Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks all! I'm just so happy that I have hair and I've hit the 14 day past Tx#2 mark! Honestly, I cannot tell that it is any different -- excpet I know I have shed quite a bit.
I colored and highlighted my hair a month before chemo. I was worried about it actually being too close to chemo myself .... but did talk to Frank and he thought it would be OK. I also cut it 6 inches then in preparatioon for possibly losing it. (I have had long hair since my junior year in high school - almost 30 years -- yikes! - and thought what the heck!)
You'll have to make the choice for you but if you do color it use an organic brand with no ammonia. I'm not sure but think that anything that stresses your follicles you don't want to do prior to chemo.
The biggest thing I had to change was the non-aluminum deoderant. Still haven't found one that works that well. Does anyone know if potassiom alum is OK?
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I was very lucky in that no one said "you WILL lose your hair!" I was cautioned that this might not work but it it did that would be wonderful. The nurses were very helpful in getting me an infusion area with enough room to put the coolers and to coordinate chemo drip with timing of the caps. My onc has told other women about PCC and has tried to get a freezer.
I had fun showing off my hair to people who were at least supportive -- you'll have a blast showing your hair to the critics.
Colleen
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Hi everyone,
I finally heard from Frank, and thank goddness, because he said that in England they go on Xmas vac for 10 days, from Dec. 24th to Jan 5th. I will need to order my caps by this comong Tues or Wed the latest to get them shipped before everyone leaves for the holiday. I hope I can get it done by then.
By the way, he said if any place wants a freezer, he will see that they get one. They just have to pay for the shipping. There is a charity that is raising money for them here in the U.S. called the Repunzel Project. They are raising money to put freeers in Treatment centers so no one will have to deal with the coolers and the dry ice routine. So if your place wants a freezer, have them get in touch with Frank. I am hoping to get my hair dyed tomorrow (will start chemo after Jan. 1st.) should I try to get dye without ammonia and no peroxide? I can call the salon and see if they have any or I can go to beauty supply place and get it and bring it to the salon with me. Does anyone know of a brand name?
Thanks,
Nancy
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Don't get your hair dyed, i stopped 6 weeks before the cold cap, hair looks pretty bad right now, getting grey on the sides, but you don't want to weaken the follicle right before you start tx. Also, understand before you order the caps, you cannot dye your hair for the whole chemo time and several months after are recommended. I used the caps for the first time last week, and your hair will be flyaway, greasy or dry, and simply not look great during the caps, you have to accept that before the process or you will be very dissapointed during the 3-4 month period, i can see it already after my first tx. You cannot wear a hair clip, so i wear a pretty scarf or cap,and tuck my hair gently under a wide stretch band i bought at a wig shop. Since you have to wash hair very gently in only tepid water with a mild shampoo as rarely as possible, no more than weekly, know your hair is not going to be what you would like for several months.
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Nancy
I wouldn't get my hair dyed now. Don't do anything that will put chemicals on your hair. Ironically I had my hair dyed in early May, the week before I was diagnosed. By the time I was ready to start chemo, it was 8 weeks past that May appointment. It is now 14 weeks PFC and I'm getting my hair dyed on Tuesday. I'm 52 and I have wondered what my hair would look like if I stopped dying it -- now I know (silver grey) but I'm not ready to look like that yet.
Colleen
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Hello everyone,
I have short hair, so I won't be able to do much, just let it hang and be droopy and turn gray! I understand that, just thought I could dye it 2 weeks before start process, because last color job was Nov. 5th and I am overdue for one, roots already coming in gray.
Hello everyone,
I have short dark brown(colored) hair, so I won't be able to do too much except let it hang and be droopy etc. I thought I could dye it now-21/2 weeks before start process. You don't think it's possible even with non ammonia and non peroxide color? I last colored my hair on Nov. 5th. Its overdue already. Well if I can't, I won't. Does anyone know if it is okay to wear a wig over your hair if you have someplce special to go to? What about hats and/or scarves?
