Cold Caps Users Past and Present, to Save Hair
Comments
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Yay for the "all clear" Hortense!
hope, I used DermOrganic shampoo and cond. as well. Also used a claw clip, making sure it didn't pull, with no ill effects.
Dancingthru, I took 1 Alieve on treatment day.
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Dancingthruit - It sounds like you may have gotten frostbite ("I felt extreme cold pain at the top-back of my head and it has been tender to the touch ever since.") If your hair has thinned a lot, this is a real possibility. The fact that it is still tender to the touch would go along with this.
For your next sessions, you may want to consider using gauze strips to protect your scalp. I did this for my last 3 sessions after getting frostbite on the top of my head during session 1. It made a real difference. The caps were cold but not excruciatingly so. BTW, the frostbitten area did eventually flake off - taking hair with it. This occurred over a 10 week period of time. Fortunately, I was able to 'comb over' the bald spot. And the good news is that it's growning back pretty rapidly.
Best of luck!
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saw my MO today...he said 3 times how he just can't get over my hair...he asked if I've lost any, which made me feel so good Sinepce I just went through some major shedding.
Hortense...great news!!! So happy for you.
qrex, welcome to the group! I am also doing TC X4, with my 3rd treatment this week, and so far so good! You'll do great. Your husband sounds like mine...he is really on top of the process, and I know it makes him feel like he can actually do something to help me in this crazy situation. I love having him there with me.
meli, good to hear from you! I had the same big shedding after tx 2, but it has slowed down...today when I combed it, I didn't get any hair in the comb! Hoping it keeps to a low level as I come out of tx3 this week. You'll do fine, keep the faith. I'll bet you've lost less than you think, but I know it feels like a lot. With an average of 100,000 hairs on the head, it would take a lot to lose 1/2... That helps me keep it in perspective. I love what ladygrey says, "you're not a special snowflake" LOL that has become my mantra when the shedding happens.
Thanks, dancingthruit I feel better using the clips now. I can't believe you are going through this with such a young child and the dance classes...amazing!
Keep thinking cool thoughts, everyone!0 -
dancingthru, I forgot I wanted to recommend a thin 'actors' wig cap...this was what my consultant advised if it got to the point where the hair was very thin on top. I think you can get them at a beauty supply shop. Just be sure whatever you do put between your hair and cap is very thin so you will still get the contact you need. And as others have said, be sure to wipe down each cap before it goes on to keep the frost away. Good luck!
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I AM GOING TO USE ELASTO-GEL CAPS. I ORDERED 5. JUST TRIED ONE ON. I HAVE A BIG HEAD AND NO WAY WILL I GET ADEQUATE COVERAGE. SOMEWHERE IN THESE POSTS I HAVE READ ABOUT GEL STRIPS. WILL NEED TO GET SOME TO USE ON NAPE OF NECK AND MAYBE ON 'SIDEBURNS'. IF YOU HAVE INFO ABOUT GEL STRIPS PLEASE SHARE INFO.
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forest, hopefully someone with more knowledge than I will chime in here, but as far as I know the gel bands that people have mentioned are rented through the Penguin cold cap company, and probably would not be available to you if you're not using the Penguin caps. There may be some other gel bands available through other sources - maybe search online or at Amazon. When do you start treatment?
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I just had my last round of chemo and penguin party yesterday. Woohoo!
Good luck to everyone!
Next it will be on to the surgery, then radiation, and continue herceptin for the full year. But today i am just happy to be done with the chemo infusions. One day at a time.
My hair is still here mostly. No hair covers needed. I did use the teeniest claw clips to keep it out of my face- the little quarter inch ones. i think it helped. They are not heavy enough to pull on the roots.
I have some thin patches and the Toppik fibers (which i had applied for work and could not wash out prior to the cold caps- too close for a wash) seemed to be enough to prevent frostbite, for my last couple of rounds. I did get a frostbite patch on my forehead where i didnt want to put the moleskin right up to my hairline, so i know how painful it is, my condolences to those who have suffered.
