Cold Caps Users Past and Present, to Save Hair
Comments
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Hey Ladies!!! It's been awhile since I've been on here. I just wanted to remind everyone of a cost-saving tip from yours truly.In regards to the dry ice- I suggest writing an e-mail to EVERY SINGLE place in your area that sells the ice. Explain why you need the ice and then ask them if they can offer you any discount. I had a few grocery stores offer me a small discount and then I found a distributor who offered to give me all the dry ice for FREE. That was a huge blessing. I hate to put it like this, but sometimes playing your "cancer card", works in your favor. (Hey, we deserve it as far as I'm concerned).
I just had my double mastectomy 2 weeks ago and it was much easier than I expected. In the meantime, yesterday I noticed that my eyebrows are starting to grow back. They look like a million black dots and at first I thought it was dirt. haha. Still waiting for my lashes and hair to grow back. I'm still shedding like crazy (5 weeks after my last chemo) and I will be happy when that is over. Hope you all are doing well!!!
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We were able to get a good deal on the dry ice from Harris Teeter. And yep, my husband did use the cancer card!
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hi ladies I am just about 3 months PFC. I had dose dense ACT treatment which was harsh. At the end, I definitely had thin spots on top that requires some camouflage with scarves. I continued to shed for 9-10 weeks but definitely noticed it slowed. I also lost all eyebrows and eyelashes several weeks after final chemo. I've used biosil and biotin supplements throughout Eyebrows and lashes returned within a few weeks after they fell out completely My hair was very dry and very sparse I just opted this week to have a cut and went pretty short The sparse spots filled in pretty quickly and aren't noticeable any longer. I'm hopeful to improve hairs condition and get some growth
I'm glad to have used the cold caps though feel it was quite stressful each day as I shed every day and quite consistently throughout. That said, no one noticed I was a chemo patient and I was really lucky to have thinness fill in quickly
I continue to be a cold cap proponent and wish all of the current users much success You can do it! I had 8 treatments which is more than many of you and with a particularly harsh treatment I know you'll have success
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Help!! I'm 5 days out from my first treatment and the front of my scalp is itchy;( I read that some people have said that happens before their hair falls out, anyone had that happen after using PCC? I'm pretty sure my scalp got a little freezer burn at that spot also!! Hoping it's just my scalp healing from the burn?!?
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hi Jalsgal -
I had super itchy scalp. Stated a few weeks after first tx. I was convinced it meant I was going to lose my hair. And it turned out it was fine. :-)
I did develop an icky case of cradle cap (which itched a LOT and looked really gross), but with advice here went away w apple cider vinegar.
Hang in there new cappers! :-))
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Hi, Jalsgirl.
I also had a itchy scalp shortly after my first or second chemo treatment back at the end of July.
It also tingled. I was convinced my hair was going to fall out, but it is still here after 4 Taxol treatments
and 3 A/C.
I know this is easier said then done, but try to stay calm. If you follow the instructions from PCC you
should be fine :-)
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This is my hair, 2 days post last infusion. I have lost about 50% and my white hair is there, but not showing through in this pic. PCC was worth it for me. I am shedding daily but think I will be fine by three month and then 6 months hoping to being back to my old routine of coloring and flat ironing. Thanks ladies for helping my through the dark days of this process, esp. the days of major shedding.
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SueBe you look absolutely wonderful! Congratulations!!!
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FANTASTIC SueBe ! Enjoy all that hair- looks amazing:)
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Hi Jalsgal ... I'm day 5 from 1st Chemo treatment w/the PCC and TC protocol ..... think we're on a similar track. All went well for me ... no issues w/meds or PCC .... but yesterday the Nelastra began kicking my butt and the pains were pretty sharp. Ah, well, a bit better today but no marathons
(as if)! I haven't had any scalp itching yet but am sure many SE are yet to come!Good luck everyone, thank you for your posts.
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PS SueBe .... your hair looks fantastic. Congrats!
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Congratulations Sue Be! You look beautiful! All good stuff from here on out.
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jiilmare - are you taking Claritan when you get the Nuelasta shot. They say to take a Claritan/day for 5 days starting with the day you get the shot....and it prevents bone pain. I did it and didn't get bone pain.
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I had my first chemo and cold capping today. The first one was so cold and painful, I almost gave up. But after about 10 minutes, I got used to it and didn't have anymore problems. I also used the elastagels mitts and booties during the taxotere infusion, but had to take off the mitts and put them back on because my hands were hurting so bad. The booties were fine.
One down, three to go!
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Thanks for the positive feedback everyone......it helps;)
Gorgeous hair, SueBe, I have thick hair like yours so I'm not too worried about shedding!
Jiilmare, yes, sounds like we ARE on the same track except I'm not getting Nuelasta....don't even know about it?! Good luck to you! I'm having nausea still, 6 days out;(
So happy to have all the support!
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Thanks for all the positive feedback. I will be off and on this board, as things progress to help the newbies know what to expect.
Good luck on this journey!0 -
I started my first taxotere/cytoxan chemo today with the PCCs. The first cold cap was so cold, I almost gave up, but I was okay after 10 minutes. I also used the elastagel mittens and booties for the taxotere infusion. I was okay with the booties, but the mitts were painfully cold so I had to take them off and put them back on a few times. I wore the caps for four hours after the chemo was done. We're only about 10 minutes away so I could finish up at home.
