Cold Caps Users Past and Present, to Save Hair
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I have never even heard of anyone having scalp mets, though I guess it does happen. I just know that with all the other side effects, being able to save my hair was a life saver for me. It annoys me that some of these doctors won't look at the studies and see how cold capping works. Maybe for some of them it's too much of a disruption. I'm sure having me and my husband lug in two coolers for each chemo treatment and change caps while the chemo was going on might have been a little disrupting, but my oncologist was very supportive. In fact, I heard she's going to participate in a cold capping trial to try to get the process approved by the FDA. She saw the success I had and is now recommending it to her patients. There's no reason for us to walk around bald as a "badge" of having had cancer. Cold capping works and as you can see, I'm a huge advocate!
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anyone taking biotin during chemo? If yes, may I know how many mcg? thanks.
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Hi ladies. I cold capped for my first infusion of TC. I'm about 13 days past my first infusion and my hair has started falling out...and it seems like quite a bit. My question is, will my hair consistently fall out at this rate until I'm done with my treatment? Or can I expect a huge fall out after each infusion where it slows down in between? I accidentally pulled a little of my hair while putting groceries away and it ripped a bunch out which was pretty unnerving. I know hairloss is to be expected, I'm just trying to gauge how much to expect.
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alice12 - I didn't take Biotin during chemo because my MO didn't allow it. I've been taking Biotin since then, at 5,000 mcg once a day. I don't have any idea if it's doing any good or not...I seem to be losing more hair now (2-1/2 years PFC) than I did during chemo! (Although I lost essentially no hair during chemo on weekly Taxol + Herceptin.)
SoCalGrl - I didn't have TC; I think shedding patterns on TC vary, based on what I've read in this thread. Someone else who did TC will undoubtedly chime in soon. Meanwhile, I highly recommend reading as much as you can of this thread - lots of helpful hints and reassurances.
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My MO, was very impressed with the cold capping results. I think he didn't actually believe it would work,
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Hiya all!
Starting chemo on 9/9 at UCSF. The girl in charge of the program there said she will be there on day 1 to show my cappers how it's done. Is that enough?? I want to make sure they are done right!
Also- anyone use coconut oil or argan oil to help fight frizzy hair?? Think a small amount is ok after shampoo and spray in conditioner??
Thanks!
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There is certainly a lot of misinformation out there on cold capping. I commented on a Breast Cancer page that featured a video of cold capping and so many women made nasty comments about how you need to worry about the cancer not the hair, that it doesn't work, and that losing hair shows that chemo is working, etc. Ugh!
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Regarding the cold capping and scalp, I was treated at the University of Penn. My MO was the one who told me about cold capping .... if it wasn't for her, I would have been bald, miserable along with all the other SE. Thanks everyone for the statistics and research. I did a lot of research on my own before making the decision to cold cap. I saved my hair and glad I did it
Also, everyone at Univ of Penn was surprised each time I walked in for my appointments with hair. YAY for cold capping! Cancer sucks! Kim0 -
Kim, who was your Dr? I saw a dr there too.
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starsarestars I would have your cappers watch the PCC video and practice with you first if you have access to your own caps. Part of the success of this is your feel for how much contact there is between the cap and your scalp. Sometimes you need to make quick adjustments after a cap change to avoid losing hair at the crown for instance. It's a couple of extra seconds, but worth it and you are the only one who can feel that. (Make sure you have as much contact as possible in the corners on either side of your crown. Also, make sure they wipe the condensation off the inside of the cap before putting it on you to avoid getting frostbite.)
So practice first with your friends, and then they can get last-minute pointers/instruction from the girl in charge of the program. You're so lucky to be in a supportive environment like that.
I'm just about five months PFC. It works! Good luck!
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Star,
yes, watch the video and practice with the caps first. My husband capped me for 12 weeks, now of course he thinks he half owns my hair ; )..anyway the caps get rather hard once frozen and the stiffness sometimes needs a bit of pounding, so be prepared, putting frozen caps on can be a bit trickier than unfrozen ones. Also get an infra red temp gun (abt 14 bucks at Amazon) husband got one after the first session when the caps were so cold out of the medical freezer that I got a bit of frost bite...but once he could take their temp before putting them on my head it never happened again.
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With my first session I hired the helper that they recommended, and she met us there. Her fee was $350 for the entire day and she taught my husband how to cap for the next rounds of chemo. My husband was so nervous he didn't want to mess it up so he was thankful that she was there. They also mentioned to me that in the "how to" video, it looks a lot easier because the caps aren't frozen. The woman who helped us also brought a rolling pin to help flatten the caps once they are frozen and it helped a lot.
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Good advice from SoCal. Also, knead the cap once it's on your head, especially in those pesky corners to help mold it to the right shape. You'll get a feel after a while, but kneading them once they're on does help.
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A rolling pin works great for flattening the frozen caps and squishing the gel around evenly.
I used my mom's antique rolling pin, which was handed down from my grandmother. I must have watched my mama roll out biscuits with that thing a million times as a little girl, never dreaming I'd be watching my sister using the same kitchen implement several decades later - on a hi-tech frozen cap for my hair. Funny! You just never can predict some of the twists that life hands you.
