Cold Caps Users Past and Present, to Save Hair
Comments
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farmerjo~
I did PCC's back in 2009 and I was very pleased with my results. I had lots of good tips from the ladies on here and my husband made me crazy with his exact times of kneading, changing caps etc.
I was able to use them in Virginia after my MO spoke with Frank Fronda a couple of times and she agreed to let me try them.
I hope you are able to use them if you want to...
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hi membernow I'm from Australia as well I cold capped this time last year using penguin cold caps but I have heard that now the hosp where I did chemo has now purchased a paxman machine. Where do you live I'm from Perth.
Elise24601 I capped a year ago and my hair shedded post chemo for about 4months and it did in my opinion get really thin but the good news is my hair started growing straight away so don't lose heart even though it seems like all you are doing is shedding you are in fact growing new hair which seems to grow rather quickly. I know how you feel we all went through the same emotions you are going through so we are all here for you
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Hi Aussie-girl, I live in Melbourne. They have several Paxman machines in the hospital I am being treated in and looks like they had them for a while now.
I'm 11 days past 2nd tx and hair seems to be falling off really quickly. I'm also developing a bald spot right on the crown. It is very stressful and I really don't know if this hair fall will ever stop!
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I have located a center a little over an hour from my house that has DigniCap on site. I called them and arranged an appt..
I sent an email to my current MO Nurse Navigator and made her aware of my intentions, and also asked if my MO would be willing to collaborate with the cold cap center MO. Waiting on an answer.
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SusanBP- Thats awesome that your hair loss has been so minimal! I lost a lot just behind my ears (the shape of my ears prevents the caps from making good contact there) but otherwise its amazing how much hair I still have. Fingers crossed! I did get the same instructions for AC. My instructions for Taxol were four hours after, though. And I did THP with the P first, which can also cause thinning so I started capping one hour before that and then capped four hours afterward. The total time under caps was probably 8-10 hours (especially my first one which was slower and my second where I had an allergic reaction.) It became pretty typical for my husband and I to set an alarm clock for every 30 minutes once we got home just in case we nodded off so we would wake up to swap them. I capped until almost midnight at least twice. Forget kneading them every 10 mins for those last couple, I was asleep.
The infusion will be much shorter for me on AC, so my overall time in caps will be pretty similar. It is a long day for sure. Do you have a neck pillow? I find that if I wear mine the whole day (in the car, when we are home, etc.) it helps a lot. 5 hours does seem extreme, but they worked so well for me so far that I'm afraid to not follow the instructions. 0 -
Thanks Aussie Girl - does your hair seem back to normal, now that a year has passed, at least in terms of thickness, if not length? I've read it takes 6 months to one year for cappers to feel like their old hair is back, which makes sense, I just wouldn't want it to take any longer, I am very impatient about how much BC is changing my appearance!
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Hi! I just had my second THP infusion. When did you all on the same treatment start to lose your hair? My hair is still going strong....not shedding at all really. I didn't cold cap with my first chemo and really wanted to this time to save my hair, crossing my fingers!! I am trying to remember back and think I started shedding really bad the first time day 16 so had my hubby shave it:(
Thanks!
Kathy
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Elise24601 - did you decide on a topper? I ordered one last week. I hope it doesn't do damage to my fragile hair - but at this point - what's the worst, lose a few more hairs? I figure after reading how long shedding goes on after chemo is over - it's worth the investment to try to look a bit more normal - at times. (If it doesn't look like a bad rug!). My hairdresser estimates I've lost 40%. My last treatment is this Tuesday.
I agree with you - BC is hard enough - I can't wait to feel and look more like me. (6 months, I pray). I spent today on the beach in a big straw hat - felt kind of normal. My bald spot is pretty unsightly (male pattern balding?) so i have to wear a scarf or very wide headband - or a hat (I use Toppix but still need some "cover.l
I'm using Arctic (elstogel). I sense that PCC are a bit more successful from reading through these posts. Though the service with ACC has been great.
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I ended up getting a free human hair wig from the American Cancer Society. It's my exact hair color and texture. There are no clips to mess with, so it won't tug on my scalp, but my plan is just to wear it for special occasions a few times a month at the most, then on other days do the headbands, scarves, or hats.
I'm luckily only shedding minimally now (after 3rd TC) but I hate the way the top of my head looks from all the loss.
I just want to fast forward all of this and get on with my life. But I still have to worry about brows/lashes which I hear come out at the very end!
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Ugh. Was hoping the fact that I still have most of my brows and lashes was my good news. Guess I shall see. Im using a gel - burton Joseph - on my brows every day. I don't put it on my lashes since my eyes water all the time. Wishing us all good luck and good health.
And yes - a fast forward till this is all in the rear view mirror.
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Elise24601 I can feel that at the top of my head where all the new hair is growing and the nape of my neck ( where I lost most after chemo finished ) that it feels just as thick if not thicker than before chemo so once it grows in length it should look like it did before. I just need the hair at the nape of my neck to hurry up and grow which it is but because it was the last to shed it will just take more time. Good luck to you and hang in there.
