Cold Caps Users Past and Present, to Save Hair
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I survived my first treatment but I am very nervous now because I did not use the caps during the Perjeta infustion because the nurses (and my dr) told me it is not a hair loss drug. But things I am seeing online say different! I sure hope I didnt' mess this up already.Also, I think the 8 caps and 80 lbs of dry ice is extreme over kill. I could have used 4 or 5 caps and they would have been cold enough being rotated in and out. All that dry ice was expensive! Does anyone else have an opinion on this?
Icing hands/feet/mouth during treatment..... Is this something I should be doing as well? WOW my first infusion was overwhelming it didn't start until 2pm so I was there until 10pm. SHEEESH!
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Thanks Daye--I'm going to do the 72 hours now b/c I'll have to time it right before my next treatment, thanks!
midege2-- yes, we also practiced the day or two before the treatment day.
mdg--I forgot you used the aveda. I'll have to try that.
Seriously--I'm looking like Slash from Guns N Roses!! LOL
Another issue--itching!!! I'm touching my scalp lightly to alleviate it, because I can't help it. I hope I'm not messing this up already too!! It's so itchy!! Maybe it is starting to fall out or shed? We'll see.
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I think other girls had itching and flaking on the scalp. Don't freak out! I hope someone can post info on that.I did wear a loose pony tail ALL the time during/after chemo. My hair is long and was frizzy. I use Aveda Be Curly on my hair at some points during chemo. I avoided getting it on my scalp.
We also practiced the caps before we went there. If you tell us where you are, maybe there is a past Cold Cap user in your area that can meet up with you. Many of us have helped others in our areas. Maybe your cold cap rep can put you in touch with someone that used them near you......
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I wouldn't worry about the itching, I had a lot of it for all four rounds but my hair is still here, although thinner. I made a point of resisting the urge to scratch though. Didn't notice much flaking.
FL, my MO said Perjeta would not cause hair loss so I didn't include it as part of chemo-time for the caps. We'd usually start the caps right around the same time as the Perjeta since that came before the chemo drugs. Again, my hair is thinner but it's still here. Several Dr's told me I would be completely bald w/o the caps.
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Icing nails is for taxotere and done just during its infusion, and perhaps for bit afterwards, not the whole day.
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itching - I had it with flaking - it was cradle cap. I mixed about a tsp or two of apple cider vinegar with my shampoo in a cup diluted with water - washed my hair at the kitchen sink using the sprayer (oh the days of using cold water - I feel for you guys!).
This really helped to take away the itch and flakes. Good luck!
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I have not cut or colored my hair yet. The shedding is minimal. It has been almost 3 months since PFC. I'd like to cut about 4 or 5 inches off but PCC says only an inch per month. Any thoughts?
To the new cappers: If you read through the threads you will see that everyone goes through the high anxiety panic. We also have plenty of reports of errors made and people survived just the same.
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Hi everyone! I've been super MIA in the threads but wanted to let you know how the dignicap trial went for me. I did the UCSF dignicap trial for 4 TC treatments--they basically start cooling you 30 min before treatment and the caps only go to about 1C. After the treatment, you still wear the cap for another 2 hours. I started shedding on day 17, and it was a steady shed (about 4x my normal shed) until I washed my hair day 25 and a whole ziplock bag of hair came out. On day 26 about another ziplock bag came out...and after that it was back to maybe 5x my normal shed. All in all I lost about 75% of my hair so I don't think the dignicap worked. I also want to note that I have asian hair so not sure if that was a factor...but I'm sure the temperature was probably the issue since the PCC's are much colder. It's unfortunate that it didn't work out but hopefully the trial will know that they need to tweak their variables, and hopefully this info will be useful for anyone considering the dignicap vs PCC!
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Hi all, I start treatment next month and am extremely nervous about losing my hair. I have a friend that used PCC and they worked great for her, but she is far better off than I am finacially. Seeing as insurance does not cover the cost of using them, I have been trying to find other options. There seems to be a lot of cold cap companies out there and wanted to see if anyone has used one that was less expensive.
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today is day 42 since treatment started and my 4th AC. First time I met MO since initial consult, I've seen PA in the interim, and was she shocked to see hair! She had indicated they wouldn't work when I first inquired. And two women at the hospital today noted the cap or coolers and shared their success using caps themselves over the last year or two.
I'm shedding everyday what seems a lot. Wide combo once a day gets very good amount and then finding hair on clothing all day long. Area in front/above ear is bare but not seeing other spots yet. When I mentioned to MO I wasn't sure I'd make it given the shedding, she indicated taxol will be easier on my hair and that I might well do it.