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Oh Wildflower! That's really touching--in the "wheels have now officially come off" way things are sometimes. Glad your mama's rolling pin was there with you. Crazy life.
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Warning: use of this tool during capping can result in temporary side effects, including a post-chemo hankering for home made southern biscuits! LOL!
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That's a cute story Wildflower! Funny about those things in life.
Star, I used Argan or Moroccan Oil after every shampoo day during capping following leave-in conditioner spray. I just applied it to the lengths being careful not to get it on my scalp and my hair was fine. It really helped with the frizzies. I usually followed the oil with some type of conditioning or styling cream to help hold style as my hair air dried. My hair was super dry during chemo so much so that even using all of those leave-in products, it never became greasy between washes.
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Thank you everyone for the great advice! I will look into the infrared temp gun at Amazon Sula. I've already got silk pillow cases in my cart so guess it's time to start purchasing! The kneading totally makes sense. I think I'll use the rolling pin trick too Wildflower. My Grammy recently passed and I inherited her old rolling pin (she went through BC also) so I'm sure she would have loved to be part of helping me. Angiel I'm so glad that using a bit of Moroccan oil worked for you. My hair already soaks that stuff up living in a dry climate. I am so lucky to have great girlfriends that all want to help me. I need to get them started watching the Pcc you tube video
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Feeling discouraged this morning. I ran my fingers through my hair and a HUGE amount came out. I'd guess I've lost almost 1/3 of my hair already and I've only had 1 infusion.
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Hang in there SoCal. It often seems like quite a bit more than it actually is. What are the numbers again, ladies? To keep it in perspective, the average head has +/- 100,000 hairs. So you really can lose quite a bit of hair and still have quite a bit left. Also, if you're losing hair around the nape of the neck, above the ears, and sideburns, that's a cap fit issue. Not much to do about it. Many of us lose that hair, which can easily be hidden by your other hair. Of course it seems like it's coming out in handfuls when it's happening because it's shedding fast and not protected like the rest of your hair. But the caps work. Keep going and try not to focus on it (which is easy to say, I know, but it's possible). You'll be ok.
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Starsarestars, I have a brand new infrared thermometer you can have if you definitely decide to cold cap - just pm me and we'll work out how to get it to you. It was a replacement for a defective one that quit working, and I only used it once.
SoCalGrl, I finished my 4 rounds of chemo 2 weeks ago, and so far, the greatest amount of shedding happened sometime between infusions one and two. And yes, most of it was right at nape of my neck and above the ears. I also got thinner on the crown but no bare spots. The cytoxan and taxotere is one of the drug regimes that have more consistent success than some others, so don't lose heart! Make sure you mash the top of that cap down firmly on your head next time - I might have lost less hair in the top if I'd paid more attention there the first time around.
The rolling pin is a huge improvement over kneading by hand. It did a really good job of massaging the gel in all those little pockets on the sides of the caps.
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what a great idea!!! My husband went through a strong man act, flattening those caps for me, I never could have done that! I showed him the rolling pin idea..genius!
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SoCal, are you using Penguin Caps? It's hard to tell if the amount you're shedding is normal. Everyone's shedding pattern is so different. Hopefully your hair is thinning all over and not coming out in clumps. If the caps were cold enough and you had a fit tight to your head you should be fine. Hang in there.
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I will start Chemo in early October 2015 and plan to cold cap. Any thoughts on Penguin vs Chemo Cold Caps? I have been researching both on my own as my MO does not recommend it and has no experience with it. He is not opposed to cold capping, just is not a resource.
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A majority of us used Pengiun but there is probably someone on here that used the other one's. These ladies are a great resource so post here often! We are happy to guide you through this. What chemo will you have?
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try arctic cold caps. They are an awesome company that use the elastogels. Which is what chemo uses. Pm me if u have any questions.
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jc254 - I am using PCC. I had a helper the first time too so I was in experienced hands. I have very thick hair/semi-long hair and I had a feeling that even if I mashed the caps down I wasn't getting good contact. I also paid extra for the "headache" band (they labeled the box that way, lol) for extra coverage around the forehead and neck area.
I'm having TONS of hair falling out everyday. I can post a picture of the fallout but I don't want to discourage anyone else from trying. I think I'll try capping again for my second round to see if I can make it through with less shedding. I'm also contemplating dampening my scalp to get a good all around chill this time too.
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I had a 1.2 cm invasive ductal carcinoma, Stage 1, estrogen positive, Her2 neg, with an Oncotype dx score of 29. My surgery was in June and I have just finished 21 days of radiation. In early October I will start 4 TC treatments 3 weeks apart. I have been doing lots of research on both companies and Chemo Cold Caps provides the cooler, hand truck, etc...where Penguin does not. But I can't tell if thee is any significant difference in the caps themselves. Chemo's are a little colder as I recall.
Thanks for any input you can give me, and if anyone has done this at UW Hospital in Madison, WI, please contact me!
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MadisonMom, I just PM'd you. I'm in Madison.
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SoCal, wetting your head with PCC will give you frostbite, which also leads to additional hair loss.
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