Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Everyone:
I am new to the site and have learned a lot from reading all the posts over the past few days. I have some questions for you veterans of the Penguin Cold Cap.
I am going into my 3rd round of AC on May 18 and around day 20 from my first treatment I started to shed a lot of strands of hair. At this rate since, I am going to be in treatment through mid-August I can't imagine it wouldn't all fall out.
When you ladies talk about shedding, how much falls out each day and does it happen continuously until however long after the last treatment you are safe? In three days I stuffed a sandwich bag full of hair and that is just hair I've lost in the house (probaly 1/3 of the overall loss). Granted my hair is long and it was wound around on itself, but still it seems like a lot, I don't have any bald patches and its not really noticable to an observer (yet).
Also, wondering if anyone has any suggestions about preventing "matting." The ends of my hair are kind of curly so instead of the loose strands falling out and hitting the floor, they seem to drop down until they hit an area where the hair starts to curl and they can't get past and that forms a big mat of hair like when you "rat" your hair. I don't want to keep brushing these out as it must pull on the scalp.
I saw that someone posted that the prickly feeling is from the follicles dying so that explains that. I think I am also being stabbed by my fairly coarse strands. My scalp is also itchy and its hard to lie down to sleep. The only thing that helped was freezing my head. Heat seems to aggrevate the itchy, prickly feeling. The hair loss coincided with having a fever for two days. Anyone think that heat is a problem. I know a lot of people exercise and sweat during chemo... so?
Ugh, getting through Summer won't be easy! Or i should take up the Victorian art of making hair jewelry.
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Thanks Susan for your kind words...
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mla88 - hey there ... we're at about the same place with treatment. i go for 3rd AC next week. i have some shedding. Nothing too alarming yet. i haven't noticed any 'other' hair loss ... so i'm a bit worried. Keep me posted!
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julia1969 - i hear ya on the 'pink' thing. If anything, all they do is scare us! All that 'survivor' talk makes me worry that i have something to survive. How about pancreatic, lymphona ... the really tough cancers. It's to the point of being glamorized.
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chey - Hi - yes, i remember our chat. Thanks for that! I'm day 19 and just noticing some shedding - nothing too alarming. Do you remember when your shedding started? i know Frank says 21 days is the marker. I'd like to know when i can feel like i have a green light on the PCCs!
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Thanks everyone for info on shampoo. Im going shopping this week for supplements and shampoo.
Also when I spoke about hair stimulation, I did not mean stimulating the scalp via brushing or washing or things like that , I was referring to what Frank talked about - using the caps every 3 days for 2 hours to stimulate hair growth in between chemo treatments.
So I was wondering if anyone used the cold caps in between chemos to stimulate hair growth.
Susan: Thanks for the wonderful tips. I have to print them out and keep them on my fridge.
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Hi Everyone:
I am new to the site and have learned a lot from reading all the posts over the past few days. I have some questions for you veterans of the Penguin Cold Cap.
I am going into my 3rd round of AC on May 18 and around day 20 from my first treatment I started to shed a lot of strands of hair. At this rate since, I am going to be in treatment through mid-August I can't imagine it wouldn't all fall out.
When you ladies talk about shedding, how much falls out each day and does it happen continuously until however long after the last treatment you are safe? In three days I stuffed a sandwich bag full of hair and that is just hair I've lost in the house (probaly 1/3 of the overall loss). Granted my hair is long and it was wound around on itself, but still it seems like a lot, I don't have any bald patches and its not really noticable to an observer (yet).
Also, wondering if anyone has any suggestions about preventing "matting." The ends of my hair are kind of curly so instead of the loose strands falling out and hitting the floor, they seem to drop down until they hit an area where the hair starts to curl and they can't get past and that forms a big mat of hair like when you "rat" your hair. I don't want to keep brushing these out as it must pull on the scalp.
I saw that someone posted that the prickly feeling is from the follicles dying so that explains that. I think I am also being stabbed by my fairly coarse strands. My scalp is also itchy and its hard to lie down to sleep. The only thing that helped was freezing my head. Heat seems to aggrevate the itchy, prickly feeling. The hair loss coincided with having a fever for two days. Anyone think that heat is a problem. I know a lot of people exercise and sweat during chemo... so?
Ugh, getting through Summer won't be easy! Or i should take up the Victorian art of making hair jewelry.
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DebRox - i haven't been using the caps in between treatments. I just feel like my scalp gets so roughed-up that it needs a break. i plan to use them on hot days in the summer. i figure it's not mandatory since some of the girls aren't renting caps, but using ones provided by hospitals. Hope that helps!
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Livcaryes, really 18 days it would have been gone, 21 day marker is is the forsure thing, I believe your light is green!!! hehehe,
remember shedding is normal and it will coutinue through out your entire chemo... the third AC was the worst for me as far as fatigue, i still had no side effects but the fatigue hit me at # 3, just go with it, dont fight it, let the chemo do its job!!! DebRox, yes i did, it does help if you can stand it, I believe it was Susan who swam everyday in cold water,with a swimcap on. i think she thought this really helped!!