Cheerful day considering. Chemo day always wipes me out. Nausea and fatigue kick in hours after infusion but I'm half way done now.
Hoping others are faring well and having minimal side effects.
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Baytown- elastogels seem to be the cheapest option. You can try to find some used ones online. A few women on here have used them, so they may be able to help more. Also, I was able to get my dry ice for free when I told the distributor what I was using it for. Apparently this distributor does that for all cold cap users, so it is worth it to call around!
Kazzy- sounds like you are doing great! I know at least one or two ladies on here had taxol as their only drug and had very minimal shedding, so I think your MO is right! Yay for your last AC! You're in the home stretch now!
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DQ77 - thank you for sharing your experience and I'm so sorry to hear you didn't have success. I hope your treatments have gone well in all other regards and side effects were minimal. My hospital in Chicago is a leading cancer and teaching center but has not been especially supportive of cold caps. It's great that your at UCSF - I've heard great things about their breast cancer program. Healing wishes to you.
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Baytowne, I see you're in Texas. Please google the cold cap assistance project. Someone else on this board was successful in getting financial assistance with the caps through this Texas based nonprofit organization.
I've also been MIA from the boards for a while. It's been about a year since I finished chemo and life is pretty much back to normal- so is my hair. I'm so happy to read everyone's cold cap success stories, especially those getting ACT. I'm also very sorry the Dignicap didn't work very well for DQ. I wonder if they are using the Dignicap at different temperatures for different people as part of the trial.
Warrior, sounds like you're due for a color and cut very soon. You'll feel like a million bucks afterwards (I cried!) For what it's worth, I haven't read of anyone who suffered additional hair loss when they cut and colored sooner that PCC recomends. Of course, I would go gentle on color the first time.
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Thanks Kazzy
I was a little disappointed but I'm thankful the rest of my treatment went very well. I've also learned a lot about wigs and now wearing a wig is like second nature to me. Hopefully they'll figure out the correct parameters for the dignicap and make it more widely accessible so we all get a chance at keeping our hair!0 -
CCAP- Cold Caps Assistance Project. They funded mine!! Check them out.
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kazzy, I had taxol only, weekly for 12 weeks, and the caps worked perfectly for me. I had almost no shedding. I believe summer70 also had taxol only, but she did shed quite a bit more than I did. Are you doing weekly or bi-weekly taxol? Either way, I think you will do great on taxol. You are done with the hardest part and hopefully your shedding from AC will stop soon!
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Hi, does anyone have a copy of sbm9's cold cap guide? Or anything similar. PM'ed as instructed and didn't hear back. Starting CC's soon. Thanks!
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Hi Eloqui- I'm not sure what is on sbm9's guide, but here is a list that I made from tips I found on this thread, Rapunzel Project and Penguin's tips. Best of luck!
Day of Tips:
- Keep hair straight down during chemo; do not
bunch or pile on top of your head - DRINK AS MUCH WATER AS POSSIBLE
DURING CHEMO DAY - Use adhesive-backed moleskin, cut to the shape
of the forehead, to protect skin when cold caps are on - Cut panty liners in half to protect ears when
cold caps are on - Have warm blankets, an electric blanket, or
heating pads on hand to use, especially during and right after each cap change - Be sure to change the hair part line with each
session of chemo (or even during each session). It helps to protect the scalp - Label the coolers by the cap numbers that they
contain (1,2,5,6 and 3,4,7,8) - Take caps out about 10 minutes before they are
needed to check the temperature and to knead them out, so they are more pliable - Take ibuprofen 30 minutes before starting the caps (make sure it is ok with your MO first)
Hair Care Tips:
- Use only cool water in shower
- Wash hair no later than 3 days before and no
sooner than 3 days after chemo - Use a gentle shampoo with pH similar to that of
the hair in the 4.5 to 5.5 range. Use clear shampoos, not "milky" or
"creamy" ones. - Do NOT use products that say moisturizing
or volumizing, or that are opaque (rather than clear). Such products may
coat the hair and keep oxygen from reaching the hair follicles - Use a detangling spray such as Kenra® Classic
Daily Provision* (spray-on conditioner) rather than a regular conditioner.
