Cold Caps Users Past and Present, to Save Hair
Comments
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Oh Susan: Happy to know there is an end to the wings.
My family thinks I'm a bit nuts with all my talk about BPA's, etc. but I just let them harrass me (playfully) as much as they want and they know it won't do them any good because I'll go on with my weird ways of trying to return to the basics and not this convenient life that has become the norm and causing us problems.
Take care everyone!
Arlene
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Arlene: that's the spirit, girl! You've got it.
For anybody about to start the caps, or curious about them, PM or send me your email address and I'll email back my writeup of the caps (I used the freezer method; my cancer center did not have a freezer and I was the first user there), the haircare protocol, and survival tips -- for chemo and for hair.
LivCar: I know what you mean! This group has been fundamental to my cancer treatment, not just cold caps but all the subsequent stages of treatment too.
Susan
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All you gals who work out on a regualr basis: Did you worry about sweating alot and getting your head "hot" when you worked out? I don't want to give up the gym, but trying everything to make the hair hold on! I'm on day 13 after chemo #1 and getting nervous. Thanks, Anne
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Anne: That was a concern for me but I also worried about the hair getting sweaty and matted which can make it fall out too when it gets matted...I did a good run after Chemo #1 and that was what made it mat and in getting the mats out, I pulled a BIG percentage of my hair out. Others may have different opinions but that is what I found. After that I modified my exercise program (but I was living in NV at the tiime and it was warm.
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As I mentioned earlier, each week I'm on a mission to replace my plastics. Today I got rid of my tupperware measuring cups and replaced with staiinless. Next will be all the utensils; spatulas, etc. Goodbye BPA's to the best of my ability!
My daughter is here from So Cal with my first grandchild and I had mentioned to her to make sure all bottles are BPA free....no problem in Cali since that is all they allow. I just have to get it through to her the importance of getting rid of plastics!
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Anne: I exercised everyday through chemo. My gym is pretty ventilated. I just continued to blot sweat with my towel. My hair did not mat. I wore it in a loose ponytail or gently clipped up while I worked out.
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Me too....exercise kept me sane... I wore a Nike light baseball cap...I would wet my hair in cold water and then workout or run...no issues with matting or hair falling out.... Anne the first chemo is the most nerve wracking.....you will get through it!
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Anne and all: I knew you'd get other opinions as we are all so different. Running just ddn't work for me during chemo but I stuck to the treadmill and walking as best I could. You can find ways to exercise as it is so good for you!
You'll be just fine!
Arlene
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AnneDR: Exercise is one of the very best things you can do during chemo, and always! I did not worry about getting too hot. The body temp is 97 degrees, and it almost never gets that hot here in the bay area air temp, so I was not concerned. One of my main exercises is swimming, and the cold water 1 hour/day was actually terrific for hair retention (the equivalent of wearing a cap out of the freezer for a bit), and I rinsed before/after my swim each time. I also hiked, golfed, weight lifted, did martial arts...a good 3 hours of exercise a day. It is fabulous for detoxing the chemo and oxygenating red blood cells, and an excellent mood elevator. I'm convinced exercise was key to me having almost no SEs from chemo. I had no hair matting, and I did use a dab of conditioner post-swim each day for tangles.
For those who live in very hot climates, it's best to do vigorous outdoor exercise in the early morning or evening, and try to cool the scalp as soon afterward as possible.
Susan
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Hi Anne and everyone,
Exercise really did help me during chemo but it was a struggle. I would walk into the YMCA sore and achy and tired and I would push myself on the stairmaster or bike for about 20 minutes (this was about at my 2nd or 3rd chemo. What I found is that I acutally was less stiff and more energized after the exercise. I got more anemic as time went on but exercise still helped. Now I am just walking and doing yoga but I want to get back into a regular routine. For those in N. California, the YMCA has partnered with Stanford and offers free membership and free classes for cancer patients . It is about a 3 month program. Regarding sweating, I too was worried about the heat to my scalp from exercise. I think it helped to rinse my hair and head with cold water after exercizing. I did not shampoo, only rinsed with cold water.
BTW, I have greyish black wings next to my ears big time but luckily my longer hair covers them up. It is a real proof to people when I show them the difference of the wings and my other hair which I did not lose. I saw women with their mouths hanging open when I show them. Its a funny reaction to watch, especially the doctors and nurses.
Now if I can just get thru the upcoming mammogram, muga and seeing a cardiologist about the MUGA changes . My plastic surgeon will not do my tissue expander exchange and reduction until I get clearance from cardiologist. I guess it is better to be safe than sorry. I just hope my heart will not get any worse from the herceptin. I am now taking L carnitine and CoQ10 which are supposedly cardioprotective. Wish I had known about CoQ10 earlier when I was on chemo.
