Cold Caps Users Past and Present, to Save Hair
Comments
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Kilinki - someone in the past has suggested cornstarch for helping removing tangles. I hope it helps.
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Hi ladies!
My local news station just posted this story on my successful use of the Penguin Cold Caps!! Please feel free to share on your Facebook pages or other social media- we need to spread the word!
http://www.wkyc.com/story/news/health/2014/05/05/cold-caps-penguin-caps-chemo-hair-loss/8730573/
Also, it was interesting to here the news anchor, Jim Donovan, talk about how losing his hair during chemo was a shock to him as well, from the male perspective.
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Deelightful - congrats on your mom! My last chemo was November 12th. I "test" colored my hair March 12th, and went full on color and highlights and cut on March 18th because my sister was getting married. I had no problems.My hair shed for several months after chemo but once it stopped, it stopped. I am now almost 6 months PFC (cannot believe it!) and wash my hair with hot water and organic shampoo every few days. It is thinner and is growing back around the ears and nape of the neck, but I am super happy with how I look and feel. Best to you!
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deepcreek- you look beautiful! Such an awesome segment and your hair looks great!
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Way to go, Deepcreek! So good to see more news getting out there.
kilinki, so sorry you are having this trouble! I didn't have the matting, but I know a couple of others raved about using the cornstarch. I know you are shedding a lot, but it sounds like others feel you still have a lot of hair, I'd encourage you to hang in there! Your hair is longer so while I agree your pictures look like a lot of loss, the length of the strands may be making it a bit worse. I know warriorwoman saved her hair and posted some pictures, maybe she will weigh in on the comparison. If you make it to day 21 with hair, we're told by penguin you'll be successful...wishing you all the best!
wyomama, I didn't use the freezer bags, so hoping someone else will weigh in on that, we kept it all in the 2 coolers and yes, looked like the circus rolling in when we came with all our gear! LOL As for the chamois, I actually kept my chin strap either unhooked or very loosely hooked - my PCC rep said that was fine as long as the cap was tightly on my head...that way I could still eat, drink, comfortable. I don't think you need to pull the caps out every 10 minutes, just 10 mins before the next change you want to start testing and preparing the next cap. If you ever have one not cold enough, we put it right on the dry ice for about 2 minutes and it cooled right down...if it's too cold, then you'll knead it to warm it up (be sure to have gloves). I tried a few shampoos and the one I liked the best was DermOrganic. I know you start tomorrow, so if you have any more questions, feel free to PM me and I'll keep an eye on my email tonight. GOOD LUCK tomorrow, you'll do great!
deelightful, way to go! I remember when you were investigating the caps for your mom and feeling unsure whether you could do it, and you did! So happy to hear your mom is done and feeling well, and has her hair thanks to your help!
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Hi Everyone -
I'm reading your accounts of fear and victory. Please know we have each been through the anguish. Most have made it through with reasonable success.
I haven't been here as I was in the hospital with an infection after my exchange surgery. I got a new implant but I may lose it again. I am reminded to count my blessings for which I have many. I am trying to be my cheerful self but it is a struggle lately.
Anyhoo, while my idea of a Hairy Voodoo Doll Contest didn't catch on, I am posting my submission anyway. Hopefully Artsmart arrives with her entry too. I have placed her in my memory cabinet as a symbol of surviving one of the greatest challenges of my life.
Materials used: Human hair (mine), shell, coral, stone, silk, glass, semiprecious stones, glass, crystal, paint and evil eye beads.
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WW! I love it! I didn't save any hair so I couldn't make a doll :0(
Sorry to hear about the infection. I hope you are feeling much better I lost my right implant to one almost 3 months ago. I think the good news for you is you have not had rads yet?
I have just scheduled a fat grafting to start my recon over. This set back has been by far the most challenging for me emotionally. I'm good now but when it first happened I was pissed at the world and then some!
Good luck! Maybe things will settle down for you and you won't lose it after all.
Hello,to the rest of you beautiful ladies!
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Warrior: So sorry to hear about the infection. Have that voodoo doll direct some of her mojo toward clearing up the infection and making sure that implant stays put. On that note, I could probably pull some hairs out of the drain (ew), but I'm not nearly creative enough to pull off anything as good as yours. It would be a pretty scary voodoo doll—and not in a good way.
On a more positive note, how's the new hair growth coming? As for me, I'm definitely seeing a lot of baby hairs. It's now been five weeks PFC. I might crack open the package of all-natural hair color next week....
