Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi there - I was recently diagnosed at 30 y/o and am currently working with my doctors on my treatment plan, getting second opinions, getting additional tests (LN biopsy and MRI), and prepping for about 5 months of chemo all together. I'm trying to decide whether I want to try cold capping or not - I go back and forth every day! My husband is concerned about the headaches and me being too cold - he is sweet and doesn't want to put my body through any more stress and doesn't want me to be in pain.
For you ladies who are already cold capping - how bad is the discomfort when you first put the cap on, and for how long does it usually last? Are severe headaches common? If anyone has done AC and then THP, did you find it effective?
I know results vary and that if I choose to do it, I need to be ok with the fact that it might not totally work. But even if I still lose a lot of hair, the fact that it grows back faster is really appealing to me...
Thanks!!
0 -
viktoryak, I didn't find chemo that bad. I worked through 4 rounds of TC, only taking off chemo day and the day after each round. My biggest complaint was fatigue and water retention. My feet and legs swelled as if I was pregnant. Those are pretty minor complaints compared to what some experience and what I imagined chemo would be like. I pretty much lived my normal life. I think keeping my hair really helped me get through it emotionally. I saw myself when I looked in the mirror, not a sick cancer patient. Glad you're doing well and the caps seem to be working.
0 -
DistrictGirl, I take 2 taylonol before capping and I am Ok. I never had headaches from cold caps. Yes it is cold and uncomfortable but it's ok.Most uncomfort is a srap under chin.. But you can do it . it's not as bad. I also take Xanax and get benadryl as premed it makes me " out of it" for a few hours and it is manageable. For me it gets bad last hour or 2. I think because benadryl wears off but I did four six hour sessions already . have " only" 8 more to go.
0 -
Runner70, have they checked your albumin? ( would be a blood test, also a urine test to see if it is spilling out your kidneys.) The kind of swelling you are having sounds like what you get with low albumin. Mind you, might be the same with capillary leak.
DistrictGirl - I was also worried the caps would be intolerable. They are hard for the first 10 minutes, but doable. I had a few tears a couple of times. Taking Tylenol before seemed to help a bit. Definitely better when I was doped up on benadryl for my 2nd lot of chemo. I had 4 doses of dense dose AC to start, which is meant to be hard on the hair, and though I lost a lot, I have plenty left.
Hooray, my hair seems to be growing back in already, at almost 6 weeks since my last chemo. I have sweet little hairs covering my baldy bits at the temples:) Still shedding a bit, but it seems to be slowing down. The troll like texture is pretty funny.
I love that the camera captured one of my three eyelashes on the right! And check out those sparse brows! What you really can't see is that the inner thirds are missing!! So weird. Looking forward to those growing in.
So different than last summer!
Owwwwwch….
0 -
Hi All,
I used cold caps for my 4 infusions of CMF ( perhaps the least toxic of the cocktails). Had last infusion on Feb 4th., almost 4 months ago. I have long hair clipped at nape of neck, and bangs. As recommended I use the special shampoo and conditioner. Do not use hair dryer. Set my bang using pillow curlers, like rag curlers. And use Toppik ( a miracle) to fill in baldish spots.
Will my hair , eyelashes, EVER stop shedding? Even as I sit here over my ipad I have to brush away a shedded hair.0 -
PS
Some of the shedding is coming from my hair breaking mid-strand. Did anyone find that their hair broke? is that the right word? Sounds weird.0 -
HI Ladies, Here comes some encouragement - I hope!
Today I'm exactly one year and 10 days PFC. I had 12 weekly Taxol treatments, which are supposedly not as harsh on the hair. I adhered quite strictly to the rules. In fact I babied my hair long after finishing chemo. Most of my shedding happened after I finished chemo; I suspect I was the longest "shedder" in this group - my shedding stopped only about a month ago. I estimate I lost about 30-35 % of my hair, but never developed any bald spots.
My hair used to be on the greasy side, but chemo dried it out. I often have the troll hair nowadays, but I don't care - I'm just happy to have hair. Because it has gotten so puffy (poufy?), it looks like I have more than I actually do. If my part looks too wide to me, Toppik does wonders to cover it up.
This is me today, after washing and attempts at styling.
Good luck to all of you.
0 -
District Girl, I used Tylenol and Xanax prior to capping. I also had IV Benadryl and the combination of these drugs made me loopy and sleepy, so I tolerated the cold quite well. I usually get headaches quite often, but cold capping didn't give me any headaches. The first few minutes felt very cold, but then my scalp would freeze and I didn't feel the cold.
I'm very happy with my results and I think it was worth every penny and all the effort.
