Cold Caps Users Past and Present, to Save Hair
Comments
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was it normal for any of you to feel tingling on your scalp while shedding during chemo? My scalp has a tingly sensation in different places all over my head, similar to the feeling of goosebumps! And still shedding a lot but not noticeable.
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hollyD- Yes normal to have a tingling feeling. I had one and kept all my hair
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Hey girls! My name is Jen and I've been diagnosed with a new primary cancer in the other breast, 4 years after my initial diagnosis. I lost my hair back then and it was the worst part (even though I'd had a double mastectomy- still considered the hair loss worse). I'm not ready to do it again and just found out from my hospital about the cold caps. I'm doing the TC chemo which seems very successful for all of you! My cancer center DOES have a freezer. I'm still reading through all of the info (my head is about to explode lol) but I'm reading that a lot of you came back home and wore your caps for another few hours. Will I have to keep switching the caps for that whole time? If so, will I need to get the dry ice since the cap freezer is at the hospital where I'll be getting treatment and not at my house? Thanks for your help!0 -
jennjdance - welcome! So sorry to hear about your recurrence.
Glad you found us, though.Yes, you still need to change the caps every 30 minutes after your last infusion (for about 4 hours post was my protocol with TCH).
I would ask your facility if you can hang out there for the 4 hours - unless of course you want to go home - then yes I think you'd need some dry ice to keep them cold enough.
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jennjdance - I had a medical freezer at my facility too. I just stayed there for the 4 hours after chemo. Make sure you schedule your appointment for early in the day, so that you don't run up against closing time. I'm sure that your facility understands that issue! I also had to schedule around another person who was using cold caps at the same time, as we couldn't both use the freezer/cold cap room on the same day. I'm sorry you have to deal with BC again!
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jennjdance - my center had a freezer - they also created a nice cozy space for cappers to finish off the 4hrs so no one had to buy dry ice and coolers. It made for a long day, but given was only 4 times for me, totally doable.
You might want to just ask your center. Since they are providing the freezer, chances are they've thought this through.
Good luck!
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jennjdance - Cold cappers are scheduled for first thing in the morning at NY Hospital's breast center and allowed to stay in their chairs as long as they need to afterwards until they are done with wearing caps. It makes a stressful day much easier.
It has a medical freezer for the caps and the caps are allowed to remain in it between treatments, so do not need to be taken home. Your facility will probably let you do the same.
And, yes, you will have to change the caps every 20 minutes during that last four hours in order to keep your scalp cool.
Best of luck!
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I go for my second chemo today. I have had one so this is the second of four treatments that I have to have. Then radiaton and then have to wait 2-3 months for my implant. Still filling up my expanders and have a couple more to go. Will be very happy when chemo is over. I have to say with all the meds they give you I thought it would have been much worse so I did not miss one day of work yet expect for my chemo days. I used the cold caps the first treatment but around day 21-22 I started losing my hair but went back on the boards here and another website and they say that that it quite common. I wash my hair ever 4-5 days with baby shampoo and even when I wash it because it is so oily doesn't seem look like I washed it so decided yesterday to start wearing my wig that I bought a month ago. My hairstylist cut the bangs and I have gotten alot of compliments on it. I work with mostly men and sometimes they are not to noticeable so one guy asked me if I lost weight. I should have told him yes but went ahead and told him I was going thru chemo. Other people just said I really like you hair so I just say thank you. Don't know if they know it is a wig or not but less said the better. I cannot go outside with they way my hair is so for the net 4-5 months I will be wearing my wig. I actually like my wig better than I real hair because it looks really good and was the color and highlights that I originally had. Four weeks ago I had it cut to the style that my wig was and cut it shorter so to be more manageable. It helps. If I haven't lost alot more hair I will go back in about 3 weeks and have it cut shorter depending on how much is left. I purchased the cold caps so I am going to go ahead and use them throughout all the chemo treatments I figure it can't hurt. I figure that on the parts of hair that I lose if the coldness can help it not to get more chemo in them then maybe that area will start to go out earlier.
Just a thought but since I spent so much on the caps going to go ahead and use them. My husband comes with me and changes them out every 25 minutes. I also are cold packs for my feet and hands because I don't want to lose my nails or toenails but most of all do not want to get neuropathy.
I use claritan-non drowsy the day of thratment and 4 days post therapy.
Next time I wash my hair I am not even going to comb it and just let it dry and then put either a cap on at home and at night I am going to put it in a plastic cap to try to reduce the hair loss.
Good luck everyone and I will post on the success or loss or my hair and my treatments. I also read the bible every morning because I feel that the lord will show you the way.
Thanks.