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Hi girls! Happy Mothers Day Weekend!
I have goofy pics below that kinda shows my hair growth at 4 1/2 months PFC and again at 8 months PFC. You can see the longer hair I am holding outisnwhat continued to grow during chemo and capping. Then you can see how long and thick the hair that came in where the shedding occurred. Over my ears and the crown were where the worst shedding occurred like right up and over where you would wear a headband.
Sorry. Working on phone and tablet! Won't let me shrink the pics :0( Editing.... threw the DH off the real computer!!!
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Well I had my 1st chemo weds. 1 down, 5 to go. It was uneventful. Then neulasta yesterday. Also uneventful. I still feel like myself today, scared that I'm gonna hit a wall hard here soon, but maybe I'll get lucky? Lol!
I used my caps too, 10 hours worth, whew. I didn't have any lingering headache, tenderness, anything. I hope that's not a sign I did something wrong. The first 2-3 minutes of each cap was like a huge brain freeze, then nothing.
Is it normal that my hair feels very, normal?
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YAY, wyomama! Great job and glad it went well. After the first cap I always felt like they weren't cold enough but my cappers assured me they were. I think your hair will feel normal for a bit then you'll probably notice it seems oily as you can't wash much and then it will get to feeling pretty dry, be calm if the shedding comes you're going to do great!
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Hi Wyomama,
You might hit that wall tomorrow or the next day. Or not. Just make sure to get enough water, and load it down with citrus if it starts tasting yucky.
I had a little peeling on my scalp after a week. I didn't realize I'd gotten frost bite. It wasn't until the final infusion that I remembered to change my part with every cap change—that did the trick. And, yeah, it's 2-3 minutes of, "Holy crap, I can't take this!" and then you're fine. Glad it went well. You'll be on that last treatment before you know it.
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Just checking in and reading the posts. I am about 16 mos PFC. Hair is almost all one length now, about shoulder length. Thicker, not dry and frizzy but still incredibly curly. Even new hairs are curly. Hope all of you newbies are doing well and just sending encouragement your way.
Tuesday is a 6 mos followup CT for a spot in my lung from PET and CT in Jan. Got a second opinion from Best Drs. with Aetna and the doctor and my onc. still do not think it is metastasized breast cancer or new lung cancer. CT will tell us if it reacted to antibiotic treatment or if it is still there....same size or bigger.
If it is there, unchanged, my onc is going to do a bronchioscopy with a pulmonary specialist that can actually biopsy nodes in medial chest as well as look around. My spot is upper rt node and 9mm at last count.
If it is bigger, my onc is going to do a CT guided biopsy.....it was too small and location was not going to provide reliable results in Jan.
Put me on your prayer lists and hopefully I will get through this....thanks. Will update you next week.
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praying for all good results for you schoolmom. Sounds like you med team is being extra cautious and treating you well. Hang in there!
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It's good to hear from you, Schoolmom and we're looking forward to good news.
I will be happy when my hair is all shoulder length again. 18 months...that's about 16 now for me.
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kilinki - Plain, dry cornstarch works wonders. I got a massive mat out of a friend's hair not long ago using it. Put the cornstarch liberally over your mat and then work it in thoroughly with your fingers, adding more if necessary. It is very silky and makes the hairs slip across each other. You should be able to then begin to work the mat apart with your fingers starting at the bottom. Using a wet hair brush (the type of brush, it's not actually "wet" ) from the bottom after working in the cornstarch is also helpful. Cornstarch is used on show dogs to get mats out of coats. It really works.
Good luck!
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HELLO!
I will be starting chemo in a few short weeks. I am having the cold caps shipped to me soon and I am WAAAY confused about how to used them properly with the dry ice. The lady from Penguin Cold Caps told me I will need 2 coolers and 80 pounds of dry ice for each chemo treatment. This sounds like an awful lot (and awfully expensive). I am only having 6 caps shipped to me. Does anyone have any advice for me on how they used these things? Did it cost you a ton of money? I am afraid that I won't be able to afford to do this. To be honest, losing my hair sounds worse to me than losing my breasts =(0 -
FL sunshine, my facility had a medical freezer for cold caps and I didn't have to worry about dry ice. I just checked the Rapunzel Project website (a charitable organization that donates medical freezers) and I see there is one at Tampa General Hospital. Any chance you could have your chemo there? Otherwise there are plenty of women who used dry ice who will chime in soon with suggestions for you.