I also had ordered the elastogelcaps and i have a huge head, no possible way could i have gotten them on. They really dont stretch much when frozen on dry ice. I ended up with the penguin caps and the gel bands- coverage was great, i could not be happier. i used the elastogels to ice my toenails- they did fit my feet and a bag of peas.0 -
Sciencegal - hooray for being finished with chemo, and keeping your hair! Good luck with your upcoming surgery.
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forest, PatinMN is right, as far as I know only Penguin has gel bands. Penguin caps also work better. I helped a lady who used Elastogel and I can tell you they are very ill fitting, especially hard to mold to the head when frozen. Do you have time to order Penguin instead?
sciencegal, Woo-hoo! Congrats to you
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I'm bringing penguins cold caps to the infusion ctr, but I can't use an electric blanket. Should I layer, I have ski underwear with reg blankets?? The cold caps are all set. Will bring frozen peas for icing fingers. Any tips on the mole skin. How close to the scalp do I place it? and where exactly? Thx everyone
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The nurses at my center brought me warm blankets - as often as I needed them. This was great - and I managed with a skirt and sweater. I had no port so did have an IV in my arm. A skirt made it easier to get to the bathroom.
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Shasha, I wore long underwear, sweat pants, flannel shirt, zip-up fleece, had a heated lounge chair and an electric throw.
Better to have too many layers than not enough!As for the moleskin, per my expert advisor, Susan, we put the moleskin close to the hairline, but there is an area around the hairline with little baby hairs that you want to protect too. So Susan cuts up a pantiliner and sticks short pieces onto the moleskin, extending out further to protect the baby hairs (and the skin). Make sure you just cut off a little of the moleskin backing - just enough so that the moleskin sticks to your skin but you don't have the entire piece stuck to your forehead - it's painful enough to pull it off at the end of the day when just the outer edges are sticky. I didn't use anything to cover my ears - my hair did the job.
Good luck!
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Shasha - why can't you use an electric blanket? Bummer! I would layer and bring blankets with you. Good luck!!!!
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My Dr OK'd the cold caps but they don't have room for the freezer and I was told no electric blanket. I'm hoping if this works they will be more accommodating. I may bring the blanket anyway and see once I get there if they let me use it. My husband decided he wants to stay, even though I have my sister. I thinks he feels he needs to do something. I'm off to pick up meds for next week.
Had an awful encounter with the pharmacy on the phone yesterday. I'm not sure how this is suppose to work, but my dr. calls the prescription for the chemo to a pharmacy that gets it approved by my insurance and confirms with me before they deliver it. (they are not local) They messed up my name and there was a lot of back on forth with my dr.s office for the past 10 days. Then I received the call, to call them that I need to approve it. The idiot (at the pharmacy) and I mean idiot told me I was too late and couldn't have it till Tuesday. I'm at work. teary eyed I said I want your supervisor. She replied that it was too late and speaking to her supervisor wouldn't help. I said give me your supervisor I have breast cancer,(something I never thought I would do) I can't believe your doing this to me. While she put me on hold, my dr's office called me (this is on my cell) It is now after hours, and I was so appreciative to hear the dr.s assistant on the phone saying she straighten it out. I told her I was on hold and asked to remain on the line with me. Then the idiot returns with a different attitude saying she spoke to the supervisor and it was approved for overnight and my dr.would have everything in time.. The assistant took over and made sure everything was correctly finalized. It was done.but I couldn't believe that I had to deal with that. Has anyone had to deal with something like that?? I'm surprised that I have to be involved when they order the chemo.
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Shasha - that is CRAZY wrong. Nope, never had to do anything for my drugs to be ordered. My onc's nurse took care of it all.
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It just got worse. The chemo is delayed because of this screw up. I just put a call in to my onco. I'm so upset.
