Cold Caps Users Past and Present, to Save Hair
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Berlin, what brand of caps did you use?
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I had hair regrowth on Taxol, mostly in the spots with bad cap coverage around the edges. I am still lightly shedding almost 13 weeks PFC, but have lots of regrowth everywhere.
Berlin42000, it's best to wash more often. The scalp needs to be cleansed of buildup or you will begin to trap chemo chemicals in the follicles and the oil/residue buildup isn't good for growth, etc. Wash every two to three days. (I'm sorry you ended up in the ICU! Hope you're doing better now!) You can also use a capful of apple cider vinegar mixed in to your shampoo to clarify the scalp (especially after having washed so infrequently). You may find you shed a bit more the first time, but that's due to not having the normal washing shed for some time. The length of time people shed differs. Some barely do at all. Some shed like crazy then abruptly stop. Some shed heavily at first then lightly for up to four months PFC. Hormones affect shedding. Worry affects it. Try to take it in stride. You will shed the oldest hair. The youngest and middle aged will be protected. It seems outrageous at first that you can lose so much and still look pretty normal, but you can. The program works. Just try to have faith and focus on the positive. (Easy to say when you're having one of those days I know, but it helps over the long run.) Also, if you've got thinning spots that are really bugging you, then try ordering some Toppik hair filler. It's a great product that helps fill in the sparser spots at the part/crown. And truly the illusion of thickness it creates helps take your mind off the shedding. Good luck!
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I used the penguin caps and had it professionally changed
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I am so frightened to wash...but I willl
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Berlin42000
PS A major health crisis that lands you in the ICU can also cause shedding. You've had a lot to deal with lately. And while we're all very good with the positive message, it's easier to take things in stride after you've had a good cry. Sometimes you just need one (or a few) and that makes it much easier to focus on the positive. Courage, sister.
^^^^^ I just read what happened after I posted this. I had a similar catastrophic thing happen many years ago (DIC when my daughter was born, lots of the same organ issues, etc). It's harsh. You'll get over the emotional shock, but it will take some time. Give yourself the time to heal. It's very hard to understand how much something like that shakes you up unless you've been through it---which makes it all the more important to be kind to yourself and let the process happen. Godspeed there. Paula
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Thanks a lot Paula....
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scarlett: may I know how much shredding do you have so far since 1st chemo?
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final chemo last week. I estimate I've lost about 20% of my hair so far. I had very thin hair to start. Lost some more with yesterday's hair wash. Usually I shed a bit more days18 -25 after chemo. Waiting to see what PFC loss will be. Frankly, the two inches of white roots are more concerning than the shedding!!
Caps went back in mail today. YAHOO! Kinda strange watching my 17 year old son and his friend load those boxes up in the car. It takes a village!!
Ps - kids could care less about grey hair, but are very happy' that I have any hair at all! I've noticed their friends look visibly relieved when they see I still have hair! My house is a revolving door for teenage boys, all who know about my treatment. It has a been a relief to see their relief!!
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Scarlett152…, my cancer center has asked me to consider speaking to their board about capping (they were formerly either neutral or against it) and the biggest thing I want to address is that it's not just about a woman and her hair. It's about the ripple effect that keeping our hair has on family and friends and all of our feelings of well-being. The entire experience is so much less fraught with the negative baggage that cancer brings with it when the stigma of baldness is removed. I've had the exact same experience with my family and friends who know about treatment. It's a huge boost to everyone's morale and I have to believe that has a positive effect on not only my health, but theirs as well (especially those closest to us). It's not just about a woman and her hair.
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berlin - wow. Sooooo sorry for what you went through. You are truly lucky to be alive. Chemo is no joke, that is for sure. For some, the consequences can be severe. And others sail through. "Unluck" of the draw is what I call it. I had a very difficult time with TCH, and I was petrified of ending up in the ICU because my white count went extremely low each round. I was lucky - it never happened to me.
HUGS!
Regarding your hair loss, none of us really can know exactly how much you've lost, and how the factors of all the stress and meds in the ICU and your concurrent dx of Addisons may affect your results. My best advice? It is what it is. You may be fine and the shedding will slow, or it may continue and you lose more than would be expected. Either way, you are alive. Try to ease your emotional suffering by accepting that you can't control what will happen. There is a great peace that comes with just accepting what comes in life. You will deal with whatever the outcome is, and you will be fine!
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You ladies are all wonderful and I appreciate your comments! xoxo
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Is it normal that my scalp is hurting (when I touch it or lay down)? I just started shedding.