0 -
Hi...my Mom is very newly diagnosed with Cancer. She was told on Thursday that she'll be starting chemo this Monday. Does anyone know where I'm able to find a cold cap before she starts Chemo? With Monday being a holiday I'm not sure how to go about doing this if it won't ship until Tuesday?
0 -
Hi Ladies,
I had to share that I finished chemo Tuesday. (4 AC, 12 Taxols) My incredibly capable capping expert (my husband) has not missed a single treatment. When it was time for me to ring the bell, I had a wonderful group of family and friends on hand. Two of my 3 brothers, my 4 sons, my daughter in law, my adorable 7 month old grand daughter, my 1st friend ever, and a friend who drove 1 1/2 hrs each way to surprise me. I'm a retired teacher and 8 of my teacher friends popped by to boot. I am so blessed to have my family and friends.
Wednesday, I met with my doctor. He doesn't need to see me again for 3 months. I feel like I've been living in his office or downstairs for chemo for ages. I guess I have since the last week of December. Three months will be a welcome break. What will I do with my free time?! They also scheduled a consult for the radiology they are now suggesting I consider. I have questions already written down to ask.
Thursday, I scheduled my port removal. I can't wait to get that checked off the list. My ports have been an issue. (1st port only worked for 4 weeks. 2nd port has itched and gotten a rash. Both "pulled" and felt "tight" more days than not. Both have bruised and been sore) I also packed up the cold caps to ship back. They worked, and I love having my hair, but I was not sorry to see my 2nd son carry the box out the door.
Friday, I met with my plastic surgeon again. I'm going to try Latisse. If anyone has used it successfully and has helpful hints besides follow the directions, let me know. We also discussed getting my new right temporary implant in. The original became compromised and had to be removed almost 6 weeks ago. (I might have been known to refer to myself as the Uniboober on occasion.) By the time I get my permanent implants in late Aug or early Sept,, I will have had 7 boobs in 9 months. That HAS to be some kind of a record!
I'll keep reading and post on how quickly my pixie haircut grows into an Audrey Hepburn look. I'm looking forward to trying short hair during our hot and humid Southern summer.
Keep capping. Hang in, you'll make it to the end of chemo with hair. Always find something to laugh about. I surely have.
Leesa T
0 -
Hi! I just started Penguin cold caps with my 6 rounds of TC.
I do have a few questions. I scrolled through maybe 100 pages of this thread, but as there are over 500 now, I don't think I can search all of it for what I'm curious about:
1. Is it ok to use baby powder or corn starch on scalp in between washes? My hair is still quite oily.
2. Is it ok to wear cloth headbands/scarves to disguise the patchiness around temples and nape? I haven't lost any yet (only 1 week in) but once this happens I think I will feel better if I can cover those areas.
3. I'm still slightly confused about how the caps work if the chemo remains in our systems for a few days after the infusion. Wouldn't it still be able to reach hair follicles on those days, when we don't have caps on?
Thanks!
0 -
winward Yes- I've had a ton of loss due to breakage. When I gently brush my hair, I do it over the sink and see lots of short hairs fall out. My hair is dry anyway, it feels super brittle right after treatment. Good news is, it doesn't seem to make my hair look as thin at my scalp, but I do have a lot of fuzz and also its quite thin at the ends. But in a few months, having a good haircut will feel great I'm sure.
mymomwillsurvive I found out on a Friday that I was starting treatment on a Tuesday and was able to get the cold caps in time. I did the Penguin caps, but the Artic caps company also said they could accommodate. It might depend on which company you are using and what part of the country you are in and I would try to contact them asap and see what they can do. I assume you mean it begins next week (not tomorrow?)
0 -
Girls, I just want to share that I just finished a 5 hour hike (climb) Mount Beacon in NY. I am extremely proud of myself. It was 90F! I was wearing cap whole day and tried to use handheld fan just to chill my hair once in a while. I hope it will not be a problem with hair loss. I just can't sacrifice workouts..and how can you not sweat in the summer?
My friends think I am crazy to be hiking 5 hr.on chemo.. They all call thinking i am in bed and helpless.. NO way!! They all healthy and say or.. we wouldn't be able to do it...
Anyway, it is my approach to fighting cancer.. And i had no depression today good mood whole day! F..ing cancer was not on my mind. It felt felt like cancer is not something related to me.
0 -
leesa, I used Latisse and it did help! A tip my PS office(where I got it) gave me was to put a drop in the cap and use that one drop for both eyes....it saves a lot on the cost of it!!
Victor yak, Goodfor you!! That is awesome:)
I start the cold caps June 9th....thanks for all the tips everyone! I may be taking some Tylenol and Ativan before I go:)). Oh, and my heating blanket!
