Cold Caps Users Past and Present, to Save Hair
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I am 4 weeks PFC and completed 4 sessions of radiation. I shed alot after chemo TC #2. I used the caps between one and two but was afraid to get my hair tangled and pulled on after 2 so only used them on chemo day. This weekend going to use colormark to cover gray...I have about 1 1/2 inch growth on top of my head with dark roots and some gray. Underneath, where I shed behind the ears and nape my girlfriend checked and said it is about 1/4 to 1/2 inch growth but gray. When I would look at it I thought it was still bare but the color was deceiving.
Went to work and no one noticed....thought I had knee surgery again LOL. Hair is thinner and feels baby fine as compared to my thick coarse hair but I am thrilled. Hang in there newbies!
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Hi everyone your info is really appreciated. On Amazon there are cold caps from Elasto-gel chemotherapy hypothermia, does anyone know if there is a difference between Penguin and this company? Mix reviews on Amazon. Also, do I ask my oncologist right away if they are set up with the freezer? I'm having my first oncologist consult on Tuesday . Also. Do I do a final color treatment on my roots this weekend or forget it? Thx everyone. All your stories are really helping me.
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Welcome Shasha10! Penguin are far superior to Elastogel. Definately go with Penguin. Yes, ask your center right away if they have a freezer. If they do not, and they will permit a donated freezer from www.rapunzelproject.org , it will take a few weeks to get one there. Do not do a final treatment on your roots or get your hair cut, (slight trim is ok if needed.)
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Ok great thx so much
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amrdbit and hope49-- I think I am a week behind you on TC with cold caps. I've begun the big shed and am wondering how it is going for you. I will be eagerly watching your posts. I am also finding my head is itchy. Anyone else? It would just be my luck to learn that my kids have brought home lice (again)... Could you imagine!
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My head itches and I'm trying to ignore it. I'm only 9 days from the first treatment and I'm shedding already. I'm trying to ignore that too! I hope you don't have lice. That would be awful!
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Sasha10 - Do NOT color your hair before treatment!
Penguin advises against coloring for a month or so before chemo. I didn't take that warning seriously and lightened my roots six days before beginning chemotherapy. I really wish I had not. I ended up a few months later with a huge amount of breakage at the point where my colored hair met the new growth of natural colored hair. I now understand that it is important to have a healthy growth of natural hair at the scalp line as it is stronger and better able to withstand a hit by any lingering chemo chemicals than chemically treated hair.
While I never went bald thanks to using Penguin cold caps, I could clearly see a ball-like bulge on many of my hair shafts between the natural color and lightened color. Something bad happened there. As time went on many of those bulges snapped resulting in my losing a lot of my lightened hair which really thinned out the longer part.
I do not know which center you are using in NY, but I used NY Hospital's Weill Cornell Breast Center on East 61st as it supports cold cap users and already has a freezer.
Good luck!
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Melibt,
Hey there!! I had my 2nd TC last Wednesday. I've been shedding like crazy, but still as of today if you looked at me you wouldn't know that I was a chemo patient. I have long hair, but it is OMG so much thinner then it usually is. I can totally notice it on the sideburn area infront of my ears, and at the top of my forehead where my hair goes 1 way and my bangs go straight down. When I mention it to my husband, he can see it too.... but it's not like anyone else would really notice. My youngest son Matthew who is 13 1/2 (going on 21.... LOL) said that my ponytail (really it'sjust loosly pulled back in a little clip that absolutely doen't pull on it) looks much thinner then normal, but then he added in that, "it was jsut an observation, and that he didn't want to make me sad." LOL! My eye brows and eye lashes are still there..... knock wood....
I miss using product. I miss brushing my hair. I miss drying my hair. I miss occationally usuing my flat iron. Basically, I'm already tired of looking like I have no idea how to "do" my hair, and I miss getting dolled up and looking good. (I preface that by saying..... I'm usually comfortable in yoga clothes and a yoga headband..... but I guess I miss having the option to look good if i want to. Ha ha ha!) I live in Dallas after all. Land of good looking hair. LOL!