Best to you all,
Nancy
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COLD CAPS ON A SHOESTRING
I've followed this thread on and off since I started my chemo in July. Everything that I've heard about the PCC sounds fantastic and is probably the best approach to trying to save hair, but for those that can't afford them; I wanted to post the method I used. I've been on weekly Taxol/Carboplatin (3 weekly, then 1 week rest, repeat 6 times = 18 total) since July 19th and will be finished on December 27th. I've had to adjust along the way due to low blood counts, so it hasn't been exact. I have lost all of the hair on my body, with the exception of enough hair on my head to get by without even people I know realizing I'm going through chemo. My first ice caps were poorly made using ice packs that freeze solid and where the cap didn't fit snuggly, I was completely bald from the top of my head down to the side of my forehead. I did a "comb-over" to conceal it. I tried the solid packs since weekly Taxol should only "thin" your hair and I thought the solid ones wouldn't need to be changed as frequently. (Bad idea, "thin" = "bald"; solid = not good fit.) I then used the ice packs that don't freeze solid, thus fit much better. The woman that gave me the method had much harsher chemo and also kept enough hair to get by. Many people I've talked with have said you've got to post this to help others that can't afford the alternatives. I'll put down all the details, but the dry ice routine etc on chemo day is very similar to working with any of the ice caps (PCC or elasto-gel), just the ice cap itself is different.
Things you need:
Freezer that will fit the ice caps
15 Mueller reusable ice packs ($2 each)
Clear packing tape
Gallon size zip lock bags
Regular ice
Large cooler on wheels
Source of dry ice
Strip of cloth (the size of two bandanas end to end) or a Buff (Original Buff headwear - google or find at a camping store)Take 4 reusable ice packs and tape them end to end leaving no gap between them.
Fit the strip of ice packs like a crown around your head and securely tape inside and out.
Fit a 5th over the top and securely tape trying to leave no gaps.
Repeat to make 3 ice caps.
Partially fill 3 zip locks about a 1/2 to 3/4 full with regular ice, place inside the ice caps and place in a freezer right side up.
Partially fill several other zip locks to use as ice packs when filling the cooler.
On chemo day, get about 10-15 pounds of dry ice.
Place about the equivalent to a paperback novel into each of 3-4 zip locks and either don't seal tightly or make a hole in the zip locks to allow the carbon dioxide out.
Hammer the dry ice into smaller chunks.
Pack the wheelie cooler with the regular ice bags, then the ice caps, more regular bags, then top with dry ice bags.
The following timing is what worked for weekly Taxol/Carboplatin; with stronger doses every 2-3 weeks, you may need to keep the ice caps on longer. I would put the first ice cap on about 20-30 minutes before chemo during the prep drugs, the second one just before chemo, then continue to switch them every 20-30 minutes until 2-3 hours after chemo has finished.
I tightened the caps down with the strip of cloth tied in back. The Buff I used to discretely go out the door.
When an ice cap came off, I would put dry ice inside the cap to cool it back down quickly in the cooler, but removed the dry ice before it got too stiff and just kept regular ice inside and around them. I shouldn't say "I", I had a helper run the cooler for me.
On my forehead where the freezie brain was the worst, I would use moleskin between the cap and my skin.
More expensive mud based ice packs are thinner so easier to conceal under the Buff on the way out the door. They hold the cold a little bit longer, but also take longer to cool back down again. Since I have two made with the mud based packs, I use one to precool with, then cool it back down for leaving the clinic, and I have one in a separate cooler in the car for the ride home. I actually just switch between two Mueller caps while getting the chemo and for the few hours at home after the chemo.
It's a lot of work and a lot of hassle, but a lot less money if you want to try something and can't afford PCC. I probably lost about 75% of my hair, a lot due to the poor design in the beginning, but I definitely kept enough hair to get by.
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Does anyone have any good tips on hair care, as far as drying wavy hair that takes a long while to dry in the winter, would be different if it was 90 degrees in the summer. I hate just leaving it hanging down, i miss my large tooth clip. I will have to put it back during the day, otherwise, it will be frizzy, flyaway, and annoyingly wavy. I'm sure there are those of you out there that do not have straight, fine hair that dries fast. Any suggestions on keeping hair looking good when at work, other than wearing a bandana, also, has anyone used a scrunchie type ponytail holder? Do you think it adds too much weight and pulls? How about using a hair dryer with a cool shot type button? I have to wash my hair pretty early for it to dry before bed. Did anyone use a dryer during the cold caps. I did find a satin hat for bed, one that you tuck all your hair into, that seems like it would be good for those that do not have a satin pillow case, it was only about $1.99 at walgreens, next to the bathing caps/hair clips.