Kathy
0 -
SacCat~ How's the shedding going?? think we had our first chemo on the same day, 5/10. On day 20 and still shedding, though it has slowed about 50%. I would say that I have already lost about 20% so far. the hair in front of and behind my ears is almost gone and the overall volume of hair has decreased(my ears stick out through my hair now).
Heidi~ when did your shedding slow way down? didn't you start shedding around day 14-16?
sending hugs to all!!!
0 -
BBwith BC45,
Your hair looks gorgeous! Thanks for the info about the shedding going on and on long after chemo. I was not prepared for this. I guess it's better to have broken strands,and a fuzzy look, rather than bald spots.
For all who worry about bald spots, or really big parts, Toppik, is really a life saver. For patchiness around the front of hair, and under what bangs are left, and around the ears, as well as big parts.
Poor hair.. shedding here and there. At least no more fleece lined winter coats, with strands of hair all over the inside lining.
Kthielen, the electric blanket is yummy. I also wore a silk turtle neck under a sweater as I tend to get cold. Oh, and high socks to go over my bottom of my slacks, when the blanket did not fully cover my legs. I had Ativan included in my push infusion, so I was pretty spacey for most of the 7 hours I was under the cold caps, after the infusion, which only took 1 1/2 hours. My cold cap helper, cost a fortune, but worked very hard
making sure the temp.of each cap was as cold as it needed to be, and that I was comfortable. Only the first cap or two felt really cold for about 5 minutes each and by themn scalp is cold for the other caps. I was told and did tak an an acetominophe before each infusion to prevent any headache, and it did.0 -
sahrahrae: I had a heavy shed starting on day 15. I would say it slowed down around day 28. I am now on day 34 and do still shed although the amount of hair strands after a wash is half of that on day 23. It could be because I have less hair now ...however the overall thinning is not too noticeable and most people including my husband and mom can´t tell.
I do not have troll hair yet. My hair is naturally very oily and the infrequent washing seems to make it shinier and softer. Knock on wood :O
0 -
DistrictGirl -- You can totally do it and I think it will make you feel better as you go through chemo. I took 2 Tylenol and 1 Ativan by IV at the start of each session. I had a headache for about the first 10 minutes, but it was totally tolerable. It was not the worst headache of my life. And I had great results with cold capping. I am 1 month past the end of my chemo, and NO ONE can tell I did chemo. I am already feeling better, and I don't think about cancer all the time. It was totally worth it to me. (By the way, I was 39 at diagnosis.)
0 -
How are you all washing your hair? Are you sitting in bath and pouring water over your head? bending over the tub and pouring water over hair upside down? I've been washing upside down over the side of tub after a shower and am wondering if I'm putting extra stress on the follicles....
what is your method?
0 -
I am about 5 weeks past my final chemo, and I'm still washing mine in the sink. I am really hoping to move on soon though. I know several ladies said they would do it in the tub. How do you do it? How warm is the water? I'm still using cool water, but I would LOVE to soak in the tub!
0 -
Sarahrae - I am washing my hair in the kitchen sink. We have one of those faucets that pulls out so we put it on very low and then DH washes it for me. It seems to work pretty well and puts very little stress on my hair. It also prompts me to really scrub the sink each time before I put my head in there so that's a bonus, lol. I have shorter hair though so for someone with longer hair this might not work as well.0
-
Thought I would add a few photos, ignore the bathroom in the background and the fact that I suck at selfies, lol. My hairline looks to be receding a lot on the right side but it isn't, I just can't seem to not angle my head too much when I take pics
I also lack most of my boobs at the moment so ignore how the top is hanging too 
As I mentioned above, I started with short hair and here is where I am at now, 42 days past my first chemo, number 3 set for tomorrow:
Back - you can see a few stragglers coming out at the bottom. Hubby should have plucked those before he took the pic, lol.
Top - ignore the gray and the dandrufffy stuff, lol
Left side - ignore the bonus steroid chin in these next two!
Right side - I have had the most shedding on this side around the ear and the nape but the body in my hair hides it decently I think
As you can tell I have pretty thick hair but it seems to be doing okay. So far I am happy, fingers crossed I can make it work through two more treatments!
0 -
thanks guys!
I'm using cool/tepid water and barely(really, not at all) massaging my scalp. I turn my hair over the side of the tub(my hair is down to my breasts) and use a large cup to pour over. I'm just curious if I'm putting extra stress on the follicles by essentially bending them the opposite way and putting water weight on them. thought I would try sitting in the tub and pouring water over it with the my hair straight down instead of upside down. i'm losing sooooo much I'll try anything at this point. I've even put off washing a couple of days because i'm worried, guess I should just bite the bullet.....