Membernow good luck and try to keep the faith.
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I was entertaining driving waaay over an hour to an infusion center that has DigniCap; however, online reviews of that facility left me jaded.
My current MO/facility is outstanding and was highly recommended - but they are refusing to allow me to bring cold caps due to the 'dry ice' issue.
What to do.
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thats me second from left....elastogel taxotere x 4. First capping session we needed another cap in the rotation and more dry ice. Anyhow I channeled my inner 80s Sheena Easton meets Gitta Nielson vs Grace Jones, went to Phantom of the Opera with my girls sans hat or wig! Glad I capped. Just wish I could have that first session back. Oh well...
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RUNNER- Hows your hair doing? Mine is really bad. I'm not sure what happened but I can just tell something is different. It's all dead. It feels dead and I can tell it's falling out strand by strand. I don't see any new growth. Ever since that tingly scalp it's started shedding again. It's getting so thin in front I'm pretty sure I will be bald soon. Also it seems to be breaking off as well. This totally sucks. I was waiting for that shedding stopped moment. Instead it's like I'm back to the first 2 weeks. Poopoo on this.0
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Ladies, I believe Runner complained about steroid swelling. My face started to swell after 9 taxols. I hate so much how I look. Not even talking about hair...I still have 3 more. I can't stand it! When is it suppose to go away?
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hey guys,
My hair is still shedding some but not too bad. I have what I think is a huge bald spot in the back but now stubble is coming in so I'm hoping it will cover better in 2 months.
My dr out me on lasix for my swelling. I think it's helping some. I have a lot of facial swelling but I can already tell it's easier to breathe out of my nose.
Phaila- I got my hair trimmed 3 inches 2 weeks ago and it feels so much better. Have you tried that? I'm also using a conditioning mask on my hair everytime I wash it. I'm sure the dryness is a result of coldcapping. Freezing your hair can't be good for it!
I'll post a pic of my bald spot and the hair growing in. I think my cap didn't fit well on top of my head. The 4th treatment really did my hair in. I also got careless with the fit.
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Thus was in mid May right after my last chemo, it looks worse than it really is because I have the hair around it pulled over. It covers really easy with other hair
This was yesterday. It looks worse in the pic than it really is. The bald patch is bigger because of the 4th chemo but again, I have my hair pulled over to show it more. And I have tons of baby hairs coming in! They look like they're the same color as my regular hair.
A year ago if someone had shown me this pic and said that's what was coming for me I would be horrified but now I'm to the point that I just don't care. I'm tired. Ready for my body to heal. And move on.
Here is me yesterday. I'm still sporting cancer face but my hair survived. Believe it or not, you can barely see the bald patch with my hair parted on the side. I really can't wait for more eyebrows and lashes and my swelling to go away. But then again, people in hell want ice water so I guess my complaints are petty.
Happy 4th everyone!
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Before treatment,but after stopping blow drying hair
After third TC (of 4) Male pattern balding.
Side of hair - thinned 0 and graying , then touched u p with root concealer powder (with brush)
Runner, thanks so much for sharing those photos - looks very much like what I've got going - "Up Top" and made me feel even better about being part of this community. My last treatment is tomorrow - and though I anticipate more shedding - I am starting to think I can do this. I have been using my craft skills to make VERY WIDE fabric headbands to cover the spot - when I just don't feel like gunking my head up with Toppix. (Going one week between washing to minimize my trauma. I agree....my "standards" shift by the month, ready to move on.
I have a friend who did 12 rounds of Chemo last summer/fall -(no capping) she just took her wig off this week. I know we're all in better shape, hence why we put up with this - and come back to this forum to find our support.,
Phalia, I can totally relate to the dead hair (hence my profile pic). It's a little better a day or so after shampooing (and using Kerataste leave in conditioner). I just used some "filler powder" (looks like a compact) to fill in my around my ears where the hair is VERY sparse, and gray. (Guess that's a sign of growth? Noticing gray roots on the shedding hair too).
Puffy face and eyes, running eyes, but steroids today definitely helped.
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farmerjo- I used the infusion center at apple hill in leader heights. Few exits up from you but before York. They let me do dry ice. Actually I didn't ask I "let them know" what I would be doing so they were prepared.
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Here I am....going for Round 4 of ACF today. I have been cold capping since the first round and although it is expensive, time consuming, and uncomfortable, I can say I am so thankful I gave it a try! Overall, I have had thinning and my hair looks fried, but at least I still have it! Hopefully this encourages and assures all the newbies to cold capping because I know all too well how much anxiety there is the first round or two! Also...totally fake lashes and wax filler eyebrows in full use. My own are sparse and sad...ugh.
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hikerchic, you look amazing! What is wax filler eyebrows? I still have mine , using Brian Joseph's but they thinned ...
I am waiting for my # 10 Taxol infusion today. Puffy face, legs...:( How do we fight steroid based water retention? I guess there no way because I do Exersise regularly..
