Cold Caps Users Past and Present, to Save Hair
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Wildflower2 - I got it colored a week and a half back. I was going to straighten it the night before w my flat iron.
Thoughts
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Hi Ruddycat. Geralyn knows her stuff- not only is she a Penguin rep, but she is also a former cap user. I think the two most important keys to cold cap success are making sure the caps are cold enough and making sure the caps fit snugly on your head- with no gaps. Use the palm of your head to push down on the cap while your husband is fastening the velcro straps. This will help prevent the cap from popping up and losing contact with your scalp. I would put your caps on ice at least 4 hours before the infusion. Three hours may not be enough time to get the to the right temperature. Good luck!
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Hi Leigh Ann (ruddycat), GOOD LUCK today with your first cold capping! I've only done it twice, so I'm not a lot of help but I wanted to answer a couple of things. I did a freezer, so I can't answer about the coolers. But I will say that my nurses have been great so far about the 40-50 minutes before hand. Also, they give me my pre-meds and then have to wait 30 minutes before the chemo, so that helps a lot with timing. My mom is my cold capper and she was also very nervous. She even had nightmares about the timing! But the second one was very smooth and we feel good about it now. And yes, she also had a fancy spreadsheet! And she just uses the timer on her phone and figured out when to get the next cap ready. I don't know about "too tight". I have medium thick hair and we use 2 of the 3 extra straps. It never feels quite tight enough around the back, but my understanding is that that is OK. You'll feel the cold on the top and sides and know that's correct. Good luck and let us know how it goes!
Mypinklife and FLBuckeye93, I am worried about washing my hair too. The cold hair wash is worse than the day of cold capping! I have been washing my hair in the kitchen sink with cool water (my wonderful husband helps) and then immediately taking a warm bath to warm up and pamper myself. I wash about every 3 days except chemo week. I worry that I'm being too rough with the shampoo. I haven't styled mine at all. I just let it air dry. So far, it's not as awful as I thought. But as it grows out I know it won't look as good. But I just keep telling myself, "a bad hair day is better than a no hair day"!
Good luck everyone!
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Leigh Ann/Ruddycat -
We are coming up on my third treatment, so I have only done it twice, but here are my 2 cents…
I only have one thermometer, so I don't know how exact ( it is just damn cold) but when the caps come out, some parts are -42 and some are -30, and you have to knead them a bit and redistribute the gel a little, and then it evens out. They warm up fairly quickly, so that temp is really your starting temp, so I would pick the warmer thermometer and use that.
My DH repacked the caps carefully with the white side out and straps in so that the caps got evenly cold.
It takes more that 3 hours for the first cap to get cold enough on the dry ice - about 3.5 hours, really. Our slabs were the wrong size, and so bags of chipped ice worked fine. My DH seems to wrestle with them for a while and it is really noisy!! I had trouble fitting the total volume in the coolers, and we were a bit shy of 80 lbs the second time and it worked just fine. I have one Ice cube and another marine cooler, and the boxes were a tight fit with the ice in the ice cube - the first go, my slabs were too thick and so it was too tall when I packed it - we take the frozen caps with us in the cooler to go pick up the dry ice and pack them there as we are picking it up.
The way the caps are in the cooler maximizes the cold for the first layer ( the cold air sinks to the bottom, so the bottom is the coldest part) so in spite of it being awkward to get the first ones from the bottom, there is a reason:) Marking the boxes was a challenge for me - I used a wax pen on dry containers.
The first time, I could not tolerate the over the top strap that was recommended for thick hair. The cold was pretty shocking, but part of my problem was anxiety about frostbite, which I did not get
The next time was much easier as I knew it would go ok. The goal with the straps is to get a good fit on your specific head, so there is no "right" way. Play with them before they are cold to figure out what works. I do have to loosen them when they feel too tight.I expect you will have to throw away the countdown sheet once you get started, because things are never perfect! It is important on the first change to figure out how long it takes to take the cap out ( dig for it at the bottom) and get it out of the box and massage it and check the temp and dry it. It seems to take about 5 minutes. You are always better changing a bit early than a bit late - the first go, my DH was less on top of that and I really noticed the discomfort when my head had warmed up that little bit more and a new cap went on. The first two changes at 20 minutes each go by really fast, and then after the 3rd, things get less stressful:) Basically, you then just set your timer on your phone for 25 minutes and go… and reset it for when the cap is on again each time.
