Cold Caps Users Past and Present, to Save Hair
Comments
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Well, today was a hair wash day. Round 5 was 11 days ago and 1 more to go. Had a big shed - wasn't anticipating this much shed. I think i now have maybe 20% of my hair left. It covers my head but is soooooo thin. I am losing hope on these caps. I can't imagine keeping hair on my head with daily shedding and 1 more tx to go. Ugh. Crazy thing is I think the hair loss is the hardest part for me, as nuts as that sounds.
Curly0 -
I think losing our hair is why we are all here. We all know how important it is. Hang in there. Maybe its not as bad as it seems.
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Curly it seems SO thin because we cant wash it properly while using the caps. It is just so lank and pinned to the scalp.
I also thought I had lost a lot more than I had. I could see my scalp in some places, but used the toppik fibers to cover. The top of my ears showed through the strands,and my part was extra wide- also covered nicely by the toppik fibers.
But once I got through the last round (a month later, when I tok my avatar picture), I dared to use a cleansing shampoo with warm water and to rub my scalp just a bit. The hair really fluffed up and I realized that I had retained much more than I had thought. It had just been so limp and stringy.
You have prevented the majority of the toxins from getting to your hair follicles so the hair will grow back much faster than if you hadn't used the caps, as well. The new growth that I have is about an inch and a half long, but I am still waiting for eyebrows and lashes to come back, 4 months PFC.
Hang in there!!!!!!!
Hugs0 -
Does anyone know how quickly the Rapunzel Project would get a freezer to the chemo clinic if they said yes? I'm only the 2nd patient at the hospital in Milwaukee who has used (or is using) the caps. Not sure if they'd few it as a "necessity". I think I'm prepared for this. Trying not to stress too much. I still can't find any video or photo footage of anyone using the bands for their eyebrows. I really wanted to save mine (they may be my favorite part of my face). I think I'm going to take every side effect as it comes - and not buy too much.
Has anyone ever heard of NOT getting the steroid during chemo? Just curious. I'm very anxious to take it.
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I do not think you are really supposed to use them on your brows. Check their instructional email when you ordered. My thinned about 2 months after chemo. I used brow pencil and then medication....Latrisse. they filled back in about 2-3 weeks but the prescription was not covered by insurance and was $120 or so. You are not supposed to usE it during chemo. They grow back darker but return to normal color a month or so..
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I've heard a lot about that Latisse. Hope it'll work for me.
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Hi Annie,
The brow bands would be too cold to bear in my opinion...I tried one only out of the freezer and I would have never been able to do it. I never lost brows or lashes, they thinned a lot but then I started to use Latisse the day after my final chemo on both areas and within 2 weeks they were mostly back to normal...they grow back very quickly. Some MOs will let you use the Latisse during chemo but I had a bit if dry eyes that also watered so I held off. Good idea about the SEs...set your mind to not having any and take it as it comes. Your first round will be very predictive of the rest . To be proactive, I would say HYDRATE before...I drank a gallon of water the day before and then day of and 3 days after. Also a good probiotic can make sure your gut is healthy as well. I really had no bad SEs, I hope the same for you. Good luck with the caps-you can do it!0 -
Curly, hang in there, you're almost done! I know it seems like a lot of loss, but I hope it's less than you think. The average head has 100,000 hairs so to get to 20% you would have lost 80,000 hairs...I think it just seems like thousands, at least that's how it felt to me,but when I did the math, it didn't seem possible. Keep at it and soon you'll be on the other side, with hair! Hugs to you!
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I know positivity is key but someone knows when they've lost 80% of their hair. For example, my ponytail was the width of a silver dollar pre-chemo. At the end, you could count the number of hairs on my head. But it was an even shed... Lol. Yeah and Arizona is a dry heat. Cold caps work well on women on CT chemo and I'm happy for those women. But please don't diminish the trauma of losing that much hair for those who used the caps unsuccessfully. I know it is meant to be encouraging but it is soooo hard to try and fail to save your hair.
On another note, my bank and attorney general were really helpful in dealing with Penguin after the fact.0 -
Another product you might want to check out for eyebrows and lashes is Brian Joseph's lash and conditioning gel. It is meant to be used daily during chemo to save lashes and brows. I can't vouch for its effectiveness since I didn't start using it until after my second chemo treatment. My eyebrows have thinned but are still holding on so far. I'm only 10 days PFC so they may still fall out completely. I'm sure hoping they don't.