I never lost my eyebrows or lashes 18 years ago when I did this the first time, but I now need to know just in case............ when did y'all notice the eyebrows go? The eye lashes? More shedding between 1-2? 2-3? 3-4? etc. etc. etc. Is there really shedding all the way to TC number 6? Is it as much as in the beginning? Deb
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My eyebrows have just recently thinned - I'm 8+weeks PFC - and eyelashes are hanging in there. My MO says that not everyone with Cytoxan + Taxotere loses their brows and lashes.
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I'm also interested in when everyone lost brows and lashes. I am 5 weeks pfc and still shedding after each shampoo and every time i comb hair. The most shedding i had was between #2 and 3, when I lost the majority of hair. It does slow down after that period but continues to shed. While others have had more success than I have, I am still grateful to have hair at the end. i don't have enough hair to put in a ponytail any longer, and need to cover some bald patches, but the new growth is now coming in rapidly. My lashes have some missing spots but are still there and brows have thinned but are not obvious to others. I still have light hair on arms too. Can I get lucky and avoid having them all fall out?
Gray is now almost 2 inches on top with some spots with much more growth. Don't know why it's not evenly distributed. I broke down and made an appointment for semi-perm coverage which puts me 6 weeks out - can't wait!!0 -
Thx for the info
I was thinking of taking a short trip before the chemo starts
I'll find out on Monday if they support cold cap or not
I could go tp NYC but I live in Westchester and was hoping to avoid the commute
My surgeon seemed puzzled I though a trip to visit my mom in Fla would be nice she's on the ocean Is there any reason not to travel ? Seeing the onco on Tues and have a few more weeks before chemo0 -
Shasha, I think a trip is a great idea.
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Just read an article about chemo fog. Anyone know anything about this?
Do you think the cold caps help this as well?0 -
Shasha10 - I don't think a Florida trip should be a problem at all, as long as your oncologist doesn't want you to start chemo right away.
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Take the trip to visit mom in Florida!! Sounds wonderful as I stare out window with several inches of snow and frigid temps. I traveled after chemo #2 and #4. While I was nervous, I had no problems and the warm temps warmed the soul. Enjoy!!
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Re: Chemo brain - No, cold caps don't prevent it, judging by my experience. It does seem to get better as time passes. Some don't seem to get it and others do. I got it. Six months after my last treatment I still keep hitting the wrong keys as I type. I still have trouble remembering things, but I am much better at numbers now than I was in October.
One thing you should talk to your oncologist about is if you can ice your nails, both your hands and your feet, so that they do not get damaged by chemo. Icing is also said to help ward of neuropathy - nerve damage - and I think it did for me. I felt some small tingling in two fingertips for a few days, then it subsided and I never had any indications of anything again.
I've met women who've had their nails discolor - darken or turn thick and yellow - and read posts on the chemo threads here by some who have had their's fall off entirely. It's best to try to avoid problems like that by proactively icing.
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Shasha10- Going away sounds like a great idea. We pulled our kids out of school to go to Hawaii the week before the winter break, with the blessings of all their teachers. The best possible decision we could have made. I think we all deserve a little vacation from this ordeal.
Amrdbit- I have curly hair but have religiously flatironed everyday for years. I sometimes think this is one of the many lessons I am supposed to learn from all this. I do now appreciate my curls. 'No more bad hair days, just hair days' is my new catch phrase. The stress of the dx, surgery, etc. already took a toll on my hair, so I din't think I was starting with a full head of hair to begin with. I too miss being able to do my hair. Even the act of placing wet hands on my hair to give my curls some help in the morning seems to have a devastating effect. I guess time will tell where this is going... Sounds like if we can survive with enough on our heads between #2 and #3, it will be ok.
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Melibit, I agree with Amrdbit...shedding a lot but no one would guess I'm in chemo. Today was hair washing day and I combed out more than usual, but I will not panic. Now that it's dry it looks like it did last week. I also agree that I miss the option of doing my hair and all my products. My old bad hair day is now a good hair day LOL, but soon enough it will pass, and I'll be so happy to have hair to work with! I really miss putting my hair in a pony tail and it keeps getting longer but I'm too afraid to do even a loose one. Luckily, its cold here so I don't get too warm during my workouts and just leave my hair down...working from home so no need to fuss with it during the week.
I think you're experiencing exactly what you should be at this stage...keep the faith!0 -
Rhonda2-- Thank you for the reassurance on the itchy head. I am trying to ignore it now too.
hope49-- Your calm is inspiring. Tonight is my prechemo wash. I will not panic.
