Cold Caps Users Past and Present, to Save Hair
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Javamama, I know right? Other ladies that had bald spots said theirs got covered quickly and I'm hoping the same. Others thinned out evenly some kept a lot. Also the kind of chemo sometimes matter. The cold cap probably wasn't cold enough other ladies said to adjust temp. I had a lot of chemo brain ,I did made sure it was tight. My scalp was numb. Or maybe too cold a lot of hair actually came off when I took off cap. The Artic Cap nurse said my experience was " A- typical " so it's possible it didn't work for me bc my hair didn't tolerate it. My hair is fine ( but had a lot of it) and I did have to baby it at times. It was so healthy. And now t have to start all over. I'm sure you'll do great!!
Willa, words of wisdom from the heart! Big hug! Thankyou for your thoughts:)Stay strong for your last one!!
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Ok ladies another question. I'm using the Dignicaps and have my 2nd treatment tomorrow. Had a pretty good shed on Monday and again today but now my scalp is extremely sore and tender, should I expect another big shed or clumps coming out? If we're talking clumps it may not be worth paying for cold capping tomorrow. Hoping for just another she
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I finally ordered the Penguin Cap today. My rep was a little dry, I felt like she wanted just the shipping info where as I was excited to be talking to someone who had actually used the system. Definitely not chit chatty! What threw me is that they are redesigning the system and I only get 4 caps now and 1 cooler but she did throw in the gel straps for free which saves me some $. I've gone to 3 places today asking about dry ice and no one knows where I could find it. Suggestion? My rep told me I need 45#.
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Pamela, the reason I didn't go with Penguin Bcs besides beeing more expensive as you say " dry" rep. But I used ACC. I am not sure where you located but in NJ I just googled dry ice places and found a few next to my house. I was dealing with amazing dry ice company. Guys went all the way to prepare dry ice for me every Monday for 12 weeks. They had it all ready in begs for me.They gave me huge discount and a few times free ice. On the day of injection( I had it usually at 2pm)I would stop by them on the way to the hospital to get more ice since it was during the summer and some of it melted.They gave that extra for free. I believe there a lot of good people still in this world!
I used 8 caps. And we rotated them every 15 minutes.
good luck!
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Pamela- I googled dry ice and my maps system showed me several. But google suggested several grocery stores as well. Had you tried your neighborhood grocery store? When I lived up in Alaska, all of the grocery stores hd dry ice because of shipping fish via the airlines and stuff. So I know that grocery stores are able to get it. Maybe you can set up a delivery to your store the day you need it or the day before.
Meow- you have no idea how much I'm afraid of bald spots. I can lose hair if it just thins out. But I don't want to lose huge patches. I just got the go ahead from my oncologist to take biotin during treatment to try and keep what hair I do have healthy. So there's that.
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Kshorten: I wouldn't give up yet unless it's your gut feeling not to continue. People seem to have really different patterns of shedding. I think many feel like they're losing a lot of of hair as they go through the process but then in the end they feel pretty good about the result. Hopefully others will chime in, esp those with your chemo regimen.
Good luck tomorrow whatever you decide.
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willa216- going to give it another shot tomorrow with the caps, really haven't lost that much. Scalp pain has gotten much better. Thanks for the encouraging wor
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Kshorten, i just finished the same chemo regimen as you are on, and for what it is worth i had one "big shed" that peaked day 19 after the first infusion. Since then it was fairly light, even shedding.
I have kept the hair from my hairbrush to track the shedding over time, so it is very clear to me how it has gone so far. I collected it in tiny baggies daily at first then weekly when that got boring. I think you will have a better sense whether you want to continue just before your third infusion.
I hope it turns out for you that you are among those of us who had lots of shedding at first then only light, even shedding.
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kshorten - I'm using dignicap and have my 3rd infusion (out of 6) tomorrow (technically today, since midnight's passed). My shedding has been even, though my hair is curly and I've been dealing with a lot more knots/tangles. The only place that shows visible hair loss is around my temple on the right side of my hair. It's possible the cap wasn't pulled down enough there. Plus, that's a fragile part of my hair at the best of times. But I don't think it's that noticeable to others, though it feels obvious to me. Plus with a headbandI can cover it right up.
So for me, so far, capping has been worth it. It helps mentally to look like myself and not have people treat me different because I look sick.
tunegrrl - I too have been keeping my shed hair in a baggie to track things. I'm shedding more than normal nearing infusion 3, but not enough to be alarmed.
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tunegrrl and Fightingthefight thanks so much for your words of encouragement. I just had my biggest shed yet as I'm getting ready for my 2nd infusion but the only place I can see scalp is in my part so I'm going to give the caps another try today and see how it goes for the next 21 days. I hadn't kept what hair that had shed in the past but I will today andgoing forward. Thanks again to everyone for the support!
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Hello Ladies,
seeking some advise and encouragement. I had my "BIG" shed today 7days post my 2nd infusion. I normally would shed quite a few hairs on the days I would go without washing but I personally feel like today was more than normal. I have really curly hair so that may play a role in it to. But my question is I'm I going to shed this much with every wash? my last wash was on Sunday and I'm already dreading the next wash since that's when I seem to think I shed. I keep my hair for tracking purposes so on day "19" didn't shed anywhere my "normal" I was quite surprise but comparing it to todays shed I had a mini breakdown in the shower this am.