The first time, we did everything in the suite which made the chemo appointment delayed by and hour. The second time, we went to the cancer centre early and started our capping in the lounge area, starting 45 minutes before my chemo appointment. I took my pre-meds 30 minutes before the appointment time ( as they asked me to do) and then they were running 15 mins late, so we did the next cap change in the waiting area ( bit of a spectacle, but we were laughing ourselves silly through it.) It was pretty efficient.
Our chemo suite is open air, with little curtains, so it wasn't an issue with being an enclosed space - the door open should be enough it is a private room.
A tip about moleskin - I cut it to fit my forehead and back of neck and it was perfect. However, it is really really sticky and hard to get off after - I pulled some precious hairs out! The second time I got wise and rubbed a cotton ball on the edges that touched the hairline and that was way better - it only really needs to be glued on in the middle. I think I will keep using those same pieces and tape them on the bottom if they lose the centre stick - it takes a while to cut them correctly. ( BTW I got the headbands, but didn't need to use them- had great coverage and I have a really bit head, as in ladies hats never fit me.) I did put mini pads on my ears but i think they were unnecessary.
The first 10 minutes the first time was the hardest by far, I had the "trying not to cry, OMG I can't do this" ( and I am usually TOUGH) and then your head gets a bit numb and after that it is uncomfortable but not impossible. Like I said, the second time around we were killing ourselves laughing - ok but again those first 10 minutes, deep breathing with my eyes closed…)
Best of luck to you.
I am waitlisted for chemo this week ( delayed a week for low platelets) so that should be interesting to get the dry ice 4 hours prior and for DH to extricate himself from work.
Karli
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MB12,
You could probably get away with straightening your hair using a flat iron the very first time before starting your chemo treatments, but I wouldn't continue to do it once you're in active treatment. Chemo-damaged hair can become really dry and brittle. The Penguin rep advised being very gentle with our hair during chemo and avoiding heat, pulling, etc. I did use a flat iron occasionally on the very ends of my hair to give it a little more curl, but I didn't go up and down the entire length with the iron. My hair is fine and straight to begin with, so it didn't take much effort. If your hair is naturally curly and thick, I would imagine that you have to exert a little more heat and tension on the hair to make it straight. You're putting your hair through a lot as it is, with chemo and capping, so myself, I would be very cautious about adding heat to the mix. Good luck and keep us posted!
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Hi Leigh Ann,
I am getting ready for round 2 of TCH tomorrow and have been pretty successful with the exception of a little frostbite. Yes, there is such a thing as too tight! My hubby was so focused on getting it tight because I have a little head that it was too tight right at the top where the headbands and the top strap sit. Just be careful! i still have the frost bite line and lost a little hair there that has already started to grow back (not much and no one else can tell). If you look at dancetrancer pic's of cold capping it is a great example of coverage for the moleskin. I didn't have enough coverage on my forehead and that combined with the fact that it was too tight caused the frostbite. But I'm ready for tomorrow:-).
I just bought a rolling pin to help knead the packs because that was really hard to get even with our hands last time.
I did straighten my hair prior to my first session because my hair is naturally curly, but needless to say i haven't straightened it since then. My mom washes it in the sink and I let it air dry. At night I braid it very loosely with silicone rubber bands on the end (4 braids). Helps with the tangles. I do add product on the ends of my hair to help control the frizz. These aren't things they recommend especially the rubber bands, but when I leave it down it gets all tangled and it is too difficult to comb out and i lose more hair compared to when I put the loose braid in.
Today is day 21 and so far so good! I am shedding but not too much more than usual. I am hoping that things will continue as they have!
Good luck tomorrow! You can do this!!!
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Hi all,
So I'm almost 7 weeks PFC and my hair is still shedding. This past week I finally had my surgery for a double MX with reconstruction. My hair seems to be falling out even more now after this! Has anyone had this experience? Any recommendations?
Thanks!
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Wish me luck ladies! Tomorrow is the Big Day 1 of TCHP!
