Cold Caps Users Past and Present, to Save Hair
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Mmm2014 - make sure you change your part with each cap change, or pull your hair straight back on top. Are your caps at the right temperature when you put them on? I had some scalp flakes but I wouldn't exactly call it peeling - I think that was just some sort of build-up from not being able to scrub the scalp when washing.
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dancetrance--yeah i think that totally makes sense, but i guess it's also hard because everyone metabolizes things differently in their body. i guess we'll see!
anmore--yay fellow dignicapper! i'm curious--what are the parameters of your trial? ie, how long do you wear it, what is the set temperature of your cap? for me they quoted a 30-50% hair loss. I'm starting monday mar 10--eek. they're going to do the fitting right then and there too. when do you start?
PatinMN--someone told me that pulling your hair straight back might not give you enough contact with the cap since it's covering more hair foliclles...is that true?
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diem - regarding pulling the hair straight back, I guess that wouldn't apply to you since you won't have any cap changes! It's something that my local Penguin rep told me to do - change the part frequently and sometimes to pull the hair (on top) straight back with no part - to avoid getting "frost nip" on the top of the head. I guess I never thought about any effects with respect to contact with the cap...but I didn't have any issues at all and lost almost no hair during my 12 Taxol treatments. Since your Dignicap will be (relatively) warm hopefully you won't have any issues with your part. Let us know how they tell you to handle your part with the Dignicap.
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ahh got it--will do I'll report back after my first session on monday!
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hey ladies. Just checking in. One more TX to go. Hair still hanging around .... BTW decided to give chemo up for lent. I am so over it! I will be forced to 'cheat' on 3/20 but as far as I am concerned.... I am done! Even set my surgery date for recon today!
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y'all make this look so easy. It seems so complicated. I would appreciate any advice. I am thinking about trying the cold caps. I asked my dr. And he said no one has ever used them before and I would be the first. I found that really hard to believe because it is a very big cancer center. Thanks everyone!.
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my eye brows are looking like crap. I ordered a pair of nu-brows.... Figured I give it a try. Has anyone here had any experience with them or other brands of false eyebrows?
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Hello All....It's been awhile since I've been on here, but wanted to share the local news report on the dignicap study that I was part of.
Here's the link:
http://myfox8.com/2014/03/06/winston-salem-doctors...
Good luck to all the new cappers out there......YOU CAN DO IT!
-Melissa
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mc in nc - thanks for posting the link!
diem - the trial parameters are the same for me that they are for you. The trial says 30-50% loss; however, the nurse said that patients were reporting 20-30%. I am a day behind you. I go on Tuesday. Hope to hear from you on Monday.
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I looked at the Penguin Cold Caps site and I have been reading the posts here but it doesn't seem like the how it works is described very well. From what I have ascertained:
- You order the caps online (how far in advance?) from Penguin directly (some areas have local distributors? How do you know?) for a monthly rental fee (pro-rated?)
- You receive enough caps to get you through 3 hours treatment (is that right?)
- You arrange to have them frozen to certain temps which for most folks seems to be using dry ice (so you need to figure out how to procure dry ice for yourself)
- You start freezing the caps the night (day?) before your chemo infusion.
- You arrive at the infusion center with an ice chest (ever have space issues?)
- You use the caps with every infusion of the cytotoxic agents (but not during targeted therapies?)
- Every 30 mins you swap the cap out with a new one.
- Cap changes are a tricky thing to do quickly so users are advised to have a designated person (friend, family, nurse?) trained in how to do all the fasteners quickly.
- You leave the caps on 30 minutes past the end of the cytotoxic infusions.
In-between chemo infusion treatments:
- You wash your hair infrequently
- Wash with cool water
- Use special shampoo (for sensitive scalps?)
- Don't scrub scalp while shampooing
- Use cornstarch to loosen tangles
- Use the caps periodically frozen to regular home freezer levels (yes? When and why?)
Do the caps come with further instructions or something? I just find their site pretty vague when it comes to doing business with them and how it works logistically.
I met with two cancer centers here in Seattle. When I asked about the use if cold caps both centers indicated that sometimes patients used them but very infrequently. They weren't discouraging of their use but more indicated that they appeared to be a hassle for the patient.
What have I missed?
