Cold Caps Users Past and Present, to Save Hair
Comments
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scared - I'm surprised, too, they wouldn't advise a port, since you'll be getting infusions for a year with Herceptin. You may want to join the triple+ thread (if you haven't already) to ask for more opinions on this.
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Congrats agness on being done with chemo! It is such a good feeling to send the caps back.
scared- I lost my lashes about 2 months after my last treatment, but they grew back quickly. I never lost all of my eyebrows but they did thin some. As for my hair, If I needed it to look nice, I would let it air dry for 30 min or so and then blow dry on low power and low heat. I even used a flat iron on the ends a few times. Just be careful not to pull on the roots and not to get any hair product directly on your scalp.
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hi everyone,
Agness - congrats on finishing!! So great :-)
Scared - we will be cold cap buddies. I start on Friday. I will also need to keep working in a professional environment and have been puzzling about what to do with my not-straight but not-curly hair w/o blow drying...
Also, any tips for dealing w once a week wash on chemo week? I'm thinking my hair will be seriously gross by day 5, and no hats or ponytails recommended...
Finally, wondering if people used the headbands from PCC or not? Are they necessary to get a good fit? I am worried it's one more thing to fiddle with/check temperature/keep cold...
Edited to add one more question - best way to avoid frostbitten ears?
Thanks!!
Rain
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I would like to share my experience with cold caps for anyone that is currently using them. I used Chemo Cold Caps.. I know most of the women on here used the Penguin caps. The representatives from chemo were great and supplied everything. I didn't even have to hunt for dry ice. They spent the whole first treatment with me and some if the second. I'm not sure which caps work better but the people at chemo were awesome and so helpful. They charged $400 per treatment and supplied everything you need. I prob lost 40% of my hair. My hair was not very healthy in the first place. My hair is now very short but growing in quickly. I had a few small bald spots but those have filled in nicely. The back is still very thin but no one can tell. I am a little over 14 weeks PFC and the shedding finally slowed down around the 14 week mark. I got my hair colored, conditioned and cut. All is good. I'm having a hard time adjusting to the short hair but I never had to go without. The whole process was very stressful, especially the shedding. I think I lost more hair because of stress than anything. I am taking biosil and I believe that is really helping my hair to grow back quicker. I lost most of my lashes but no one could really tell. I wore nova lash during the whole treatment. For about 2 weeks the lashes were very thin but all is good now. You can look up the lashes on the internet. They have to be put on by a trained professional. I believe the caps were worth the hassle. Sometimes I wasn't sure but I still have hair and never went without!!! I'm just rocking a different style now!! Good luck to everyone and God bless!!!!
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Rain- your hair will get used to not being washed so much and it won't get greasy as quickly, so you just have to deal with it in the beginning. I washed my hair every 3 days (every 72 hours). Around treatments I washed 3 days before and then 3 days after, so that was the worst (6-7 days of no washing) but I didn't go to work until 3 days after each treatment, so it really wasn't bad.
I did use the headbands and put them at the nape of my neck because the caps didn't go all the way to the end of my hairline. I am glad I got the headbands, but I think I have a big head, so you may not have the same issue as I did.
For your ears- cut panty liners in half and stick them on your ears. It looks silly, but definitely works!
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Hi everyone. I have been using the Cold Caps during my chemo with great success. I just finished my 4th bi-weekly AC treatment. I had to wear the caps 50 minutes before my infusion started, during infusion, and 4 & 1/2 hours after. It's a long tiring process, but I have lost little to no hair. I have noticed in the past 2 weeks that I am shedding a lot more than I ever have before, but it's not noticeable. I am about to start my 1st of 12 weekly taxol treatments this week. My onc said it is milder than the side effects with the AC. I was just wondering if anyone else has gone through this same regimen? If so, is hair loss still as much of a risk as with the AC? I'm wondering if I need the caps still? And if I do, will I still need to wear them as long?0 -
Deena_Marie - That is great news, so glad they worked well for you. I will be having the same regimen. I know that AC is rougher than TC on the hair, but I've heard many success stories now, so I am quite hopeful. I plan on wearing the caps all through Taxol, even though some ladies grow hair during that treatment. I don't want to make a mistake at that point and then it was all for naught.
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kpmacmill - Good luck starting your treatment. I'm thinking the same thing. I was considering not wearing them for the Taxol because I've read a lot about hair growing during treatment. But I'd hate to not wear them and lose the hair I saved during AC. I just wanted to see if I didn't have to wear them as long. By the time I get to the last cap, I am completely exhausted!
