Cold Caps Users Past and Present, to Save Hair
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Chloe, I'm using chemo cold caps since they do their rentals by session, not by month, which was more cost effective for me. They also provide you with everything you need aside from the dry ice - the cooler, the thermal thermometer, spray bottle, dolly and straps for the cooler, and detailed instructions, among a few other things. They also helped me find a distributor in my area for the dry ice.
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I had my chemotherapy five and a half years ago, I wore a cold cap for half an hour before and for an hour afterwards. I lost no hair on my head where the cap touched. Where I had a low hairline it fell out at the nape of my neck together with all my body and facial hair except my eyebrows and eyelashes. Both of these thinned slightly but no one noticed.
Prior to Chemo I had a complete body hair removal which lasted seven months, bought a wig at great expense and had the most amazing selection of scarves from my friends.
The BC Nurse assured me I would lose all my hair by the third session. I had it cut to a short bob prior to chemo and the wig was bought to match the style.
I was lucky but I just wanted to pass on a success story. I do not blame anyone for giving up with the cap half way through because at times it could be painful - have it refitted if it starts hurting within the first ten minutes, it will just get worse.
It is imperative to check the times for wearing the cap with the manufacturer and the spedific chemotherapy treatment you are having.
Rest assured all the hair comes back and you will be moaning about moustache removal and pubes down to your knees fairly quickly.
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I started the penguin cold caps last week. I am very nervous now that I heard with AC-T that success is only 50-50 and it looks like mine was not on properly for part of my treatment.
I want to suggest that any of you that are worried about the cost that you can apply for a subsidy. I got one for $300 a month. You can apply here. It is worth a try. http://ccaps.org/applying-for-a-grant/ I wasn't sure if I could justify the expense with such a low rate of success. The week when I found I had to do AC-T vs TC getting the subsidy was my only piece of good news that week. This is a wonderful service that she provides. Once I get through this year and my ridiculous medical bills I plan on donating so she can help others.
You can also ask Penguin if they have any caps that are not perfect that they will rent for $300 per month vs the $580.
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Steflove - I did TCH - so Taxotere (not taxol) and Carboplatin, with Herceptin. I did great! I shed a lot (typical amount), but no one could tell. Taxotere is actually harder on your hair than Taxol, so Taxol+Carbo would likely be easier on the hair than what I had. I did not have AC, though. Here are my pics if interested.
https://coldcapphotos.shutterfly.com/pictures/8
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Thank you dancetrance! The pics look great and your hair looks amazing during and after chemo.
I've slowly been purchasing odds and ends for all of this fun treatment. I need to go find better moleskin at the pharmacy or online.
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StefLove, I did high-dose taxol/carbo every three weeks X five. I had very similar results to dancetrancer with PCC. I'm now three weeks PFC and my shedding (except after the first treatment when I lost hair around the nape and sideburns due to poor cap fitting) has been steady but relatively light and diffuse. My major shed at day 20 was minor compared to some of the photos I've seen of baggies full of hair. I expect I'll continue to shed lightly (hopefully!) for a few weeks like the others, but like the others you'd never know I went through chemo unless you knew. All the hair I've lost, including brows and eyelashes, is coming back in. My doc, his nurses, and the infusion nurses all say I'm the first they've seen to make it through this regimen with a full head of hair and are now all on board with capping. (I experienced major pushback from my first infusion nurse, then wrote my oncologist to say that I didn't need them to be cheerleaders but I did need them to accept my decision without negativity. I experienced no pushback after that.)
As far as the SE are concerned, I think I had a relatively easy time. Some nausea (make sure you get compazine instead of the anti nausea RX that causes headaches) and fatigue. It piles up after a while, but it's nothing I couldn't handle. The worst days I slept for hours. But then I felt better. (If you've ever been pregnant, I'd compare it to that kind of nausea/fatigue.) All in all, the capping was the hardest part. But it's totally worth it.
Stay strong sister. Everyone's here for you.