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Killgerfunbugs: What kind of cold caps did you use. It looks like the kind that I used. I go today for my second treatment of taxotere and cytoxin. I have had some shedding the last couple of days and am starting to panic. I am using baby shampoo which does not begin to take out all the oil in my hair. I will continue to use the cold caps during the last three treatments I figure it can't hurt. Good luck on your treatments and please let me know what kind of cold caps you are using. I am using the elastrogel hypothermia caps and was told by my oncologist that they were used my many in their office. Any suggestions on shampoo to take away the oil in my hair when I wash every 4-5 days. I figure the less you use it and brush your hair the less you lose. Can't hurt. Look luck everyone.
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Staring chemo next Tuesday and ordered my PCC today. I'm so grateful for all the advice everyone is giving! I got discouraged after telling a few of my doctors and nurses that I was going to try PCC as their reaction was not promising and frankly, a little negative but I'm hoping I can prove them wrong! I will be taking Taxotere and Cytoxan for four infusions. Is it true that the pre med time can be part of the 50 mins that you are supposed to wear the cap before starting treatment?
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I am on CT too and have done 3 cold caps sessions with the infusion. My last one is next Friday. My nurses know that I have to start the caps with the premeds, 20 mins, 20 mins and 10 mins. After 50 mins are up I call them over to start the actual chemo. It will make more sense once you are there.
Good luck!!!! The time goes by fast because you are only worried about the caps and if they are cold enough and putting them on your head. The chemo is actually secondary (although the really most important thing) to our minds.
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Jalsgal- I had the SAME reaction today from my doctors!!! I actually cried b/c I was so disappointed. But my one dr. said it was really just b/c they don't know much about this so they can't give me much positive feedback. They've only seen 2 people do it at their facility and the results weren't great so they don't want to give me high hopes. I'm scared. I told myself I'd make a decision by Friday since chemo starts 2 weeks from next Monday. I want to get them early and practice with my husband.Everyone else, I had a few questions. Can anyone help me?
1. I know insurance doesn't really cover this, but I've seen it covered in a few cases. Does anyone have any advice at all? I called my insurance yesterday and they're saying my dr. needs to call them to tell them this is a medical necessity. When I spoke to my dr. today, she said she isn't supposed to call unless a claim was denied. So do I buy the caps, then put in a claim, and then when it's denied, have her call?
2. I have naturally brown hair, dyed blonde. Since I can't dye my hair for 6 months, plus the 3 months I'm on chemo, it's going to be 9 months of roots showing. Should I go ahead and dye my hair it's natural color? Since Monday will be 2 weeks before chemo begins, I need to do this ASAP.
Thank you all!
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I plan to start cold capping for my TC chemo beginning November 3. Should I trim my hair before I start? My hair is several inches below my shoulders and tends to get tangled when it's wet. Also, is there a brand of shampoo that is recommended?
Thanks!
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Please don't be discouraged by the reaction of your medical team to cold caps. Sadly, it's very common. There are hundreds of posts on here from women who have used the caps and saved their hair. If you are using penguin cold caps, receiving TC chemotherapy and follow the protocol, there is no reason to think you won't be successful as well. We are changing minds and attitudes one success story at a time.
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A light trim should be ok before starting, but don't do any drastic cutting. A lot of women use Dermorganix shampoo. I also used Kenra Daily Provision leave in spray after washing. It really helped with tangles.
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Hi, Jalsgirl.
My oncologist did the same thing. Told me PCC was a waste of my time and money, but I could try it. (While kinda of snickering)
Guess, what?! I have had 4 Taxol treatments and 2 A/C and
I still have all of my hair! Needless to say, he is eating his words now.
I have total faith that he will be mentioning cold caps in the future to his patients.
I truly believe if you follow the instructions given by PCC you will save your hair.
Hope this helps!
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jennjdance...I am a very dark blonde - I highlight heavily. I know what it is like to deal with dark roots coming in...it sucks. Penguin says not to color your hair prior to chemo. I didn't have to b/c I had already taken my hair to brown months before just before my BMX. I just didn't want to deal with the blonde maintenance through treatment.
I know if it were me I'd just dye it brown with as mild a dye as possible...discussing with my colorist...BUT...that is against Penguin protocol...so...you'll have to decide for yourself.
I highlighted again starting at 6 months post finishing chemo. I waited a LONG time b/c highlighting is so much harsher than coloring darker.
There are a few other blondes on this thread - hopefully they will reply ASAP.
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Wanted to thank Hortense and other members for encouraging me to rent/pay for cold caps which were stored at UCLA. They work! I finished with a thin, scraggly pony tail, but never went bald. Bought a wig, but only used it for public speaking. Had the chemo/fuzz hair trimmed 1/2 inch at a time until my own returned, and waited to dye the roots for 2 months, washed only in cool water. Today I have thick, shoulder length hair. Still growing it.
