Cold Caps Users Past and Present, to Save Hair
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Pamela thanks for photos! Helps us all so much! Hair Looks great. ❤
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Thank you everybody for sharing your experiences and support to help us in this journey. I really appreciate it. ☺
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thank you Pamela for posting your pics.
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I didn't dig back through as I only pop on here every few weeks now...but my counselor from Cleveland Clinic just told me that the FDA approved Penguin cold caps and they will eventually have them readily available with treatment (as I believe some of the other hospitals may do). It means so much less hassle on treatment days for women who choose to cap... and the possibility that in 5, 4, 3, 2 years(?) maybe patients won't have to loose their hair or at least not worry about permanent hair loss at all. I could cry. (And after going round with the big C 2x, I don't cry much anymore...)
Also ladies - PLEASE - cool your hands and feet with any of the Taxanes. I know a coworker's sister has permanent neuropathy and it's bad. Even if you don't do dry ice or name brand cooling mitts and booties...bust out those frozen peas and carrots. I have achy feet - started 6 months after treatment - in the morning almost everyday (for only a few minutes once I start moving it goes away) and I used the mitts and booties the second bout with Taxotere (didn't the first time with Taxol). So glad I did thinking how much worse it could have been.
God bless us all. You can do this! It sucks but you can!
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7of9
I was super surprised to see that your counselor from Cleveland Clinic said Penguin cold caps have received FDA approval. If you can confirm this with anything in print I would be very very happy to see it. I saved my hair with PCC through A/C + T. I am trying to be an advocate in the Pittsburgh area and want to stay up to date on this. I am PFC 9 months and I barely even think about my hair anymore. It's great. All of you will get there too.
Thank you,
ILoveArt
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I can't wait for the day I don't think about my hair!!!! Haha
That would be awesome for the next generation of cold cappers to not have to pay to keep their hair. It's expensive!
So thankful for all of you ladies
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7 of 9, I wonder if your counselor was thinking of the Paxman system, which just received FDA approvel (according to the Rapunzel Project website). It's something like Dignicap. I don't know if Penguin has applied for FDA approval - last I heard they weren't going to do so because it's an expensive process. For anyone just looking into cold caps, do check the Rapunzel Project website - they have lots of good information including where the Dignicap is available and which locations have medical freezers available (so you don't have to use dry ice with Penguin or Elastogel caps).
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I checked with paxman cooling and they wrote an email asking me information about my treatment, i asked twice the price and she never told me, because of the machine maybe it is very expensive and you dont have to use dry ice. I am not sure if penguin is better because it was the pioner and most of all the girls here said they had good results. If someone used the paxman please share your experience. Thanks.
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Pamela, your hair is filling in quick and your lashes are grown out all the way. My hair is thin all over but filled in everywhere no bald spots thank goodness buutvits so thin probably like half of what u have. But it's also cuz I started off with thin hair. And my lashes are still not grown in all the way. I can't wait also for the day where I don't think of my hair. My sons 8th grade graduation is June 2nd. I hope my lashes and hair go through a growth spurt before then
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My dad and cousin wearing my shirts a friend made me ❤️ My cousin is part of my cold cap crew! Could not do it without her
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MJPow - I love those t-shirts!!! And awww, you look like your dad. So glad you have such nice family support!
Finally posting some pics.
June 2016 - last year, long before this started.
February 1, 2017 - also before chemo but recovering from surgery
March 21, 2017 - about 2 weeks after my second round of chemo
Today: almost 4 weeks PFC
Have to give a shout out to my eye brows here and my daughter's eye brow make up. Also have Toppik on my head - medium brown. So happy to have the Toppik. I can't say if any hair has started to grow, but I don't think so.
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gokale, your hair is exactly like mine. Same length same everything. I had about an inch cut from bottom though like 3weeks ago because the bottom looked so thin and scraggly. In a few weeks when you feel your hair is a bit stronger you can put it up with a tiny butterfly clip
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I'm 9 weeks PFC and I just noticed I have hair growing back on my legs, it is about 3/8 inch long. I guess I haven't been wearing shorts. I've lost weight and I'm wearing the few clothes I have that fit and aren't huge on me. Except I'm wearing huge tops due to surgery 3 weeks ago.