So far, I have decided not to do radiation. Being in the grey area is not fun! If I had just had a lumpectomy it would be a lot easier to decide to do radiation. Having had mastectomy and axillary node disection I really had to weigh risk benefit of radiaiton. The cold cap decision was so much easier.
Good luck and hugs to everyone.
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Thought I would chime in here with my experience. Finished Taxtoere and Cytoxin x 4 on August 18. Used Cold Caps. Started shedding hair after first chemo and kept in a baggie for a while, cringing every time I added more and saw how full it was. Then felt it too depressing and tossed it. While so much was lost, no one noticed. I had thin hair to begin with and yet still looked fine. Hair was mid/shorter length and I pretty much wore it back in a pony tail and wore a cute fedora all summer. Now two months past finishing chemo and still shedding unfortunately so my hair is actually thinner now then during the process but I have great hope that will stop soon. And when I tell someone about my bc, they are surprised since I have my hair. So thin as may be, I am thrilled that I have a nice head covering of hair still. Lost eyebrows and eyelashes 6 weeks post final chemo and started latisse on brows and lashes. Brows began growing back immediately and I have since stopped latisse there (don;t want long bushy eyeborws!!) and I have a tiny crop of black lashes coming in now. During treatment I washed hair once a week with Aubrey Honeysuckle shampoo, in the sink with cold water. I continue to do that now. Haven't colored as yet. Anyone know when shedding may stop for good? I have hope it is tomorrow!
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Serenity Wisdom: How long did it take before you noticed the new growth? I am 30 days post pcc and my hair is doing well. I lost most of my hair by my left ear. I can notice but most people can't. It does not help that i have big ears. It is scary to weigh the prors and cons of treatment. It sounds like you will decide what is best for you.
AnneDr. I worked out everyday during treatment in the heat of the summer. I wet my hair and wore a thin cap too. I rinsed with cold water after but i used conditioner to comb through my hair. I think hair type is a factor that is not acknowledged enough in the protocol. I have hair that becomes dry if I don't condition it and take are of it. I have fine, long curly hair. Before chemo, I only combed hair in shower with conditioner. I kept this practice during treatment but kept my product below my ears. I would have had hair breakage and major dryness if I hadn't. I think new comers with hair that is prone to tangles need to know that this protocol is not good for this hair type. I modified the directions to suit my hair type and kept between 80-90% of my hair. Also, my hair is not in bad shape now. Now that i am 30 days post pcc, I use a conditioner with keratin everyday and now and air dry. In a few weeks I am going to use my hair appliances. Good Luck!!!
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BakinLA: We are all so different as to when the shedding stops. I'm nearly 5 months PFC and it didn't stop until around 4 months PFC and the few long pieces are still shedding and I plan to chop those off in a few days and just have my little bob. So glad I did the ElastoGel caps....I may have lost all my length and it got thin but never bald. It sure is weird looking at old pictures because I had such thick, thick hair and I'm really not sure it will ever return to that thickness. But I have hair and what more can I ask! My daughter and her newborn (well 2 months old) are here with us (from So Cal) and I laugh that my granddaughter has as much hair as I do - not quite.
So loving having them here for a visit.0 -
Backinla: are you taking vitamins or supplements? Chemo can screw up the way you process vitamins and minerals. I took a lot of vitamins during( ONC said it was ok) and added iron shortly after treatment ended. Once added iron, my shedding seems to be less. Granted I am only 30 days PCC and I could still have a huge shed!!
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Bakinla....I shed for almost 6 months to the day...my last chemo was january 13th and went away for the 4th of July. This was when my shedding stopped and just now starting to shed normally... I hardly shed at all from July to now....so for me when it stopped it stopped! My hair grew 6 inches though...so the hair that stayed... 70%ish.. Kept on growing. now at 9 months PFC I feel I have MY hair back...I colored my hair at 5 weeks PFC with temporary non ammonia non peroxide dye.. It worked great with no ill effects...other than that I didn't wear hairspray or use gels etc for 6 months...and no warm water...just cold. Time will fly by...there will be days when your hair doesn't look great... But no one will be able to tell you thinned and before you know it you'll see sideburns and have these short hairs at the nape and you'll realize you lost a lot but you kept more!!