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Curly, I'm sorry the caps have not worked as well as you hoped. We all have such high hopes tempered by anxiety when we begin the cold cap process. It must really be distressing to lose that much hair after putting so much time, effort and $ into the caps. I guess just focus on the hair you have left and know that the finish line is in sight. We're still rooting for you and we're here for you.
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Curly, I'm sorry the caps have not worked as well as you hoped. We all have such high hopes tempered by anxiety when we begin the cold cap process. It must really be distressing to lose that much hair after putting so much time, effort and $ into the caps. I guess just focus on the hair you have left and know that the finish line is in sight. We're still rooting for you and we're here for you.
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anniej76, I basically told my chemo center I would find a center that would accept a freezer if they did not want to accept it. They finally gave me the ok. It took a couple of weeks to get the freezer to my center. That was back in 2011 when Penguin did not have as many customers as they do now. (Rapunzel coordinates with Penguin on the freezers.) I postponed chemo for a week or two so I could use it. I would contact Rapunzel A.S.A.P. and ask them for a time frame. Even if you cannot get it in time for the first treatment, you would have it for subsequent ones. Don't forget that Penquin needs to know what you will be using because you will need about twice as many caps if you use the freezer. The rental fee was the same, regardless of how many caps you need.
I cannot imagine using the gel bands on the eyebrows either. I think it would be intolerable. I filled in sparse brows with eyeshadow. No one could tell.
curly, I pray the shedding is not as bad as you think and that your hair will grow back quickly.
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I used the eyebrow bands. My helper put moleskin on my forehead to protect it from them and we tried to tip/pull the bands down over it so that they would be in contact with my brows, which wasn't so bad cold-wise, but I often found that they were not in contact, so I ended up losing almost all of one and most of the other. They grew back fairly quickly. I am not sure how long the regrowth took because as I look back so much of that time seems to be a blur, but it seems to me that I was browless for about a month.
As I am already so pale, without brows to define my face I looked like I was going to fade away. I hadn't realized how important eyebrows are until then.
I did not want to use Latesse as I have light blue eyes and Latesse can turn light eyes brown permanently. That risk was not worth it for me. I like my pale blue grey eyes.
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CURLY!! I'm soooo sorry to hear of about your hair loss. I imagine you feel devistated. The worst is that you feel yukiy anyway from the chemo and this isn't helping you any. What kind of chemo drugs and how often are your infusions? I've heard that the caps work better with some drugs than others. Hang in there Hun when all this is over you'll be done with chemo and you'll have beautiful curls again soon. Lots of love to you!
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jc, hope and schoolmom - thanks for the support. I really appreciate it. Yes, schoolmom, you can see my ears through the strands...ugh. I know there is nothing I can do. Whatever is going to be is going to be. And if i do lose it, which i would hate, i don't see it as a total failure. I did manage to keep enough hair throughout chemo, and for that, I am still grateful. And I sure hope it is true that the re-growth will come soon; sooner than those that hadn't used the caps.
Thanks for the support ladies - am routing for those of you still going through it!!! And am so happy for those of you that kept your hair. It is wonderful for those who it works for.
Txsockmonkey - did you actually get your money back after using caps for all of chemo? Even though you kept hair during Tx? The good news for you is that your hair is now back and it looks great!!!0 -
Leslie - thanks. I am on FEC-D. I only read about the lady who started this thread going through that cocktail on the caps. She posted her pic and was noticably thinner, but wow, her after picture is amazing! Beautiful curls when all was said and done. My understanding was that on my regimen, it was a 50/50 shot. I have 6 infusions; once every 3 weeks. The last one in 1.5 weeks. Like I said, i don't see it as a total failure, but it is definitely hard looking in the mirror and knowing what is missing. i find it very difficult. I tried on the "just in case" wig yesterday, that i bought before starting TX, and it just feels so fake. Obviously I'll have no choice if there is more significant loss, but i find it difficult to wear it, mentally. The funny thing is, my hair was so thick and lush and BIG, the wig is BIG, and when I put it on, all i can think is...wow...this is too big! Amazing what we get used to/forget in only a few short months. I forget what it's like to have that thick hair.
thank you ladies - it helps to have your support.
positive hair vibes to all of you!!!!
xo
Curly0 -
hi girls
i have my first chemo tomorrow. a bundle of nervous!!!. ive been reading your threads and it has helped knowing im nor alone!
curly im sorry you are loosing your lovrly curls. but it will come back lovely!!! please post picturers when irs back. i too have thick hair and am not sure if I will lucky to keep my hair but I pray I do!!!