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Berlin, it can last until a month after your last chemo or longer, but it goes it spurts. Some days you may get a lot of shedding, other days, none. Be sure not to do a lot with it. Letting it hang--no pulling back into ponytails--is the best thing to do.
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Hey Scarlett, GO BEARS! I wish I would have thought of adding a goldenbear for a photo op. I used a warm blue and gold blanket, and had my treatments in Berkeley. Finished in December and had plenty of hair still. Keep at it, ladies. It is worth it!
Jeni
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thanks Jeni! Roll on You BEARS
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Hi!! I am now 6 weeks past my last Chemo of TC. I AM NOT SEEING ANY REGROWTH!!! I'm starting to wonder if I will. I read that some people have white roots. You can cover them with hair powder. Brush it on. You can buy on Amazon. I have also read that some peoples hair comes in the same color. I am taking a supplement called hair volume. It naturally keeps the hair from turning grey. I wonder If its that working?! I know my hair is growing, I just do not see REGROWTH!! ???????????
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beatcancer4life, It can take 4-6 weeks to start to regrow. It seems to happen suddenly. But that's because the hair is downy at first and grows a bit slowly. Give it another few weeks and you'll start to see it. It's hard to be patient now that it's over, but it will come.
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has anyone thrown up while doing caps?
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Not me. Did it happen to you, Alibeths?
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yes!!! Makes me so nauseous
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Sorry to hear that, Alibeths.
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thanks for all the pointers. It is not30 days post chemo and it seems the shedding although still occuring is not as bad and as much as it was for 10 days... It has thinned to about 40% of what I had I would guess.... I am just adding a little hairpiece to my hair when I go out....
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Thank you pch!! It's funny I worry over it. I sometimes wonder what I'll do when my hair normal again!! It really is a nice distraction when you think of it. Lol.
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Alibeths, I have a friend (not on this site) who threw up once doing caps (and kept soldiering on, braveheart!). But it didn't happen every time. Try to hang in there and not dreadfully anticipate if you can. It could have been a one-time thing. (And if you're not taking some kind of tranquilizer like Klonopin or something, maybe your doc will prescribe it. That may help you feel calmer and help with the nausea.)
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Alibeths, I have a friend (not on this site) who threw up once doing caps (and kept soldiering on, braveheart!). But it didn't happen every time. Try to hang in there and not dreadfully anticipate if you can. It could have been a one-time thing. (And if you're not taking some kind of tranquilizer like Klonopin or something, maybe your doc will prescribe it. That may help you feel calmer and help with the nausea.)
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beatcancer4life, you'll have ridiculous cowlicks that stick straight up (and if you have long hair give you a nice 60s style bouf at the crown) to worry about---or crack up about. Then the silly shaggy intermittent bangs. You'll have plenty to amuse you going forward. No worries.
I'm now focused on when I can cover my Eddie Munster streak. Three months PFC. (I met up with a friend who knew about the C but not about about the capping who I hadn't seen in over a year. Her response? P, what is UP with that GRAY? I'm all, Dude, I'm just lucky to have hair. Funny.)
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Hi,
I will be starting ACT chemo with 4 rounds of AC & 4 of taxol. Has anyone used the cold caps with success with ACT? I've heard mixed reviews. I will start chemo on July 28th & plan on giving the caps a try.
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Good Morning, Ladies! I have just completed my second round of TC, and am using the Penguin Cold Caps. However, I find that I have a considerable amount of shedding in the nape of my neck and around my ears. I wonder if this is due to the intense night time hot flashes that I have, and that those are the areas of my head that are pressed against my pillow at night. Any suggestions? I have a gel pillow to help keep cool, but I think I need to do something else. I am getting bald spots in the nape of my neck and around the sides of my head as well. I am 25 days past my first TC treatment.
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Jeannine - I understand the nape and above the ear bald spots are the result of the caps not fitting tightly over these spots. It seems to be a normal development many women encountered.
Kbandjb1 - I use Penguin caps when I was on ACT dose dense chemo in 2014. It was very stressful as I wasn't especially confident it would work and shed continually. At the end of chemo I had a very thin spot on top but was able to disguise it with a scarf folded and worn like a headband. My hair looked terrible but it was mine and I made those around me a believer. The condition of what was left was pretty terrible so once it stopped shedding, I opted to go for a very short cut to remove as much damage as possible. It worked for me and I am glad I used the caps. Like you I was concerned as so many before seemed to have poor results.
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