Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks guys for all of your encouragment on the exercising. I felt pretty horrible yesterday and I too had to kick myself to get out go for a run, but I feel soo much better today! It really helped me reading of all your stories of what you guys have been through and going through. One thing I've found is I thought it would be rough taking the cool showers on my hair with the cold caps, but with the hot flashes I'm having I'm now welcoming them! Take care everybody!
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Thanks for the encouragement Laura.
Lady Gray, sorry to hear you are having such a tough time. This whole thing stinks doesn't it!?
Jil1, sounds like we are starting at the same time. Good luck and keep up the exercising!
I found a couple natural hair dye sites. I don't know how their products are but there is a message board on one of them and testimonials and people seem to like them. One is Palette by Nature and the other is Act Naturals. These may have already been discussed but I figured just in case I would mention them.
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Hi, I'm day 16 of first chemo, when do you lose eyebrows and lashes? Have been washing my hair in the shower with cool water. I can't stand it being cold so cool is all I can stand. Have been putting on amazing oil which is for body and you can put it on your hair. It is very, very expensive but I'm worth it hehe. not been brushing or combing hair but use fingers and a very wide comb. Hair has stopped growing I think no re growth on my legs. Not looking forward to next chemo or cooling cap but hey it's only for a day. Is everyone happy with their cold caps?
Alison0 -
ali68, You may not ever lose your brows and lashes. I lost maybe 50% of my brows after my 4th or 5th treatment (6 TCH). My lashes just thinned. I never used cold water when I washed my hair, just slightly cool. I had my last chemo in Dec. and I can tell you that I am extremely happy with the cold caps. I kept probably 95% of my hair. I lost a little just over my ears where the cap didn't quite make it.
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Hi Laura, thanks for reply that is good news. I was thinking maybe the chemo wasn't working because I still have eyebrows & lashes. It's a bit of a sore subject this because lots of woman are not using cold cap and I feel you can't talk about it. Where are you with treatment are you having surgery?
Alison0 -
Ali I did not yave to shave legs much through chemo and for some time after I finished. I did not completely lose brows but they did thin and I had to use a pencil to fill them in. I just didnt touch them and was careful to gently blot them with a towel after showering and I avoided rubbing them with a towel after a shower. My lashes fell out about six weeks after chemo ended. I was using latisse and they were already growing in when they fell out. They grew in really fast and thick with latisse. I am VERY happy with cild caps. I took ativan on chemo days and the caps were not bad for me.
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Hi Mdg, thanks for info one thing my onco doesn't give anything before chemo, you guys are lucky.
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Hey ali68~
Saw your post in the other thread about not having to lose your hair if you do not want to...
Way to get the word out. I think it is important that this message gets out to others.
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Hi all - a note on washing hair in cool water. I really can't stand cold showers, so I have been washing my hair with the spray nozzle at the kichen sink. I tip my hair over and my daughter helps me to wet the hair, pour the diluted shampoo on, etc. To be honest, I've given up showering altogether in favor of baths, since I don't have to shave at all, and eliminates the danger of getting warm water near my head. I've been using Tasmanian Lavender shampoo from Sea Chi. For those of you interested, they're having a 30% sale through Feb 4...you have to put in the promo word BEAUTIFUL to get the discount.
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I would wash my hair over the bath but it really hurts my neck an shoulders. I got shampoo which is ph nurtural. How often do u wash your hair? When I had chemo I was told to leave for two days. Have done tat and now wash it every second day. Very odd not blow drying my hair so it goes wavy and a bit flat.
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Ang7 have you finished all your treatment now?
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Ali, I wash twice per week, and not for 48 hours before and after treatments. If I'm particularly sweaty after working out, I'll rinse in cool water. I comb gently with a wide toothed comb, and then let air dry. My hair also dries wavy and flat, not particularly flattering, but I'm happy to have all of my hair!
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Why do you think it's best not to wash 48 hrs before chemo?
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Ali - I asked for ativan. Can you ask your med onc? Tell him it is uncomfortable with the caps and see if he can provide some to you just for chemo days or in your pre-med drip?