This is all sooooo hard!!!
I send my prays and love to each of you.
Xxx
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curly - hang in there. i KNOW this is tough. I'm on TC and I've lost a ton of hair. I would say about 50% so far. I started heavy shedding way earlier than most, around days 11-12 PFC. Usually people report heavy shedding after day 21. And wash days? Forgetaboutit. Can't help but wonder what role if any my larger than recommended first dose of chemo drugs had to play in this.
I'm hoping to get to round three with hair - but am not holding out much hope that there will be any left for round four. Like you I'm just hoping that maybe it'll grow back quicker and that I prevented some damage to the follicles.
fab1 - sending many good vibes your way.... try not to stress - round one will be over before you know it!
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Hang in there Curly and Kay! I can imagine how tough it must be but I am convinced that the caps help significantly.
I have round 3 out of 4 next week and major shedding stopped a while ago. I think I wound up with a lot of breakage and that my hair will be shorter when this is all over, but what I have left- I would say about 90%- seems to be hanging on pretty well and pretty strongly. I keep my fingers crossed, because everything could change, but if I am in this position after my last treatment I don't think I would wait 6 months for a relaxer. I'll start out with my regular shampoo and conditioner after a couple of weeks, move on to warm blowdryer and flat iron and see how it goes. I don't know how to explain it, but what I still have seems really tough. I want to take a good look after radiation is over and maybe get my hairdresser's opinion.
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curly and kaydee, sending you big hugs and best wishes what you've got stays there! I know it's a tough regimen but we're all rooting for you.
fab1, I know it is nerve wracking but just think after your first one you'll be on the way to the chemo finish line. And we'll be here to help you.
tmb, way to go. I too, have tough hair, and still shedding 3.5 weeks PFC, but have flat ironed my bangs (on coolest setting possible and super quickly) and even flat ironed my top layer quickly and on coolest setting on my husband's birthday. I wash almost daily now, but no hair dryer (unless on cold) and no color except ColorMark. I think I'll try Clariol Beautiful (no peroxide, no ammonia) soon. I bought it but need to work up the nerve to try it.
Ladies north of the border, Happy Canada Day to you!! Hope you're able to enjoy the day.
Also, my oncologist called and asked if I'd be willing to talk to a new patient of hers who wants to do cold caps and my surgeon is researching cold caps so she can refer women in the future. Hopefully this is a sign of things to come for all people who want an option to try to save their hair.
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All,
Just wanted to share my experiences with some stuff, in the hopes it helps someone else out. I went ahead with Chemo Cold Caps (http://www.chemocoldcaps.com/) and MAN I am glad I did. They have EXCELLENT customer service, the owners (a BC survivor herself) went so far out of their way to provide personalized service I was amazed. It is a turnkey service, meaning they provide everything, from caps to cooler to gloves to moleskin. They have some customer coolers, so filling the ice (which is also delivered as part of the service) is a breeze. After some experimenting, they developed a custom strap for the Elastigel caps that clamp them down like a PCC, in my opinion (I tried both on). Honestly, I don't know how they can provide such individualized service. I don't work for the company, but check them out.
For what it's worth, I did 2 BIG cycles of Taxol/Carbopltin (175mg Taxol), spaced 3 weeks apart. Two weeks prior I started taking 1000mg of silica and 10000mcg of biotin. Now, I recognize that I may be the 1%, and things may go south at any time, but I have virtually all my head hair, all my eyebrows, lashes, arm hair, leg hair, etc. Some thinning in the unmentionable areas, but if it has to go....5 weekly Taxols coming, but only at 30mg, so who knows. So far, so good. Hair growth has slowed, but not stopped. The longer ones are coming out faster than "normal", but not more than 20 or so at a time, if I comb forward. Usually I can count on both hands the results of any post-comb effect. I am at Day 40 from the first infusion...