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sciencegal, congrats on being finished with chemo and the caps! Best to you as you go on to the surgery...keep us updated on your hair
I just finished round 3 of 4 yesterday and all went well. SOOOO cold btut I know it will be worth it. We added 20 more pounds of ice this time as we've noticed that when we were starting to re-use caps 1-4 they were not as cold and we had to get them on the ice itself (wrapped in paper) to chill them. The extra ice worked like a charm...my husband just chunked it up and put more around all the space in the cooler and that did the trick. My shedding has been very low this week, so I'm hoping it has slowed down for awhile.
shasha, I agree to bring the blanket and then be firm (but nice) about using it. I know when I went into surgery I wanted to wear my ipod so I could listen to positive imagery while I was out...everyone told me no until I spoke directly to the anesthesiologist, who thought it was no big deal...I told him it was something I felt strongly about and he said no problem. I think sometimes you just have to assert to the right person...in any event, if it's a hazard or something, then they should be able to get you warm blankets...and yes, layers! Even if you do use the elec blanket. Best of luck - I think you are Monday??? And PatMNM is right on abour the moleskin...I used the same consultant and the same steps,. Have someone trace a pattern first on paper that you can use to cut the moleskin from the roll and then as Pat advises, only cut about 1/4" of the backing before you stick it on that's all you need and you could then cut more off for the next rounds so you can reuse that same piece if you need to. I did end up with a bit of frost nip the 2nd time, so attached a thin piece of gauze this time at the top of the moleskin to cover but still allow good contact - worked great.
forest, it is hard to give great advice on the Elastogels since most of us use Penguins...for what its worth not evryone gets the gel bands and they do lose hair in those areas most commonly and it is at least easier to cover up. I didn't get the gel bands until my 2nd round hoping to just keep what didn't shed and encourage new growth in those areas...not sure if you can just rent the straps but I think its worth looking into if you call the number on the PCC website. Also, I know AreleneA and Torigirl were both successful users of Elastogels that I've read about on this board, so perhaps you can Private Message them to see what they have to say??? Good luck!
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I FOUND THESE THINGS CALLED ICE SNAKES. THEY ARE STRIPS OF WATER IN PLASTIC. LOOK LIKE RAVIOLI. THEY CAN BE CUT TO SIZE. I NEED TO USE 9 INCHES TO COVER NAPE OF NECK. WHEN I GET MY SUPPLIES I AM GOING TO PRACTICE. THANKS FOR YOUR COMMENTS.
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Good luck, forest! I think if you follow the penguin protocol with the Elastogels you will do well - the other 2 ladies I mentioned did. The water in the snakes may react differently to the dry ice so I'll be interested to see how it works. Let us know how it goes!!!
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Mdg-I did not have any push back from my MO, I had two, one as a 2nd opinion, and they were both intrigued by the caps and are curious to see if they work. I ended up going with the Mo at a big cancer center with a University and she said of the maybe 1000 people she has seen in her clinic, there may have been 2 that had the scalp met, but they didn't use the caps. She is not worried about it a bit. I like what LadyGrey said about "stop asking and start telling." Chemo is huge money and if you have an MO that won't allow you to use the caps, than go get another one that will.
Dancingthru-thanks for the advice about the low bun and the claws and cooling the head down. I know what you mean about messing with it when it is down. My hair is long and thick and it feels so vulnrable just hanging there waiting to get caught in a zipper or when I am putting on or taking off a coat. I have young kids too and I have one of those giant Mom purses and whenever I put it on my shoulder, it would land on my hair and starting getting too nervous having it so vulnerable!
Shasha10-I am so sorry to hear you got delayed, that is frustrating! Regarding the heating blanket, I bet someone will take pity on you and help you get that plugged in, if not, maybe one of those bigger sized heating pads? I use that for my back and it heats up pretty good.
Regarding mascara, for those that do use it. Have you ever heard of Kiss Me mascara, you can get it on amazon. I have been using it for years, because it coats your entire lash, looks great and becomes stiff on the lash so it doesn't smudge. Then the best thing is it is SO easy to take off, no rubbing or soap needed. Just pat lightly with very warm water on it and it comes right off and looks like these little tubes in the sink, because it formed around the shape of your lash. But don't freak out, it looks like lashes in the sink, but it is just the mascara...hopefully! Also, I saw the Anastasia brow kit mentioned somewhere. Again, I have been using that for years and love it! It looks very natural-buy it Nordstrom's.
Hortense-thank you so very much about the specifics on icing. I didn't my 1st and had some pretty painful tingling in one finger tip. My nutritionist recommeded glutemine powder the day of chemo and the 4 days following to help with that, and that obviously was not enough. I will defintately be icing the next 3!
