Cold Caps Users Past and Present, to Save Hair
Comments
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Dryness was an obstacle for me with the chemo. I kept 70% of my hair and was very active through chemo. However, the protocol does not Tailor to hair types. I kept most of my hair but cut 5 inches off at the ends because the hair was so fried. I get the need to stick to normal activities for mind and body healing. Chemo is so drying and I think I would have benefited with more intensive conditioning. One obstacle you might have is when the shedding starts, it can get tangled in the hair. This was the worst part of the caps. Heavy shedding with limited combing and having knots to comb through. That is when I lost the most hair. Are you swimming in chlorine?
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soltantio: I hear you! My favorite -- and most overall effective -- form of exercising is swimming. At the end of my treatment, it was definitely work. Though clinically my red cells were fine on my labwork, I could feel the difference: going up stairs, carrying anything, walking uphill, swimming -- all were much more work. But I am as stubborn and focussed as they come, and I made myself swim every day. In fact, by the end of the swim I felt better than when I started. It usually takes me 45 minutes to swim 1.25 miles, but it took me over an hour to do that distance.
Btw, Frank never told me not to swim 2.5 years ago -- in fact he helped me figure out how to do it safely. So I'm surprised that they tell people not to swim, it clearly worked very well for me. (Frank also figured that having my head in cold water for an hour each day was an additional benefit. This was before he recommended that people wear caps between infusion treatments for added support.)
Susan
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During chemotherapy, after every, solitary hair I owned was gone, I considered the irony: up until that point, I'd spent a fortune shaving, waxing, plucking, trimming and otherwise ripping out any suggestion of body hair. Then, when I, finally, had no hint of hair whatsoever, all I could do was wish for the day it would grow back. Go figure.
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soltantio: I had 4TC@3. I found that at about the 2 mark I no longer had to shave, and anything pluckable didn't return for months. Everything down south went pretty much on the Day 14-15 mark, but I used that as an excuse to get some silky things :-) It was an astonishing measure of the success of the caps, to have a totally hair-free body (save brows and eyelashes, which hung on til the end) and a 90% full head of hair. I loved having a shave-free summer!
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Ok, I am 16 days past my first chemo. Hair is beginning to shed, but not in handfuls. Makes me very anxious. My body hair is still holding on though. Like you sebm9, I'll feel confident that the caps are working if, when my body hair is gone, I still have a head of hair. I know it will thin, but oh how I hope it won't all fall out!
My SEs were very mild, and for that I am tremendously grateful.
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I have had some strange itching and almost tingling in my scalp this week. Did you other CC users experience this? Should I be alarmed?
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Yep, I've had lots of bouts of tingling, itching, even scalp soreness. In fact, just had another round of it last week (I'm 7.5 weeks PFC). I'm still shedding, and my hair is thinner, but I still have enough coverage that most can't tell. The thinnest part is near my crown.
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Theladygrey: how did your hair cut and highlighting turn out? I waited 6 months pfc, too, and it was a huge day to be a blond again! Tears came to my eyes when I arrived at the hairdressers as I imagined where I'd be if I had not done PCCs. My DH brought me flowers knowing how long I waited for that day!
Now I'm one year and 3 months pfc and do anything I want with my long hair and have no restrictions.
I highly recommend Penguin Cold Caps!0 -
Theladygrey: how did your hair cut and highlighting turn out? I waited 6 months pfc, too, and it was a huge day to be a blond again! Tears came to my eyes when I arrived at the hairdressers as I imagined where I'd be if I had not done PCCs. My DH brought me flowers knowing how long I waited for that day!
Now I'm one year and 3 months pfc and do anything I want with my long hair and have no restrictions.
I highly recommend Penguin Cold Caps!0 -
Yes - I had a sore scalp at times through chemo but kept most of my hair. It felt like I had worn a ponytail too tight all day or something. I started shedding hair "south of the border" around 15-17 days after my first TC infusion. I started shedding some hair from my head around day 21. Hang in there girls! The caps work!!!!
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I had tingling too, but tried not to worry about it, so don't worry either. It's normal.
I was warned that shedding would start between the 18th and 24th day - which is probably when most chemo patients lose their hair and go bald. Mine started after the 21st. First just a few hairs dangled, then a few more until I was constantly picking long blonde hairs off of my dark clothes. A lot more came out during my shampoos which did make me nervous. The most came out during shampoos 4 and 7 days after my second chemo treatment, then the amount lost started becoming smaller and smaller. I know because I kept what came out during each shampoo out of curiosity and compared it to what had come out during two pre-chemo shampoos.
I am still losing hairs due to shedding almost four weeks after my last T/C treatment, but it's far less than it had been at its height. Considering that we all have more than 100,000 hairs on our heads and we all normally shed a certain amount every day - think of how many get stuck in your hair brush, I don't think we actually lose an enormous amount to cold cap chemo shedding. It just seems as if we do as each hair is so precious to us because we worry that we could possibly lose all of them.
My hair volume is definitely thinner, but I still have complete coverage which seems to be what other ladies on here have reported. Most people can not tell I have just finished chemo, or even that I have been sick. Sometimes when I tell people I have been in treatment for breast cancer, I have gotten some strange looks because I still have hair, then I tell them about cold caps.
