Cold Caps Users Past and Present, to Save Hair
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Happy New Year everyone. This is my first post on these discussion boards and am looking forward to the wonderful collective pearls of wisdom you can share. Still recovering from the news that notwithstanding the Stage 1 diagnosis of breast cancer and negative (clean) report on the sentinel node, my Oncotype DX score came in a "38". So now I'm preparing for chemo consisting of 4 cycles/infusions, 3 weeks apart, of the TC cocktail of Docetaxel + Cyclophosphamide. That will be followed 3 weeks later by 3.5 weeks of daily radiation.
With all of this, my biggest issue is the inevitable hair loss, so I've started to investigate my options. The DigniCap is not available. I meet next week with the chemo educator and will inquire about whether the staff at the facility where I will receive treatment has the experience in working with the Penguin cooling cap (I watched their video this morning, and realize that it requires someone who knows what they're doing to get it on/off so as to maximize its effectiveness). As for the other options, I've also been reviewing the Paxman web site, but it's unclear whether that requires my using a chemo center that is set up for it like the DigniCap. What has been people's experiences with the Penguin cap, or others? Are there other questions I should be asking or researching? In advance, thanks for your collective patience.0 -
hello Shlomit,
I believe both pax and digni are found in some infusion centers. I had none of those by me so I rent artic cold caps. Nurses at infusion sites typically will not change your caps, you need to bring someone with you. My husband does mine. We practiced the the night before, and it is easy now for him ( we are on taxol #4). They may look intimidating at first, but he got the hang of it quickly.
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Shay, thanks. DigniCap definitely is not available at the infusion center I'll be using. As I'm single (I don't believe my cats count), I don't know that I'll be able to find a friend to accompany me to assist. (I get the occasional: "let me know if there's anything I can do" -- but it's no different than when someone asks "how are you" and keeps walking.) Anyone with any other ideas, or "rent a friend"?
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Shlomit - here is a link to locations that have a Dignicap or Paxman machine available, or a medical freezer (to use with the Penguin caps or other caps that require manual application). Maybe there is one available near you and you could switch infusion sites. http://www.rapunzelproject.org/ColdCaps/Locations....
I am single too, but I was lucky enough to have two retired friends who came with me to most of my 12 infusions, plus a couple others who came once or twice, plus a very experienced person who actually is in charge of Penguin rentals for this area, who taught my helpers and filled in when one was not available (for a fee, of course - it's her business). I don't really have any great ideas for you, unless you could put the word out on social media that you need helpers. Or if anyone has cold capped at your facility before, could your facility put you in touch to see if the cold "cappees" or their helpers could work with you?
Erob, I have been keeping up with this thread since my treatment days in 2012, and I don't recall anyone dealing with post-partum hair loss in addition to capping. Are you still losing hair? If not, I would think whatever you have left would stick around at the "normal" rate for people getting taxotere and carboplatin.
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Pat, thanks. I'd checked the Rapunzel web site earlier and the Paxman facilities are either in Northern Virginia or in other areas of Maryland which are not near to me. (I'm in the Metropolitan Washington, DC area which is in the top 3 or so worst traffic areas in the country.) Apart from determining whether the oncologists associated with these facilities are in my insurance plan, the drive to any of these locations would be 1-2 hours, while the facility where I'm likely to be going is a 10-15 minute drive from my home depending on how I make the traffic lights. From what I've checked out from the various cool cap "companies" listed on the Rapunzel site, most ship freezers with all their supplies, and finding dry ice in this area won't be a problem. So far, I've kept my breast cancer off of social media (Facebook). Anyway, I meet Tuesday afternoon with the chemo educator for the facility, so this will definitely be a part of the discussion. I've also emailed a local organization -- found them on the Rapunzel site, too -- to see if they may know of resources (they help find/provide financial aide for those in need for cool caps which, thankfully, I don't need).
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And, just like that, a very, very, very dear friend who is semi-retired has stepped up and volunteered (at least for the first 3 treatments, possibly the 4th if it's scheduled before she leaves for a planned trip to the Far East). Now I just have to do some more homework to decide on which of the cold cap options to go with. Thanks for your ideas and support. I'm sure I'll have more questions on other threads as the journey progresses.
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Shlomit - great news!