Did any of you wonderful ladies order the gel head bands from Penguin? I have thick hair and just got the extra strap but totally spaced on getting the gel head bands. I have come to accept i may loose hair around my temples and at the nape of the neck but wondered if you guy think i should get the gel head bands too... I guess it may be too late. We've been practicing and so far i think i'm getting pretty good coverage. About to go cut our my moleskin pieces! Thanks for all the advice!
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Hi starsarestars,
I've heard that having surgery can cause an increase in shedding, even if you haven't had chemo, due to the shock on your system and the anesthesia. I noticed a slight increase in shedding after my port removal, but it slowed back down fairly quickly. Altogether, I shed for about 12 weeks pfc before it abruptly stopped. The pfc shedding wasn't anything dramatic, not like clumps of hair coming out or anything, just a continual, slow, shedding that really stressed me out...I think I lost more hair in the weeks pfc than I did during chemo. It sucked! Rest assured, your shedding will stop, but everyone is different, so it's hard to say exactly when. I think mine lasted unusually long. I hope some of the old pros will come around to offer reassurance - I know a couple of them were really helpful to me during this stage. Hang in there!
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33triple,
Yay for cold capping! The first time can be a little intimidating, but It is so worth the extra effort. My first capping session was a little out of control and pretty stressful. We didn't have a chance to practice beforehand, and we had some trouble with getting the caps to the right temperature...I was sure it wouldn't work and I would lose all my hair, but everything went fine and so will you! By the second treatment it will all go much easier, since you'll have figured out a process that works for you and your helper. It's amazing how fast you will get into a routine, and the time passes very quickly. By the 3rd time it will be old hat (except for the cold shock of that first cap).
Good luck and keep us posted!
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@wildflower2015 thanks for the love!
geez the whole process is so intimidating prior... i'm just excited to get on the other side of all the unknowns! the center i will be using has a freezer and those bad boys have been in their cooling since 7am. They say 24 hours does the trick although PCC recommends 48. I just won't have any way of making them colder if by chance they aren't cold enough. I'll definitely keep you guys posted!
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Hey everyone
Just popping in to see how everyone is doing? This Thursday I will be 7mths PFC and new hair is growing in everywhere in varying lengths still not completely back to normal and still not entirely happy with how my hair looks at the moment but still very happy I went through with using PCC. I've stopped stressing about my hair now and I'm just waiting for it to grow back to the way it was. Good luck to all of you going through treatment now you can do this just try to stay calm and not stress too much (easier said than done). 😘
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I have heard the same thing about changes in hair after surgery. And I did start shedding after surgery even before I started chemo and PCC. But I also wonder if it's because I wasn't washing my hair as often. Before, I would wash almost every day. After surgery I only washed about every 3 days and have continued to do so since starting chemo. I think not running my hands through it as often and not combing/brushing as often makes the shedding more noticeable b/c it happens all at once during the once a day that I brush it. Just a thought. But I've only done 2 of my 6 rounds of chemo and I still have all my body hair too, so I'm not exactly sure if my real shedding has started yet.
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Hi! Just wanted to update everyone on my first chemo session with cold capping yesterday which, all things considered, I think went great! It was a long and tiring day (capping from 10:00am until 7:00pm) and my husband was exhausted last night (because he really did most of the work) but overall - after all of our stressing about it - I would call it a success. The caps were absolutely bearable, with just the first couple of minutes of the first 1 or 2 caps feeling really cold.
The most trouble we had was loading our coolers yesterday morning. We had the 2 Igloo Ice Cubes but our blocks of dry ice were too big to fit 2 across so we had to break them up. Then, once we had 3 layers of ice and 2 layers of caps in their boxes, there was just enough room on top for a towel but not to place the gel headbands. So we had to take a 3rd cooler for the headbands and we also put in the Elastogel hypothermia slippers I had ordered - which, BTW - worked great. I think next time though, we'd take the dry ice blocks out of their bags (they were really slippery & torn up and took up a bunch of room in the cooler) and maybe put them in big ziploc bags that are easier to handle. We had pellets too, which were even nicer to work with in their ziploc bags but I'm not sure if you're supposed to use all pellets or if they keep the caps as cold.