Round 2 of TC next Monday, March 4th and that is right about my day 21 mark...oh boy! Hear we go! I have felt so good and it has been going so well for me the last two weeks, I am thankful for that and I know now, at least, I get through the next 3!
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ok I'm scheduled again. This has been one of the most stressful days. Close to when I was diagnosed. I'm still waiting to hear from my dr. I finally spoke to her nurse. They were able to figure out something to get the chemo in internally. It took several hours. However, I'm still really angry at the dr. and practice for making me wait not knowing what was going on. And now I was checking the cold caps and one of the plastic containers is cracked. It's back on for Monday.. someone posted on another thread. How I feel. thx
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Shasha, What a deal, I have never heard of such a thing! I was never involved whatsoever with ordering the chemo drugs.
As far as your husband staying - that is 2 extra helping hands, especially useful for kneading the caps before placement.
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Just spoke to the dr. She was first very cool about what happened. I explained how frustrated I was by the lack of communication, of waiting around all day, not knowing what was happening and that I have to deal with the pharmacy at all. She became more sympathetic and softened a bit. Said she will ask the nurse manager to call me to see what happens and prevent this going forward. That I should call my insurance company and complain to them about the screw up with the pharmacy. This has been so draining. Then I complained about missing my comos. Haven't had any since the Dec dx. And chocolate. That all this natural food was not comforting. She laugh and said I can have a comos and chocolate. Apparently. My insurance company requires the pharmacy to confirm with me the destination of the meds. Because people have had several onco. And then the meds ended up with the wrong dr. Sorry I'm still venting. Really did not need the stress I was all set for Monday. And now have to refocus
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So, had my 6th and final TC chemo today. Hair has got thin and almost bald right on top but have managed to keep my fringe so with a wide head band it's easily covered. Just hope the last cold cap session doesn't go horribly wrong and I lose it all now! Again one of the nurses tried to tell me I didn't need it with the cyclophosphamide. They are wrong. The Paxman leaflet says you do, and that it needs to be kept on even longer than with the Tax. There's no way I was willing to risk losing all my hair on the last treatment! And it was their fault for not turning the damn machine on before my treatment was due, even though I'd been in the waiting room for two hours. Arrgh!
So sorry to hear of your experience Shasha. These things are frustrating enough but are the last thing you need to be dealing with on top of everything else.
it seems to me that some doctors are just plain awkward. Why stop you using colds caps? And electric blankets? And your iPod?!?!? Ridiculous.
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The main thing about the cold caps for me is that stopped me thinking about the chemo and just focused on the cold caps. It was much easier.
Congrats Michelle j1980 on your final chemo. Hope all goes well for you.0 -
Thanks Shasha. Am starting on arimidex in two weeks so am worried about potential side effects of that now!
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Good luck with all future treatments. Check in and let us know how you're doing
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Congrats, Michelle on finishing chemo!! I'm sure you're hair will start filling in quickly, let us know how you do!
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Congrats on your final treatment, Michelle!! I will finish accelerated Rads ( 3 week treatment) on Tuesday and I'm losing my brows now. The end, isn't the end, if brows and lashes can still fallout.
I am 7 weeks pfc and hair continues to shed with each shampoo so I am only washing twice a week. Now using nioxin products (shampoo, conditioner, and scalp treatment) for thinning hair to grow in the bald patches. I have also stopped using Toppik product. While I had previously endorsed it, I can't get the stuff out of my scalp! It looks worse than bald patches. So I've shelfed it.
I am blow drying on cool to try and get some body which helps.
Good luck to new ladies just starting this journey.0 -
Loafer, the Nioxin should help clean your scalp and give your hair some volume. I was surprised by what a good job it did for me. I really liked it. I also started blowing dry on cool and it made a nice difference. I hope it does for you too.
Sorry to hear you are still shedding. I kept shedding until 16 weeks PFC although at a slow rate. It was discouraging as I wanted the shedding to end so badly. When it finally did stop, it stopped abruptly. One day I had hairs sliding off as usual, the next day I realized that not even one fell out, nor did a single hair more come out for about two months. I had read that it can happen that way, but until it does, it doesn't seem possible. Now it all seems like a strange memory.
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