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Steflove,
I just finished taxol/ herceptin for 3 months and used the PCC , I had breast cancer the first time 25 yrs ago in my 30's and there were no cold caps. I wouldn't have known about them this time except my Dr who is director of UCSF comprehensive cancer center suggested them, she was not worried about scalp mc which I understand is very rare.I brought that up because I was concerned about it.
The caps worked great with T/H and I shipped them off the day after my last chemo on April 17. One good thing is my insurance covered the whole thing. I was shocked, but they did. we've gotten reimbursed so it helps to talk to your insurance co if you do this. Most insurance covers a wig and a very good human hair wig is just as spendy as the caps. I'd heard about these being covered before I started from some of the ladies here who gave excellent advice about how to do this with your insurance. I believe either the penguin people or the Rapunzel Project has insuranc info on their website.
The caps worked like a charm for me with my regimen and I have a full head of hair. I have long weird colored roots since they don't advise coloring hair during cold cap use but hey any old hair is good.I'm sure you'll do great, it's definitely worth the money, for the privacy having hair affords one.
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Suladog - can't believe you got them covered by insurance - WOW! You are only the 2nd person I can recall that had success getting coverage. Yay! Progress!
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MakingWay! I really want to give the ElastoGel Caps a try, they seem less bulky and easier to manage and I won't have as many helpers as required for let's say the Penguin Caps. I think I need to figure out how to make them very cold, I might just call the manufacturer directly for tips. Otherwise has anyone else use them with success? I am starting my AC for the 4 treatments and then switching to Taxol for the 12 weeks. I'll also invest in the mits for my nails-- I heard they also help manage and keep your nails. Please share what you know about the Elasto Gel cap-- thanks!
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ChitownGirl,
Just a word on the peguin cold caps.!my husband was my capper he did it all himself, all 12 rounds and I would reward him at the end of every 51/2 hour capping day with ice cream!
In short all you need is one person to do the capping and he learned from watching the video on the site
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Dancetrace,
Yep the Writers Guild Insurance covered the whole thing to my surprise. Writers guild has always had great insurance last time 25 yrs ago they paid for a 3k wig for me.
I think the insurance is so good because of all the shit writers have to put up with from studio exes, producers and actors. When we get sick they are really there for us. I feel very lucky to have that insurance.
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Chitowngirl-The Elastogel caps fit better than the Penguin caps, but they require more effort in packing them into the cooler because of their shape-like a bowl. I use (2) 2 qt. size bags and I position one inside the other with the zip closure at opposite ends. I fill it with dry ice and half zip each bag so no ice can fall out, yet, the gas can escape from the bag. I place this double layered bag inside each cap and use (2) add'l double bags of ice for each of the two layers in the cooler. I do the same doubling of bags, using large ziploc or hefty zip bags(I think they're 2 1/2 gallon) for the bottom and top of the cooler. I usually can't close the cooler with the top layer of bagged ice, so I bring it along in another smaller cooler. That way it will be available when I take out the first 2 caps. It takes a couple of hours to pack the coolers. You should see if the Penguin Co. will sell you a few of the black straps. If not you can make them yourself-they're very simply made using 2" elastic band with velcro on each end and the middle.
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ChitownGirl-- I did the Elasto Gels on a TCx4 for 12 weeks and I think my results were about normal with cold capping...I lost about 20% of my hair with a small thin spot at the crown from breakage and another above my left ear. The Elasto Gels were easy to use. We kept them in the freezer and put them in a cooler with dry ice the night before our morning appointment. My husband placed the caps when I had my IV in but for the 3 1/2 hours post-infusion I changed the caps at home by myself so my husband could go back to work. I don't know how they would work for ACT, but I was happy with them with my treatment and would definitely recommend them.
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wpmoon - so glad to hear that you had a good experience with chemo cold caps! I have been scrambling to decide because I'm starting chemo this Thursday and only found that out on Monday (about when tx would start).
Also, for anyone that had luck getting insurance to cover their caps, what is your advice? Is there a certain code you gave the insurance company?
This forum has been so helpful! thanks in advance.