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Shlomit-- sorry to hear you are joining our sisterhood, but when it comes to capping assistance, you are on the right thread! The women here have guided me through this process and offered so much support and love....priceless!
On 12/19 i finished 4 TC (Taxotere & Cytoxan)-- same drug cocktail you will be receiving-- and had great success capping thus far, as I still have to receive 2 more infusions.... but since you are receiving 4 I will relate from here. I used PCC, and my husband has been my capping maestro. With PCC, you definitely need a point person. We have had an additional friend helper join too at the hospital just to take assistance load off of me-- mainly because I had my hands and feet on ice during Taxotere. My husband says he would pay this experience forward and volunteer to help anyone with their capping that needed it-- like PatinMN mentioned about asking your hospital if there are any previous "cappees" that may be willing to be of assistance. The challenge is the amount of time because it begins over an hour before infusion and continues for 4 hours past completion. A lot to ask of one friend-- but I have had several incredible long-time friends as well as family members that have flown in to assist with capping and care for my family while I recovered and rested. Anyone that would be willing to help in that capacity?
Again, I used PCC with great success.... if you across back last several pages you will see my pics I post right before each infusion. My friend used Arctic Cold Capd for 6 infusions of TCHP, and found them much easier to use than PCC, and had great results after 4 infusions. I think with 4 TC, you will have great results no matter which cap you choose-- you just have to follow instructions and protocol to a T!
Please continue to ask questions as you navigate through your decisions. I have #5 coming up on Tuesday so will be posting on Monday my hair stats and pics again. Good luck and we are here for you! ☺️
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mamafelice - way to go! You are on the home stretch! I wish you the best with your final two treatments. I finally stopped shedding after 5 months post chemo, I'm 6 months out now. I'm so thrilled with my hair results but still nervous about going back to my regular hair color. I may continue using Madison Reed Radiance permanent hair color kit for 2 more months to be safe. I have lots of new hair growing in at the nap of my neck. I guess I didn't freeze that area well enough. I lost my eyelashes for the 2nd time during 6 months Pfc but they are growing back. Here is the most recent pic of my hair. I used PCC and had taxotere/cytoxan 4 treatments. I also wore my caps one hour longer than suggested. Good luck everyone! It works!!
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MamaFelice, what an inspirational post! Thank you for taking the time to share your experience with me/us.
I watched the Penguin video the other day, and while the inventor (or whoever the speaker was) wasn't the most exciting of personalities, I have to say it appeared to be very complicated with a lot of opportunities to miss spots in terms of getting it snug enough. I started looking at the other caps listed on the Rapunzel Project page, and will spend time today and tomorrow exploring any other demo videos that are posted. I will also forward the links to my friend who has so generously volunteered to help. Depending on when I actually schedule my first treatment, my friend should be available for at least 3 of the treatments, if not all 4, before she leaves the country on a previously scheduled sojourn. That will give me time to scout around for someone for the 4th treatment, if needed, and then hopefully bring in #4 to learn/assist on the 3rd treatment. What's so encouraging is to read your experience, and others like Pam's, which makes me believe that the effort will be worthwhile.
If you don't mind my asking, why did you have your hands and feet on ice during your Taxotere treatment? Was the Taxotere infused separately from the Cytoxan?
Again, many thanks!!
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Sholmit - I also strongly recommend you should Ice both hands and feet during taxotere treatment. Yes, taxotere and cytoxan are administered separately, not at the same time. I iced during taxotere only after I had some serious problems after my first treatment which i did not Ice. The ice water limits the amount of taxotere chemo reaching your feet and hands to prevent neuropathy, nerve damage. Your feet and hands can became so numb that you might not be able to walk or use your hands/fingers.
In addition, I asked my oncologist to slow down the amount of time for my taxotere infusion. I stretched the same dose over 2 hours instead of 1 hour which really helped me. Listen to your body and let your oncologist know your symptoms so they can adjust and help you.
Best wishes
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Shlomit, I was on your regimen last year and it is necessary to have someone go with you to use the Penguin System. It's a long day, the cap goes on 50 min before infusion, then the hours of infusion itself, then another couple hours afterwards. I'm so happy you found someone to help. It's more clockwork than anything like getting it prepped and at a certain temperature every 20-25 min and helping with the positioning and straps, is their job all day.