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Just wondering how many on here are on weekly taxol/herceptin, seems most everyone is on TCH, I hope I am not on just some experimental regime.
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her2intn - I used soft scrunchies all summer when I was doing PCC and chemo.
Colleen
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her2intn: I used a large hair clip but with my hair loosely scrunched so as to not pull the delicate, fragile hairs trying desperately to hang on. (I too used a satin hat for bed, because my my hair is/was long and I didn't want it to "pull" under my shoulders while I slept. That 1.99 was a great investment!!) I used thin hairbands while my hair dried, so it at least had a little wave off of my face. (I also have thick, wavy hair.) On hot days, or when I wanted to keep my hair off my face, used soft scrunchies which I got in Hawaii several years ago, love them, they're beautiful and don't pull my hair but keep it neat.
My hair takes forever to dry, and I always leave it down and let it dry naturally. I recommend you DON'T use a hair dryer. There are some leave-in conditioners (some mentioned on posts on this site) which can help you with texture etc.
But generally, be prepared that this will not be your routine hair care regime -- not in terms of coloring, washing, styling, drying; however, you will have your hair -- which is freaking amazing! -- and you will regain your regular routine far faster than if you'd lost your hair completely. It's a matter of perspective!
Hope this helps a little,
Susan
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I have a question for all cold cap users:
How soon before the infusion do you put the caps on dry ice? I put my caps on dry ice in the coolers the night before my last infusion session (probably 18 hours before infusion) and the caps were definitely far too cold the next day when I had to use them and it took far too long to get them to -32 degrees.
Please let me know the time frame that you are putting the caps in the coolers on the dry ice. Thanks
J
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Ladies,
I am not sure how to start a conversation but here goes. I recently had a lumpectomy with one lymph node involved which led to chemotherapy. I had one treatment and choose to try the cold caps to save my hair. During my research, I printed pages of information and up to now have spent around $2000.00, some of which will be refunded when I return the caps. I had 3 people helping me with them. The result was that I burned my head with the cold resulting in a massive headache for a week and finally my scalp is pealing, still. Obviously I must have gotten the caps too cold but we had a thermal thermometer ($90) and checked religiously. My problem is that I was never warned that this could happen. The communication with the company has ceased since I complained.
Has anyone else had this happen to them?
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Hi everyone!~ Quick update..... Day 39 for me! Treatment #3 of 4 is Thursday. Still have all my hair and it has settled down so much! Not greasy anymore and almost all the scaling is gone. Shedding has also slowed -- I had a few days that I shed a lot but now its more than normal (that I notice anyway) but not like it was. Noone can tell that its any different.
keeppositive~ I would be careful wearing a wig. I'm a jogger and wanted to wear hats. It is not recommended to me because warmth and heat open up the hair follicles. Since its been cold in Houston I have worn light Nike hats when jogging, but I've been really careful to keep my head cool.
her2intn~ I've used ponytail scrunchies and also clips in my hair - just being careful not to pull anywhere too much. I am just thankful every day that I have hair and can live with all the things that do happen during treatment in hopes that after I'm done I can move back to "normal" more quickly.
mje123~ I needed to pack my caps the night before as well. I have 8am start time and too much for me to think of in the morning. I pull the caps out 40-45 minutes prior to needing them and just let them sit on the table in the infusion room. My helpers continue two caps at a time like this. If they get too warm (-27C or less ) they put them on top of the cooler about 5 minutes prior to needing them wrapped in towel. Believe someone else does this too. Most people have said 3 hours is enough to get the caps cold enough from regular freezer to coolers on the day of infusion if you wanted to do it that way.
Hope everyone is doing well and looking forward to or already celebrating the holiday season.
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Nancy52~ I also had this happen. It's pretty scary when you see it and then when it starts to peel. I did somewhat expect it as I have thin hair and I had read the 45 pages of posts at the time on this thread and the scaling seemed "normal" and others spoke up to me when I wrote with much anxiety!