Thanks for all the support in advance
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Kshorten, have you tried Toppik powder for the parts that are most sparse? It is honestly like photoshop for the top of my head. Without it i can see my pink scalp. With it, there is no colour contrast and i look so much more like i did before all this hell started. The special applicator is worth buying as well.
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Tunegrrl - Thanks I haven't but will order it today! I'll try anything that may help
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dee, I had a big shed on day 14 and also my first wash after every cap. Day 14 was the worst. However, even with all the big sheds, I feel like I only lost about 25-30% of my hair. It is thin, but still normal looking. Also, I feel like I have had new growth along the way. I have a ton of 1" long hairs all along my hairline. I did use a detangling spray from the start. Just tried to avoid getting it on my scalp. Aside from treatment weeks (every 3rd week), I washed about every 2-3 days. I am 2 weeks PFC now. Starting to feel somewhat normal again and counting down the days till a haircut, color and washing my hair with hot water in the shower.
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dee - I didn't lose much more hair than normal in the first 7 of 12 weekly TCHP infusions. But after that I lost a ton at each wash, around 300 strands or more. I also lost a big handful on a daily basis and continue to do so. It's on everything. I wore a white sweater yesterday and when I took it off it looked like I had a hamster nesting on each of my shoulders. I'm just 1 week PFC and have lost about 30-35% of hair. My hair wasn't super thick to begin with so it's not beautiful but it's there. Like Kechla, I think I have some newer growth. Obviously don't know final outcome yet. Point is that you are, unfortunately, going to lose hair. And it will likely be more than you like. It's scary. My onc NP made a big point of telling me this upfront because she must have sensed I had some delusion that I was going to have exactly the same bouncy happy hair after chemo. That said, there are some people who do have very little loss. That seems rare. Please try not to stress too much because that just makes everything harder on our bodies (I'll try to listen to my own advice here). Try to eat well if you can. Don't give up!! Lots of people get really upset and everything ends up okay. Best wishes to you.
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Oh happy day...sent my caps back! Finished chemo yesterday. Lost lots more than I had hoped but still happy I did it. Adriamycin did a real number on me! I know it will grow back faster and better so that is consolation.
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Trying to figure out the best shampoo to use while cold capping, what is everyone using?
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I've been loving the Acure hydrating shampoo my sister sent me in a care package. It smells wonderful (like almond cookies), and seems to be everything shampoo should be during scalp-cooling.
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Thanks Tunegrrl, sounds wonderful, I'll give it a try.
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Jiffrig
Congratulations on finishing your treatment and sending your caps back!
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So here are my pics pre 1st chemo treatment and pre 2nd treatment. Part is visibly wider and def have a bald spot forming but I'll just have to work on my comb over, LOL. The rest of the shedding has just been all over.
This is before 2nd treatment today
This is before 1st treatment 21 days ago.
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Having a bit of a meltdown on the eyebrows.
I'm 1 week PFC and last week I still had 75% of them. Yesterday, none. MO says 3 months before any new growth is seen and much longer till they fill in. For those further out, is that really correct? I seem to remember reading here that it usually takes less time.
I'm struggling to get a decent look with wax/ powder. Does anyone have a product rec? For those who use latisse, do you think it's worthwhile?
Thanks so much.
Kshorten - Despite your loss it looks like you have nice thick hair so hopefully you'll do well with a little bit of part adjusting! Good luck with your continued capping!
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Willa, I used Lattise on my brows only during chemo, and right after chemo started using it on my lashes as well. Loss of both lashes and brows for me was gratual and started after chemo. However, did not take too long for them to grow back. I continued using Latisse and still am, and my lashes and brows look very good. Still afraid of the second round of loss. That's the reason still use Latisse. I'm almost 19weeks post chemo. Time flies!
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Hopfull2, how did you do with the Penguin cold cap? I just received mine from Fed Ex today so I'm reading up on everything, my first treatment will be on 11/16. I think the whole cold cap thing has been more stressful than thinking of the actual infusion. It's the dry ice that has stressed me out. I think I'll be driving 45 minutes the day before to pick some up. My hospital doesn't have a freezer. Did you get the new system that only supplies 4 caps? The instructions just seem so specific, I'm scared I'll mess it up.
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COLD CAPS, anyone?
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Pamela23 the process is stressful...but oddly distracting. It actually took away the anxiety of the treatment and the time flew. I also have the new penguin system and only four caps and four bands and it was enough. My husband has been so diligent and I feel that also relieves the stress. We practiced the night before...watched a ton of u tube videos and just went for it. I am two treatments down and have yet to experience a big shed.
We got our dry ice from a gas company nearby...really google places in your area and call around...forty five minutes sounds far. And we got ours the morning of....the caps go in an hour before. Do not put them in overnight.
Also, label and rotate the way they tell you to and you will always have the correct temperature cap. It will be fine. Good luck!!
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Willa I lost my eyebrows about 7-8 weeks PFC. But they were growing back in within 2-3weeks I only lost them once I'm now 15 months PFC and have no problems with them although they're still not as thick as they were before chemo
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Teachermom2, you just made me feel SO MUCH better! Did you use the igloo cooler on wheels they recommended?
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pamela23 did you receive your caps yet? Mine came with everything needed including the cooler. The only suggestion I have is that we upped the ice amount. I'd say we get at least 60lbs. My husband gets thin sliced pieces so it's easier to layer
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Teachermom, which cold cap company did you go with ?
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