All Topics → Forum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Cap Users Past and Present, to Save Hair
This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.
Posted on: Jun 14, 2009 07:04PM
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
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Nov 17, 2017 04:47PM SJane wrote:
Magari - Sounds like you are prepared for the "infusions" (certainly NOT a spa treatment). I am near the end of my 6 TCHP infusions, one more to go, & I also have thick naturally wavy hair. I love your list of things you already have in place. There are a couple things I use in addition: aluminum-free deodorant (some say aluminum hurts the hair follicles), I use Arm & Hammer, a silk pillowcase & don't forget to ice the palms of your feet and hands and nail beds during Taxotere infusions, if you choose. The reason to ice hands/feet is the doctor said about 30% of people lose their nails & because of possible neuropathy. Neuropathy effects can be long or short term if it happens to you. I use Biotin for toothpaste now as regular toothpaste is way too "spicy". Also, I developed a rash after the first couple infusions (nurse said she'd seen that with Perjeta) & the doctor said to use benedryl or it's generic, which helped immensely. By the way, my hair is certainly hanging on and no one can tell any difference. After the 5th round there was more shedding than the rest & I have yet to see what the future holds. My best thoughts for you on this journey.
Nov 17, 2017 05:27PM Magari wrote:
Tanyamomma - THANK YOU for sharing the insurance reimbursement info! I am also using Arctic and have Blue Shield of CA, so am going to give it a try and will keep you all updated on my results.
SJane - Thanks for the additional tips, and especially the encouraging words re your own experience thus far with capping during TCHP. Arctic's package provided a synthetic satin pillowcase, but I may spring for a natural silk one. I have Arm & Hammer (baking soda) toothpaste at the ready, but it's good to know about the Biotin if that doesn't work out.
My MO's office said my usual anti-perspirant (Degree) which contains aluminum was okay to use. I'd be perfectly happy if my underarm hair never grew back. Is Penguin (or whoever) saying that use of standard anti-perspirant under one's arms negatively affects the follicles on one's head? I know we're all working so hard to save our hair and want the best possible outcome. But some of their "rules" seem pretty illogical with no real scientific basis provided.
Another tip to share: My wavy hair tends to frizz without product in it. I mentioned this to my stylist and she showed me how to use aloe vera gel to define the waves/curls, starting about midway down to keep it off the scalp. It works and is natural, free of all things we're supposed to avoid, water-soluble, and dirt cheap at Trader Joe's!
Nov 20, 2017 04:51PM - edited Nov 20, 2017 04:53PM by cndble
Only thing I would add is that I painted my finger and toenails black and didn't have a single problem with discoloration, peeling or loss of nails. My nails didn't seem to change at all. And it was so simple to just paint my nails. If you're trying to combat neuropathy, then you'll want to ice your hands and feet. An alternative that my MO suggested was 30mg of L-Glutamine daily and that kept the neuropathy away for me and I didn't freeze with having to freeze my hands and feet along with my head.
Nov 20, 2017 05:13PM - edited Nov 20, 2017 05:14PM by cndble
MamaFelice- I did have thick hair and they said that actually worked against me, because it kept the cold from penetrating to my scalp. My hair continues to shed at a steady pace 3 weeks PFC. My biggest shed was day 21 after my first TC infusion. I cried thinking it didn't work, but I hung in there and ended up with a good amount of hair. I just wish it would stop shedding. I have a VERY thin (I say bald) spot on the crown of my head that you can't see in the picture. Waiting for my eyelashes and eyebrows to drop now.
Nov 20, 2017 05:16PM PatinMN wrote:
Just a note to cndble's post - the amount of L-glutamine used to prevent neuropathy is 30 grams (not mg). It's a lot - 15 grams is about a heaping tablespoon, and I took that twice a day (mixed in a liquid of your choice - I mixed it in Crystal Light). It seemed to work for me, and is a lot easier and more comfortable than icing hands and feet during 12 weekly taxols, while cold capping!
Nov 21, 2017 07:30AM MamaFelice wrote:
Ladies you have me so intrigued!!
