! It comes so close to your neck and feels like it's strangling you. So have a handkerchief or gauze or whatever to put between!!
Good luck, I'll be praying for you and all the girls out there in your shoes! I'm sure you'll do fine with all the girls great advice and support!
To All- I have my last round of chemo next Tuesday, Oct 19th. Can't wait 'til it's over! And if anyone needs 14 cold caps plus 3 straps in Illinois area (northwest suburb), let me know! I don't drive, so I would appreciate if you could come and pick them up. I'll be more than happy to show you how to put them on etc!!
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did anyone have problems with sore or issues on their skin on their scalp? i had a doctor indicate this would happen
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Hi All
To answer a couple of questions -- yes I did keep the caps in ziplock bags in the freezer. They were starting out cold, but still took all that time to get to -31C. I think the quality of the cooler may play a part. Also, I was doing this in Southern California in the summer and the coolers with the dry ice were outside so I'm sure that had a small effect.
FWIW--Frank was emphatic that the caps must be in their keeper boxes when in the dry ice! It is fine to have the caps flat in ziplock bags in the home freezer, but it is now known that the caps will sustain damage if they are subjected repeatedly to the dry ice while in the zip lock bags.
I know much of this information is contained in earlier parts of this thread -- but to save people time I'll repeat some of it.
Before and in between treatments the caps may be stored flat in jumbo ziplock bags in your home freezer.
But caps into keeper cases (those plastic boxes that they came in) and put on dry ice prior to treatment. Exact length of time on dry ice prior to treatment seems to vary by type of dry ice/cooler/location. When in doubt (IMHO) do it the night before and don't worry about it the next day. The caps are so much easier to warm up, than to freeze down.
During treatment, when you are finished with a cap, put it back in its keeper box (I guess you could take the ziplock bags with you and put it back in the bag; never thought of that until right now). The main point is don't put used caps back in a cooler with unused caps. The used caps are "warm" and will affect the temp of the "cold" caps.
Finally, have at least one helper with a great sense of humor. You need someone to make light of the process; because the process for the first time is stressful. It is a 9 on a 10 point stress scale. You are full of uncertainty. You may encounter "attitude" from the nursing staff about all the stuff you have. Your helper(s) worry that he/she is not doing it right and will cause you to lose your hair. The caps are not very comfortable. You start to wonder if this is worth the work and the money; after all, is bald so bad???? But doing the caps made me forget all about the chemo. And I think there is value in that.
By treatment 2 the stress level is a 3 on a scale of 10. After the second treatment, stress is no longer an issue. There is still the logistical work of caps -- but that is just busy work; it isn't stressful.
So are the caps worth it --- YOU BET! If you read other boards you will notice that wigs aren't all they are cracked up to be. They are hot, itchy, unflattering, expensive, etc. Would I do PCC again -- absolutely! And, as a triple negative, I need to be prepared for that possibility.
Here is an article about my use of the cold caps: http://www.neontommy.com/news/2010/08/cold-cap-therapy-may-help-cancer-patients-keep-their-hair
Colleen
(4 TC @ 3weeks from July - Sept)
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Hi All:
Just wanted to let you know that my 1st chemo and cold cap treatments went really well. Very little discomfort; my team really rose to the occasion with getting the temps and schedule down! I'll write more tomorrow about my pellet dry ice experience. Thanks for the tips! Now to bed...
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Lucky60 --- wonderful news! If the first one was easy the rest will be a breeze.
Colleen
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alright did our practice this morning...having doubts that i can tolerate the caps they are so cold and are giving me a migraine like headache i notice it does go away after the first 5 minutes but i just dont know if i can do this for 6-7 hours once a week. i swear im not a whimp ive run marathons, had natural childbirth, barely complained about BMX. im not sure if im just emotionally falling about bc of the chemo and the anxiety is making the caps too much to bare or what im guessing this is it more than the 5 minute headache but i feel so defeated that i cant do this....gosh im acting like a whimp i know ladies! please help me get through this! not sure if being bald will be so bad.....
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Hi Jpmercy---Yes, you can do it! I took two Advil about an hour before putting the caps on, and 1/2 an Ativan and just sailed thru. If you don't have an Ativan scrip, they should have some at the chemo center for you. The worst part was the nurse putting the IV in my arm (had to try two places). After the first couple caps, I actually told my helpers to leave them colder because they didn't feel that cold. My temp was -31 and my hair is really thick, so that's probably part of it. But I think the Advil and Ativan helps too. Get an electric blanket. I brought mittens and one of those skiing neck warmers, but didn't need either of these. A scarf is nice for tying around any remaining gaps around the edges of the caps.
