Cold Caps Users Past and Present, to Save Hair
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Day 15 post chemo 1. Had #2 on Friday. My head is itchy and I'm getting so paranoid about when the shedding will start. I haven't had any yet. I feel some relief that all of the gals who started chemo when I did are mostly balding now and I still have hair but the waiting is killing me. I have nightmares where I wake up and all the hair at the top of my head is gone but I still have the rest of my long hair. Lol. Not a good visual. I need a pep talk again ladies!
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SockMonkey, We have all been there, believe me! Just keep following the Penguin protocol and slowly but surely, you will find yourself worrying less and less. You will even start feeling confident that the caps will truly work for you.
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Hope that is amazing! Yay for you!
I just ordered my caps - treatment starts next week. I was told I need to use the caps for 6-7 hours post chemo because I have thick hair and because I will be on FEC D. I haven't read about anyone else who has needed to wear them this long post infustion. Has anyone else heard of this? I am really worried that it will be too hard to keep the caps on for so long in such cold.
Can anyone shed some light? Or at least make me feel better?! I'm very nervous.
thanks!
curly
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Curly - ativan and an electric blanket are a must! It will be a long day but it's worth it!!
Congrats Hope!!
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Day 16 post chemo 1: Let the shedding begin! I had a client meeting today so I reserved my sacred hair wash for them. Washed my hair in the tub like my mom did when I was little - leaned back and used a big cup to pour cool water on my scalp. Probably shed a tiny bit more than usual but when I drained my tub, I realized that I lost most of the "rest" of my non-head hair. Lol. Rest assured, I cleaned my tub. I found this awesome detangler. It's called Marrakesh. Works great at unsnarling my wet dreads. Used a wet brush to comb out. Probably shed 3x more than normal BUT I haven't washed my hair in 5 days. And whoever said that the hairs trail off taking a friend or two with them was so right!
I'm staying the course! Two chemos down, 6 to go. Only 81 more days of this crap!
I'm really amused that I now schedule in my hair washing to be timed with my social schedule: client meeting = hair wash, date=hair wash, dinner with girlfriends = stinky head.
And on an even more positive note: my tumor is still shrinking with the neo chemo!!! It was the size of a plum or peach pit. 5 days ago my (very hot, but unfortunately married) MO was astonished that it was half the size and now, it's maybe olive sized. Woohoo! Actually a bit excited about chemo now. Hope you all are doing well!
Jody0 -
Go Jody! Glad to hear your good news...for those who start chemo after surgery you always wonder if it actually does anything so hearing your story helps me a lot. Glad to hear you are keeping a positive spirit about the shedding, too...you're doing great!
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Jody, Your description, "Sacred hair wash" made me laugh out loud!
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Yay Jodi! Awesome! How long is the total time you have to wear the caps for the day? I start next Thurs. Just talked to the dry ice guy to get info and bought the coolers. The dry ice guy thinks 80 lbs of dry ice is too much and also suggests pellets would be better and easier to use than slabs. Does anyone have advice on this?
thanks!
curly
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Curly, my protocol is 50 minutes during Pre-chemo, all during chemo, and 4 hours after. My caps are supposed to be -35 too. I've heard they changed the AC protocol to increase success because it was the least successful in trials. It's a pain in the behind that day, but if you make it past the first few minutes, you can make it till the end. I'm single and don't have family in town so I have to recruit helpers every time but they've actually made it fun. I have a chemo suitcase I roll in every time with my electric blanket, moleskin, 2 liters of water, animal crackers, apple sauce, the trashiest magazines I can find, and my laptop. We made moleskin mustaches last week and every single chemo nurse wanted one!
Curly, have you asked your hospital if they would be willing to accept a donated freezer? The Repunzel Project raises money to donate them to chemo units. Also, try and do your bloodwork and get your MO to order the chemo the day before. It saves hours.0 -
Jody, you made me laugh re: the moustaches! I needed the giggle!
The Rapunzel project doesn't work with Canada - they say they are too small to do so. The nurse now seems to be semi positive, so let's see. Tx for the tip re: snacks - I was thinking that. I, too, am single, with 2 young kids. I have recruited my best friend and so thankful for him. I will also have rotating family members (hopefully), so I am hoping this will work. I am daunted by the timeframe to wear them and feeling stressed about the whole thing, but just hoping this works. Seems so expensive too...buying coolers, dry ice, the electric blanket, then the caps. Whew! This thing better work!