First by the use of L-Glutamine!! 30grams a day every day or only on infusion day? I have heard about taking L-Glu to help heal leaky gut, but never took because I am allergic to MSG, and L-Glut can trigger allergy. I must look into it further. May not be an option for me, but VERY interesting!
And regarding the nail polish.... does it have to be black, or can I paint my nails red or pink or grey? And this helps how exactly? Protects the nails from discoloration and falling off? Once again, very intrigued!!
I did not ice during Taxotere the first treatment, but did ice for the 2nd and it was awful having all that ice going on! I just decided that since I have 6 treatments instead of the standard 4 that I ought to do it. My mouth fared better after chewing ice during the 2nd....so I figure it is helping fingers/toes too.
Did any of you take Biotin? I benefited from it before all this started, so I just keep taking it. I just wasn't sure if I should increase my normal intake or anything like that.
Cndble-- I worry about the caps penetrating my thick hair too. My husband wraps the caps and bands soooo tight, and I flip my part --left, center, right-- with each change, not only to protect my part, but to shift the heavy mass of top hair around to try and help combat the thick. My shedding definitely increased right after 2nd infusion (day 21-ish) for about 5 days but has since tapered off. Now I have to pull on it for pieces to come out rather than just seeing & picking them off my black sweatshirt. I have lost about 1/2 my hair "down there", neck/facial hair, arm pit hair, and my leg hairs are growing at a much slower pace.... all indicators that if not capping then I would be without a lot more hair. I am thankful for what the caps are doing for me today, and just hope enough hangs around until new hair is growing in. Having my hair is a daily blessing for sure!
Magari-- please share more about the aloe Vera technique with softening/ defrizzing your curls. Battling that for sure- but lucky it is cooler weather season with low humidity or I would really have a battle on my hand!
Can't wait to hear back from you all! Have a blessed week and Happy Thanksgiving! 😃🦋
Nov 21, 2017 07:40AM MamaFelice wrote:
Just had my daughter take a pic of back of head-- with all the frizzies! 🙃
Nov 21, 2017 12:38PM Willow22 wrote:
mamafelice - wow, what a gorgeously thick head of hair! and that is AFTER 2 rounds of chemo???? Fantastic! I forget who you are capping with, but you gals with thicker/fuller heads of hair probably have a different target temperature than us with finer/less hair. I used PCC and my target temp was minus 26-28' C. I know other have said their's was minus 36'C, so I'm sure that helps to get the scalp to the right temp.
I'll be 2 months PFC on 11/29 but as I think it was Pambc said, I have continued to shed... not as much as in the 3 weeks right after each round, but consistently enough that my pony tail is getting awfully skimpy and may get to the point where my soft ribbon bands slide right off. The good news is that I have a fair amount of new hair that is about an inch long on the sides, but it is very fine and pretty much sticks to my head. My part is also wider at the front (no new hair showing up there yet), and I expect it looks a bit worse at the back (I've been afraid to look). Will take some photos to compare pre and post chemo, and maybe ya'll can help me figure out if a shorter cut is the way to go.
I pull my hair back into a loose pony tail most days because i hate having all the stray hairs accumulate on my back, especially if I'm going out.... does anyone have any other suggestions or tips for that? Scary how quickly I've gone through costco's 4 pack of lint rollers!
black nail polish - it's one of those things that doesn't hurt to try if you don't mind the look, but when I checked into it online, the theory is that it helps protect the nail bed by blocking sun's rays. Some chemo drugs say they can be reactive with sunlight (avoid direct sun exposure, etc), and the thought is that the black nail polish keeps UV light from hitting the nail and bed underneath it, but check with your MO - I don't think there's any science behind the recommendation. I used clear OPI nail envy to strengthen my nails (mine have been chipping and splitting even before chemo) and also was religious about using gloves to do dishes/chores with water. My nails have never looked better - absolutely no splitting during chemo, and they are long and strong - actually had to have them trimmed with my first manicure post chemo... love the product!
Happy thanksgiving all!