And OMG, my eyebrows and eyelashes have grown back. I have such poor vision, I have to take off my glasses and get next to a mirror to see and it never occurred to me I had grown back eyebrows, I always had a few, now I have to tweeze my unibrow.
Nine weeks and my hair has not started to grow back except a little underneath my bangs. My MO said 12 weeks a week or so ago, due to the fact I'm no longer a Spring chicken. It is going to be hard to spot, because my hair is mostly brown and white will be coming back.
I have finally stopped the shedding from chemo. I think I'm getting normal shedding now. (also 9 weeks).
But I may be back in chemo, in which case I will lose my hair. I will find out in a couple of weeks if I got into clinical trials. I don't have enough hair to save and I can't go thru cold cap brutality again.
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hanging in-are you taking a hair supplement? I think viviscal is awesome. I also thought you had a lot more hair in you photos than I did at the end. Perhaps us ACT gals all shed at different rates till we are just so thin it seems impossible. For me that happened during mid TC. Maybe you hung onto yours a bit longer and it is falling now? Don't know just seems we are all different. So I started growing hair back in in the areas I lost it earliest. Maybe you are on a later schedule. Could be hormones too. I'm sure you'll be growing some thick hair very soon.
Mj and loves green- thanks so much for the photos! Love them!
I posted this photo with my visor because I like the way my visor covers my super stringy hair on the side. It kinda pushes my troll hair upward Covering the thin zones. Also hides the areas that were previously bald on that sides. I have done a blonde henna rinse. Losing just a few strands these days at most. 8 weeks pfc.
I posted my worst low point hair wise down below so if you end up there know it can still work! That's a teeny tiny clip holding all my bits of hair in the first shot. I love my old visor...without it the hair just hangs in weird ways. My eyebrows are making their first appearance I did not loose all of them only the from the center to midway. Eyelashes starting to come in too. Started on latisse
Day before my last chemo 8 weeks ago. This has all filled in with salt and pepper baby hair. Next photo is also today 8 weeks pfc
8 weeks pfc. Time flew by. I'd rather be blonde but I'll take all the growth! The Henna hides the grey!
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feeling low today. I am 8 days past chemo 3 and have one more to go. TC. I am nearly bald from ear to ear over the top of my head. I now also have a bald spot on the back of my head right in the middle and another to the side. My hair is so dry, stringy, thin etc. I'm tired of the worry and drama and being careful. I'm tired of scratching gently and "dislodging" hair in the process. I just want my old hair back but that could take years and years and just the thought of being reminded of this for that long is making me angry
I'm trying to wean off my klonopin so I can drive soon. Not working too well for me obviously.
This whole thing sucks. I still have 7! weeks of rads to look forward too. At least my hair won't be affected but I have no clue how I am going to get past this moody, pissy, sorry for myself phase without my meds.
On a good note it's beautiful today and I enjoyed watching my kids go in the pool for the first time.
Piss and moan session over.
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mquara-hang in there. Are you using toppik? I was so sad about my hair loss in my last days of chemo. I would do toppik regardless of weather i was alone or with people. It just helped so much not to see the bald. Helped me cope. If you hair looks like mine in the above photo you should be able to do some smoke and mirrors thing. Plus your hair is going to start growing and filling in the bald spots before you know it! You will be happier with it sooner than you think I'm guessing.
Hugs
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I have toppik but I have the aerosol one whic sprays wet. I think it was the wrong choice, it covers but after a day or two it starts itching and flakes so I hate using it and only rely on it close to wash day. I was told to drop down to washing once per week but out of stubbornness I am going with every 6 days so I am holding off on toppik use. I decided today to just buy the powder and the puffer top that goes with it on Amazon so it should be here Friday. Maybe that will be a better fit for me
I'm just feeling down and very alone. Nobody gets what this is like and if I complain about my hair the response is that I'm lucky I have hair. No I'm not. I'm lucky we can afford this and the technology is available. That's it. The rest is hard. It's painful, makes chemo longer, it zaps the energy out of you being cold for that long. It's hard not washing your hair every day, not brushing it, styling it. It's hard when you oh so carefully comb but you still shed every day. It's still hard to feel good about your appearance through this. I am thankful that it's available and would do it again, but there's nothing lucky about this whole thing.