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re itching: For those who are experiencing scalp itching a couple of weeks after their first chemo, this is totally normal. This is a combination of (1) the drying effects of chemo [ you may also be experiencing lots of flakes, looks like dandruff...it's the outter layer shedding and is normal], (2) the effect of decreased hair washing. It goes away, but usually begins around the time you would otherwise lose all your hair (between days 14-21 for most). Your shedding usually begins at this time, and it will seem to be heavier on hairwash days...but remember, you are going to have 7x as much lost hair with one weekly wash, as you would during a single daily hair wash. In my chemo, this is about the point where I began collecting hair in a baggie, as a measure. Anytime I thought all my hair would fall out, I'd just look at the little pile of hair in the bag and compare it to the massive amount on my head. It was a very helpful visual tool!
Btw, I still have my bag of hair :-) When I am doing an in-person coaching session, I can show new users the amount of hair I lost throughout. It felt like tons to me at the time, and I could tell a difference in volume, but I had complete coverage and only lost about 10% or so.
Once my hair started growing back, it came back in droves -- I probably have 120% of the hair I had before chemo, and it is big and curly and I like it.
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It's not the best picture, and it's small and not very easy to see, but I just posted what my hair looks like three weeks post final chemo as my avatar. There doesn't seem to be a way to add pictures directly to this thread or I would have. If anyone knows the trick, please let me know.
I have a full head of hair still. It is very dry and damaged looking, but a few conditioning treatments along with a few trims would help it enormously. I think I have had a lot of breakage as it is thinner on the ends, as can be seen.
Of course, I could not blow it dry, brush it or curl the ends the way I normally would which used to make it soft, shiney and full looking. But! I still have it, which is good.
After trying and failing to find a way to add "cold cap user" to My Profile, I just figured out how to add it onto my signature. It was ridiculously simple. All I had to do was type it after my chemo description while it was displayed at the bottom of the "Post a Reply" box as I was writing this post.
I think it would be a good idea for those who have used them to add it to their signatures so that women on other threads or forums can see that we have used them. It would be a way of spreading the word.
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Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 02/29/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right) Chemotherapy 05/08/2012 Cytoxan, Taxotere - Cold Cap user, kept my hair
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Well, that was premature. Apparently I can add "cold cap user" to each post, but it doesn't show up automatically on all of them. Rats!
I think I will have to write the moderators to see if they might allow a way to indicate cold cap users in our signatures.
Edited 7:32 pm 8/6/12 Wow! I just noticed that "Cold Cap user" is showing up at the top of my signature. I didn't put it there, so the moderators must have done something.
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Your hair looks great Hortense! I have yet to figure out a way to post a pic directly here, too. I know it can be done, I've seen others do it. What I do instead is open up an anonymous photo hosting account and link my pics to it.
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Soltantio, I feel the same way whenever I post something about cold caps on other threads, yet if I can inform even one person who did not know about the caps, I feel it is worth it. I am relieved when I see a post from a new person, such as yourself, mention using cold caps on these other threads, so I don't have to. Since I am done with chemo, sometimes I feel like I am a cold cap stalker, but I just want the new ladies to know they have a choice. I still feel so blessed that my daughter happened to see something on the web about cold cap therapy, I want everyone to have this option.
Great hair Hortense!
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I am VERY pleased with the cut and color -- she layered an ash blond around my grey streak so I still have the grey.
My husband was pretty relieved. He never actually said he wanted me to color it but he did.
My hairdresser confirmed that I lost around 30% of my hair. I want to emphasize to those starting that ALL my hair loss occurred PFC so don't freak out!
She said the hair loss is most apparent around the hairline and is otherwise evenly spread around my scalp which tells me the caps fit well. Our "Cold Cap Angels" told us that you can't get every cap perfect and they still work-- so don't freak out!
In general, don't freak out! You aren't the exception to the rule-- the caps will work for you too!
On a different note, my son who was biking the "4K for Cancer" --4000 mile road bike ride from Baltimore to San Francisco to raise money for a cancer support charity-- finished up in San Francisco yesterday -- I can't believe it! He can't either....
Of course I wept like a baby when they rode in.
The group as a whole raised almost half a million dollars for the Ulman Foundation without anything pink -- imagine that! They all started in Baltimore and 30 rode to San Francisco, 30 to Seattle and 30 to Portland. My son's group unanimously agreed that Kansas should be booted out of the union -- they had more than one 100 mile day in the crazy heat with literally nothing to break up the monotony.
My son says next summer he and one of his 4K buddies are going to start "Climbing for Cancer" and hike 14,000 foot mountains. I asked him who the charity will benefit and he gave me a blank look -- I think he just wanted a cover story for hiking all summer, but he's going to have to get one of those four letter words--J.O.B.0 -
I finished chemo a year ago June 24th and my regrowth on the bald spot where the cold caps did not quite work is amazing. My hair is thick - just like it was before or better and the regrowth is curly- but I had to cut some length. It was beyond my waist before chemo- but so much had broken or shed that it was just ugly hair. Still, I never went completely bald AND my oncologist is telling people about it now, whereas he told ME that it did not work when I asked if he had heard of it- so there is some progress to get the word out there.