How are you feeling, other than the cold cap part?
xo
curly
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Two more things for your chemo bag: infrared thermometer and gloves to knead the caps right out of the fridge. Day of chemo: great until about 6 hours in. I've learned the hard way to resist the Chipotle my friends got for lunch and eat bland. I get super sleepy from the Benadryl that night. I hate steroids so my MO is tapering me off now so I'm not wired that night. I also take an Ativan Pre-chemo and take a klonopin that night before bed. Since I'm basically a non-steroid girl, I feel worn out on day 2, 70% day 3 and 90% day 4. I like doing chemo on Fridays so I can sleep my chemo away on the weekends. I have felt 100% every other day and have mostly kept up my running. I actually think the Neulasta kicks my ass more than the chemo. Even with Claritin I get bad bone aches.
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Curly, I hope someone who used coolers will pop in here to reply to your dry ice question, but I seem to recall 100 pounds being pretty standard. With the length of time you have to do the caps after the end of chemo, I think you should start with 100 pounds and then adjust for subsequent treatments. I don't know about the slabs vs. pellets. I haven't heard of anyone else doing caps for 6 to 7 hours after chemo. By the end of my 4 hours I was just tired and ready to go home, not particularly cold or anything. Will you be staying at your infusion center the whole time or will you take off for home and finish up your caps there? I had a freezer in my facility so I stayed there the whole time, which was fine. For me it was pretty much 8:30 a.m. to 4 p.m. My facility closes at 5 p.m. so we would have had to get out if not finished by then - but it was never a problem. Have they told you how long it will take to get the FEC? Are there pre-meds with that combo?
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curly, there is a girl on here with a website full of great information. www.penguincoldcap.net/
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Curly, my husband said its best to get 20 lbs pellets and put those on the bottom and then you'll want the rest in slabs (ask them to be wrapped in brown paper so easier to work with) and layer those between the cap boxes...then you'll take 2-4 of the slabs and kind of drop them on the ground to break them up and tuck those pieces into any open areas. He thinks if you got all pellets that they may start to clump together and it could become a problem...and you will have a lot of cap changes so you don't want to jeopardize the temperature...you're right it is a lot of work, but it is worth it you just have to stick to it and keep your goal in mind. I was going crazy the few days before thinking this is all just too much but in the end once I set my mind to it and got my team trained up it was just only forward motion from there...you can do it!
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Laura-thanks for the mention! I should have the website up and running again sometime next week.
Curly- Definately get 100 lbs. of dry ice. I get slabs, put them in Hefty 2 1/2 gallon zip bags and break them up. It's a lot of work but I think the ice lasts longer this way. You'll find putting the ice in Hefty bags very helpful-it prevents you from having to dig through ice and also kind of provides a handle when you're moving stuff around inside the coolers. I get the bags at Target. I don't know if they have those stores in Canada...Don't forget the cotton gloves and eye protection.
TXSock Monkey-Love the moustache idea!
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We used pellets in Hefty bags - a 4 lb. bag on the bottom of each cooler and surrounded by 2 lb. bags. 72 lbs. was plenty and our dry ice supplier let us bring the remainder (about 40%) back the next day for a refund.
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I used a combination of pellets and blocks. I had 2 coolers and put blocks at the bottom and inbetween caps. Put the pellets in zip loc bags, double bagged with about 2 inches unzipped so they dont explode. I alternated the openings so the pellets would not fall out. We used the pellet bags to pack inbetween and to pull out if the cap was not cold enough at the end of the day. They were easier to manipulate. My blocks were already in plastic bags from the store. The HEB store here did not charge for the ice the first 3 times because the supplier did not charge them when they found out why I needed it. I only paid the last time so it averaged out about $25 a time. The blocks did not dissipate much during the day but the pellets started to a little. They never stuck together and were always loose and crumbly but I think the combo worked best for me. 80 pounds of blocks and 20 pounds of pellets divided in two. Good luck.
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I posted here a few days ago discouraged because my oncologist had never heard of cold caps and I was looking for someone in the Philadelphia area who had successfully used the treatment. I have a happy update. Yesterday, while meeting with my surgeon for a follow up, he asked me if I was familar with cold cap therapy. He had a patient who had successfully used the treatment and suggested I speak with her. I wanted to hug the man! She lives near me and was happy to talk. So in about three weeks I'll be joining the penguin parade, nervous but hopeful I'll save my hair. I'll need a lot of cyber hand holding.
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jc254, we are all here for you!
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Jc254, I'm so glad you found support in your area!
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JC - Yay! Bring on the penguin parade! So glad you have a local support!!! We will hold your hand through this!!! You CAN do it!
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Hand me some smelling salts, I think I am going to faint! A surgeon who knew about Cold Caps? You have found a gem.
Best of luck throughout your treatment, and with cold caps, you will keep your hair.
Be sure to ice your fingernails and toenails during Taxotere if you are given it, so that they do not suffer damage (discoloration, thickening or complete loss) and so you do not get neuropathy (nerve damage). My surgeon still keeps looking at my hands and nails when I see her and asking about them. I iced and they are fine.