I know that the caps only should have protected my head, so maybe some other combination of supplements and genetics worked so far. But the CCC service was beyond excellent. I am going to use them for my weekly treatments for sure, better safe than sorry. I really can't say enough about how organized and efficient they are in getting you what you need, and always there checking in and seeing how you're doing.
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Hi everyone-
So I had my first chemo treatment today and with using the cold caps. It went a lot better than I thought it would. I am using the dry ice method so I have my helpers to thank for being so organized...they were quite the well oiled machine!! I am still nervous and wondering if we did everything right and if the caps are going to work for me but I guess time will tell! I keep reading all of the shedding horror stories and I worry because my curly hair is already so short I worry if I am going to have any hair left by the end of treatment:( but I am going to keep thinking positive!! Next infusion of gemcitabine and taxotere is next Monday. Fingers crossed:) oh and I am dreading my first hair wash on Thursday...double yikes!!0 -
Wbk79 - good wishes for success! Just treat your hair as if it is super delicate right now, because it is. No warm water. No scrubbing, rubbing or putting any tension on your hair strands. Pat the shampoo on and through it gently, try not to run your fingers through as you usually would when washing it. Rinse it gently also. I know it's a bother, but it's necessary. You probably won't lose much during your first shampoo. I didn't, although I was on a different chemo regimine than you are.
Kaydee - It sounds as if you are between your second and third chemo infusions, and are not yet PFC (Post Final Chemo). If that is so, then you are at the point where many experience the most shedding. It will let up as the oldest hairs shed. I lost the most at that point and it was unsettling, so you certainly have my sympathy. Although I lost about 30% by the end of my treatments, I always had full coverage and what I lost has come back in very quickly. Are you on T/C or ACT?
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FINALLY after 4 previous misqueue's with Cold Caps and the bio medical freezer at my infusion center I came this morning to find everything working as planned. Such a relief as this may end up being my final chemo. My onc met with me this morning and said because my PET CT showed no active cancer and that my bones with cancer are healing there may be no need for the last treatment, especially since my last recovery period was much longer and my blood levels much lower.
So I am writing with this with cautious optimism that this might just be the end! Will know more after I return from vacation which starts this Saturday. I am so excited that I have kept my hair, despite all the proglems with CC and so happy I may stop chemo after today so I wanted to share. YAY
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Hi all
I've just had my first round of chemo. One down 5 to go. The first experience was not bad, although I cried a few times. Now at home resting and trying to stay hydrated. Now waiting to see what the next few days bring.
The cold caps were uncomfortable but doable.
thank you all for sharing your experiences so that non of us feel sooo alone.
Susieq thank you for your encouraging words. I pray we all pass this journey with no or as little side effects as possible. Hugs and xxx to each of you.
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Fab1 - way to go! You got through one! I know the emotional roller coaster all too well. I did well through most, but cried almost all through my 4th one. Just couldn't help it. So I know how you feel. This isn't easy. Here's hoping you keep all of your hair!
WBK - good luck! Sending positive thoughts your way!
SusieQ & tmb - thanks for the support.
AmyQ - here's hoping you are done!!!!
xo
Curly0 -
Fab1
Congrats on finishing your first one. I too had been scheduled for 6 but due to the early good news that my PET CT showed the chemo killed the cancer and that there was no more active cancer anywhere. Therefore, I have been able to cancel my 6th treatment! I am so relieved. I'm sitting at the cancer clinic finalizing the last 500 cc of saline and waiting out the last three hours of cold caps but feel like a new person.
So my point is you never know if you will be given a gift like I have. In either case, I recommend keeping a journal of your side effects and the day they appeared. Keep note of foods that tasted good and how you digested them - in other words what agreed with you and what didn't. This will help you to know what to expect for next time, although I've heard chemo side effects can be cumulative. I know mine were after the fourth. Good luck to you and I hope everything is goes well with the cold caps and SE.
Hugs -
Amy
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AmyQ, that is FANTASTIC news - congrats!!
Wbk, I went through the same thing. The caps were so tolerable to me that I panicked we didn't do it right. Now here I sit post-chemo with a (mostly) full head of hair. If your temps were in the right zone you should be fine.
Fab1, wishing you no side effects and quick healing!
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SusieQ - Thank you!!!
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