-Ann
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Agness- Once you do order the caps, you will receive more extensive instructions from PCC. You can call one of the reps listed on the Penguin Cold Cap website (I'm sure any of them can help you or at least direct you to the right person) for more instructions on ordering the caps. I would order them in time, so that you have them for at least a few days before your first treatment, to give you plenty of time to practice. There is a deposit and a monthly fee that is pro-rated.
You will receive 8 caps. I wore my caps for 50 minutes prior to each infusion and 4 hours after each infusion, so it ended up being 7-8 hours each infusion. Once you take off a cap, it will go back in the dry ice/freezer so it will be cold enough for the next time.
If your infusion center does not have the freezers, you will need to obtain your own dry ice. I found a company that offered to donate the ice for free and delivered it to my house. We just paid for the courier. Depending on the thickness of your hair, the PCC rep will tell you what temperature to have the caps at.
You put the caps in the dry ice the day of the infusion. I think at least 2 hours before?
You will actually have 2 ice chests. Many women request private rooms to ensure they have plenty of room. My center doesn't have private rooms, so always used one of the corner chairs. Never had any issues with space.
I didn't have any targeted treatment, so I can't comment on that.
You swap out the first two caps after 20 minutes, and then every 30 minutes for the remaining caps
It is helpful to have at least one helper who attends every infusion. My mom went to all four of mine, but I had three different helpers who assisted my mom. Make sure you practice beforehand!
My MO hadn't had many patients who had used the caps before me, but she wasn't discouraging of me using them either. They are a hassle and it is an added cost, but I am so happy that I used them. I am so thankful that I was able to use them and feel more normal during and after my treatment. Totally worth all of the hassle in my opinion!
Have you looked at the Rapunzel Project's website? It has some very good information and lots of tips! http://www.rapunzelproject.org/Default.aspx
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Hi everyone,
Just wanted to check in. It's been 37 days past my first infusion (15 days past my second) and the shedding's definitely stabilized. I lose maybe 10 to 12 strands with each brushing (large-toothed comb). And loss while washing in minimal. There seems to be some regrowth in the spots that really thinned out—mostly near the front—but I could be imagining things. Bottom line: I'm no longer in the full-on panic mode I was a couple of weeks ago. So, like they say: Hang in there, ladies!
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thanks for the advice. We kind of did a come over in the front and no frost bite today. My hair is not very thick in the front I think my scalp just got way too cold the first time. I've had some shedding yesterday and today. Hope that's done for now. Good luck to everyone using the caps. I'm using Chemo cold caps. They r very helpful, came the first tx and took care of everything. I was very impressed. They supplied the dry ice and even brought to my house the second tx. I am the first in my hospital to try the cold caps. I hope it works. So far so good!! I still have hair.
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hi lorbgoo,
The caps have been really successful for those of us on the same regimen you'll be having. It's a bit overwhelming to get started but well worth the results...post all your questions here and we'll help you through it. I also have a lot of chemo tips if you are interested just send me a private message and I'll be happy to pass them along. You can do it!
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Daye, WOW! Your hair looks great. So happy for you.
I've been out of town and it's great to check back in and see so many new and potentially new cappers. I was the first one at my facility to use cold caps and I made a believer out of my oncologist. The cold cap protocol seems overwhelming at first but with a little practice and some help from family/friends it's completely manageable. The results are worth it.
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Hi agness- if you are having targeted therapy as well you can request to have it infused last & it will count for part of the post-chemo time required to wear the caps. I'm the 2nd person to use the caps at my center & agree with everyone that it's worth every bit of hassle & expense.
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Agness, you will need to freeze the caps same day. You will keep them in your home freezer and ice them 2 hours before your infusuion. If you ice them overnight they will be too frozen to use. Keep the ice in the cooler not the freezer, ice can damage your freezer motor. When you are done with the caps for the treatment let them dry out and clean them with alcohol wipes before refreezing so they don't develop frost on the fabric which makes the Velcro not stick.
Totally worth the hassle IMO.
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Hey Everyone - Caught up with some family members yesterday and they could not tell I had lost hair until I pointed it out. They kept commenting that I don't look like a person who is going through chemo.
As per freezing the cold caps - I place my caps in the coolers 4-5 hours pre chemo. Any less and they may not be cold enough.
