Cold Caps Users Past and Present, to Save Hair
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Hi cold caps usere
Thanks for your advices I really appreciate it! What about cut my hair before treatment I want to make it short so I can go without brushing and i don't need to do pony tale I recieved complex advices regarding to this !!
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Hey Roby, my understanding from the PCC folks is you shouldn't do any "heavy" haircuts just before treatment since that can encourage your hair to fall out as it adjusts to a different weight. I had a light trim beforehand and I don't think it affected the outcome.
Warrior Woman, I think we might have the same hairdo! I'm ~7 months PFC. All this new stuff is coming in just above my neck and behind my ears plus funky little sideburn-like things in front. It's strong and not gray (hooray) and it has a mind of it's own. I ended up cutting all my hair just above my shoulders in order to even it out a little (I used to have it a couple of inches below my shoulders).
The good thing is that almost all my hair on top stayed in place, so I don't really look all that different, my hair is just shorter and a little thinner. If I had to do it again (hopefully not!!!), I'd probably use more head bands in order to better cool the area just above my neck. I rented 4 of them at the time, maybe should have rented 8. Nonetheless, as many have said, it's so worth it!
Best of luck to everyone -
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ROBY7- That website you inquired about is a white glove service that provides items needed coldcapping delivered to you. I believe they utilize Elastagel caps. Some BC gals may have utilized this service. I haven't seen anyone on here that has used them. Most BC gals are capable of navigating this process and it's moving parts on their own. Have you checked the Peguin Cold Cap website? Its chock full of information and once you make contact with the saleserson for your area-much more detailed information is provided. It is the most widely used brand on this board.
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Has anyone had bad scalp flaking? I tried rinsing with the apple cider vinegar but I still have the flakes. Any remedies??
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Hi barre mom,
I didn't find anything yet on elastigel cold caps so till now I will stick with penguin :-/ they are really expensive
I cut my hair very short today it was long to my shoulder now it is Pixi cut
I know they don't recommend that but I don't want to take care of long hair I wear scarves anyway I want to protect my hair from the strong effect of taxotere after read sad stories about permemant hair loss so I decied to use cold caps My chemo is on 15/1
What is the best biotin supplements
What is the best liquid Silcia ??
Any advice on best supplements brands to buy ??
Thanks a lot
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I use Bio-Sil drops-- just five drops in a quarter cup of juice every day
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roby7- I reccomend reading through this board for at least the past 4-5 months. You get a real feel of what the process really is like and what some ladies do and what some don't. PCC reccomends the following regarding silica. I also took Biiotin 2x a day as well as iron, magnessium, zinc and a Bcomplex. Also, if finances are a true hardship, PCC does have financial assistance. Reach out to them directly. I dont know where you're located but check with your hospital to see if they provide a freezer for Cappers. A list is also available at Repunzel Project website. That will save money on dry ice. IF you need to purchase dry ice for coolers, let the store know what you're needing the ice for and you may get a decent discount.
PCC GUIDELINES:
TAKE SILICA COMPOUND FOR GOOD HEALTH OF YOUR HAIR. 250MG 3 times a day with meals. Always check with your doctor.
*STOP USING DEODORANT WITH ALUMINIUM IN IT
*STOP DRINKING CAFFEINE. DECAFFEINATED TEA IS A GOOD CHOICE
*DRINK PLENTY OF WATER!!! DURING THE INFUSION AND A FEW DAYS AFTERWARDS TO HELP THE LIVER AND KIDNEYS FILTER THE BLOOD. IT WILL HELP YOUR HAIR AND ALSO HELP MINIMIZE THE SIDE EFFECTS OF CHEMO! DOUBLE BENEFITS!!
BEFORE CHEMO
*DO NOT GET A DRASTIC HAIRCUT BEFORE CHEMO. IT IS OK TO TRIM THE HAIR BUT DO NOT CUT HALF THE LENGTH OFF. IT WILL WEAKEN THE ROOTS.
*DO NOT COLOR YOUR HAIR 2 WEEKS BEFORE CHEMO
*DO NOT WASH THE HAIR 2 DAYS BEFORE CHEMO AND 2DAYS AFTER CHEMO.
*DO WASH YOUR HAIR THE 3RD DAY AFTER CHEMO TO WASH AWAY ANY BUILD UP ON THE SCALP.
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Hi Ladies!
I've finished 5/6 TCH+p treatments and looking forward to the end!
It looks like most ladies went back to "normal" hair care 4 months PFC? Is that about right? I literally made a hair appt for 4 months PFC for something to look forward too but I just wanted to make sure a cut and normal color will be ok by then?
Also, when did you go back to normal everything else? Like regular deodorant, toothpaste, etc. (not the aluminum-free stuff)
And did anyone use anything after chemo to promote hair growth? Like Rogaine or Ovations Cell Therapy or Nioxin?
I'm nervous because it seems like many people had major shedding after chemo. I'm not sure how much longer I can take this emotional game of chicken with my hair! I'm even seriously debating taking the tamoxifen after because I'm not sure I can deal with the side effects (which include hair loss apparently?!)