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Hi all - I checking in to fret a bit. I am 12 days past 3rd neo chemo (TCX4) - last one is next week. First let me say that I am so grateful to the Caps for not being bald. And for UCSF which so supports Caps and has freezers and knowledgeable docs.
But I am worried about the last dose coming up as I have shed quite a bit and lost 40-50%. Most people say they can't tell, but I think they are being nice because seriously, my hair looks like something out of Tales from the Crypt. I normally straighten and blowdry my thick curly hair - so this thin scraggly look is new. Lost some length too as the nape of neck hair in the back didn't make it. Not to mention the gray which I cover using Colormark sticks. For thick hair, the gel bands are key. I use them each time now, throughout the process - and refreeze them in a plastic bag as soon as one comes off ( there are only 4 gel bands total) . Didn't use them the first time - and my Caps were not measuring cold enough the first time either. But I don't think that's why I am shedding so much because it didn't start in a major way until after 2nd time. Seems to have fallen out mostly around the edges, temples, aournd ears and along nape. Some patches on top that I can cover by moving pieces over them.
Did any of you shed half your hair? Does it stop anytime soon? How soon before you can detect regrowth?
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ecarol: I also had very thick hair past my shoulders. I finished Jan 7 with 4 rounds of TC. I shed exactly in the same places...temples, nape , around ears but not really much on top. I lost length also. Everyone is different but I am 9 weeks PFC and still shed at washing, which may be normal shedding. I probably lost 50 % total although I get the same thing...no one can notice. My hair is coming back at temples and ears where I can pull it behind my ears now and could probably pull up if I wanted to because there is covering at nape. I do not expect the back and thickness to be back for 6-9 mos at least. I use the colormark but not planning to color at the 3 mos mark and hold off as long as I can. Good luck. I too was surprised at the amount of hair loss but need to remember what hair I DO have, not the hair that is gone!
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I wish there was a good way to measure the loss...I really think although everyone is different, it feels like a lot more than it may be in reality because it's thinner, dirtier and stringier and I can't use all my volumizing tricks. I've seen people post that the caps worked even though they lost '85%' of their hair and it just seem like so much. My husband reminded me that if the average head has 100,000 hairs if I lost half already it would be 50,000...while I've picked up a lot of hairs all over the place, I think he's right it was nowhere near that many. That makes me feel more confident about what I have to 'spare' in the coming weeks. I have shed a lot, mostly above the ears are very thin, the rest just doesn't look as good to me as it used to...I've been estimating that it's a 20% loss but again can't imagine if I counted it all up that I've seen 20,000 hairs...maybe we feel the percentage is skewed a bit on the patchier areas which are probably high % and the overall isn't that bad...
Bottom line, it's working to good degrees for all of us and we just have to keep it in perspective! Carol with one more round to go I think you'll do great...I just finished last week and am seeing a bit more shed this week, but less than after round 2, so I've focused on new growth now, it's got to be starting soon!
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ecarol - Try not to worry. I also fretted about the seemingly large amount of hair I had lost through shedding, although my shedding was overall and not specific to any particular places. After finishing chemo, I realized that my hair, even through I had been washing it regularly, simply wasn't entirely clean because of the way we have to treat it so delicately - no rubbing or massaging the scalp, and using only cold or cool water. It was limp and dank and I too looked like something from the Crypt which was demoralizing.
So, I did some sleuthing online and discovered that Nioxin shampoos are very effective at thoroughly cleaning scalp and hair. I bought bottles of Nioxin Shampoo and Conditioner #4 for Chemically Treated, Visibly Thinning Hair and they worked miraculously. I found them at TJ Max, of all places.
I let the suds sit on my head to work their magic for a while and let the conditioner sit as well before rinsing. It definitely looked much cleaner, shinier and fuller after blow drying it on cool. However, it took another shampoo or two to really get it immaculate as I think there was a lot of buildup to remove. Once it was truly clean I realized that I actually had a lot more hair than I had thought I did, which was a happy discovery.
About that time I decided to go have my hair trimmed - I had trimmed the ends several times myself during chemo. After explaining about cold caps and chemo, I asked my hairdresser what could be done to even out my color and cover all my new grey without using regular chemicals. She said a "glaze" was the gentlest process and I have to say it made a world of difference. I asked that only cool water be used and that my hair be handled extraordinarily gently. I even brought my own shampoo and conditioner and a dryer with a cool setting. Everyone was very careful and very kind and it turned out well. I waited until four months PFC to color it properly and return to my "Natural Blonde" state again
. re: regrowth As all of us probably do, I watched my scalp like a hawk for signs of new hair regrowing from all the follicles that had shed. The funny part was, I missed them. It wasn't until about two months past final chemo, when I was beginning to wonder if they would regrow at all, that I accidentally noticed what looked like a dense 1/2" shadow from my scalp up along a lock I had lifted straight up to search along its base of for baby hairs. While I didn't find any tiny, just emerging hairs what I did find was fabulous. That shadow was actually part of an army of new hair coming up all over my head. It has now grown to about 4" eight months PFC. Not a soul knows I went through chemo unless I tell them, and even then, judging by their faces, some do not believe me when they look at my hair.