The picture I just added as my avatar was taken right after my final AC. The caps really do work
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Scared42 - I use 2 60qt coolers with 80lbs of dry ice. I get the ice a full 24 hrs before my chemo and there's not problem with it evaporating. The ice definitely doesn't last more than one treatment though.0 -
Deena Marie -
Just wanted to say your hair looks AMAZING.
So glad to see this can work!!
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Deena,
Your hair looks beautiful! You should do an article for newspapers or tv stations to get word out about keeping hair through chemo.
My city newspaper just did an article about women cancer patients and their sad story of how they feel losing their hair after chemo! I wanted to call reporter and say "there IS an option for patients to keep their hair!"
Why don't ALL oncs discuss PCC with their patients?
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Have any of you ever corresponded with Frank Fronda the owner of PCC? If so do you have any contact info that you could pass on. Thanks so much. If not does anyone know where I can get the info to contact him directly.
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Deena Marie - so psyched the caps worked for you on AC! Yay! Your hair looks awesome. I didn't do taxol, so sorry, but I have no advice for you on that.
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Wow, lots happpening here today.
Agness, congratulations! It's so nice to hear another cold cap success story. I know what you mean about tucking hair behind your ears. It will grow back fast, especially around the front hairline and ears. In fact, I had hair growing back I didn't even realize I had lost until I saw all the little baby hairs sprouting.
RainDew, I think the bands worked well for me at the bottom of my hair line in the back because I didn't get good coverage there with just the caps. I think it depends on the shape of your head. They didn't work as well around my hairline in the front.
I had my chemo infusions on Thursday and took off the Friday after most times. I could have worked those Fridays but I was trying to be good to myself and slow things down a little. Anyway, my hair looked its worst the Friday and Saturday after chemo but I was able to wash it on Sunday so it looked decent again for work the next week.
LisaM, you can try an email to the company specifically asking to speak with Frank. They were having problems with the website when it was time for me to order the caps. It was really frustrating and I sent an exasperated email to PCC. Next thing you know I received a telephone call from Frank himself. I'm sorry it was over a year ago and I didn't save his number.
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kazzy, fingers crossed that you get through 3 more treatments without losing too much more hair. You're through the worst I think. Keep drinking lots of water on treatment days.
Deena, I had 12 weekly taxol treatments (not preceded by AC or anything else). Before starting treatment I tried to research hair loss with that regimen, and really couldn't find anything. I used cold caps with great success. Two other women in my group here on BCO who started chemo the same month as I did either had weekly taxol only or started out with it before moving on to a different drug. One lost her hair quickly, and the other one kept her hair for most of the 12 weeks before losing it. I lost hair elsewhere on my body, but probably not until the second half of treatment. I'm quite sure I would have lost the hair on my head too had I not used cold caps. If I were you I would continue using cold caps. I did 4 hours after taxol - so you could probably cut down from the 4-1/2 you've been doing on AC.
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LisaM I happened to speak to Frank by accident prior to starting cold caps. It was later in the evening and I called a number for info listed on the Penguin Cold Caps website page. Because it was after hours the call transferred to him in England. I was very surprised. He spoke to me for about 30 minutes answering my questions. Very nice man. Hope this helps.
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Has anyone had any luck finding an aluminum-free deodorant/antiperspirant that actually works? Are/have many of you followed the recommendation from PCC to use aluminum-free deodorant?
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PatinMN - Thank you so much! It is really hard to get any info on hair loss during taxol. I will definitely keep using them.RainDew & DanceTrancer - Thank you for the compliments. They mean so much more when you actually have to go through this to save your hair. I definitely appreciate it & complain a lot less now a days. Even bad hair days are a blessing
PinkHeart - I would do that but I wouldn't even have an idea where to start. I don't understand why the dr's don't let us know about the caps either. I read that breast cancer patients in Europe get the caps automatically (and for free) when they start chemo. I really don't think they understand how important it is to keep your hair. I know personally it has helped me get through process so much better than if I had lost it. It helps keep my spirit up. And I believe not looking sick helps me not feel sick.
kpmacmill - Tom's of Maine is an aluminum free deodorant. They sell it in Walmart & Walgreens that I know of.
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Wow, I have missed a lot in a few days. I'm planning for my 6th & 7th freakin' surgeries and a bit distracted. A few responses to various concerns:
I drink a lot of coffee and never knew to stop. I'd rather lose my hair than my caffeine. And so I had coffee and I still have hair.