When we got to the infusion center, we asked the nurse how long we had before my first infusion started and she said about an hour. So we immediately got out a cap to check it's temperature and shockingly, it was pretty good - right at -32C. Good idea Char110 about taking a rolling pin because those things were hard to knead! I put my moleskin on and immediately decided I didn't like how it fit so I cut a new piece that covered better - glad I took scissors and extra moleskin. I ended up with one big piece that was sort of a half dome for my forehead - curved at the top and straight across the bottom - and then 2 long, thin rectangles that covered from the big piece down my temple toward my ear. I followed someone's suggestion to rub a little Vaseline along the edges of the moleskin so it wouldn't stick to my hair and that worked perfectly. I just saw your tip Zinny about cotton balls and that would work too! I started out with panty liners cut to the shape of my ears but they kept falling off so I ended up cutting moleskin for them as well. I used a panty liner across the back of my neck and also had a scarf that I pulled up there - mostly just because it felt good.
MB12 - we did use the gel head bands but for some reason we had trouble getting them to the right temperature. The most important part is the back middle part of the band that will be covering your nape but ours would only get to about -24C to -26C in that area but we used it anyway. The outer edges were really cold (-40C) but they go over top of the cap so I guess that temperature doesn't really matter. They did help quite a bit with pulling the cap in tight again my temples. We mostly followed this YouTube video and it seemed to work well: https://www.youtube.com/watch?v=U952QCuPDeY
Our facility also agreed - relunctantly, I think - to accept a freezer. It's not going to be ideal because it will be placed in a locked med room down the hall that we aren't allowed to enter but a nurse will bring us out 2 - 4 caps at a time. That means we'll still have to bring 1 cooler of dry ice to keep in our room but that should still be better than what we went through yesterday and the caps can be stored in the freezer in between by sessions so we won't have to take them home with us. I'm going to get started on that process today.
We got kicked out of the infusion center promptly at 5:00 just after my last infusion ended but it was time to change a cap for the ride home so we had to do that out in the lobby - no big deal. The chemo itself was a breeze. The Emla numbing cream I had to ask for (after reading about it here) worked great and I didn't even feel her access my port. The only time I was uncomfortable was during the 2.5 hours I was icing my hands and toes during Taxotere (15 min. before/after plus 2 hour infusion). I was super chilled during that time and started shivering but my heated throw made it not so bad. Next time should be better with only 1 hour of Taxotere.
No side effects yet today from my TCPH - just a little tired. I go back at 3pm today to get my Neulasta shot and I'm hoping the Claritin I'm taking helps ward off some of the pains associated with that but we'll see.
Many, many thanks again to all who answered questions and offered encouragement (Jc254, JCS28, Zinny, Char110, MB12 & anyone I've mistakenly left out) - I really appreciate it!
Leigh Ann
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Hello y'all… shedding shedding shedding. It is so weird to have all of this hair come out. Yesterday we went for a big hike, and last night I went through my scalp to check for ticks, and this morning I am shedding all over the place. And then I can't help but run my fingers through checking to see if there are more stray loose hairs. It looks like so much hair, and I know it's not, really, but it does make one a little cuckoo, trying to figure out how much will be left at the end of all of this! Eyebrows holding strong, though they seem a little thinner ( started out like a Brooke Shields 80's brow!!) and still have my lashes. Trying to Latisse every night, but I forget quite often. The funniest is how hairy my arms still are!
Stay strong, ladies:) Ruddycat, sounds like it went great for your first one!!
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Round 2 of my treatment! Praying all goes well!0 -
ruddy cat I'mglad you first session was a success!
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Zinny, I'm feeling the same way. I just finished round 2 of taxotere last week and I too wonder if there will be any hair left by the time I'm done treatment. However when my husband tells me that he doesn't see any "bald spots" I'm again relieved and try not to focus on the shedding. I guess as long as no one else can tell....
sticking with it, and praying it all works out for everyone!
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Chemo day 1 complete! Just wanted to send a quick note and let you all know I'm doing well . Aside from a little extra flush in my cheeks, I'm doing great! I didn't have any of the reactions the look for in the extended 1st day . ☺️☺️☺️
The cold cap process I was so nervous about was not bad at all. I guess my many years of battling 24 hour migraines finally paid off as the scalp freezing was like a having an itty bitty 10 minute migraine!I AM a bit nervous however that the freezer wasn't able to get all of my caps up to 32 degrees some as were as low as 25 eeek!!! Have any of you experienced this?! I hope I'm still in the clear!! Hoping for better results next time but considering taking in some extra dry ice to cool the exact temperature next time.0 -
Char1110 you look adorable!