My hair is not as thick and straight as it was, but the thickness is fast returning with the length of the new hair. The new hair does have a bit of a wave which is new for me, but I am so grateful to have kept most of my long hair and not gone bald that it doesn't matter. As the new hair grows in length I am hoping the gentle chemo waves will relax on their own. I can brush them out gently as I blow dry to get my hair pretty straight. I also have been training a fringe of thick bangs that has grown down across my forehead to part to the sides as it gets longer as I am not a bangs type of girl. I am gradually getting back to looking like me again and that is such a nice feeling.
You will be fine.
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I am on Day 17 after using the cold caps and hoping for the best. I have yet to have anything but normal shedding at this point and was excited until I read through this discussion board and realized I still have several days to go before I know if they worked. However, I am probably not being as careful with the care of my hair as some. I only wash twice a week and only wear a ponytail (with a non-pulling band) if I have to go out in public, but I have used warm water. The shampoo has been alochol free, but I have gently cleaned my roots as well as using a little coniditioner but not on the roots. I guess I feel like why have the hair if it's just going to look awful the entire time?
I have peeling on the front/top of my scalp, where the roots of my bangs are. I guess based on the reading that will fall out so I may be in the market for a lot of headbands. I am still at a wait and see point and wake up each morning checking out my pillow.
The pain of the caps was excruciating at times (some caps more than others), but the pain only lasted for about 2 minutes with each cap change upon reflection. So if I still have my hair before my next treatment, I will continue the process. Next treatment is 6 days away.
For now, I am enjoying the fact that I have hair and my kids can remain in denial about my news. Hair loss=reality.
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jquire, if you're not already doing so, I highly recommend changing your part with each cap change, or holding your hair and bangs straight back when doing a cap change. That way the normal part area won't get frostnip. I realize this may have already happened due to your peeling at the roots of your bangs, but for future treatments you can prevent any damage from getting worse. I did have some flaking (I wouldn't really call it peeling) but I was able to get the big flakes out without taking any hair with them. I think my flaking may have been accumulated skin secretions (that sounds gross...) due to the hair washing protocol.
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jquire - please do not use warm water to wash your hair. If you are unable to stand cold water, at least try for cool or tepid, but not warm. I found I could bend over the tub from outside of it and wash my hair in the shower with pretty cold water without getting the rest of me wet and chilled. I do so hate to be cold. I have also used the sprayer in the kitchen sink as well as as hand held sprayer in my bathtub to wash my hair using cold water.
At day 17 you are just about to start shedding. My hospital told be to expect it to begin between the 18th and 24th day, mine started about the 21st or 22nd. If you still have complete coverage by the 28th day (4 weeks after your first chemo), and I am sure you will, you will be keeping it as long as you keep using the cold caps according to their protocol.
Your hair is at its most fragile time right now. It is when people who are not using cold caps lose all of their hair and go bald. Do not do anything to stress your hair or pull on your hair or you could lose much more than you would have. I'd even skip the bands for a few weeks if I were you. Cold caps are wonderful, but they do require adherence to certain proven guidelines to be successful. I ignored the one about not coloring hair in the weeks before using them and paid a stiff price for doing so when my hair started breaking off months later. There are reasons for each thing we are told to do. It is best to follow the rules if you want good results.
As for pain, are you taking some Tylenol 20 minutes before before starting? My nurse who has helped dozens of cold cap users recommended that I take 1 Tylenol plus 1 Advil as she said the combination seemed to help her patients more than two of either one of them.
I wish you good luck!
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I will try to wash my hair in the cooler water. I am starting to lose clumps of hair elsewhere, guess I didn't need laser hair removal after all. Still no shedding on my head (my pillow was free and clear this morning) but only on day 17. As far as pain, the first treatment I took Advil and an Adavant. I was ok until about the 4th cap, but my cap helpers had a hard time on that one and tugged a bit to get it on right. Next time I will probably try a pain pill as well as an Adavant! First treatment was going to be the worst I know because the length of the treatment was longer. I won't be in the caps as long as for the second treatment plus I will be halfway done with my treatment. I only have 4 TC treatments. I can do anything 4 times!
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