Nov 21, 2017 03:34PM - edited Nov 21, 2017 03:34PM by PatinMN
Mama Felice, I took the L-glutamine the day of chemo and 3 subsequent days, so four days a week. But I had weekly taxol, and I'm not sure what you would do on taxotere which I'm sure you're getting every 3 weeks. The good news for you is that I think taxol is more likely to cause neuropathy than taxotere, so maybe you don't need to take it. I was advised by my chemo nurses to wait until I started having symptoms before starting the l-glutamine. I started getting some tingling in hands and feet after about the 3rd infusion, so that's when I started the L-glutamine.
And yes, your hair looks amazing! Hope that continues!
Nov 21, 2017 04:47PM Magari wrote:
MamaFelice - I think your hair already looks pretty great!
There's not a lot of "technique" involved re use of aloe vera gel on the hair. You just apply a small amount from a few inches from the scalp down while your hair is still damp, comb through, twist/scrunch as desired and then allow to air dry. (I do this after using a little of the Kenra spray-type leave-in conditioner.) There's a bit of "crunchiness" once it's fully dry which I'd prefer not to have, but that's true of any hair gel. You can finger comb a little to soften it up.
I like the softer texture that you get from a balm-type hair product, but don't think that's recommended and since we're also supposed to limit washing it seems like that would just cause greasy build-up.
The nurses at my chemo "teaching session" yesterday were very kind and supportive when I told them I'd be cold capping. One said they'd try to give me a larger room because of all my paraphernalia, and another said they'd work with me to get the timing right for the 50 minutes of capping during pre-meds and do my TCHP so that the TC would be first in order to count the time during my HP as part of my 4 hours after the chemo drugs.
I am still trying to figure out a good picnic lunch to bring with me to my first infusion on Monday, which is going to last about 5.5 hours plus travel time.
Nov 21, 2017 07:52PM Babasmom wrote:
I’ve been reading this board for months. I actually finished TCHP in September, 2 treatments earlier than expected due to horrible side effects. My body was just too weak to go on.
I used PCC and had fairly decent results. 3 major bald/thin spots that I have to assume were caused by the cap not having contact with my scalp on those areas. Other than those areas the shedding was definitely noticeable but tolerable.
HOWEVER, now I am like Willow and maybe Pamela?? and I am shedding hair like crazy. I’m just abt 2mths PFC and I’m going backwards. I’m so upset. I feel like I’m just starting this process. The hair that I lost is just starting to grow in but it’s thin and really doesn’t cover my scalp and everything else is just a mess.
Sorry to be a downer. I was so looking forward to going back to work (just had double mastectomy 2 weeks ago) with some coverage in the new year and now it looks like I’ll be going back with patches of who knows what
Nov 21, 2017 09:34PM Travel_Girl wrote:
Babasmom -- have you tried using any of the hair fibers to help with the bald spots? My original thin hair is very thin after dignicap cold capping and I have found the hair fibers (topikk, bumble and bumble dry shampoo) do work to help fill it in. Works better on dark hair shades, blondes are more difficult to match. Try it - they sell it on line and at local sally beauty supplies, etc. It is a relatively inexpensive 'trial' that might help
For a larger more expensive fix (other than a wig/topper) -- as you are NY based, look into the Lucinda Ellery Salon (found link on repunzel project site) as a possible option.
I am 4 weeks PFC, and I haven't noticed any growth yet -- as Willow mentioned above, I try not too look too much - it helps with my mental state. Shedding does continue, although I think at a slower pace ... or that is what I tell myself :)
I am having surgery on Monday, Nov 27th - double MX - and I also fear that when I am ready to go back to work (start of New Year) I will need something like a wig or other - so I have been researching options.
You made it this far, this too can you find a solve for. That is what I keep telling myself.
Nov 22, 2017 06:13AM Brightness456 wrote:
I’m 5 weeks PFC, having only made it through 6 weeks of taxol before neuropathy caused me to stop. I barely shed during chemo, but have shed steadily since I stopped. Luckily for now I still have plenty of hair (thank you thick hair), but it is disheartening to see the hairs after washing or in the vacuum. I want to feel like my normal self again so badly and worrying about my hair makes it hard.