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Chloe, i have lost hair, mostly from my crown area, likely due to caps not getting close contact the first time. But it's better than being bald. Everyone's experience is different. If you search my user name you can see the pictures I've posted on this thread with my hair loss. The ladies on this thread have been super helpful and encouraging no matter what you decide
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I wasn't able to get insurance to cover them but I was able to take them off my taxes as part of my medical expenses. I think it would be a lot easier to get insurance to cover them if they were FDA approved!!
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thanks pch and suladog, I do love how I have all of you ladies to vent to and to go to for advice
So a happy update... the nurse called and she said the treatment center will accommodate my capping. They're clearly still not happy about it and she reiterated a few times that my MO still doesn't support it but they will let me do it. Happy about that at least.
I also ordered the caps last night and will touch base with Geralyn about delivery, etc. Getting closer and closer to the big day! Also went on a shopping spree on amazon and ordered more odds and ends...temperature gun, gloves, etc.
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Here are my two daughters and me after my last round of chemo today. Needless to stay I was a pretty happy camper! As You can see from my daughters I once had thick blonde hair that has thinned since I went through menopause. We all agreed that yes, my hair has taken a hit, but yesterday I went to work in multiple court rooms and while my look was "different" almost no one know I had cancer. That was helpful for me in getting through the work I needed to do. Thank you for MN Oncology for having a medical grade freezer donated by Rupunzel, and than you to the local Penquin Cold Cap rep and her daughter for capping me. I am over the moon to be done with chemo and now ready to get going on the radiation portion of my treatment plan. Much love and light and healing to you all! Kimberly
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Congratulations Kimberly!
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kachincolor, congrats for being done, you look amazing! And your daughters are the spitting image of you, beautiful fam.
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Way to go Kimberly! Looking great! I hope radiation will be a breeze for you (although definitely a pain to go every day).
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Brava, Kimberly! Congrats on finishing.
Your daughters look so much like you. Before I read your caption, I thought that the lady on the left was you (she looks so much like your avatar photo), and that you were helping somebody else with the cold caps.
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CONGRATS, Kimberly!! You look great! You should be proud. Way to go
We'll see you on the other side ... check out the after capping posts!! They're wonderful. I'm three weeks in rads and doing good ... you will too! Again, congrats!! -Kim0 -
Yay Kimberly! I was just thinking about you & thinking you were done this week. I agree with BB - I thought that was you in the pic on the left too as it really does look like your avatar photo. I'm glad your daughters were there with you and helped you cap! I was wondering what you were planning to do with Susan on vacation. I hope you gave that bell a good ring!! I'm bummed I never did get to meet you in person at MN Oncology.
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congrats Kinberly!!!
Farewell to the ice age, so glad the caps worked for you!! Whatever it takes
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Congrats Kimberly! Welcome to the other side. You look happy and awesome!
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Congratulations Kimberly!!!!!!! I sent my caps back last Friday. What a relief not to have a frozen head anymore. Best wishes as we complete this journey. Cind
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well it looks like my helper is quitting... He has turned this into a all about him issue sad thing is he is my fiancee... So i no longer have help capping, i have 5 weeks left, and i think i may tempt the devil, and stop capping... He admitted to me he has been doing a half ass job, since we started the taxol....so what atr the odds i loose whay i have worked so hard to sav
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It seems that many oncologists and nurses (including a friend who is a research RN and had cancer herself) do not think cold caps work. I ended up renting from Chemo Cold Caps and had a tolerable first day, although by the end i was ready to take the caps off! It was nice that the package came with everything - including temperature gauge, medical tape, cooler - so that the only thing you have to buy is the dry ice. Rep was also very responsive and helpful. It was a lot of work for my poor hubby, though he didn't complain. I hope all this effort pays off! Good to read about so many success stories here.
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I have not checked in for awhile. Here is my update-I have done 4 tchp treatments. Hair is a little thinner. Caps have made this journey so much easier. I feel blessed. I am a 3rd grade teacher and students would definately tell me if I looked different. They haven't said a word! My husband and inlaws can not tell either. Total fan of the caps.
Tripper sorry to hear about your situation. Where do you live? I might be able to help.
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