But was sure I "froze" my scalp. Everyone said it goes away about 4-5 weeks and you know what it has! For Tx#2 - I parted my hair on the opposite side and my helpers looked for severe redness. We put a piece of gauze (J&J 2x2 spread out - one layer only) down my part line 1/2 way through & treid to move the hair to change and cover areas at cap changes. Hope this helps and know that you can get a ton of support here. 0 -
lymflynn,
Thanks for the input on timing of getting the caps on dry ice. I had my infusion at 9am so I put the caps on dry ice in the coolers the night before. I was alarmed when my husband took the first one out and it was -60+ degrees and rock solid. Definitely took a while to get it down to -32 degrees. Maybe this time I will try and put them on the dry ice 4-5 hours before and see what happens
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Thanks. Did you have headaches? I just need to know that I can continue to do this. I think they will work but the headaches were pretty bad.
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Nancy52~
I did not have the peeling scalp but count me in for headaches. I had trouble knowing what they were from as I got bad headaches each time I did chemo...
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Did you get headaches with caps? I did for a week so kind of scared to use them again.
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Nancy52: I got headaches, but I think part of it was from chemo, not just the caps. It was much worse the first time, not as bad with subsequent chemos. Many women take an ativan or pain killer ahead of time to alleviate any discomfort.0
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Nancy - I took a couple of Advil every 4 hours on chemo day to prevent the headache from the cold. By the time I used the caps, it was recommended that the caps be wiped dry before putting them on. Also, change where your hair is parted each time.
Colleen
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Help! My daughter just used hair dye - Natual Instincts - has peroxide in it. She is to start chemo on Jan 5th - has she ruined her chances of using the cold caps successfully?
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Nancy52~ I did not get headaches (but I did get really nauseous for the last 3 - 4 caps ..) I think the first time is the worst (chemo anxiety, cap anxiety etc..) so others have said and my experience with #2 was much easier -- on me, on my helpers, my head. I do take a vicodin 30 minutes prior to first cap and this seems to help me through the treatment. I also get ativan IV as a pre-med. You can do it!!!! Just think how happy you'll be at the end of your treament and you have your hair!!!! Lisa
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motherofpatient - your daughter didn't ruin her chances. I looked it up and at least that hair color doesn't have amonia. Perhaps she left the follicles a little more vulnerable but I'm sure the caps will still work. I colored my hair with amonia and peroxide about 4 weeks (I thought it was less but I checked) before my first chemo and I had great success with the caps.
Good luck to you and your daughter! Don't worry.
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Hi,
Another story about cold caps, including information about two clinical tests of the DigniCaps from Sweden,
http://www.msnbc.msn.com/id/40718154/ns/health-womens_health/
Colleen
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Thanks Collen for the story ~ It kills me when HC professionals get it so wrong. The Clinical Nurse Specialist that egads! is spokesperson for the ONS ..that worries about "sanctury sites in the brain" ...Firstly, brain mets are NOT scalp mets and secondly, chemo has a hard time breaking the blood-brain barrier from everything I've read and discussed with Oncologists - much less a cold cap on your head. Wouldn't it be something if we could actually freeze our brains with PCC??
I seem to get more and more passionate about this as I continue through my treatments so apologize if too opinionated. I'm just so upset that my sister one year before me was told no and that the caps didn't work and she has said many times that losing her hair has been the worst part in the cancer treatment & recovery process.
OK I'm done venting.
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Is anyone willing to post pictures of your hair while using cold caps? Can a young woman do this and look decent at work?
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I will try it again. I tolerated the caps but the headaches afterwards were terrible. We did not know to wipe them dry so hopefully that will help. thanks for responding.
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day 11 no hair loss- I know it is still early--but I am so optimistic!! The only problem I have right now is dry eyes that or so red it looks like I am on Marijuna therapy! I am using murine dry/red eye formula--still no luck--any ideas?????
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sashasz3~ I can totally relate to where you are are mentally... it truly seems like yesterday. Be optimistic!! You will do great!!
I'm so glad you mentioned dry eyes.. this has been the worst lingering side effect I've had. They go from dry to tearing up constantly. Can barely wear my contacts and I am throwing them out constantly b/c I keep thinking there's chemo on them:-0 I'm using Renu Dry eyes and also found a natural brand at Whole Foods that I've tried... it comes and goes.
motherofpatient~ I posted a few pictures about a week ago - Day 1 and Day 35. I'm going out with my hair everyday. Some days it doesn't look perfect, but always said it's better than not having my hair. Thanksgiving was the 2 week mark for me -- when I should have been losing all my hair and instead my family and I were at a nice restaurant all dressed up. Seems like the first 3-4 weeks are the toughest and then your hair adjusts.
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