Sorry, it's just been a rough few days! Round 5 is kinda kicking my ass.
Thanks for all the help ladies (and support!)
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Killerfunbags, I never had any hair loss during my five years of tamoxifen. But I'd continue using the Bio-Sil (or start using it if you haven't). I think we can trim our hair a month after our last chemo but no coloring for four months and only with a non-peroxide, no ammonia hair color. I hear Madison Reed has a good one. think the problem with the hair growing formulas is that stop working once you stop using them and they can be harsh on your hair.
Are you having any scalp flaking? It's driving me nuts!
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Leslienva- Thank you!
I had scalp flaking at the beginning- huge gross flakes- I think for rounds 1 & 2 but it stopped after that. I think when my hair got used to the infrequent washing. Although I have bad itching and pain again that I haven't had since the beginning either.
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I'm thinking I'm not getting the shampoo out well enough since I'm being so careful!
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KillerFunbags, I'm only one data point but I went on Tamox about 8 weeks PFC (after rads) and any hair I lost from chemo has been coming back full force. Best of luck, at 5/6 you're getting close to the finish line!
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Killerfunbags, I have been on Tamoxifen for about 19 months now and have not had any issues, and my the hair I shed grew back quickly. At first, I didn't notice even though I practically took a microscope to my head to look for new growth.
But then suddenly one day I noticed tons of new hairs about 2" long all over the place. The nape of my neck and over my ears grew back fast and was churlish…gave a lot more body while the rest was all filling in. Now, it's all back to straight. After treatment ended, I get a gentle 1/2" trim every month to get rid of the dry ends- made a huge difference. I went back to my old styling routine (hello hot showers!) at 5 months and then got a full cut, color and highlights at 6 months. I did use Osmotics hair products for awhile and think they really helped make my hair fuller, faster. Keep up the biotin and silica and get lots of protein, that will help, too.As for the other products, I think I went back to my normal toothpaste, etc about 3 weeks PFC. I was so happy to throw all that stuff away, too many memories of chemo! I even threw out all the pajamas and clothes I wore on chemo days because just the sight of them made me sick - kind of a declaration to move forward
Keep up the good work - you're almost there!!!!!
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Hello all! I have a favor to ask. I spoke with a new friend today who has had a recurrence and is considering doing chemo again.
1) Can those of you who have done TC (taxotere, cytoxan) specifically please post your experience for her? I told her I can't recall anyone on TC who hasn't had success, as long as they have done Penguin or at least Elastogel with Penguin protocol. (told her AC does not have consistent results and wouldn't recommend Paxman)
2) Can the Philly, PA gals (especially those who went to Penn) please post so she can connect more with some locals who have gone through this?
Thanks so much - have a great hair day all!
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Dancetrance, I was treated at Penn and would be glad to connect with your friend. I'll provide my number in a private message. I also don't recall anyone on this thread who wasn't successful with cold caps when receiving TC chemotherapy- success defined as not feeling the need for a wig or other head covering.
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I'm about to have my 4th and last TC chemo one week from today. I still have all of my hair!!! Not much shedding either, hoping it doesn't happen too much post cold caps. But so far I look 100% normal.
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Dancetrance - I went to Penn for surgery but stayed local for chemo at Hunterdon Regional Cancer Center. I did 4 TCs. I read every post on this thread from TC women and never saw one who was not successful. It is my understanding that Penn does provide private rooms and allows cold capping. My before and after photos are on my profile and I am also posting a selfie from this week - 9 mos PFC. I lost more than most TC women - about 50% and most happened early in the chemo - days 18 - 30 if I recall. I had serious problems with reconstruction at Penn and switched to Jefferson for plastic surgery. I'm not here as often as I was because I'm too freakin' busy dealing will all the surgeries. However, I am NED for the New Year and I wish that for every one of us.
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Hi All,
It's been awhile since checking in .... just had TC treatment #4 last week and the SEs were so much worse than the first 3. Hope the final 2 aren't so bad. I'm torn about sharing my experience with cold caps, as it hasn't been as successful for me as for most of you .... and I don't want to discourage anyone from trying them. I estimate hair loss at 65% - 70% .... it sort of started with a big shed about the 2nd infusion and didn't let up for a devastatingly, depressing length of time! One reason I've kept going is that - weirdly - my bangs and an edge on the back and sides have survived enough to keep me looking ok/normal with floppy felt hat or scarves .. but the rest is so MIA that going out without cover isn't doable. As I look in the mirror at someone who does look like a big C patient anyway, it seems some days not worth the hassle of continuing..... guess I'm at the point where one asks how little hair is worth continuing for ....(oops ended that sentence with a preposition)... The other reason I'm considering continuing is that permanent Alopecia scares me and I'd like to think there's less damage to the hair follicles overall, using the Cold Caps. Anyway, I did follow the Penguin protocol closely, used UCLA's biomedical freezer, used Dermorganics, washed gently with cold water every 6 days or so, satin pillowcase .... just have no idea.