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Have just been on the Paxman web site and it says wash hair 24 or 48hrs before and after chemo.
We are so lucky in England that most hospitals have these machines free to Cancer patients.0 -
Hi mdg, I did ask because I saw lots of woman had used it. My onco said (have to say she is fab I like her) no because she wanted me to be very alert because the chemo was so dangerous. Saying if it leaked onto my skin or if I got pain then the chemo would have to stop. All I know is the nurse wore two sets of gloves and was so careful when pushing chemo into me. When she finished with each of chemo she had to put them in thick bags and someone took them away.
It just tells you how bad chemo is.0 -
ali68, I had my surgery back in June. I am done with chemo and am in the middle of radiation. I am not familiar with Paxman, but Penguin Cold Caps only recommends washing your hair once or twice a week. I thought that would be hard, but chemo made my hair so dry, only once or twice a week was just fine. You are very fortunate that the hospitals in England supply the cold caps. They are very expensive to rent, which is what I did, but I must say, worth every penny! Also most oncologists here have never heard of them.
Also, I always took a warm shower, just turned it cooler at the end to wash my hair, and tried not to let the cooler water get on the rest of me.
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ali68~
Yes, I am actually 2 years out from treatment...
I just cannot help but answer some of those ladies who are so afraid to lose their hair.
I had very good results with the Penguin Cold Caps and I know my oncologist would not steer me wrong.
It sounds like the Cold Caps are better received in England?
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ali68, you are lucky to be in England where the cold caps (and freezers) are already part of the cancer center. The Dignicap was just in clinical study at UCSF, is that similar to Paxman? For PCCs, you should only wash your hair once/week (and gently! with as little agitation as possible) throughout the process. You can use cool or tepid water, it doesn't have to be cold; I used cold on my head because cold stimulates hair growth.
I swam every day throughout treatment, and rinsed my head in cold water before/after each swim. So even though I only washed once/week, my hair got a rinse every day. The first ten days of the process it felt oily and then the drying effects of chemo quickly set in. Towards the end I'd rub a bit of conditioner in the ends of my hair even when it wasn't a shampoo day.
My washing routine was: get in the warm shower but not get my head wet. Then, when my body was warmed up, turn the water to cold, step away from the cold but tilt my head backwards into the stream of cold water. Use a small amount of shampoo and work up a lather in my hands, then gently stroke it through my hair being careful not to pull at the roots, but also be sure to clean the scalp -- it too is detoxing chemo. Rinse. Apply conditioner. Then, turn water back to warm and wash my body while the conditioner deep-conditions. Then, step out of the water, turn to cold, and lean my head into the water to rinse the conditioner gently but thoroughly, using a wide-tooth pick-style comb to untangle gently. Then, warm water body rinse. I gently wrapped my hair in a towel but otherwise air-dried (which is what I always do). I tried to coordinate any big dates with my hairwash days but honestly, with a daily rinse, my hair looked good throughout. Most important, I was glowing throughout! I had almost no SEs from chemo whatsoever and my bloodwork stayed completely normal throughout. I'm convinced the very structured detoxing used by the PCC protocol (water flushing, exercise) helps us detox more quickly and have fewer or less severe SEs.
I'm approaching my 2-year mark, and am ecstatic at my PCC experience. I'm eternally grateful for whatever forces got me googling the night I learned I'd need to go through chemo. It was pure dumb luck that I stumbled across the PCC website. I kept about 90% of my hair, the biggest loss being at the nape of the neck and a little above the ears, but nothing noticeable.
Susan
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sebm9, For me, it was pure luck as well (we called it divine intervention). My daughter was googling to see if I could take Herceptin without chemo, and stumbled upon Rapunzel's website. I still choke up when I think of the hope I felt that day when I read about the cold caps. We had certainly never heard of cold cap therapy before that day. It is hard to believe that something so incredible is just not out there.0
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Pure luck for me also...
I was searching BC.org for ways to save your hair and it sent me to this Cold Cap Users thread.
Amazing. It made it so much easier to do things with my 4 kids and not "appear sick."