Ok I'm really done now lol. This is why I tell my husband when we get to CTCA I feel relief. It's because I am surrounded by people in the same situation. They get it and there I'm not alone. Ditto here.
Hugs to all of us today, even if you're not having a bad day like me. ((((((((((((hugs))))))))))))
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elastogel girl. I'm taking viviscal. I don't think I'm shedding anymore but a little hair comes out when I comb. But not the shedding I had 3 days ago.
Mquara. I feel the same as u about babying my hair. I so want to wash in the shower and then brush it. Do something for yourself. Be good to yourself.
Hugs to al
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mquara, I feel u all the way. Sometimes I feel like it would have made me feel more free just going bald but I was afraid of the possibility of permanent hair loss with the taxotere. But I too wanted to say screw all this with my hair. I still feel this way. I'm hoping soon I will not even have to think about my hair or lashes. Until then I pray for quick regrowth
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MJPow--LOVE the T-shirts! Thanks for posting the photos of yourself, your Dad and cousin. You and your hair look great!!
Pamela23--You have so much new growth! Did you color? I don't know what I would have done without your recommendation of the Loreal spray.
GoKale--You look terrific! Thanks for sharing--we finished chemo about the same time. Friday will be 4 weeks for me.
Elastogelgirl --So happy to hear that you continue to see new growth!
Mquara--I too get so tired of the "babying" and just wish I could color, blow dry, flat iron instead of looking in the mirror at the frizzy, curly headed person that doesn't look like me. But you have hair! And it shouldn't take years to get back to where you started. I think you will like the new version of Toppik that you've ordered. I hope tomorrow is a better day, and you are always safe here.
L
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MJPow, your hair looks great! I've had one AC treatment, three more to go then Taxol. I used Dignicap and am hoping for the best so its encouraging to see your results.
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Cold cap users...are you using hairspray? I've only had one treatment so no thinning yet but my hair needs hairspray! If using one, what is a good one that would be less damaging to hair?
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Mquara...oh girl... I'm right there in piss and moan city with you. I had hair past my shoulders and now have bangs and then some lonely strands hanging in the back. I am way too bald for toppik... It looks like a pile of dirt on my head. I am rotating straw hats every day. I refuse the wig. I am almost 3 weeks PFC (4xTC) and I hand my husband a magnifying glass every day to look for sprouts. Nothing so far. I'm taking the viviscal but I think it will be several weeks before I see signs of life. I'm miserable. i think hats are going to be in my life for a long time. I don't feel like I will ever be the same. Argh
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I had my first chemo treatment on Momday and used the cold caps for the first time. All went well except that I had terrible nausea and vomiting from the caps during the entire seven hours of use. I know it was the caps because it started as soon as I put the first one on--even before the pre-meds started-- and would rise and fall with each new cap. It stopped as soon as i removed the final cap. I am desperate for a solution. The medicine for anti-nausea didn't help
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Thanks, ladies for the kind comments on my pics. I forgot to point out that I did not start off with a thick head of hair - I wore it shoulder length to help with the fullness. So if anyone down the road has a similar head of hair and wonders if they should cold cap, they can see my pics and decide. I did it because of the Taxotere. If I had been on a less intense drug, I might have skipped the cold cap.
Elastogelgirl - love the visor pics! You are creative with your head coverings. But I think you are regrowing a nice head of hair.
Hanging In - I, too, am checking for other body hair - any sign of life, so to speak. Hooray on the eye brows and lashes.
Hopfull - thanks for the suggestion. I decided a while back that I would be satisfied with a cute short hair style when my hair gets stronger. Maybe something that will grow back nicely.
Mquara - Regarding the babying of the hair - I agree; I am tired of it. I never dreamed it would be this much work. I do love the Toppik powder. It is so easy to use and I look much better with it. Hang in there. Someone said it won't take as long as you think for your hair to grow and for you to be happy with it. I agree. Based on what a handful of recent posters have said and who have done similar drug regimens, I am hopeful that I am just a few months away from great improvement. I try to distract myself with reading and sports on tv and just normal conversations with friends and family. It's just easier not to think about my hair.
