Cold Caps Users Past and Present, to Save Hair
Comments
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My main reason to avoid aluminum DO at the present time, is because Frank (creator of Penguin Cold Caps) said aluminum is a binding agent and can bind the chemo drugs to the hair folicles. He also believes it can cause cancer. Right now I am more worried about keeping my hair folicles healthy.
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I don't know if you have seen this photo. Each picture is about 1 week growth.
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Hi Laura5: I tried a bunch of natural deodorants from the store, with no luck, and finally had more luck online at Bubble and Bee Organics:
http://www.bubbleandbee.com/servlet/the-"Special-Blend"-Deodorants/Categories
The truly herbal spray worked during chemo (think that type is on a different page on the site), but after, I found I had to change to the Spearmint/Tea Tree one for it to remain effective (body chemistry changed I guess). The nice thing about B&B is they will send you new ones free of charge until you find one that works for you. They ship fast too. But most of these natural ones are deodorants, NOT anti-perspirants--so you will still sweat--just will smell better! Good luck.
Almost eight mo. post TCx4 for me, had my second real color a week ago with one permanent base color and 3 semi-perms for highlights--it looks so much better! Starting to get compliments on my hair again--hang in there ladies! Lucky
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Ralston that is quite a photo...
I think my hair is growing faster than that..
LivCar you have worked hard to keep your hair. Hopefully that will show in robust new growth. I am rooting for you.0 -
Hi gals,
I finished my last DDAC nine days ago and starting to feel more human. Interestingly, not as heavy shedding this round.
I am bald on top with thinner hair at the back and sides, but t's mostly there. I used a silk scarf on top to protect from the cap last two treatments.
I am also not having much flaking or crusting this time. But, like livcar,, sometimes a flake lifts up with hair attached....
I have to wear a wig to work, but for more casual things I can wear a scarf or bandana.
I just started biotin and have been taking silica.
I am thinking about adding Rogaine to my plan, from what I can tell, it does help.... Anyone else trying this?0 -
Lucky,
Thank you for the information and for the link to the deodorants on the website. Hopefully one of them will work for me!
Laura
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Brbca1babe - Congratulations! Finishing AC is a big accomplishment!!!! I am so looking foward to my last AC. My hair thinned a lot this weekend and I will probably need to protect my scalp for my next infusion, did you use any kind of silk scarf or a special one?
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Laura5: I was active throughout chemo and remain very physically active (swim, hike daily, plus weight lifting, martial arts, golf in addition). I usually spend 2.5-3 hours/day doing physically active things. It made me feel great during chemo and rads; now that I'm 1 year into tamoxifen, it is downright necessary to fight off the effects.
For antiperspirant, after trying many non-aluminums I settled on Trader Joe's -- aluminum free with cotton fibers. I usually have to apply it a few times/day, but it is more effective than others. Nothing helps when I'm hot flashing, however (and for some reason I haven't flashed in about 10 days! yay...)
Do NOT use deod with aluminum while going through chemo and using caps. The aluminum is absorbed into the blood stream and creates a bonding agent at the hair follicle, and can trap chemo there, and cause your hair to fall out and also be a factor in permanent hair loss. It is also linked to BC, so avoid it from here on.
For the women doing DD treatments and ACT treatments: chemo is much harsher on your hair, and the caps don't have quite the same results, but keep focussed on the need to protect your hair follicles from the long-term damaging effects of chemo. It starts growing back fast, and thick, and the cold will speed it all along. It's fantastic that you are finishing chemo with hair on your head! Amazing.
Cheers,
Susan
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Hola,
On Sunday, Sept. 4 I'll take the field for the Oakland A's on Strike Out Breast Cancer Day. I'm one of the survivors (I hate that word -- I prefer conqueror) invited on field for the pre-game ceremony. What an honor! Proceeds benefit the Carol Ann Read Breast Cancer Center, where I had some of my treatment. Last time I was on the field, Nick Swisher kissed me! So yeah, I'm psyched! :-)
Susan
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I had my first Chemo today and also my first cold cap use. my GOODNESS were they cold, I cried a bit with the first one wondering If I could ever get through it.