Hugs to you all. We are a special group of ladies. I just wish it was an option for everyone.
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Also pure luck for me... I just had gotten the news from my MO that I needed chemo, and was horrified at the thought of losing my hair. I googled "hair loss chemotherapy" and found the PCC web site. Now I'm determined to get the word out. It will be a fantastic day when this technology is available at all chemo centers in the U.S. and covered by insurance. I am SO HAPPY that I've used the caps!
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marie3, we are pretty close on starting our chemo, you're a week ahead of me. You must be about ready for your next treatment so good luck!! Let me know how you make out with it
ali68, you are about a week ahead of me too, so good luck with your 2nd round as well. I also took Extra Strength Tylenol before I went in for treatment. I didn't have any pain with the caps, just a little "brain freeze" for a few minutes on the first one.
It was a purely serendipity experience on how I heard about the caps. My friend is a flight attendent who was working a flight to London. She started a conversation with one of the passengers who happened to be Frank Fronda, the inventer of the caps. The timing was perfect because I had recently had my bilateral mastectomy and was was trying to mentally get my head around loosing my hair to chemo. Whew!!
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Wow jil1~
Reading how your friend just happened to meet Frank gave me the chills
Thinking of all you ladies going through chemo now...
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Hi everyone, the crown on my head is so sore does that mean I'm going to lose My hair tomorrow morning when I wake up. I know I'm being silly but I can't lose my hair it's the only thing making me get through this.
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I was fortunate to read about them on the internet then find out my med onc office had caps and a freezer because they participated in some of the studies. Odd thing was despite having the caps and freezer my med onc barely mentioned it. They still don't really say much about it or encourage women to try them. When I went through chemo there was only 1 other gal using them at the same time on a different day. I did meet one lady in the office with a full head of hair that used them a few months before me. I hope one day it is offered and discussed just like all of our other treatment options. Even if insurance doesn't cover the full cost - it would be nice if they would just cover the same amout as they would for a wig. I had wig coverage but never got one but was told cold caps were not covered. Part of me wanted to get the rx for a wig and go get one anyway and then donate it to an organization for women that can't afford wigs. It would have been my way of saying "screw you", but I didn't do it. Why am I so honest and moral??? LOL! Little by little we can all get the word out.
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I am 8 weeks PFC and just lost my bottom lashes on the right eye. I lost the bottom left a few weeks ago. Also looks like top lashes are really thinning. Anyone else lose their lashes several weeks after? How long until they start to grow back?
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I just had my second chemo yesterday. I stuck an Aleve in my shirt pocket to take on the drive in and then forgot all about it until I took it off that night and it fell on the floor. So now twice I have started the cold caps without anything. I did feel uncomfortable for the first 5 minutes for the first few but stuck it out. Also, though the caps had been on ice for three hours, they were right on temp when my husband took the first one out. He had to put the second back and find another as it wasn't yet the right temp. The first time they had been on dry ice 4 hours and took about 5 min. to thaw so we will make sure to get them in the coolers earlier. I also have to get the ice the day before I got an extra 5 lbs. as opposed to an extra 10 lbs. the last time to make up for loss so that could play a role. My nurse must have read up a bit on the caps since I was last in and asked if I had any sores on my scalp. She said if I got any she would have to reccomend I stop using them as the sores could get infected! Although my husband did a good job getting the caps on tight, they were a bit different in the fit each time. I wish they were a little longer in the back. I have a small head but still would have liked a couple extra inches. I started shedding around day 17 of the first chemo, hope it stops soon!
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I lost lashes 7 weeks PFC. I used latisse. THey came in thick and quick!
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Hi marie, I haven't used any med before using the cooling cap and yes it is very cold. I'm on day 19 I have notice my hair coming out and it freaked me out. I think after day 21 it's not so bad fingers crossed. my second chemo is this Friday I'm not looking forward to it one bit. I have been booked in for 12 midday so lets hope I get seen on time. Did the chemo go through anyone straight away like as soon as the chemo was in me I needed the loo.
Mdg, can I get latisse in England and do you use it while having chemo?0