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Thank you! Cold capping works, but I'm also 27 weeks pregnant and think that is helping with the hair...not so much the breast mass though. The wax is a "filler" that colors in the areas where my brows have thinned. There is a powder that goes over the wax and it makes them look softer and more natural. I bought the cheap Rimmel product which is only $7 compared to Anastasia which is much more.
I have heard about steroids causing puffiness. I'm not getting them due to pregnancy; however, I do get extra fluids and the day of my ankles and feet are HUGE!!
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farmerjo, why would a facility not allow dry ice? Are they worried about somebody getting burned and holding the infusion center liable?
Hiker, you look so pretty. I can't imagine being pregnant during a time like this but then again, it can serve as a happy distraction. I've never heard of wax fillers. I might have to look into that. My brows are still so thin. I look so different than before I started chemo, even with hair!
I met a lady today who just got diagnosed. I told her I just finished chemo and she commented I must have cold capped. I told her it really does work if you are diligent and patient. Meeting her and knowing what is in front of her just made me tire
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Any past/present AC + T cold cap users? I would hate to spend so much money and have it fail.
I found a facility with a freezer on site - they warned me they have not seen great success with cold caps (Penguin) on this chemo regimen.
Thanks!
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Hikerchic you look amazing and god bless and good luck for the pregnancy.
Farmerjo: I have done 4 rounds of Taxotere Heceptin Perjeta ( stronger than weekly Tax I think. I have now done one round of AC and it's day 8 of the first round - they say the big AC shed starts by day 17-21 , since I am not following the conventional cycle I can let you know after a week or 10 days. I am optimistic though as there have been other women on the site who have done ok with this Regime not as well as TCHP or Tax it seems.
I think it is also dependent on the person and hard to say as there are no gurantees.
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Finished Taxol #10. Here is my funny photo to cheer everyone up.... I have 1hr 30 min of capping still today
P.s. it's not really how I look.lol.it's face change in Snapchat..but good change because my face is swollen from steroids anyway.lol
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farmerjo - do a search for member "angiel". She did AC/T and was successful. You could try sending her a PM, although I don't know how often she checks in with this site. Otherwise you can click on her name when you find her in the member list, and you'll see a history of her postings. It seems to be sort of hit or miss with AC/T - there have been cappers who posted here who lost so much hair that they ended their capping; others were successful (although still losing quite a bit of hair).
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farmerjo
I just had my 5th Taxol infusion today (7 more to go) and already did my 4 A/C infusions prior to T. I have had success and would definitely recommend giving it a try. I had chin length hair, thick in back, and thinner towards front, to start. I would say after my initial heavy shed after A/C #2 the shedding has been much lighter and fairly regular. A little increase in shedding after Taxol #2 but seems to be leveling off again. From what I understand from other posts if you can get to T #6 your hair actually starts to grow again. I haven't even bought Toppik yet. I have smallish bald spots above my ears but it is covered by hair. I also have thinning at the crown that is easily covered by moving hair over that area. My crown hair loss is much less that the above posted photos. But my thin hanging hair on the sides is not attractive. I am technically challenged and thus haven't posted any photos. I'll see if I can get something up because I have been documenting with my phone. Having hair has allowed me to carry on with confidence. It doesn't look good but its there. I have made it look nice for special occasions (maybe 3 times) using a lightly warmed curling iron that has a very low setting. Day to day it looks very scraggily and my little bit of gray bugs me. I had a mid chemo hair crisis about 2 weeks ago but pushed through and just needed to look at the bigger picture. I fully plan on capping to the very end and keeping with protocol as best possible. You can do this farmerjo! I have had girlfriends capping me. I am using the frozen bands. Good luck and just do it!
ILoveArt
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Famerjo
Angiel and Zinny also did AC +T and have posted photos.
ILoveArt
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FarmerJo - I did AC/T - dense dose, 4 cycles of AC, each 2 weeks apart, and 4 cycles of T 2 weeks apart. Based on the rest of my body hair, I definitely should have been bald, but thanks to PCC, I am not!!! I did shed a lot. I followed the PCC instructions pretty closely, though I did do lots of very sweaty exercise with a very hot head, and I skied and so wore a helmet, which both may have increased my hair loss a little.
I ended up losing what I would bet was about 60% of my hair volume, but not in patches, mostly overall. The amazing thing is that it also grew back really quickly. already I have about 3/4 inch of new hair all over. It has filled in underneath so that my hair has much more body again, and doesn't look thin.
I have a good friend who did not cap, and it took her at least 9 months to get that much growth.
I did not use the headbands, and did get bald at my temples. As well, I found the cap really cold and overwhelming the first/second time and did not use the extra band under the chin, which with my thick hair probably led to a little more loss as well - my hair definitely stayed thicker at the back than the top.
I have posted lots of pictures and won't bore anyone with repeats - but I do not regret capping for a minute!! I bought a wig "in case" and only put it on once for a special event - was like a costume!
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