I am taking it one day at a time, and reminding myself that killing the cancer is the most important goal not saving my hair. It was very important for me to try but I have to accept reality and not let it depress me too much ... that feels counter productive to my process.
Good luck to everyone .... I'm so happy Cold Caps have worked for most of you and wish I could count myself among your numbers!
Jiilmare
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KillerFunbags, From my reading I think Tamoxifen only impacts 5% of women with hair loss. Granted, I'm convinced I'm in that small 5%
but I still taking it. Anecdotally it seems most users don't experience hair loss from it.0 -
Been on Tamoxifen for over three years....not noticing hair loss or thinning.0 -
jiilmare, I am so sorry to hear that, especially since you did TC and I had not recalled anyone not doing well the caps on that regimen. I'm so sorry!
WW also surprised you lost about 50% on that regimen. You do look FAB despite that, though! It is good for us to realize it isn't foolproof, even with TC, especially when talking to newbies. So sorry to hear about your reconstruction problems. It does happen to some of us. I just had my 4th reconstruction surgery a week ago today. I am doing fat grafting only (which is not common) - and it is expected to need 3 or 4 surgeries. I would need 5 or 6 to fix my rads side completely, but I am almost out of fat. Sounds like a good problem to have, but not when you have radiation damage, lol. But, I am hoping to get as much healing out of this last fat grafting as possible.
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I had my last TC today and still have my hair! I'm hoping it will stay in through the next few months as it seems many of you continue to shed for several months after your last treatment
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Hope -We have a somewhat similar diagnosis, did the same chemo, and I live in Chicago, too! I finished chemo about seven week ago, and my hair is still coming out in clumps of strands (probably anywhere from 5-20 strands at a time). I started out with a lot of hair (long and thick), and I've easily lost 60%+. Almost all of my hair loss is underneath. I still have a semi-full covering that looks/feels like a 'hair helmet' if I comb my hair just right. I always wear it in a ponytail (which is about a tenth the thickness it was pre-chemo) - because it's so thin, it looks just awful when it's down. It's also become so dry and brittle, it looks and feels like straw - at least the bottom 3-4 inches, anyway. Did you lose this much hair on a daily (or regular) basis two months post-chemo? Someone suggested I could still go bald, and that the caps may have just slowed the process. I've never heard of this. I was under the impression that if this is going to happen with cap use, it occurs during chemo, not months after.
Nan
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Jiilmare -I also had terrible side effects with CT, mostly GI - along with severe taste alteration, which was unexpectedly devastating. I could barely tolerate water. Hang in there. When you're done with chemo, you'll probably be surprised how quickly you begin to get back to something approaching 'normal.'
I'm not sure how encouraging my cold cap experience is - given the fact that I'm still losing hair two months post-chemo. However, I can tell you that I've also lost somewhere in excess of 60% of my hair, much of it by the third cycle. It's definitely slowed since then, and I suspect yours will, too.
Nan
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I did 6 rounds of TC, and estimate I lost about 50% of my hair (my hairdresser agrees with that assessment). However, I still had plenty of coverage, and looked pretty normal. My shedding seems to have mostly occurred during chemo, and stopped pretty quickly afterwards. I am now about 2 months PFC, and as far as I can tell, shedding has quit. Some of the places where I lost hair (esp. in front of my ears) have filled back in nicely, though overall it's still thinner than it was pre-chemo.
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Hello Ladies,
I am getting ready to start my chemo treatments and have gotten all of my supplies but I still have one question. For those of you who have used the elastro gels, how did you store them in the cooler. Did you put them in a container first or just straight into the cooler with the dry ice? Thanks!
-T-
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We use the Penguin Cold Caps, but I think you can follow their protocol. We put the first round in the containers then put them on the dry ice for the next rounds to get them colder faster.
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KiLin - Our experiences are similar. The hair does fill in quickly...not as fast as I'd like but enough to get us through.
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Hey girls - well, I start my treatments tomorrow .... here's hoping all goes as planned especially with the Penguin caps. We've read, researched and got advice from all you friends ... as much as we can. My hubby is coming with me to assist with putting caps on, off, etc. I told him if they didn't work, we could all blame him - ha ha! Glad to hear that you had good results too, KiLin - yay!! That's what I"m hoping for. Just scared I"m going to scream when hubby puts cap on for the first time. I think i remember someone saying to Tylenol beforehand so I'll do that too. Hope its just the first few minutes I scream until my brain freezes. We practiced a few times and it was cold but not NEARLY as cold as it will be tomorrow. I'm doing TC so it seems like I won't be at Penn too long. They said about 3 hours total plus I have a 40 minute ride home. Guess I'll be pulling off the turnpike to change caps .... now that sounds fun. Did you girls wear any kind of hats (like baseball) or head bands? Can I still wear a scarf around my neck under my coat or will it rub my hairline? Ahhh Can I wear a hoodie over my cap on the way home in the car or will it get too warm? Thanks again to ALL OF YOU for your guidance and support .... don't think I would have made this cap choice if it wasn't for all of you!! Keeping my fingers and toes crossed this works. xo Kim
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