This product help us retain our dignity and pride (during the stress of sitting in the Big Chairs), and remain active at work and life. Very few of my co-workers knew I had chemo. Much love to you ladies!
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Leslienva@ For hair that tangles when wet, and for everyone, I'd recommend the 'wet' brush. It is super gentle and works better than anything on getting out tangles.
Jennjdance@ I hope you are not discouraged by your docs. My onc was a little dismissive but when I saw her at my 10th TX of taxol she was amazed I still had my hair. I also dye my hair blonde and have been sporting the ombre look. I can not wait to go get my hair colored again.
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Thanks guys! I actually went to Whole Foods today and got a mild all natural dye. It was recommended to me by a woman who works for the PCC financial aid department. I also still have about 2.5 weeks until chemo so I'm just a little under the safe 3 week mark. As soon as I order the caps I will dye my hair. Which brings me to another question....I'm waiting to hear about from the financial aid dept. They said that in many cases, they cover 100% of the PCC if you buy the ones that are used or have slight issues like an ink spot or a small tear, but are totally effective- they say. If you get the brand new ones, they can reimburse up to 50% for those. Did anyone use the used ones before? I don't want anything to falter this experience b/c I have one shot to do it right so asking for advice first!0 -
hi JennJ,
I paid full price and most of my caps were 'gently used' - I.e. From 2010, with plenty of spots and small tears. Totally effective. I'm not sure if that's what PCC financial aid meant though?
(I ordered them the week before chemo, last minute decision, so had to take whatever they had...so glad I did though!)
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I didn't know PCC had a financial aid department! The caps I used were definitely "used" as well; the only time it was a problem was if the velcro wouldn't stick, which happened once. (My caps were stored in a medical freezer and there were 28 to choose from. We reported the bad cap to the local PCC rep, and she replaced it.)
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Hi, Jennjdance.
A number of pages back, Daye mentioned that on page 328 you will find a post from tmb173, it
contains some insurance information that you may find helpful when trying to get the caps reimbursed
from your insurance company.
Good luck!
P.S. I plan on referring back to that information when I am finished with the cold caps in hopes of getting reimbursed.
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lalady1 - Congratulations on your success! Thank you for coming by and letting us know about your being able to save your hair. I am sure your encouraging words will help others to try to save their's.
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My oncologist actually recommended the cold caps and I had never heard about them before in my life. They also told me to use ice for my feet and finger and fingertips to prevent loss of toe nails and fingernails and neuropathy. I figure I only really need the ice for a total of 4 hours since the taxatol only affects that area. But on the other hand you need the cold caps for around 6-7 hours for the 1 hr. before and the two hr. treatments and then 4 hours post treatment. Lost a little hair and am not even brushing it or hardly touching it. I will shampoo every 6-7 days and at night I wear a plastic cap to protect from further shedding. In the morning after my shower I just put my makeup on and then put on my wig which I have had alot of compliments on and some people think it is my own hair. I figure the less you wash it and comb it the more you save. Good luck all in your treatments and keeping your hair. This is a very helpful website.
Thanks.
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My oncologist recommended the Elastagel booties and mittens to wear during the taxotere infusion. I got them on Amazon.
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Can you wear a wig?? I thought you can't even wear a hat. Won't it make your head hot? I was about to buy this beautiful wig and figured I'd wear it when I wanted to look nice, but then I read that you can't even wear a hat and decided not to get it.0 -
I would think that anything that is tight and pulls on the hair could cause it to fall out. I'm thinking ear muffs might work.
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Frank from Penguin Cold Caps recommended silica supplements. Did anyone else take them?
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No wigs or any type or head covering that would make your head warm pursuant to PCC protocol. The idea is that the follicles thrive with cooler temps. For example, after exercising and sweating a lot, many of us will rinse with cool water.
Also you want to avoid anything that pulls the hair. Try a soft headband like a stretchy Lycra yoga headband which is also good for covering grey roots at the hairline. Silk scrunchies for long hair or those ribbon hair ties- just tied very loosely at the bottom of hair length so there is no pulling. Many women swear by mini claw clips to pull back hair - especially if you have shorter pieces in the front.
As for silica, silica gel is absorbed the best but it can be quite expensive. Vitacost sells silica essential which has a citrus flavor. You can buy Hubner's silica on Amazon. Both have the high dosage of silica Frank recommends. Other swear by biosil however that only has 5mg of silica per dose and is really expensive. I think Vitacost also sells a silica compound in powder form. Don't know much about that form. I mix the gel in with water or juice along with my l glutamine twice a day.
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