I hate pinki tell everone we dont like it!!! and for me, PLEASE my sisters dont take this wrong bu,t i dont like being called a survivor yet, i feel im "surviving" at this point, call me a survivor in 10 years..
mla88, hello you, please don't stress, your doing great! the shedding is normal, it will continue through all your chemo, I did AC x4 and Taxol X12, 16 treatments and i made it!! are you doing dose dense Taxol? all the itchy and tingle is part of the game, i got mattes as well, i used a spray on conditioner on my hair, just not at roots, the purpose of not shampooing and conditioning is too keep the chemicals out of your roots, what your going to shed is what your going to shed, no stopping it, you don't want to pull on it though, i comb from the bottom up while holding it in a pony with my hands, baby it!!! i rinsed it everyday in cold water while in the shower, and everyday i used spray conditioner, not on the roots!!! i went back and forth between natural, Lanza, and, Matrix, Lanza is made from human hair keratin protien, (what your hair is made of), not animal hair keratin protien..
stick to the same routine whem chemo is done. remember baby your hair...serenitywisdom, thank you, i did gain about 12 lb towards the end, dont know why, it comes off easy though, try not to worry about the se's, remember dont fight it! let the chemo do its job, listen to your body and dont think ahead
easier said then done, i remember... your almost done, YAY!!! love Chey
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I am 11 weeks PFC. I still experience 'shedding'. With that said I was not aware of how much hair I lost daily pre treatment. I did not baby my hair pre treatment. Just ripped a brush through it wet or dry. (what was I thinking). Today I was at a dept store and saw my hair in a 3 way mirror. I could see back, sides, front all at once and my thought was 'I have a lot of hair' Before looking in the mirror II had just counted 20 strands that I pulled off my clothes...that did not count what came out in the morning combing. 40 to 100 strands is 'normal for someone not undergoing treatment. My sides are now filled in and I wear my hair in a French twist etc and the sides look fine.
As for the matting with the curls - it helped me to wear it up or in pigtails or ponytail. When my hair is down it gets slightly pulled against my clothes when I turn my head or if I sit back and lean forward...so wearing it up meant the hair that was shedding didn't have a chance to tangle..
A note on SE I took ALA along w glautamine for nueropathy. I put the frozen peas on top of socks instead of directly on bare feet - I am losing 2 toenails..so I would suggest put the frozen peas on bare toes if u can stand it.
I did exercise during treatment ..ran daily, my head did sweat. In the shower I would gently pour a pitcher of cold water over my head after the run. Both to cool my head off and rinse. I do not think the sweating made me lose any more hair..
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Sashette - thanks for the post about working out and sweating. i've been worried about the summer months outside with my kids. So much paranoia about getting our heads hot - i appreciate that info. thanks!
Chey - thanks!! i'll let you know how the next week goes.I'm feeling very optimistic!
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If anyone has not yet started chemo, I have 8 sets of gelpads to ice hands and feet that I will send free to the first person who sends me a Private Message. Anything to help. I used them for TCX4 and my nails are all still doing great. Lucky60
Update: The gelpads have been taken now. I also took L-glutamine and B-6 for neuropathy; seemed to work, none except a little on the ball of one foot which happened before I started the glutamine and icing. Lucky
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4 versus six seems to be part of a training the docs get- mine said some on the east coast say 4 is enough but he then said he was trained at UCLA and the thought there is that 6 is best. Go figure! He did say that if I did not tolerate well by four I would get out of the six, though, most likely, and so far, I am doing okay so I guess it is six for me...Just had my number four on Friday (yes, the 13th), and so far, nothing too different as far as side effects...
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serenitywisdom - I ballooned up during chemo and it was all water retention.! I gained about 25 pounds, most of it coming on after treatment #2. The IV fluids I was given during the lumpectomy also added a lot of swelling. I was given lasix for a couple of weeks, but my doctor said with diuretics you lose minerals/vitamins as well as fluids so once the water retention started moving, I was off the diuretics. This week I just hit my pre-chemo weight, so it was about 7 months and I wasn't doing any serious dieting.
4 vs. 6 topic - I had 4 TC and about the time I was starting chemo I saw a study posted in the research section of this site that supported 4 treatments. Don't remember any of the details.
Colleen
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WOW- I did not know you could get nueropathy with four treatments. I am not looking forward to that...I asked my onc nurse about it on Friday (treatment number four of six for me) and she said no one gets that usually. I was shocked because I read it all over these pages that it could and probably would happen- eventually. She was pretty negative about lots of things, including telling me that the caps would only work until my last treatment and then I would lose my hair! but with the nueropathy, she said, if you haven't gotten it by now, you probably won't. I don;t think she knew what she was talking about!! I have had great nurses up to now...also, my blood count (CA 15-30) went up- ten points since pre surgery- it was 7 points up from 'normal' before surgery and now it is ten points beyond that, rising slowly- any ideas on that from anyone??
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Hey yizbieta~
You look great in your avatar!!!