I've only been washing 2x a week since chemo anyway, it's day 21... keeping my fingers crossed that I still have hair tomorrow
0 -
I just wash my hair in the shower with lukewarm water. I used to do cold water but got tired of it. I don't lose much in the shower. I guess what I'm doing is against the rules but so far I don't think it matters. I'm careful with my scalp though.
I'm almost 2 weeks out from my last chemo. It seems like it went quick looking back but yet it was the longest 12 weeks of my life! I'm ready for the shedding to stop. My oncologist is amazed at my hair but to me it feels like I don't have much.
I'm barely working now because I am too fatigued. It kind of freaks me out because I'm self employed and single. Hopefully I'll feel better soon and can work more regular. Cancer sucks.
0 -
Í
ok. Ladies...are
you ready for my weekly fun cold caps photo? I am sitting at Sloan hospital waiting area after chemo. Have 3 more hrs for caps. And here my cheering you picture;) hope it will make you smile a bit...0 -
Hi ladies, are you ready for my weekly Cold caps fun photo? I just finished by #5 Taxol. Waiting for my hubby to pick a car.3 more hrs for caps to go...
0 -
You ladies are making me feel so much better!
I am new here...
I am 28 and was just diagnosed with IDC (ER/PR+) in February after I found a lump. I had the lumpectomy, and the OncoCX test came back a 39.
SO the dr recommended 4 treatments of Taxotere/Cytoxin. I will start on Thursday 6/2.. I should be getting my Artic Cold caps tomorrow. Which is what I am most afaid of... losing my hair. Saying that outloud always makes me feel like the most vain woman in the world. :-(
Im also afraid of being sick. I have a baby, and I need to be able to take care of her, so I am just hoping and praying I take it well. My mom will be staying with me for a few days, longer if needed.
Thanks for being light hearted with your snapchat photos- they make me feel a lot better about the anxiety that is welling up!
0 -
Hi "You can do all things!!",
I did the cold caps because
I did not want to loose all my hair either. Not because of vanity so much, as not wanting to be defined by having cancer, and having to deal with other people's anxieties, and concerns. Being able to keep my own look,was very important to me. And with help of cold caps, so far i am still me, though with thinner hair.
I had last infusion in Feb. still shedding. Mostly I can tell, and my sink.
Of course you worry about what lies ahead. Each chemo cocktail can have different side effects , but there are so many meds to minimize any Side Effects. Having your mom ther is good . So you can find out what your rhythm of good days and tired, or yucky days are.. I noticed you posted on board for women starting chemo this month. It is comforting to have a group of companions. But also posting to a Board like "more tips and a shopping list to get through..." I looked for a Board for you of people who took TC but did not find one easily. The great thing about a Board that has both newly diagnosed and those of us who have been there is the advice and comfort that experienced people can offer from their own experience. I got so much love, comfort and great advice and suggestions from CMF board by women who, amazingly, years after chemo is over still post and help guide and coach people through to the end of their chemo. So , finding twin sisters is good, but so is the advice of those who "have been there, done that".
Hugz to you,
you can get through it, and then it will be done with!0 -
icandoallthings - I am doing the same regimen, TCx4 due to a high OncotypeDx score as well. I am also cold capping and for me it is about privacy. I work with a lot of customers and our international locations for my job and just didn't want everyone to know or have to explain over and over. I will also admit that seeing me in the mirror I think has really helped a lot. Overall chemo has not been as bad as I thought it would be but I am only getting treatment 3 tomorrow and it sounds like that one was tougher for a lot of ladies. I had a double mastectomy since I had a bilateral diagnosis and honestly the thought of losing my hair stressed me out more than losing my breasts. I don't think you are vain at all, we all have our reasons for choosing capping and I think it is great an option exists for those that want to pursue it.
You will get through this! I found the anticipation was worse than the actual infusion once the day came. Will be thinking of you! There are quite a few other frequent posters on this thread on the same regimen so you have company on this ride!
0 -
I totally didnt mean to imply any one here is vain by the way! Im so sorry if that came across!
I lost my step mother to cancer 2 years ago. She had glioblastoma in her brain, and hair conserving efforts were never even a thought- so for me... thinking of her battle, I feel weird worrying about my hair.
My reasoning is also privacy based and so I'm not labeled. Ive had quite a few struggles over the last few years, and dont want this to add to the 'poor girl' list. I want to just stay me.
Amyabs- how is your coldcapping going so far?
Thanks for understanding ladies! I feel proud to stand with you all against this horrible C word.
0