Fastgirl - so cool that we finished the same time. Were you on TC like me?
SoniaL- I can't advise on the hairspray. But welcome and good luck with everything.
LowCountry - I had to LOL about asking your husband to look for regrowth. That's my husband's job, too. He doesn't love it because he doesn't want to tell me that he doesn't see anything. He's taller than me so he can see it better than me. You and I are nearly on the same schedule with the same drugs.
EmHaich52- Sorry you had so much trouble. Are you drinking lots of fluids days before chemo? Eating breakfast before? Maybe let the cap get a couple degrees warmer?
Take care, everyone!
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amapola,
I think you should wait until the shedding calms down before you cut it. I know it's so hard and you want to get on with it. Patience, I did the henna rinse this i was so worried I would have regrets. I only went for it because I stopped shedding way early. Turns out it hardly made a difference color wise. Fortunately I did not lose hair but even though mine looks good in pics there is just not much left up there to lose.
Anyhow I say Stay with the program. I feel that if you are still shedding it is too early to mess with it. Time will fly by and you will know when you hair is back on a track. I so want to color mine but I'm more interested in getting some healthy growth. Can you get by with a silk bandanna?
Hanging in ---so you've stopped shedding yay! That's a milestone. It's hard to see new growth at first but you'll start to notice any bald spots disappear very soon! The new hair is like baby hair on me was whispy and hard to see then boom you have coverage!
Hugs e
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Hi everyone! I am new here. I have read your posts and they are very helpful. You are all so sweet. It's sad we all have to go through this mess. I am on 4 cycles of TC. My first infusion was on 4/18/17 and my second one on 6/9/17. I am using Penguin caps. Penguin caps referred me to one of their cap assistants and he has been helping me. He charges $350 per infusion. I thought I was doing everything right, washing my hair twice a week, until day 20 when I washed my hair and shed "big time". Then I washed my hair three days after my second chemo and had a "huge" shed again. I stopped washing my hair since a week ago and I will try to wash once every cycle, 3 days after chemo. I may have made a mistake, but I cut 3 inches of my hair a week ago. I have lost about 50% of my hair so far, mostly during the last two times I washed it. I am afraid I will only have a few strands left when it finally stops shedding. Heavy shedding for me stops two days after I wash my hair. I was wondering how often do you girls wash your hair?
Good luck to all of you, pray for your total health and hope your hair grows back VERY QUIKLY!!!
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emhaich- I too had severe nausea and vomiting I ended up in the ER 3 times through dose dense AC Just looking at the caps made me nauseous.
We tried all kinds of nausea meds and finally on the 4th capping I took one Ativan an hour before which helps with anxiety but also on nausea also a pain med that the doctor prescribed then I took a olazapine during pre meds an also something called amend that's not the right spelling but if you ask your doctor he will know lol. I never made it 4 hours after the first was 3 hours 15 min before I tore off the cap and threw up. The next couple were closer to 2.5. I swear that amend and olazapine were life savers. Even on my taxol I am doing the same as now I have anticipatory nausea which means my body anticipates and I get sickness before chemo.
You can do it make sure you ask for those meds!!
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cali- I washed my hair once a week. My infusions are on Wednesday and I washed on Saturdays I had 2 weeks between infusions so I just washed every Saturday. I was worried all my hair would be gone after day 21 my big shed. It still came out in handfuls for a couple weeks. Just now starting taxol it seems much less thank god!!
Hang in there! I know it's so frustrating and hard. I also braided my hair daily because it got so dry and tangled. It is finally feeling softer on taxol
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hi cali58, I was on the same chemo regiment as you. My last one was 2/23/17. I would wash my my hair 2days before each infusion and on the 3rd day after each infusion per the penguin rules. You mentioned your chemo was 4/18 and the next one is 6/9. Why is it so far apart. I was on TC x 6 every 3weeks. I had my big shed afternoon MTV 2nd treatment and shedding slowed at about 6weeks PFC. Good luck to u and hope you recover through each treatment smoothly.
Hugs.
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