I also didn’t realize I had a small bald spot but a few weeks ago I started feeling prickly new growth. Thankfully it was covered by other hair.
Thank you for the hair coloring info. I cannot wait to touch up my roots! Do I really need to wait until 3 months? I’m so tired of being patient.
Nov 22, 2017 10:56AM BeckyMD wrote:
I colored 5 months after my last chemo, and it just didn't take. It was so grey, especially the sideburns. I had a little grey before chemo, but lots more after chemo. I used Clairol Natural Instincts, which is what I had been using prior to chemo. Followed the directions exactly, but couldn't see any difference. It has been six months now and I will try again soon, and will post results.
Nov 23, 2017 08:05AM MamaFelice wrote:
Thank you ladies for your support!
You are right Willow in that my cap temps are set 36-40 degrees. Brrrrrr! ☃️ I get cold just thinking about it! So I think they adjust the cap temps down for the thickness. And that makes sense re the black nail polish. UV light would be more of concern for me if it was summer, since right now my tootsies are in socks and shoes for the most part! I too have and love Nail Envy and will continue to use it.
Travel Girl-- my hairdresser has already come up with so many different options to help support my hair when it begins to thin out -- like halos, toppers, and extensions. Possibly talk with your hairdresser to see what yours might say. I'm not sure how I'm going to tackle that bridge but I hope you all will be here to share your experiences with me when that time arises. Also TG, I'm happy to hear you have your surgery date set-- you got this! My BMX was pre-chemo, and managed through with lots of love, prayers and support from family and friends. Please feel free to ask more here or PM me if you have any questions at anytime before or after surgery. A couple of things worth mentioning, I had 3 drains for 3 weeks-- 1 on left and 2 on right because of axillary node dissection-- and I grew most tired of them than anything, but they did their job well. Sleep in a pillow fort with elevation on both sides, and when it is time to see a physical therapist, go and follow the exercises. All in all, after about 1 1/2 months I felt fully like myself again, so just keep remembering that your body will heal and you will be feeling great and ready to go back to work in the new year! Enjoy your holiday and I will be wrapping you in a blanket of prayers on 11/27!!
And Magari-- I will be wrapping you too in a blanket of thoughts and prayers on 11/27 as you start your first round of TCHP! You sound so prepared--Way to go!! I'm a planner and preparation is always key! Having a larger room and the nurses on your side is def a plus with capping. As for lunch, my hospital brought decent sandwiches around for everyone. I do a "fast mimicking"-type diet for several days surrounding my treatment and so I'm not much help to suggest lunch-- though I had some miso soup after I got home from first infusion and it gave me extreme heartburn-- burping too even-- which I later learned can be a side effect of Taxotere, so I didn't eat anything after treatment for 2nd round and was fine (had a smoothie and avocado in the morning prior to infusion). My 3rd out of 6 will be on 11/28, so I will be receiving chemo right behind you! Good luck--you got this too--& thanks for aloe technique! I will try--& post pic of products I bought and find helpful too.
Babasmom-- sorry to hear about your PFC shedding. I am sending a giant applause your way for completing this journey-- both your chemo and BMX! Def try Travel Girls tips-- or post a pic here or on CC pic thread and many of these ladies will offer valuable feedback.
Thank you PatinMN for L-glutamine info! And you are correct in that taxol has a higher rate of neuropathy than Taxotere....but with receiving 6 Taxotere, my chances go up. It's worth it to try whatever is suggested-- as I am a firm believer in all the "home remedies" even if the docs shrug them off as not completely valid.
My apologies for totally going off topic on this CC thread! I promise to reel it back in next time! Ah, who am I kidding-- I enjoying writing to you all here, and have found the most support on this thread-- thank you!