I still consider this my " home" site....the ladies on this site saved me many days from going off the ledge....I can only hope I can offer a little support and wisdom as new PCCs join and use the caps.0 -
Bakknia I was like lmflynn and I did not stop shedding until 5 months PFC. Most of my shedding was after I completed chemo. I did shed during chemo but it was much worse after. I have colored several times with ammonia free and peroxide free color since finishing chemo the first week of May. I colored the first time about a month PFC. I started using a hair dryer a few weeks ago and the flat iron a little on a low setting. I still only was about twice a week as my hair never gets greasy anymore. I did my first warm/hot wash a few weeks ago. I do wear one small set of clip in hair extensions to thicken the look of my long hair. Now it looks like my pre chemo hair again (with extensions in).
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Other than after Chemo #1, I too lost more hair after chemo than during. Pretty sad but have hair so no complaints. I don't color my hair but would like to but my daughter thinks I should leave the fragile hairs alone for a while longer.
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BackinLa I stopped shedding completely 8 weeks PFC. I used Aubrey Organics too. The first 4 weeks PFC were the worst shedding period of all.good luck and Hang in there.
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thanks all for your reponses. Soundslike everyone is slightly different but good to hear what others experience. The cold caps were a life saver for me as it sounds like they were for others here. So, with a few cute hats for the days I feel most thin and exposed, I am back in the swing of my life. Looking forward to seeing a crop of growth on my head tho!
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Hello fellow Cold Cap users. I was hoping for some feedback from the knowledgeable ladies on here. I just had my first chemo on 10/18, so I am on day 6 and I used the Penguin Caps according to instructions. (BTW, I am on Gemzar/Carboplatin and I haven't seen any other ladies on this regime discussing this topic who have used the caps. Also, my onc said my hair wouldn't fall out, just thinning. But I wanted to do what I could to prevent it in case.)
I have just washed my hair once and did not have any unusual shedding, but I am feeling some itching, tingling, and discomfort on my scalp. Pain would be too strong a description, but I am nervous that these sensations mean the hair is going to fall out. I had Taxotere/Cytoxan 3 1/2 years ago, and I did not use the caps, and I lost all my hair. Before it started to fall out, I did have scalp pain, so that is why I am nervous now. I have thick curly hair, and I normally use lots of conditioner, leave in treatments, and oil on my scalp. So right now I am using just a natural shampoo-diluted with water, and some diluted leave in conditioner on the ends so I can comb it out.
Has anyone experienced these types of sensations and kept their hair?
Thanks!!
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cylander, I will go for my 4th treatment tomorrow and I have also felt those sensations but still have my hair. I am sorry you are having to go through chemo again. Good luck to you!0
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I had some tingling and some discomfort...not pain but it felt like I had my hair in a pony tail that was too tight...does that make sense? It was like that off an on during chemo. I finished in May with my hair. It is thinner but looks normal to others. No one would ever know I had chemo.
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cylander~
Yes, I had those sensations during my chemo and I was still able to keep my hair with the Cold Caps. The strange thing for me is now, 2 years later, if I am out in the wind I get that tingling feeling again. I don't get it.
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Cylander- I had the same disconfort on my scalp several times and I still have a lot of hair. I am in my 17 week PFC still shedding but only a little bit.
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Thanks for all the replies ladies! It is reassuring. I hope I am as lucky as all of you. My scalp is itching as I write this! I think it could also be from the drying effects of the chemo and caps and then not using all the conditioner I usually use. I am going to miss my weekly essential oil scalp massages...: )
I have my second treatment tomorrow and I hope they can get the nausea meds right this time. I'm still queasy from last week. I had a much easier time on TC-you just never know how you're going to react to these drugs.
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Ladies- for the first time in my life I had to wax my face and arms. It is very depressing
. I have more body hair than I used to have. The only areas that I am fine its where I had laser. I am wondering if after I finish Tamoxifen, it will be back to normal.
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Do you think it is a symptom of the rapid regrowth after chemo? Is your hair growing fast too? It might not be permanent!
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okay ladies i have been looking at all my products, skin, makeup and hair scanning for parabens phthlates. I called Olay and their products contain parabens. I insisted they send me a refund! As long as you have the bottle and the Id number, you can get your money back. I have a shitload of expensive crap to go through and I will get a refund. Most of these companies have the breast cancer sign and it is all a crack a shit!!!!!! So far Clinique Youth Surge made the cut. If we all call and make a big deal maybe they will think twice before putting poison in our beauty products. Also, demand you money back. These companies could have ea silly contributed to BC!!!!!!!!!
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My head hair is growing but I never had body hair that I have to wax. I know that is one of the side effects of Tamoxifen
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soccergirl: amazing how many products have all the bad stuff in them. I gave away/threw away so much stuff.
Today I did it, I cut my hair so short. It was so darn scragley that I couldn't stand it any longer. It is beyond short but everyone likes it and it is really thick and curly (which it was before). Can't wait to have my length back. I miss it! I feel like a little boy but it does grow quickly.
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