Again this helps keep the hair follicles from being coated - Make the transition to these new hair care
products as soon as possible before chemo starts, as it may take 2 weeks or
more to fully clean old product residue off the hair - Coloring hair is not recommended until 3 months
after chemo is finished, because the follicles still need time to recover from
the trauma of chemo - Don’t pull on the roots
- Hold hair when combing so not to strain the
roots - Sleep on a satin pillow case
- Do not use curling irons, electric rollers, or
hot air hair dryers - Do not put your head directly under the shower
stream; use a plastic cup to wet your hair, mix shampoo in some water in the
cup (I washed my hair in the sink with the removable faucet and turned it on really low water pressure)
0 - Keep hair straight down during chemo; do not
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eloqui, I have sebm9's tip document, if you can PM me with your email address, I will be happy to pass it along.
Thanks to FL Sunshine for info on the CCAPS program. I'm trying to connect to see if i can make a donation and they also have a page for testimonials but it just freezes up on my browser. I'll keep trying to connect and let you know what I learn.
Happy Friday, Cappers!
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Kazzy - that's great news! Welcome to new and potential cappers!!! Love hearing successes! It has been three years since chemo for me. My hair is much thicker and right now it is humid so my hair is getting BIG! Remember the episode of Friends where Monica goes to Jamaica and her hair gets "BIG" from the humidity? That's what I feel like these days. Not complaining though! LOVE having hair and never losing it through chemo! Hang in there newbies......it will work for you too!0 -
I just wanted to pop back in and say good luck ladies!!! It is a scary time but so worth it, for many. And right now the treatments are SO much to handle but soon they will be just a memory and you can be getting on with your lives. Please take care of yourselves and hang in there!!!!
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Thank you so much for the tips!!
Which brands of shampoo have people had success with?
Also, I live in Philadelphia if any local cold cappers have tips on where to get dry ice, particular hospitals, etc
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I got my ice at HEB, a local grocery store. The distributer did not charge for the first 3 treatments. Only the last. Good luck to all.
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Eloqui - I use DermOrganic and it works fine. It's what PCC recommends and I'm not one to venture out and experiment. I'm in Northern NJ but go to HUP for my surgery. I didn't do chemo there but I understand they permit the caps and have lots of private rooms. You can also look at the site for Rapunzel Project to see which facilities near you have the freezers and avoid schlepping the ice. You should be able to find a local retailer for the ice in Philly. Call the supermarkets near you. Giant usually has it. I went directly to the wholesaler - Airgas but that is near me.
And in other news, I am getting my first trim tomorrow. I'm going to get it cut to my shoulders and get rid of the ratty crap at the bottom. My hair is clearly regrowing underneath. I cannot wait to show this to my stylist and give her the job of figuring out what the heck she can do to fix my hair down the road.
I have to start the reconstruction of my right boob all over again. It's very upsetting. I'll be a uniboob for a while. But I am trying to be positive. I kept my nails, my hair, my eyebrows and I will figure out some way to look presentable with one boob. Sheesh.
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Warrior Woman - so sorry to hear about reconstruction start over. You've gotten through the worst so this is just a small setback. You're nearly there.
Ladies - Most of shedding for me with cold caps until now has been when gently combing or washing with occasional stray found. Today seems much worse I'm that just touching hair seems to shed 3-5 strands. Dfinding on shoulders and shirt all morning. Still coverage but how normal is the dropping of hair?
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Warrior_woman - thanks. I'll be going to HUP as well. New post-chemo haircut - very exciting!! I'm sorry that you have to go through reconstruction again.
I also just got a pre-chemo hair cut. It's a bob and he thinned my hair a
lot. I was hopefully thinking that more coldness will get to the scalp
that way, although it just occurred to me now that maybe that'll make
shedding more noticeable.0 -
Kazzy - I shed regularly throughout chemo and so have others. I always seemed to have hairs sliding down. They were all over my clothes, my couch, in my car, all over my stairs and curling around the banister rails. They were everywhere. I had a stranger pick some off me in the supermarket, how's that for weird?
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Hortense- I am 7 weeks PFC and seems to still be shedding quite a bit! Does this seem normal? I feel like I can not lose anymore!!
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2 boys mom - MOST women on here report that the shedding stops around 4 months. Some report more shedding PFC than during chemo. I'm somewhere around 3 months and it is really minimal but I still shed.
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ladies - hope you can help me with a question.
I am still in the process of making the yea/nay decision on chemo, but if I go for it I would definitely like to try cold caps.
I'm trying to work out all the logistics (which are a little baffling) - did you order your cold caps directly from PCC? If so, how long did they take to arrive? Can it be done very quickly?
I don't want to order them if I don't need them, but also don't want to lose the window of opportunity if I do.
Thanks for your help!
Rain
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