33triple so glad to hear it went well.
Estela, no bald spots for me either, just falling hair, no handfuls:)
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Thanks Zinny!
33 Triple the first time we were not able to get the dry ice slabs (they have to be pre ordered) so we ended up using the pellets. They got the caps super cold and it took a long time to get them warmed up. This times we had the slabs and things were a little more inconsistent. We started off right at 30 and had to put the back in to get them to 33 (we should have loaded 4 hours in advance/something we didn't have to do with the pellets). The other caps had been in there long enough so we didn't have that problem for the rest of the time. I also noticed that I got used to the caps quicker than I did last time. Maybe because I have been through the process before or because they were closer to the correct temp. I'm not sure if you used pellets or slaps, but I would definitely say the pellets got the caps colder even though i ended up with frost burn the first time. I do like the slabs better but I think you really have to play with the packaging and make sure that they have been cooling long enough. We are going to check the temp next time before we leave the house.
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Thanks Charr1110!
I actually used the freezer at the center, dropped the cold caps off they day before but didn't bring any extra dry ice since I figured the freezer should have done the job. Do you think if I pulled a cap out of the freezer that was a few temps off and placed the cap on dry ice after it would get the temp up enough?
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I couldn't find the slabs here so we used the pellets and they worked great especially by the end of the day when it was getting harder for the caps to stay cold my friend would just put the zip lock bag of pellets on the area of the cap that wasn't cold enough and it only took a couple minutes to get it down.
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Cold Cap Users - need your input! Finished 2nd round of chemo last week - 2 more to go (TC every 3 weeks). Oncologist was not optimistic about PCC but allowed. He said my hair would fall out 2 weeks after first chemo. I then read w/o PCC hair would fall out day 21 ...or day 28. Tomorrow is day 28. Is there ever a time when I can consider PCC a success? I still have most of my hair - lots of shedding - but I have VERY thick hair, so not too noticeable. It has become a daily stress that "today might be the day (it falls out)". Did any of you have significant hair loss after day 28? or does the hair loss probability start over after each chemo?
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I have learned quite a bit from all of your posts. I am fired up to do the cold capping and my MO is on board as well. Actually everyone I talked to at the Breast Clinic was positive about cold capping. My concern is that I will have 12 wks of Herceptin, Perjeta, and Taxol and then 8 weeks of Adriamycin and Cytoxan. Any thoughts on whether hair can make it through 5 months of treatment? Yikes
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KCourls, I think with TC and at Day 28, you have a pretty good chance that you're going to be a success! Even with all the shedding I had, no one could tell I was going through chemo. There are days when you'll shed more than others and then days when you probably won't notice any shedding. I know I would practically count the hairs I shed and I even took a photo of the hair in the sink after I combed it out after washing it, just to compare it from wash to wash. It always looked like a lot to me, but remember, we lose hair even without chemo, so altho it can look like a lot to you, it's probably not noticeable to anyone else.
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Kcourls at day 28 you are cool. Just keep in mind the goal is to have hair at the end of chemo. It is to look "normal" to others and not look like the pitiful cancer patient. It does not mean you will have your pre-chemo hair but a full head of hair with no need for a wig. If you look in the mirror and have a full head of hair - it is a success. I had to keep reminding myself of this and kept thinking I was going keep shedding til it was all gone. If you have checked out my blog, you will see I had a full head of hair at the end. Hang in there!!! Hugs!
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I shed evenly throughout chemo and after but if you get to your third chemo with hair I think you can consider it a success especially if you see how the people who are not using the caps and how much hair they have (or haven't ) as a guide.
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Day 30 and no one but me and maybe my mother would see a difference in my hair, except for the lack of styling! That part is hard. Yay cold caps! Bought a wig just in case, not loving it, glad I won't have to wear it:)
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Since I couldn't color or highlight my hair during cold capping, I had the dark at the top, light at the ends look going on, but at least it was in style!
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