Happy thanksgiving everyone! Gobble gobble! 😃🦋
Nov 23, 2017 09:09AM Pambc010417 wrote:
Happy Thanksgiving to everyone! You are all very strong women and will beat this! I feel thankful I’ve survived a diagnosis on 1-4-17, 4 surgeries (1 lymph node, and 3 DIEP Flap reconstruction surgeries) and now I’m almost 5 months Post chemo. And I still have my hair, though it is thin! Wish you all the happiest of Holidays
Nov 23, 2017 10:06AM ItsStillMe wrote:
Happy Thanksgiving everyone. It's been 10 days since my 2nd of 6 planned TC. I experienced the same low grade fever 99. - 100.0 with a headache that I had the first round. Last time, I was told to monitor the fever and take Advil/Tylenol if I couldn't bear the headache pain, which I did right before bed and then woke up with the fever resolved. This time around I felt more run down, more of a feeling of being unwell. The low grade fever persisted for 2 days and I had to go in and have blood and urine tested. My WBC came back unusually high, which they say is due to the Nuelasta (interesting because NP told me I was a bit anemic after my first TC). The urine was clear but did have “some presence of Leukocytes" which my NP said it “could" be an infection and so they put me on antibiotics just Incase. I feel good now and am back to my old self, but this has me concerned. There is no clear answer for why I have had a fever twice now. Also, my scalp too is peeling like snake skin. It is terribly itchy and I can hear it crunching under my hair when I touch it...gross. I contacted PCC and Geralyn told me it's common because chemo dries your scalp. She suggested mixing 1 part vinegar with 3 parts water and rinse your hair instead of using shampoo. Then repeat as needed. I will try this today as it is my weekly hair wash day. I will let you know how it works. I had a big shed day 23 and lost a lot of hair, my hair is thin to begin with. I'm dreading the wash cause I know there is going to be a lot a hair loss and tears. On the bright side both my boys are home for the holiday and it has really brighten my spirits. I hope everyone finds joy today with those you love!
Nov 23, 2017 01:47PM Willow22 wrote:happy thanksgiving ladies! So grateful to have found this website and discussion threads - it has been a real life-saver through these tough months!
Nov 24, 2017 05:02PM red332 wrote:
Happy thanksgiving, all! I just wanted to check in after my third chemo treatment (of 12 total weekly taxol/herceptin) on Tues. Again i can not say enough about THERMACARE heat wraps for keeping warm. This time I wore three of them...one back wrap around my waist and two neck wraps in midback area (didn't want to get too close to my head/neck). For the first time, I was truly able to tolerate the capping + feet/hand icing. My benedryl dose was cut in half this time also so I was a lot less restless.
As for results, it's still too soon to tell anything (day 15), although I feel like I lost a bit more hair when I washed this AM.
One new question....has anyone heard of Revitabrow Advanced eyebrow conditioner? It was supposedly invented for cancer patients, but it's not clear if it's supposed to be used before you lose your brows, or to stimulate growth after chemo is over. It's very expensive so am looking for some info before I buy. It does have biotin in it, and someone mentioned that here. Per the website: A proprietary blend of scientifically-advanced technology and natural botanicals join in concert to protect against breakage and brittleness. Improves flexibility, moisture, and shine for bold, beautiful brows.
Wondering who else is in active coldcapping mode right now? I see ItsStillMe, MamaFelice and Magari. Anyone else?
Re L-glutamine, I just started taking it for digestive problems from taxol. Figure it if helps keep neuropathy at bay that's a bonus. I know off-topic but FYI I am also doing accupuncture and using Moxa to help prevent neuropathy (so far successfully but only on treatment 3) if anyone is interested in hearing about any of this. Throwing everything I have it!!
ItsStillMe, thinking of you and I hope you have an easier time of it next time!!!
For those of you still in the PFC shedding/caretaking mode, and to the veterans as well.... Thanks so much to you for offering your support and advice! I hope to be able to pay it forward soon!
Nov 24, 2017 06:01PM Brightness456 wrote:
I could be mistaken, but isn’t revitabrow essentially non prescription latisse? If so, I think most MOs say you shouldn’t use it until chemo is finished. I used Brian Joseph’s on my lashes and EES on my brows during chemo.