Pambc--you look amazing! I'm almost 1 year PFC--is that possible??!! I should probably update my pic since I lost most of my hair throughout the year. My once bra strap length hair is now above my shoulders and 80% of it is 4 inches long. I never went bald and the shed was absolutely unnoticeable after 5 months (I posted on the the before/after sight in May) yet each month I look in the mirror, I have less of my long hair. I also lost my lashes 3 times, yes 3!! At 3 months PFC, 6 months, and again at 9 months. I never went completely bald lidded like the first time, there were tiny lashes underneath coming through. I hope I'm done with that! They do grow in fast-about 4 weeks afterwards and I use Latisse which makes them amazing when I do have them. Also, my new hair is amazingly thick! I forgot how thick it before. Just wish it grew faster!
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Pambc, great tips. Thank you. I printed out your reply to have when I meet with the chemo educator this week.
Pamela, thankfully the friend who is coming with me (I think she'll be studying all the links and info today, possibly wondering "what was I thinking") is phenomenally organized, more than most people I know.
Having read another post this morning in this wonderful "community", I also want to check with some of the local breast cancer support groups to see if they have or know of a resource person who might be able to meet with us on the 1st day to help train in the correct use of the system and get us off on the right foot. I'm exploring the Chemo- and Arctic Cold Caps, as well as the Penguin system.0 -
patinmn, my postpartum hair loss seems to be getting less and less, but I still find stray hairs everywhere! I’m also having another worry... my 4 month old pulling my hair! She only started doing that a few days ago, but I’m so worried each time she will pull it my hair will fall out. It would be ok if I could pull back my hair, but I’ve been told not to pull back hair while cold capping. Maybe I’ll just do a loose, low pony tail.
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Happy Sunday ladies!
Pambc-- You look amazing! I cannot believe you are now 6 months PFC! And that Pamela is now 1 year out! That's fantastic! Pambc-- have you found new hair growing back throughout your head or only along back of neck? I'm so curious how all the fallen hair will grow back and when that starts. How have your physical bodies bounced back? Pains me that I still have 2 more TC to go, but after #5 on Tuesday I will only have 1 left!! Wahooooo! I'll be finished with chemo by month's end and ready to officially ring in the new year!
Shlomit-- sounds like you are doing all your research and gathering all the necessary info before beginning treatment. Like Pambc, I too ice my fingers, toes and mouth during the Taxotere hour-- Brrrr!! It's a chilly hour for sure, but I have avoided neuropathy issues thus far so will continue to be proactive in preventing.
Well, I enjoyed my 2-day before chemo shampoo and took my updated photos. I keep on shedding every day-- especially when I comb my hair and I have a nice little hair poof in the sink. I would say that I've lost about 1/3 of my hair, but when washed and fluffy it is hard to tell. Erob-- you mentioned pony tails-- I've avoided them, but French braids have been my "hair saver" especially on days 5+ after wash to help me hold out until the next one. I may give myself a trim-- along the bottom longest layer that is getting thinner. I figure if I shorten the bottom layer it will thicken up the next layer!
Thinking of everyone and I look forward to seeing you all on the other side of #5! 😘🦋💪🏼
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Forgot to mention-- my brows and lashes are totally thinning. Becoming a pro at drawing in the brows! 😎
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MamaFelice - You are still looking great; like you've got a full, thick head of hair! And if those brows are drawn on, your skills are far better than mine.
Yes, both my brows and lashes are also thinning. There's a gap in the middle of my upper left lashes. I use charcoal liner pencil and dot it into the spot. a do a light line along the outer corners, then smudge a bit to make myself look more or less normal if I have to be seen in public.
I feel as if I've seen posts somewhere here about hair starting to regrow during chemo, but cannot find any of them via a search. Does anyone have any encouragement to offer on that front? I still have 4 more infusions to go, and due to the seborrheic dermatitis I developed just prior to Round 2, have probably lost more than half of my hair already, with a significant bald spot on top. The scalp condition is much improved with daily application of a topical steroid, so the shedding has slowed. And I'm determined to continue capping for the long-term benefit regardless. But it would be great to see a few new sprouts starting to fill in before this is all over....
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Good evening cold cappers,
MamaFelice-your hair looks amazing!! I am praying that you have a good #5 on Tuesday. I will also be glad to see January come to an end! My 4th, and final TC is January 17th.