We used two big coolers with dry ice. It's a lot of work, so I'm hoping to have good results!
I go back tomorrow for the neulasta shot. I'll be taking the Claritin for that. I don't have any side effects yet from the chemo, other than feeling a little nauseous.
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Beautiful photo, SueBe. Looks like the Monterey coast!
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My dry ice just got delivered for my LAST chemo tomorrow - woohoo! I'm SO ready to be done with all of this!
P.S. If anyone in Montgomery County, MD or nearby areas needs dry ice, I highly recommend my ice company - they've been very nice and helpful (though they didn't give me a discount). PM me if you want details.
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JeriferE you are right! It's so beautiful. One of my favorite places.
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Jenliza, yes, I have been taking the Claritin so hate to think what it might feel like without it! The bad pain only lasted 1 1/2 days and I could feel it begin to recede ... yea!
Jalsgal ... the Neulastra stimulates bone marrow production to keep your white cell count up .... (don't anyone quote me:)). My oncologist gives it the day after infusion and thinks it's pretty important. We live some distance from the infusion center, so next time it will be mailed and my daughter intends to give me the shot (luckily we have a good relationship)! Other than the bone pain and a bit of fatigue, I haven't encountered any nausea yet so hope that remains the case ... oh, but I did develop a rash today.... on my neck and chest. Half itchy, half painful. Haven't reported it yet as I thought it was insect bites. Put neosporin on it ... my WD 40 of medicine.
Hang in there, Jalsgal and congrats KILin ... woo hoo ~ you're probably just finishing your last treatment...it's a new and better world. Best to all.
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leslienva, you might want to take Claritin for 5 days after, not just the day off Neulasta. If you go to Amazon and search for loratadine...you can buy a big bottle for 1/3 of the price of Claritin. It's the same product...Claritin is just a name brand of Loratadine. I never got bone pain...
And sounds like you did well with caps... The PCC's work...you will retain most of you hair. You will shed and fear it's jot working...but it is.
I lost about 10% of my hair maybe a lil more now since my shedding picked up just a little after I stopped chemo. I suspect it will stop soon. I've lost all but a few eyelashes, but my hair is growing...so hair have to wait till they grow back. It's weird to be shedding is some areas and growing hair in other areas.
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Can anyone help with the logistics between cold cap treatments? I've heard it's wash your hair 2x wk, no blowdrying ... just comb it out once and sort of leave it between washings? I'm using the DermOrganic shampoo & conditioner recommended by PCC, but am so curious to learn what others have done to get through 5 months of this! Any wiggle room on a cool blow dryer? It stays wet forever otherwise! Thanks!
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Hi, Jiilmare.
I started using the PCC on July 24th. I wash my hair once or twice a week at the most. I use baby shampoo with a spray leave in
conditioner. I let it air dry then comb it with a big tooth comb. I also comb it as little as possible, usually once or twice a day.
Disability has made this possible.
I have not used my blow dryer, hair brush and/or straightening iron since the week before starting chemo.
And no color. My hair looks terrible with my brown and gray roots, but at least it is still there and my last chemo
treatment of A/C is Friday.
Good luck! Time will go quickly and it will all be worth it :-) That's what I keep telling myself!
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Is it best to wash your hair using cupfulls of water or a light shower flow?
I'm still taking the Claritin so I'm hoping that helps. I'm so tired today, tho. I took a melatonin last night, which helped, but one of the drugs (maybe the decodron?) is making it hard for me to sleep.
Leslie
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The protocol is no hair drying and I went without blowdrying my hair for about seven months. Definitely not a good look for me, but I had hair and that's what mattered most. But...I used cold caps during the spring/summer months and I can see how that would be harder during the winter. My thinking is that the problem with blowdrying (besides the heat) is that it's usually accompanied by a lot of pulling/tugging at hair with either fingers or a brush to style. You don't want to be touching your hair any more than necessary. I don't see how using a blow dryer on a low setting with cool air would cause much damage if you just aim the dryer at your head (away from the roots). If you decide to try it, please do it sparingly, not everytime you wash.
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About hair washing... I washed my hair in the kitchen sink and rinsed with the sprayer using a light flow. It was easier to get the water exactly where I needed it this way without a lot of rubbing. Yes, water went everywhere, but after a lot of trial and error I found this was the best method for me. To apply shampoo, a lot of us used this trick. Get a small plastic bottle with a pointed tip- like the kind used to apply hair color or some people used those red or yellow plastic condiment containers you see at picnics. Put some shampoo and water in the container and shake it up then use the pointed tip to apply the shampoo directly to your scalp. Hope this makes sense.
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Check your PCC notes that were sent to you Jiilmare- I believe cool low blow drying on the bottom of hair is permitted.
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Hi, jc.
I am glad you mentioned about the washing. I wish I had thought of it.
I have been using a cup in the shower.
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I completed my 4th rounds of chemo today with HAIR! It went smoothly without any reactions. My hair much thinner than before and I have a few very thin spots by both ears, but I have enough hairs on top to cover. Thank you everyone for your helps, supports, encouragement and kind words during this process. Without you, I have no idea how to get through this treatment with cold caps. Thank you all. Love.
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