I used the 60 qt coolers as that is what was recommended and everything fits in there well. I imagine larger ones will work too. The trick is to make certain there are not big air pockets in the cooler or the ice evaporates faster.
I found it easier to buy my ice the day before to avoid any last minute snags in the plan. It gave me more time to pack the coolers. I bought 100 lbs. of ice to be on the safe side.
As it is summertime I am wearing my hair up. I wear ponytails even though PCC said not to. I don't think ponytails have been a problem for me.
My hair is growing in like crazy. I used Biotin (one capsule daily) and 5 drops of liquid silica.
For my brows I used Brian Joseph's but that did not work for my lashes. I now use the lash conditioner from Derma Store (online) and my lashes are finally growing back.
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Thanks Deena_Marie. I've tried Tom's actually, and let's just say it's not working for me :-) Has anyone tried any other aluminum-free deodorants? Seems like Tom's is the most widely available - wish it worked for me.
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kp - I know that a couple people posted on this thread - probably dozens of pages ago - about aluminum-free deodorants that worked for them. Hopefully they will come back and see your question. After trying Tom's and having it be a complete failure, I searched on Amazon and read the comments there. I ended up buying a roll-on version of Tom's. It did work for me, all day, although my pits were pretty stinky when I woke up the next morning. However, upon a closer review of the ingredients, the roll-on version has something related to aluminum in it, which is probably why it worked. All that to say - I don't have a good recommendation for you, other than to do a search on Amazon and try something that is recommended by users.
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Raindew - I began taking Biotin and BioSil - liquid silica which I get on Amazon - after I finished chemo. I probably should have started taking it during chemo. I am convinced that BioSil has helped strengthen and help regrow my hair quickly and thickly.
My hairdresser cannot believe how well it looks a year and a half after chemo. She knew my hair before chemo and says it is much healthier now. I have read that liquid silica is much easier for our bodies to absorb and use than dry forms. There are clinical trials that I found online and posted waaaaay back on this thread, I don't know where, that proved how successful liquid silica was in strengthening hair. I am a believer, as is my salon which now recommends it to clients with thinning hair issues.
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Scared - I had chemo in NYC at NY Hospital's Weil Cornell Breast Center which is very supportive of cold capping. It has a medical freezer for them so the caps can be left in it between treatments. I switched there from Memorial Sloan Kettering where I had had surgery because in May of 2012 MSK wouldn't allow me to use cold caps. My surgeon at MSK told me in the spring of 2013 that MSK had finally decided to allow cold caps. I think it was losing too many patients like me who wanted to use cold caps to other places. I have learned on here that several woman have used them at MSK since.
The Breast Center gave me the name of a woman who could be engaged to help with the caps and I was fortunate enough to get her to take charge. She goes to various centers to help people so might be able to help you wherever you are going in Manhattan. She is expensive though. You might be able to find someone who would be willing to take on the job for a lot less.
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thanks Hortense!
Will look for the liquid form...trying to get all my ducks in a row before starting chemo this week.
Very lucky my breast center is super supportive (my MO suggested the caps. I hadn't heard of them) and has a freezer. Now just trying to collect as much info as I can so I can do my best with them...EVERYTHING seems much harder than it should to me right now...just keep reminding myself that this, too, shall pass...
Peace,
Rain
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KP - Arm and Hammer Essentials is what I use after having tried a few others. Nothing is as good as antiperspirant though.
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Also seconding Arm and Hammer natural deodorant, in the Fresh scent
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Ha ha ha! Yes, we must smell fresh!
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Just chiming in on the deodorant...I tried several types and didn't find one that worked that well until someone in my chemo group recommended MooGoo. It's a line of natural products from Australia and the deodorant is roll on, and works great. I travel a lot and it has stood the test of hot humid climates very well. Just came in from a long run this morning and I did of course sweat but still smell fine
It's the best one I found just takes awhile to get it shipped over. So many new cappers this week - makes me sad that you have to join us but I am so happy to see the word getting out there to more people. If we each advocate to a few others, slowly it spreads.
Have a happy week!
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If I ever find myself facing chemo again I am insisting on the cold cap. Will try liquid sillica thank you.
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RainDew - In the ducks in a row department - speak to your chemo nurse about preventing constipation. It can be one of the worst parts of chemo, yet is preventable. Ask what you can do beyond simply drinking a lot. It's a side effect that needs to be anticipated and gotten ahead of, not something to wait for, i.e.: taking stool softeners, having dulcolax laxative on hand, etc. So many women are not told enough about it.
Congrats on having such an enlightened MO!
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