My one question is, has anyone had trouble or luck with getting cold caps covered by insurance. I know Geraldine has told me to resubmitt everything but I wonder - do I just keep sending it in - same as before, or do I add something each time? And what are the chances? Thanks for everything, all of you!
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wonderful! I love mine too!! People comment on it all the time! It is wonderful to run my fingers through it now. I do love it and am glad I did it, stress and all, shedding and all, bald spots around the sides and all.
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I actually don't have a bill or anything from Geralyn to submit. The cost of the cold caps was simply put on my Master Card. I will have to contact her to see if I can get some sort of paperwork to submit. I read a post a few months ago by a woman who had the same insurance as me who said she had submitted her "Cranial Prosthesis" prescription and was reimbursed for it. I am hoping to do the same.
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Hortense, can you please post if you are able to get some kind of receipt from PCC? I might submit mine, too - what the heck. Can't hurt.
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Correction of my post Geralyn, not Geraldine!
I have a prescription from my doc for hair prosthesis, but they turned me down anyway. THey sent me documentation saying my policy doesn't cover such things as wigs and all that relates to it. I have Blue Cross HMO and that may be the difference. I don;t really know.
Geralyn did not send any receipts. She doesn't handle the money. But the insurance company did ask me (at first) for the conversion of U.S. money from pounds. I am not sure why, since they also said I would not be covered for this.
Then they turned me down.
I did ask the London guys for that conversion- they told me it was automatic and changed each day according to the rates and that I needed to figure it out based on my credit card and thier bills which was in pounds and not necessarily easy to match up. A bit crazy. SOme people have been paid after resubmitting though- some said up to three times. I am going to try! I just wondered if I just resubmit the same old stuff or what....I will go back to earlier posts in this blog and maybe it will become clear. That was 2011- March-ish.
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Just looked up my policy. It says:
The Plan pays Benefits for wigs and other scalp hair prosthesis for hair loss due to medical illness or treatment of such
illness, such as chemotherapy.Benefits are limited to $350 per calendar year.
So it looks like if I can get a receipt that lists it as a hair prosthesis I could likely get partial reimbursement.
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Geralyn said she would forward my request for an invoice to the MSC office and that they would send me one by email. I am going to submit it to my insurance and see what happens.
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It worked! I followed directions for posting pictures given by nowheregirl on the moderators page: tkt.hostned.ws/luv/bco_photobu...
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Hello, I'm new to the forum and am so happy to find these posts! I have recurrence of bc with bone mets as of April, so I will be on some sort of chemo forever. I was started on Abraxane in May and am on 4th cycle now. Have lost most of my once-thick hair and am devastated. I just learned about Penguin Cold Caps (so sad I didn't know before chemo!), and I'm wanting to start them on my next treatment. But....I have two questions:
(1) Is it too late for me? If I protect my hair folicles with the caps from now on throughout each chemo session, could I expect some growth to return eventually?
(2) Will I damage my scalp from the cold since I have almost NO hair to protect it? Frostbite?
Peachy
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I am so sorry to hear that it came back with mets
My guess is that as you have started chemo already and have lost most of your hair that it is too late to start using cold caps. Using them on a thinly covered scalp would probably result in frost bite, and when it healed the damaged skin would take any hair with it when it peeled off. My two frostbite spots peeled and left me bald, although there were lots of tiny spiky hairs underneath the frostbite scales which are growing now. I don't recommend frostbite. It's not comfortable.
I am not an expert, but if your doctor says that your hair will grow back it probably will. Good luck!
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soltantio, I had family and a friend help me. Most of us on these boards had husband, family or friend for their helpers. I had my helpers watch the video and practice. They were pros by my second chemo.
Peachy, I would definitely talk to Penguin. You would not want to go to the expense and trouble if it would not help. While the caps would promote hair growth, frostbite would certainly be a concern. I have seen this question asked before, but I don't know what Penguin recommended. Good luck!
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Thanks Hortense and Soltantio!
Did anyone on here use the dry ice for the caps? If I'm only getting 8 caps, can I keep them in just one cooler? I thought I read somewhere that 9 would fit in the cooler, but can't find it again. I've never had any experience with dry ice .... do I put the cooler in the trunk of my car to go to Cancer Center? Someone said not to put in passenger area. Hubby will be along to help. (Thank goodness!) Do we roll the cooler into the cancer center with us? ..... Leaving it in the car would mean Hubby going back to parking lot to change them, and that might take too long. How often do we need to refill with ice? In pricing it today, I may end up spending more on the ice than on the caps! But I guess I'm willing to do just about anything if it would allow me to have some hair.
Sorry for so many silly questions, but I'm so tired tonight from trying to understand what the use of cold caps would entail, so I could get them ordered and here before my next treatment.
Peachy
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Peachy, Private message sebm9, she has a write up on cold caps, and she used dry ice. Yes, you would bring your cooler(s) in the chemo room.
I really hope you can get in touch with Penguin before you order any caps though.
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