Magari~hang in there! I thinned A LOT on top. It all happened around infusion #2 but it stopped. Last week, I took a mixture of olive oil and coconut oil and spread it all over my scalp and my hair doesn't feel as dry. I slept that way and then washed it out the next day. My scalp stopped itching! And, I have read that olive oil is great for follicles and hair growth. Don't be discouraged with how much hair you have, I have noticed tiny hairs re-growing around my face. So, I do think hair starts to re-grow during chemo. It seems like everyone has some sort of shed around 18-25 days from the first chemo. Hang in there!
Pam~you look fantastic! I love it when someone who has cold caps comes back to share your experience! It means a lot!
I've got one more infusion to go on January 17th and then I'm ringing that bell! I have been taking B12 (liquid), B6 and glutamine. I have not had any neuropathy and hopefully I can escape this last time as well. Also, for those of you starting out with cold capping, that "ice cream" headache can be pretty horrible, but this last time, I took 4 advil about 30 mins prior and then held a warm towel up to my face and it was not bad! The first two times, I cried. But, take something 30 mins before-it seriously helps!
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New question re: saving hair along with the cold caps. Have any of you heard of, or used, Brian Joseph's Lash & Brow Gel? It was recommended to me today to help preserve eyebrows and eyelashes. Before I send off my $50 or so, I wanted to know whether it's snake oil or the real deal. Thanks, in advance!
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I use Brian Joseph's and it is working so far. A friend of mine who had bc last year told me about it and she did not lose her lashes or brows.
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And that's what I needed. Thanks!!!
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hi ladies, love the photos - you guys are proof cold capping works!
Lizabeth and Shlomit, whatever you decide to do about lashes and brows, remember to continue for at least 2 or 3 months PFC. I had 4 rounds of TC and didn't use anything on brows/lashes. I did not lose lashes till after I was completely done with all my treatments (October), which I think is very common for TC. If I remember right, there was an awkward 4-6 weeks of no lashes, but they are already filling in nicely now. My brows thinned a bit starting around my last treatment, but did so fairly evenly so they could be easily touched up with a pencil.
Good luck!
Willow
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magari, I keep forgetting to reply about hair regrowth.... i had a bang trim after my 2nd treatment, and my stylist said I had new hairs growing at my temples and on top of my head that looked long enouth to have been growing since my first treatment (probably 5 or 6 weeks at the point she commented). I only check my temples and above my ears because I didnt want to stress my hair by moving it around, but those new hairs kept on growing thru all my treatments and are about 1.5 to 1.75 inches long now (3.5 months PFC). Without capping, I wouldnt have started to grow new hair till at least 3 or 4 weeks after the last treatment. No idea how much hair grows per month, but I'm sure it'd be nowhere near as long as it is now 😄
Willow
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Hi girls it's been quite time I haven't written in this thread. I finished chemo 3 months ago. I am trying to move forward. For the newbies, keep going it is worth it. I lost 50 % of my long hair because i washed it in a sink the day 20 and it got so tangled like a nest that i couldn't do anything to save it. But i didn't lose the rest so it was good, i style it with a pony tail all the time and when i go out i wear halo extensions. That makes me feel like i used to be. The people that doesn't know they don't notice that.
The hair is growing fast. I am taking Biotin 10 000 mg. And I still wash it 2 times per week. I dyed for the first time last week with revlon without amonia. It was ok. I used eyelashes extensions all the time since last week. Now i have eyelashes but short. Every night i put castor oil on my eyebrows and eyelashes. My best tips for the newbies are:
Don't cut your hair. Don't comb it everyday only before washing it. Don't wash it on a sink.
Good luck! It is hard but it is worth it.
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Willow - Thanks for the info re new growth during your chemo; it's very encouraging to hear!
Lizbeth - Thanks for your reply too. My scalp is still pretty oily (as it was before chemo.) I think the seborrheic dermatitis I developed resulted because of the reduced hair washing as part of the cold capping protocol, and my dermatologist agreed. So I am now washing about every 3 days. The topical steroid she prescribed has helped a lot. I estimate the condition is about 85% improved and my shedding has also slowed down significantly, thank goodness.