Once of the nurses where I was getting my treatment said very rudely to me, why are you wearing that thing on your head" I said so hopefully I wont lose my hair, she says"they don't work" and leaves it at that.
RUDE MUCH to the poor cancer patient sitting in the chair, what a biatch!
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Susan:
Thank you for your suggestion. I checked out their website but it doesn't appear you can order online. I think there is one where my daughter lives. Lucky suggested Bubble and Bee Organics so I am hopefull that one of these will work for me.
Thanks,
Laura
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Laura5- I been using "Jason- Tea Tree Melaleuca" deodorant stick. For many years, It is the only one that had work for me during summer I apply twice a day. And I get it at a health food store, or on the commissary at a military base.
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Bella76-I cried a lot on my 1st. Treatment. The 2nd treatment since you already know what to expect will be better.
Don't listen to negative nurses. The caps works. When I was getting my treatment nobody mention anything about my hair, they ignore me, but 3weeks PFC I went back for my herceptin and finally they told me "I guess the caps works really good".
I am happy to have hair even though is has thin a lot.
Love,
Tiki0 -
Hi everyone: 12 weeks PFC today. Shedding still there but slowing down. Hair thin but still have it so I'm really pleased. I still have the craddle cap and a few little scabs but nothing major. I don't have any bald spots either just thin!
Need to go read back and see all the posts.
This is my last week of RADS - this week is the boost to the scar. I've had minimal issues from RADS with just a bit of 'sunburn'. Vitamin "E" and Aloe were all I needed.
Good luck everyone!
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Bella76 - During my first infusion the pain and the nausea I felt while wearing the caps was so horrible that the "evil" inside me came out. I promise that I think most nurses are afraid of me by now. Since the first infusion I didn't allow them to talk, make jokes, comments, well I didn't even want to see them. I was in so much pain that I could not even talk, but just the way I look at them was enough!!! I feel really guilty and I told my husband that I will have to apologize with each one of them at the end, but for the moment this "horrible" person that I become is the boss and they respect my decision and they happily accommodate to all my needs.
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Hi Fellow Cappers:
I am now 4 weeks PFC and experiencing cradle cap/dermatitis very bad. My scalp is continually itchy and flaky and if I scratch (which it is hard not to) strands of hair stuck together fall out with the flakes. I almost need to clarify my scalp to release this dead skin and buildup etc so the new hair can grow and flourish. I am sure situation this is compounding my PFC hair loss.
Does anyone know what to do for relief of this problem? I plan on washing more frequently when the sheding subsides, but each wash renders too much hair at the moment.
It is frustrating as my scalp needs a good scrub and I know that will be hard on the fragile follicles.
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DebRox -I am going to call Frank to ask him how to handle this situation according "protocol". I have eczema, so I normally wash my hair once a week with T-Gel, but I am afraid that since I stopped using it my scalp is a little scaly and crusty. Cradle cap usually resolves on its own within a few months, but self-care measures, such as washing our scalp daily with a mild shampoo, to help loosen and remove the cradle cap scales is something we can't do. Definitely try to avoid constant scratching, because it can cause the skin to split, leaving it prone to infection.
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Debrox, the flakes are hard. I had them early on and scratched and lost hair.
I tried some diluted california baby tea tree shampoo for cradle cap at one point and I think it helped.
My take on it is that if you have those flakes you are going to inevitably lose hair there, not scratching will leave the patch on longer, but my guess is it has got to come off like you mention.
My only suggestion would be to try an organic cradle cap shampoo and see if that helps.0 -
Thanks Tiki,
Can it be purchased at a store, or online only?
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Laura5- I buy Jason deodorant at a health food store, but this is their web.
Www.jason-natural.com
1-877-JASON-010 -
Ralston and brcababe: thanks for the input. Tmi but little crusty scabs is a good description along with flakes. Anyways I would love to hear franks response.
Now due to chemo my hair is on the dry side. Overall I just want the scalp to be healthy so the hair that was lost can grow and the hair/follicles preserved to be able to breathe and be healthy.
For those finished chemo, I was researching hair growth and read that inversion promotes hair growth. The extra blood to the scalp stimulates the follicles. Something to try that doesn't hurt.0 -
Thank you for the website info Tiki!