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Why do they require that you have a parcel delivery account?
Why do they ask about vegan status and whether you use aluminum underarm deodorant?
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Agness, you pay for the shipping costs so they require a fedx or UPS account before they will ship the caps. I'm not sure about vegan status, but my guess is something to do with protein? There has been some debate about whether aluminum in underarm deodorant contributes to breast cancer. As far as I know, a link has never been proven. I switched to Tom's deodorant. It's aluminum free and you can get it at Target. You may want to ask these questions to Frank, the cap inventor. I emailed the company. he called me directly and we spoke for quite some time.
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Just popping in to wish all my fellow cappers a great week! Hang in there, friends, hot showers, highlights and a good blow dry will be here sooner than you think!
XOXO0 -
can you get a haircut before you start chemo? I am starting end of this week or next. Just wondering if it will affect the cap use. I know you shouldn't cut your hair during and after.
Thanks.
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I know they say not to cut your hair before using Penguin cold caps but I did. I haven't shed at all after 2 taxotere infusions and my hair is much easier to manage with the infrequent cool water washings in the Maine winter. I don't believe that your hair cares if you cut it, I don't think the roots know except maybe in a good way in that they aren't carrying the weight. I didn't want all the pulling from the weight and the detangling and braiding my hair required. My scalp is lighter, hair easier to manage and that's important when other things are so much harder to manage during chemo.
More than anything I wanted to donate my thick blond locks so I went to the salon and had 12+ inches cut off then had it trimmed in a blunt cut to between chin and shoulder length. At this length the whole hair area and hairline are covered evenly as if I had long hair when I use the cold caps. I know this goes against Frank's advice but it's worked extremely well for me.
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I got a trim just before starting TC chemo and I know some girls here trimmed lightly during capping.
Happy Monday Everyone!!! Hoping for a good news week for everyone!! I have to take my sick car into the shop and so hoping it is under $1000 to fix. Otherwise it hits the auction block!!
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I got my hair cut just after my second infusion. She did a dry cut and was very careful w/ combing. My hair was looking scraggly and she layered it a bit in the areas where it was thinning.
Re: aluminum-containing deodorant: Somewhere on this list (or perhaps the PCC website), someone mentioned that aluminum bonds to hair follicles and could weaken them. I haven't checked the science on that, but I switched to Crystal Essence all-natural deodorant just in case. It's been working OK; it's not terrible. But, we've had a handful of 80-degree weather days here in Southern California, and on those days I've gone back to my usual Secret deodorant.
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Question for the past cold cappers,Have any of you had any experience with using extensions to fill in the gaps while they grow back out? Curious to hear your expereinces and how long I'd have to wait.
Most of the patches seems to not be bald as much as broken off really short but overall my hair is really dry and I had lots of breakage. My hair has also lost about half of its thickness.
My last treatment is in one week and I am starting to think about options for getting my hair back to looking "normal" as quickly as possibly and I was was wondering about extensions. I know if you are willing to spend the money, there are people out there that can do amazing things with them, just curious if any of you had gone down that path.
Thanks,Stephanie
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I hope everyone is doing well today
I just wanted to report back on my first TC infusion with the dignicap trial! So I know the dignicap is a lot warmer than the PCC--but I guess I was still expecting something really cold. However, it wasn't that bad at all, temperature-wise. However I think the caps didn't fit super well, but the clinical trial coordinator did her best to strap everything in...I just hope it got good enough contact! The cap started cooling 30 minutes before the infusion and I kept it on for 2 hours after the infusion ended. Per the machine, the cap ranged from 2-5C, mostly around 3C. I'll keep you updated on the shedding as time goes by...but I wanted to ask if any of you used a dry shampoo? The clinical trial coordinator said I should only wash my hair twice a week...and today my hair is already not so hot. Thanks!
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I used clip in extensions towards the end and after chemo. It helped fill out my thin hair. I did it for a few months and then I finally got my long hair cut shoulder length and ditched the extensions. I found once my hair was shorter, it felt and looked so much better - healthier and thicker.
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i am having my fourth and final chemo in two days, i used penguin cold caps and have had no hair loss on my head!! The caps really work!!
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Whoop, whoop! Yay for another success story!
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