Nov 24, 2017 07:22PM ItsStillMe wrote:
Willow thanks for the wbc & rbc info. I'll definitely keep on top of this next round. How are you feeling now?
Travel girl - good luck with your surgery, Another step to cross off of this nightmare list. I've already had 2 surgeries (lumpectomy & Axillary dissection) but I will also be having a bmx after chemo is over and then radiation. Although I was certainly nervous about those surgeries, chemo has been a far worse experience. It seems never ending.
Red- I'd like to learn more about acupuncture and what's Moxa? Like Brightness, I am also using Brian Joseph's on my brows and lashes, which I bought at my Cancer Center's Image Recovery Center for about $50. It was the only thing my MO would allow, and I even asked about Latisse.
I tried the vinegar solution for my itchy scalp. It felt ok going on and it did not leave an offensive smell. But my scalp is still itchy, so I will try it again next wash day. And I lost a lot of hair again. This shedding has notseemed to tapper off. Is every infusion going to bring the same amount of shedding? Or is it different for every person?
Thank you for your support everyone, and I hope everyone has a restful weekend.
Nov 24, 2017 09:21PM LizabethM wrote:
Good evening Ladies,
I'm new to this cold capping board. I had my first round of TC on November 15th. I am doing my chemo at Wake Forest and using their Dignicap. I have all of my fingers and toes crossed that we can keep most of our hair!
When I learned from my Mammoprint that I had a "High Risk" of recurrence and needed chemotherapy, it felt like a gut punch. Working to save my hair is me punching back. :-)
Nov 24, 2017 09:27PM MamaFelice wrote:
ItsStillMe-- I think you are just a week or so behind me. I will have my 3rd TC this coming Tuesday 11/28-- almost 1/2 way--Yay! I had the nasty flakey scalp thing happening mainly along my part just before and after treatment #2. I even asked a friend to come and pick all the flakey pieces free before I washed my hair post infusion...true friend! That really helped, and since then only have mild dandruff type flaking-- but I also moved my part with each cap change during my 2nd treatment which may have helped too. Is your flakey scalp only along your part too? maybe try swapping your part for next treatment.
I too began my shedding on day 23. By day 28 the shedding slowed. Today is day 37. I just need to keep my hands out of my hair....when I fiddle with it, hair comes out.... simple as that! Would be nice if I only had to receive 4 TC instead of 6. Why do you need 6? My sincere apologies if I've asked you this already -- chemo brain! 😜
It's crazy to think there are so few of us actively capping involved on this thread. Though it doesn't surprise me since I am only the 2nd person this year to cap at my hospital, and it's a rather large hospital! Plus when I tell anyone about CC, they are clueless and never heard about it just like it was for me when my hairdresser told me about it. I was curious if there would be more info about it shared in October during BC Awareness month-- but nope. There was no mention of it during my chemo 101 class, and no information provided by the hospital whatsoever-- all because it is not FDA approved! Why does the FDA take so long? Red tape & Politics!!
So it has to be by word of mouth for anyone to know about CC. I think people in my community that know I have BC just assume I am not receiving chemo, or the chemo I am receiving does not cause hair loss. I am debating about posting something on Facebook about my capping just to help build awareness.... but I don't want to be rubbing my hair in the faces of those without.... besides, it is a costly option that not all can choose. Do any of you ever feel a little guilty for having learned about and being able to use CCs? How have you all dealt with sharing the world of capping with the masses? I know for some, this is all a private matter, but I know many of you have been very open about your experience. I'd love to hear your thoughts!
Happy Happy to all! ☺️
Nov 25, 2017 10:24AM - edited Nov 25, 2017 10:13PM by Travel_Girl
Mamafelice - I share the information by word of mouth - I tell people that if you ever know anyone that is ever dx - make sure they know about it or feel free to have them reach out to me. I tell them they have to start with it, so make sure they know early. I think by telling everyone I know, I will be able to help someone else. As BC is more common than we think - the odds are you will know someone in the future.