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Does anyone remember the movie The Breakfast Club? The Ally Sheedy character scratching her head with dandruff falling like snowflakes?
Well that is what my scalp is like if I scratch - it could snow in August.
Sorry that my attempt in humor in all of this.
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LivCar-
I have a very thin layer of hair also- just barely covers my head and doesn't cover my ears when down. It has been very depressing for me and I have thought I should just cut it all off and start over- but then I think about the 4000.00 + dollars and all the trouble and energy spent and that seems like a very bad idea. It gets me through another day with what I call 'crap hair'. Luckily, the areas above my ears and at hairline are coming in where I lost it and that makes me look a bit more full when the wind blows but, not much. It is stull helpful to remember what someone said on here- a bad hair day is better than a no hair day. I am grateful for that. I DO wish more had been disclosed about the way our hair may respond...they did say that thinner and lighter hair was harder to keep- makes sense but GEESH! I have so little hair that it really looks more like a spider web coviering me- and I keep losing more all the time- now two months past the last chemo. SOmetimes a slight loss but the other day, during a shampoo, I lost some lengths in chunks. THat was scary. I try to eat more protein when that happens. Not sure what else to do. It was better today...every day is different with this it seems- but I reallly hate those days when it is bad for days on end.
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Ha ha DebRox- I understand- I had that for about a month post. Wonderful, isn't it? I liked your joke.
Hang in there! (so to speak!)
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Bella76 I had a nurse like that also for one of my chemos and I was in tears when she walked out. BUT I did muster enough to tell her that even if I lose it (she siad even if it does work during chemo, I will lose it all afterwards) , I will have less time without hair by using the caps, and also, I told her, at this point, I am looking at it as an experiment.
Even though I have lost A LOT of hair, I still have coverage and it is two months past my last chemo (six rounds over four months of taxotere and cytoxine). I still look normal to those who don't know and people are astounded when I tell them I had chemo just two months ago. I get depressed by the loss of hair and the condition of my hair, but in fact, I am grateful for what I do have.
Good luck- if it was that important to you, as it was to those of us on this site, then you are doing the right thing and don't let the negatives get you down!! Just hold your head (with hair) high and be proud of what the process leaves you with. It is quite a journey and soon you will be on the other side of it.
Hang in there!!
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Yizbieta- how many weeks PFC are you?
TIKI0 -
Elizabeth are you noticing new growth to counteract the loss?
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DebRox - Love the Breakfast Club analogy! LOL! Snow in August. I never got the flakes at all...I guess we are all different.
Bella - sorry the nurse it s a biatch. I was also told by my chemo nurse that the caps don't work well.....I showed her my hair on my last visit. Love rubbing it in their face. Most people were negative about me doing caps...they kept saying it would not work. WHat shocked me most is the fact that my Med Onc's office had the freezers and the caps there for me to use but yet told me they rarely work. They are so uneducated.......even my med onc said they have a 50% success rate....which is wrong.
I am now 16 weeks PFC and still shedding like a freak.......did anyone else shed this long???? When will this end? I lost more hair PFC than during chemo. I am trying to be patient but I am sick of looking gross and having hair fall out all the time. I can't wear it down because I feel it fall on my arms all day and then I obsesses with each hair that falls. If I wear it up, I only have hairs fall out when I take the clip out.....less stress than dealing with it all day long. How long did everyone else continue to shed PFC???
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mdg: I shed that long, yes. You're nearly at the end. Mine just suddenly stopped shedding; then I knew it was time for WARM WATER. Man did that feel good. You are almost there!
To all those whose nurses make cracks: these are not nurses who should work with cancer patients (or any patients) and you should report them to the nurse manager or Patient Advocate at your cancer center. It is NOT appropriate or professional behavior by any standard. You deserve only positive energy and support for your battle. Don't feel you have to be tough with them personally; that is the job of the nurse manager and/or patient advocate, and they will definitely want to know if one of their patients is receiving unprofessional treatment. The real fun will be when you walk in for your next treatment with a full head of hair, and that nurse eats crow. Hand her a fork and napkin for the occasion!.
Susan
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