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Sunshine - Dry ice can be costly. However, if you explain your reason for the purchase you may get it discounted. I normally purchased 100 lbs. the day before and it cost anywhere from $60-$130 each time depending upon who rang up the bill.
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Hi FLSunshine,
80 pounds of ice for six caps is more than you'll need. We started off with 70 pounds for eight caps and ended up getting 60 pounds for the last two treatments. We paid $1 a pound. You might ask if you dry ice place will offer a discount because you're going through chemo (I didn't ask, but I probably should have). Our local ice place had a cooler in the lobby, so we just brought the coolers in and the guy put the ice in for us. Penguin should provide you with instructions for layering the caps and ice. You want to put the caps you're going to use first at the bottom of the coolers.
We used two coolers: http://www.amazon.com/gp/product/B000F6UJ5K (We absolutely needed something with wheels.) Five cap boxes (plus the ice) are the most you'd be able to fit in that cooler. Perhaps a larger cooler (or two slightly smaller) would fit your needs?
This infrared temperature gun was inexpensive and worked great: http://www.amazon.com/gp/product/B006V4WNYU
And my husband used these gloves: http://www.amazon.com/gp/product/B002U0KEHM
The video on the Penguin website was helpful. We did a few practice rounds beforehand to make sure my husband had it down. He was a perfectionist.
Hope this helps.
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Most of us used the type of coolers that Mazie linked. Each cooler held four cap boxes and the dry ice. Since you're only using 6 caps, you may be able to find a larger cooler (make sure it has wheels) that will fit all six of the cap boxes plus ice. Basically, you layer dry ice slabs, then two cap boxes, then another layer of dry ice etc. I would not skimp on the dry ice. With only 6 caps, you have a shorter time to get the caps refrozen before it's time to use them again. I paid about $100 each infusion for dry ice. There was only one dry ice supplier in my area so I didn't have other options. Call around and ask. Like others have said, some women were able to get discounted or even free ice. I'm at work so can't spend too much time on the details right now, but I'm sure others will respond.
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Does anyone know what has less side effects Taxol or Taxotere? I begin the T part of my regiment in June and he said I can choose which one I want... Not sure what the difference is
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Dlove72 - would your taxol be weekly? Or bi-weekly? I had weekly taxol (no other chemo) and felt pretty darn good the whole 12 weeks. I also had great success with cold caps - lost almost no hair on my head. I think bi-weekly taxol is tougher. I can't speak to taxotere. I would recommend speaking to your chemo nurses - they probably have a very good idea what would have fewer side effects.
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PatinNM- as of now it would be taxotere x4 every 3 weeks- not sure if I chose taxol if it would be the same thing. I'm using cold caps right now & I also heard that cold caps are successful with the taxanes. I just notice most people use taxol so I was curious if the side effects were less for hair and everything during taxol
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Dlove72, from anecdotal evidence on this thread, and my own experience, I would say that shedding is less with weekly taxol than with taxotere every 3 weeks. So if your doc offers you weekly taxol I think that would be preferable from a hair perspective.
(I don't know why, but I don't see taxotere being offered weekly - it's always every 3 weeks.) But if you're paying for dry ice, 12 weekly taxols would be a bigger expense. How is your hair holding up with the AC?0 -
PatinNM- he never mentioned weekly taxol to me. I suppose I'll just be doing the taxotere every three weeks. Hopefully it's smooth sailing. It's holding up pretty well with AC. I'll have one more ac round to complete and hoping it's all good. Every day I wake up nervous not knowing what to expect. Thankful for the caps.!
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Kilinki, hope you are doing OK. Just caught up on the board and hope your silence the last few days is a good sign that the shedding has finally slowed down. I am pulling for you!
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DLove-Taxol is easier on the body, and hair, than Taxotere. This is what I see most often combined with AC. I don't think I've ever seen Taxotere used in the ACT regimen...
Check the website for instructions on packing the coolers and a list of needed items:
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hi! I noticed you went through the same regimen I'm going through while using PCC.. When did you experience most the shedding? I'm curious bc I just had round 3 Ac and won't start T til June and just wondering what to expect. Please get back to me and let me know
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makingway- I just noticed that too.. Everyone pretty much had taxol. I'm gonna talk to my doc. It does seem that taxol does have the less side effects
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