Chemo # 3 was yesterday and since I wasn't shedding so much during the process I am hopeful that I'm back on track to save most of what hair is left. And with new growth starting soon to fill in the bare spots, it will all be okay.
Re brows and lashes - Because I'd read so much about people losing them PFC, I've opted to use castor oil during treatment since it is so much less expensive than Latisse, Brian Joseph's, etc. Both my brows and lashes are hanging on so far, except for the above-mentioned gap of a few missing upper lashes on my left eye and slightly thinner brows. I bought NYX brow mascara today and it's easy to use and makes them look a bit fuller.
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NLH--I had the same treatment as you--12 weekly taxols and herceptin every three weeks for a year. Used Penguin. Great success. Very little hair loss during treatment (I saved the hair in baggies each week--lost a little more after about 3 weeks, then was consistent, with about 20% increase for 6 weeks or so after taxol stopped). All in all, I probably lost 10%? I am about 8 months after taxol ended, and my hair is thicker than it was before I started the chemo. Good luck
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Pambc & Mamafelice - Your hair looks terrific. I am happy for you.
Pamela23 - When I was starting chemo in April, I remember seeing your PFC pictures. They were very encouraging for me. I thought you had the best results anyone can wish for. You used Penguin Cold Caps and you still lost so much hair during 12 months post chemo, per your description above. I also used Penguin Cold Caps and also lost about 80% of my hair. The difference is that I lost most of it while on chemo. I finished chemo on 5/30/17 and my new growth is about 4 inches. My hair grows fast. I need to post pictures on the Before and After topic you started. Please post your current picture when you get a chance. Sorry to hear about your lashes and your hair. I hope you don’t lose your lashes again. I have been wearing a wig. I haven’t colored my hair and have lots of gray, but at least it’s fuller. I will color it before the summer starts and I will get a Hiddencrown Halo. In my opinion, Penguin Cold Caps aren’t the best.
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Magari - I, like you, had oily scalp before chemo and developed seborrehic dermatitis during chemo. I also started using a topical lotion, as well as Nizoral 2% PFC. I recently found a very good shampoo and my scalp feels great a soothed after I wash my hair. I bought it at Costco online. The name is “purad’or Advanced Therapy Shampoo”. There is also a “purad’or Advanced Therapy Conditioner.” It’s supposed to reduce hair thinning. It really helped my seborrehic dermatitis and it’s 80% organic..
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Cali58 - Thanks for the tip about the Pura D'or shampoo. Just found a "lightening deal" for it on Amazon, so ordered and will give it a try. Dealing with a new scalp issue in the midst of cold capping is extremely upsetting and frustrating.
It's great to hear that you've had 4 inches of new growth in 6 months PFC! My hair always grew quicly pre-chemo, so I am hopeful that it will continue to do so now.
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hi all, I'm 8 days post chemo and waiting to see what happens to my hair. So far so good. When can I expect the first shedding to happen? When I was given my tx plan, the cold-hearted evil doctor just matter of fact stated, and on day x all your hair will fall out. I was in such a state of shock I don't recall which is day x, 15? 20?
What I do see on my head, is the most godawful wiry grey hairs sprouting around my part. I had a light ammonia-free color rinse done before xmas and it didn't make it past the first wash. My MO under her breath spoke of some vegetable natural coloring that "could" be ok, but she didn't want to promote the painting of anything on my scalp. Has anyone tried any of the otc powders? I have dark blond hair but boy those grey/white ones stick out and don't look blond at all.
From what I've read Taxol / Taxotere can or can not have the same effect as AC/EC on hair (confusing). In fact Taxol has caused permanent hair loss in some people! Is anyone doing cold capping once a week for 12 weeks? I figure the 4 txs can be dealt with as whole day affairs, but weekly?... ok, add that to the long list of utter inconveniences this journey has dealt.
Vivianlu8 - why not brush hair? I thought we were supposed to brush everyday (lightly) in order to avoid tangles that would then have to be ripped away with hard brushing?
My husband keeps lightly pulling on my hair in these past days. His excuse is that he wants me to be prepared for total hair loss (wig is picked out, would just have to order it, if need be). I'm about ready to punch him.
Off topic, but does chemo cause zits? I am appalled to find that I'm breaking out! Is this for real? Isn't the rest of the garbage enough without adding insult to injury? SIGH...
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