I am still looking for the right shampoo. Taking suggestions. Mine fits all the criteria from Frank, but is thickening, which is a no-no on the Project Rapunzel site.
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Melibit,
I use Nourish Shampoo from Trader Joes for $2.99. I learned about it on this thread and I really like it. I have a deep kitchen sink with a pull-out nozzle so that is where I was my hair. I mix the shampoo with water and when I pour it over my wet hair and message ever so gently. I only wash once a week because my hair was only greasy the first week past chemo. Now my hair is more dry than it was before and I think chemo dries it as well. Once my hair is washed, I pat it dry and then use Kenra leave-in conditioner which also helps with the tangles. My second treatment is on the 14th (happy Valentines day), so I should know in another week or so if the caps worked for round 1.
Best of luck,
Rhonda0 -
Hi - does anyone out there have any experience with cold caps and Eribulin... I know the 4th side effect down on the list is hair loss... but I called 2 cold cap companies and both swore it would work with any chemo drug that causes hair loss as long as you follow their instructions.. Any feedback out there?? Thanks..
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I'll know more on Tuesday about the time frame. My surgeon said 3-4 weeks after surgery so I have a short window.
I haven't told my 90 year mother yet, not sure if I should I don't want to fall apart if front of her. She survived non-hogdkins lymphoma 14 years ago.
I was the one making all the decisions then. Speaking to the doctors. That's when I bought the juicer. She's tough, she made it. Never cried. Never complained. Just accepted it.
I hope I have her strength
I hope we all do0 -
Shasha,
A trip to Fla should be awesome, and I can't imagine there would be any issues. My Onc approved our family yearly spring break trip in March to Key West, and even worked my TC apts around the vacation so I should be feeling good when we go. Good luck!!! Deb
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Shasha,
As for chemo brain, I can only tell you what it's like for me. I've been through chemo twice, once now (I jsut finished my 2nd out of 6 TC treatments) and 18 years ago I did 5 1/2 months (treatment every other week) for Hodgkins Lymphoma. Both times I've felt the same fogginess in my head and I refer to it as chemo brain. (Prefacing this by saying that other people might describe it differently)
My head feels foggy, my eyes get sore and if I were to move them from side to side it feels uncomfortable. Not painful, just uncomfortable. I often go to say something and forget wordsor what I was going to say. (I went to tell my youngest son to put his dishes in the dishwasher the other day, and instead I came out with, "put your dishes in the washing machine." Yeah.... my teenage boys know whats going on.... but it does cause them to chuckle sometimes. LOL) Also, Sometimes when I drive I realize I have to pay extra attention to what I'm doing b/c it's wicked easy to zone out. It's like driving around in a cloud.... or like I have stuffing stuffed in my head. Argh. LOL!
I'm sure there are more things I could use to describe it, but those are the top ones that come to mind.
! Not sure if that helps, but I hope it does some. Oh, and for me it seems to be the worst on days 3-5 after treament and then fades and seems to go away. Until the next treatment. Deb0 -
This all helps. Thx so much.
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Shasha, Since you won't lose your hair, your Mom will never know. If I were you, I would spare her.
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Sasha - my son and neices and nephews still don't know I had BC or did chemo.....The caps work.
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I am afraid I am starting to lose the faith. Rough night last night. Washed my hair and lost a good two fists full hair. I think much from the underside in the back and around my ears, but some from all over. I've only finshed one round with the second on Wednesday. Pretty sure I can't sustain this rate of loss...
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Melbit,
I think that is somewhat normal. Read some of the previous posts, that where the woman said they lost there's too. Have faith and keep up the routine. I'm praying for you as I'm behind you in treatment so I know that is going to happen to me too.0 -
My breast center, which has had over 40 women use cold caps, said to expect shedding to begin between the 18th and 24th days after the first treatment, that's just before and around the second treatment. The first heavy shedding is the oldest hairs, scary as it seems. Remember, people who don't use cold caps are completely bald by three weeks.
melibt - it sounds like your cap doesn't cover your entire hair area which is why you are losing so much at the bottom and the sides. Gelbands will help. Did you get eyebrow bands? If so, use them by wrapping them around your head below the caps in back and on the sides and snug them up to the caps so that area is fully covered. Believe it or not, it will start regrowing very quickly if your use those bands to protect it.
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