As far as the dry ice, we used about 85 pounds of pellets total in two coolers, one 100 quart and one about 1/2 that size, I think, for 14 caps. I got the ice at 4:00 the afternoon before my 8 AM appt. We put 3 caps in the dry ice overnight to make sure we had ones cold enough, and put towels over the top inside and left the coolers outside (40 deg temps at night here). In the morning 3 hrs before my appt, we put the rest of the caps (11) in the dry ice. NOTE you are not supposed to take the caps out of the boxes and put in bags on dry ice anymore--guess they had damage that way. I think that in the boxes they may take a little longer to cool than if you were allowed to put them in the plastic bags, but the technique above worked fine. 10 boxes fit in the big cooler and 4 in the small one, with dry ice below, around and a little one top. Get a scoop and gloves for the pellets, but they're pretty easy to work with. I put stickers on the 3 boxes that we precooled the night before, and we used them first. They were a little cold so take them out 10-20 early and check the temps. The others were about right by the time we were ready for the 4th cap. This sounds complicated, but it really is not that bad. Hope this helps. Let me know if you have any more questions.
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I remember Frank telling me NOT to use baggies, to keep them in the tupperware things...it damages the caps otherwise.
Maybe I was on the old caps...I thinned around my ears quite a bit, but kept everything else. As long as my hair was down and not in a pony tail...noone could tell. Now I have these crazy little curly tufts growing around my ears and I look like an ewok (from Star Wars).
As far as hair coloring...I posted this before and got a bit of a wallop
....but I highlighted my hair throughout the whole time..foils, and had no issues. I did it several days BEFORE chemo, so that it would be out of the follicle as much as possible before exposure to chemo drugs.Oh ...ELECTRIC BLANKET and ADVIL !!!! That's how I managed the misery of the cold!! All worth it!!
I just got called into my hospital to talk about the caps and am helping some new patients starting chemo. One other girl in my area has used the caps and we now have generated some more interest amongst the staff which is exciting. Anything to help a sister!!
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jpmercy - marathon, natural childbirth, you certainly are not a wimp! I also had SERIOUS doubts during the practice session, but that was because I hadn't taken an advil and I was only using Moleskin on my forehead. I quickly switched to the Moleskin Pad and the forehead pain went away.
I don't know how old you are, but I am post-meno and have lots of hot flashes. I initially drank hot coffee at the beginning of chemo to encourage hot flashes because that minimized the coldness of the caps
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Another detail I learned -- do NOT use rubber gloves for handling dry ice. Use leather or heavy woolen gloves. This per my dry ice man. Inexpensive leather work gloves are fine.
Colleen
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HI,
Starting TCH on my 31st b-day on Nov 2nd. I want to use the caps but I'm not sure if I will be able to tolerate the cold, I hate being cold, even icepacks bother me. Am I going be able to do this/ Anyone with same treatment( 6 rounds) and positive results in terms of keeping your hair? I just want to feel human while I'm doing this.Thanks.
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Sylvia! im starting on Wednesday so ill let you know how it goes! and the good news for you is that you only have to do the caps 6 times i have to do it 12!!!!!!!!!!!! calling the doctor tomorrow for some ativan....and just put some advil in my carrry bad! my mom is too funny she is a 23 yr survivor...did not have to have chemo at hte time but is DETERMINED to use the caps and make them work...she actually wore them for an hour yesturday at -31 degrees yes its cold but she convinced me that i can do it! and so many of these ladies have said they did it....i trust all of you on here and will be so thankful when i dont have a pixie cut come spring! mind over matter we can do this!!!!!
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Zlota - Gee does putting a sweater on when the temperature dips below 80 degrees qualify me as someone who hates the cold, LOL! I know there are women posting on this thread that have had at least 6 treatments, I only had 4 TC. Also the women involved with the Rapunzel Project had lots of treatments.
An electric blanket, hot liquids to drink, pain killer ahead of time, and moleskin PADS make the cold caps very doable.
Colleen
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Colleen is right - the caps are cold for sure but you can put mole pads on your forehead and sideburns and pantiliners on your ears to protect those parts for the cold. The caps themselves are really cold when you first put them on put your scalp gets used to them after a short while. Your body will start to get cold as well but an electric blanket definitely does the trick.
jpmercy - good luck on Wednesday!!! For sure you can do it!!!!
zlota - There are several very successful PCC users who were on TCH. I'm sure some will come around and tell you themselves but I got my caps from someone who was on TCH and I nearly cried when I saw how amazing she looked. I also passed the caps to someone who is now doing TCH and she looks amazing as well.
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jpmercy - You can do it! I won't sugar coat it, it's not pleasant, but definitely gets better with each round. Once you get in a routine and set your mind to it, you can do it. I just keep picturing the alternative and it keeps me on track. I want hair! I'm a very impatient person, so I'm not good at the tolerating and getting through, but I'd be much more impatient waiting for hair to grow back.
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