I have also made it my mission to set up a fund to help a few women in the future that need help with the funding for it (I have to get through surgery and recovery first). It is expensive. I think it should be available to anyone that is interested through insurance, if I can help even one person make it through it a little easier - I feel like I can give back.
As much as I don't love my thin hair that is so fragile, I am so thankful for it and it has helped me though my chemo process - feel just a little more normal.
Nov 25, 2017 11:37AM BeckyMD wrote:
I was only the second person to use cc at my cancer center, although they had a medical grade freezer there that the previous patient had obtained for them. My onc and nurses didn't even mention the option to me. (I had seen something on the news about it.) When I mentioned it to my onc, he knew about it but said something like "it's just hair." Also said, "it's not guaranteed to work, and it's expensive." Well, chemo is no guarantee either, is it? Anyway, he said they supported it if I wanted to do it. All the nurses seemed fascinated with the whole process. I managed to keep maybe 50% of my hair, and I think it definitely grew back faster. I am glad I did it. Agree, it is certainly not widely advertised.
Nov 25, 2017 04:54PM Magari wrote:
I found out about cold capping on my own and asked about it at my initial consult with my oncologist. The social worker at her office gave me a printout of Penguin's webpage, saying, "This is the company that most of our patients who cap use." I was on my own to figure it out from there. The office does not have a freezer, but the nurses seems to know the drill so they've clearly had some patients before me using cold caps and are supportive of it.
A good friend of mine from college is a radiologist in the NY-NJ area and we've been e-mailing since my diagnosis. She reads mammograms all day and forwarded my surgical pathology report to a couple of oncologist friends for second opinions re my treatment plan. She said she thought there'd been "something about that process" at a conference she'd recently attended, but essentially knew nothing about cold capping and was curious to learn more so I sent her a ton of links.
I'm all about spreading the word and it does surprise me that so few are currently capping on this board. I think it's terrible that insurance doesn't cover it (although I am going to submit a claim anyway) and it's a "luxury" that many cannot afford. I told my husband that since we cannot take a vacation any time soon we are spending the money on this instead. Not exactly a holiday, but I feel fortunate that I have the option to give it a try.
Of course it is also a lot of work and a huge time commitment. I also feel fortunate that my husband is able to take a couple of days off from work to be my helper and that I have friends who will take over on other dates. Not everyone has the necessary support system, and that too seems very unfair. It sounds as if the setup for use of the DigniCap and Paxman machines is actually administered by nursing staff, so that makes it somewhat easier for some, though cost and access remain barriers.
Nov 25, 2017 05:06PM - edited Nov 25, 2017 05:07PM by LizabethM
I also agree that I think insurance should cover this. It is not a vanity issue whatsoever. I know, for me, if I can see "me" in the mirror I feel my mental attitude would help aid in my journey through chemo and cancer.
I know most of you ladies are doing penguin cold caps. Check into Dignicap and Paxman (I believe that is the name.) They are cold cap machines that do not need to be changed. Put on once and that's it as it has its own refrigeration. The cost is $500 per session but I'm wondering if insurance would pay if it were submitted. We might try.
Edited to add: more and more hospitals are getting them but the "word" doesn't seem to be getting out.
Nov 26, 2017 04:08PM angiepie wrote:
I am actively cold capping. This Tues the 28th will be my 3rd of 4 Taxotere/Carbo. I'm using Chemo Cold Caps and essentially have had zero hair loss (i'm keeping it all in a bag to keep track). My favorite cousin and my college roommate are my cappers and do EVERYTHING for me the day of infusions. I'm icing my hands and feet and am fortunate that my chair is heated and I bring an electric blanket and heating pad and they bundle me with warm blankets. Going today to purchase Thermacare packs! Great idea! I've been taking L-glutamine but too nervous to not ice my hands and feet?? I'm just SO tired of flat, dirty looking hair! I usually keep my long hair up in a very loose messy bun with a soft scrunchie but it sure shows off my now rounder-from steroids face! Starting 3 days ago, I am feling that "hurting" feeling in a few spots on my scalp and I am SUPER nervous its getting ready to fall out!!!