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re: Latisse. THe ladies that used it.... did you use it twice a day, or once a day?
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Thanks, but what is an avatar? Is that another name for the caps? I have no idea and am not too sharp with chemo brain and all that!!
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livcar, i used it once a day, at nite, i really made sure my eyebrows were covered...
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ArleneA where are you? i hope everything is ok? let us know,im a bit worried. i know this one was a tough one.. im thinking of you
love Chey
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I started using Latisse again but only at night. My brows are thinning and lashes are normal (so far). Finished chemo 5/4 after TC X 4. I don't like how the Latisse makes my eyes feel....goopy, stinging, odd....don't know that I will continue it. I will give it a few more days. Eyes are watering horribly too...could be from the chemo or allergies too. Who knows.....I am using it on brows and lashes when I put it on at night.
On another note, washed hair yesterday. Still shedding more than before starting chemo, but less than the previous few washes (I think). I can't wait to color roots...almost 1 1/2 inches new roots! Glad hair is growing but it's kind getting ugly! Thank God for Colormark.................sigh....
I also started drying hair with the dryer on cool with a air diffuser. This makes my hair more wavy and gives it more body than the flat/frizzy thing I have been doing. Just sharing....
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I started using Latisse again but only at night. My brows are thinning and lashes are normal (so far). Finished chemo 5/4 after TC X 4. I don't like how the Latisse makes my eyes feel....goopy, stinging, odd....don't know that I will continue it. I will give it a few more days. Eyes are watering horribly too...could be from the chemo or allergies too. Who knows.....I am using it on brows and lashes when I put it on at night.
On another note, washed hair yesterday. Still shedding more than before starting chemo, but less than the previous few washes (I think). I can't wait to color roots...almost 1 1/2 inches new roots! Glad hair is growing but it's kind getting ugly! Thank God for Colormark.................sigh....
I also started drying hair with the dryer on cool with a air diffuser. This makes my hair more wavy and gives it more body than the flat/frizzy thing I have been doing. Just sharing....
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I'm sorry~
Your avatar is your picture...
You look great in the Caps!
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I wanted to thank those of you who suggested the Claritin for bone pain. I have had NONE. I actually had to ask my doc about it....Also for any of you having severe acid reflux or heartburn, Prilosec works wonders!!!!
Arlene, I hope your last tx went well as we have not heard from you. Mine was much better as I went for fluids for two days after. I wound up in the hospital last time so I think this one will go much better. Just very tired but the SE were much more controlled.
We still had a hard time getting the sides of the caps cold enough so we shall see how much more hair I lose on the temples and sides.
I am also a survivor of non-hodgkins lymphoma I had 16 years ago!!! I had AC as part of my treatment so for those of you taking these drugs, my heart is very strong and I have still not had any long term side effects. I run and do spin classes several times a week. I hope this gives you encouragement....
Chris
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Hi Ladies: Thanks for asking about me. I'm ok, no nausea and minor bone pain...but really, really tired and just yucky feeling so I've been resting and NO appetite but hubby keeps bringing me soup. I think today should be the end of the worst and on the uptick tomorrow. I really need to wash my hair because it has been 11 days. I'll put a chair in the shower and see how that works.
Thanks Ladies! Arlene
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yizbieta--I hate to break this too you, but I had neuropthy and got it immediately in both my hands and feet (I didn't ice them during chemo, 4 TC @ 3 weeks). I was treated at USC/Norris and my onc is doing a clinical trial on the use of L-Carnitine to treat neuropathy. I didn't fit the profile to be in the study, but he said the dose that women in trial took was 1,000 mg, 3 x a day. Can't say very well how it worked. When I finished chemo and stopped taking L-Carnitine the neuropathy was worse. So I have been back on it. I'm finished chemo around Labor Day and a couple of weeks ago I noticed that my feet seemed better. My hands got back to normal probably 2 months ago.
Colleen
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I did TC x 4 and did ice fingers and toes turing taxotere and for 15 minutes before and after. I had no neuropathy at all.
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Hi all. I did get nueropathy, hit hard last treatment. Dr said 6 months - what is going to resolve will resolve by then. Maybe I should add carnitine... I did ice hands and feet.
Anyone else lose a fingernail or toenail? I am wondering if they grow back ok.
I used Latisse twice a day. I think 8 weeks PFC I lost my lashes and most of my brows. I had lashes and brows during. I am still using it.0 -
Sashette: I keep praying not to lose lashes...brows are thinning....I am done with chemo so I wonder when they will start growing. I have not lost any nails yet...when did you lose them? Mine look completely normal now but I just finished chemo on 5/4.....I hope nails hang on too.....
Did anyone not lose brows, lashes, nails???
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Mdg - toenail fell off last night. I noticed the base of the nail was not attached, maybe a week ago? I have another toenail that is separated at base and will be coming off soon.. The others look ok.
My brows started growing in maybe a week ago.. It was as if they filled in overnight. Lashes are coming in slower.
Chemo the gift that keeps on giving : )
Every day I am so grateful for my hair....soooo glad I did cold caps.0
