Cold Caps Users Past and Present, to Save Hair
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Welcome Angiel, we're here to support you. Good luck
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hey there Angiel,
We're all on this trip with you. Good luck with the cold caps
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Hi Angiel! Are you at Abbott (across the street) for your chemo? how did you find out about cold caps? My MO, Dr. Bloom, refuses to tell his patients about them but is OK with it if they find out some other way and want to use them. You are in good hands with Susan doing your capping. Please tell her hello from me. I was just thinking about her the other day! I hope you have good results with capping, but even more importantly I hope that ACT shrinks your tumor down to nothing!
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Hi Angiel, Welcome
That's good you were able to take notes & read so many experiences. There are a lot of good resources here. It's really cool you live close enough to a PCC rep to be able to hire....You have the exact regiment of AC/T I do 4 each two weeks & 12 Taxol. Best of luck, you can do it!!!0 -
Thanks Ladies! I'm 2 days post first chemo & actually feel pretty good. I've gone to the gym both days & completed my normal workout & am overall feeling good, just a bit of lingering nausea.
Curly, it's great to hear from you as you are having the exact same treatment - what a long 5 months! Ugh!
PatinMN, yes I have Dr. Bloom too. I had heard that about him - that the patient needs to bring up the topic of the caps for him to discuss it. I had first heard about the caps through a friend who used them when she was diagnosed with BC while training for Kona's Ironman. She wore the caps during her chemo (she also had Dr. Bloom & used Susan) & competed in the Ironman the following year! Amazing! He did tell me that they do work & he has seen so in many cases, he just doesn't feel compelled to recommend them. I spent a week at MD Anderson in Houston following my initial diagnosis and they seemed against the use of the caps. Glad to have found MN Oncology. We have decided to hire Susan for the next 3 AC treatments too. I will tell her you said hello - Pat from Eden Prairie -? I think I remember seeing that's where you live? I'm in Medina.
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rleepac,
Just to let you know that I am currently doing weekly taxol/ followed by herceptin. The taxol dose I am given every week is 80mg which is very light. It only takes an hour for the taxol and then an additional 30 min for the herceptin. However, I do have to wear the PCCs for a total of 5 1/2 hours so even though my chemo is done at noon 8 don't gets out til 3.
I've been told by others who are ahead of me on this regemin that even though weekly taxol is a pain in the ass time wise it's actually the mildest way of doing it. I'm going on my 4th week of a 12 wk total and so far have got all my hair. I've had no bed side effects except for heartburn from the steroids and they just dialed those way back today once they were certain I had no allergic reaction to taxol.
Good luck to you and if you wind up doing weekly taxol/ herceptin for 12 wks you can always check in with me, or any of the other ladies here who are doing the same protocol
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BBwithbcat45- Just wanted to respond to a point you made in your last post. The widely used cold cap process that is used in Europe which is indeed free, is made by a company called Paxman. The are seeking FDA approval in the US and are currently conducting clinical trials here. I was a part of their trial (finished chemo 10/14). What I can tell you that after my own experience and learning from many other Paxaman users, they are not nearly as effective as the ones most used in the U.S. (Penguin ). You can seach my many posts which chronicles my journey under barremom64. Best of luck to you!
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BBwithBC, my hair also was somewhat oily prior to cold capping, however I found that it dried out during chemo to the point where I only needed to wash it twice a week. I would rinse my bangs with cold water in between hair washings just so they could be styled (with a blowdryer set on cold). So you probably won't be dealing with oily hair that will need to be washed daily
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Barremom64 - thank you, I will be reading up on your posts.
Leslienva - that's god to hear. A few other ladies told me the same, about the hair getting dryer. Also, luckily my employer is allowing me to work from home during chemo period, so that will take away some of the stress of trying to look top notch.
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Leslieenva & Suladog - Are you being tested for BC genes other than the BRCA? I did the full assay and it turned up positive for NF1. I wish I never found this out as there is little I can do to prevent other forms of highly lethal cancers.
My hairdresser is now on a mission to tell everyone who gets a cancer diagnosis about the caps. This is a good thing. The awkward part is she then asks me to call them. It feels weird. I really prefer that they call me if they want more information. "Hello. You don't know me but I heard you have cancer. Well, I don't know anything about your form of cancer but here's a list of chemo drugs that may respond to cold caps." The odd part is that nobody has called me even after I requested she give out my number. Had someone made that offer when I was facing hair loss I'd have called immediately. As I'm only on here talking with women who've had BC, I just don't know about the use of the caps with other cancers.
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suladog - I kept mostly all of my hair. I say mostly bc it's only now 3 months later that I really see a lot of new growth. I couldn't tell myself that I lost any hair on my head. You'll do great. There is a taxol herceptin for stage 1 her+ thread started by or with some of the ladies in the original Dana Farber study. Check it out. Good luck
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Thanks suladog. I don't know what my regimen/schedule will be until I see the MO on Tue. But, I have to take a whole day off work to go for chemo since I live about 1 1/2 hr away so I'm kinda hoping that I won't have to go weekly. I guess I'll know soon. A more 'gentle' treatment plan does sound nice though...
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Just chiming in as a past dose dense, ACT cold cap user. I am now 6 months PFC and feel the caps were successful. Shedding finally ceased at about 10 weeks after last Taxol treatment and the hair was incredibly thin - no way I could wear it down straight. I went with short cut but one longer than a pixie. I had the typical spots above ears and at the nape but one thin spot on top that could be hidden with a scarf folded to a wide hair band and tied in back. Did that for a few weeks before new growth covered the spot. I truly think that I was able to look decent enough that strangers didn't know I was a cancer patient. Very pleased I used the caps.
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Quick question. ... seems like I'm starting to shed again. Did you all have a shed after EACH treatment around day 15 to 20 or just the worse shed around second treatment (Day 20). I stopped shedding ... now it seems like it may be starting up again (ahhhh ugh). ... going for Round 3 this Thursday (4 treatments every 3 weeks). Just trying to figure out if I should expect a big shed after treatments 2, 3 & 4 or just around Day 20?? Just when I was starting to relax.... TIA ♡ Kim
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Goldenpawsk
Same here
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golden paws - I think everyone is different :-)
Like warrior woman, I think everyone has an amount of hair they will lose in this process, but it plays out very differently.
I lost almost no hair during 4xTC. Like none. But then I shed (very gradually) for almost 20 weeks after. I am pretty sure now (just over 20 weeks pfc) I am back to normal - I lose some strand every day, but I think this is normal I just never noticed before, lol.
I think the thing to remember is that on TC at least, these caps seem to work. I know it seems a little like magic (at least it did to me), but I got thru chemo with a very full head of hair. Had a pretty big haircut at 16wks pfc (was still shedding but couldn't live with it anymore!) and now it looks great!!
Keep going
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Thanks to DaniellaD for that DIY deodorant: 2 parts cornstarch, 1 part baking soda, 1 part coconut oil. It really works! I just made up another batch and put it into an old deodorant solid container.
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Anyone have any tips for styling air-dried hair? I have just below shoulder-length, wavy coarse hair and I thought I wouldn't mind taking a break from using heat tools; however, I just look like a frizzy mess. I've got an event to attend next weekend and I have no idea what to do with my hair. Ideas appreciated :-)
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I wore my hair pulled back into a low, loose bun a lot. I also used some thin, elastic headbands to hold things in place. When air drying I use some Aveda Be Curly on the length of my hair and avoided the roots to cut down on the frizz.0 -
Angiel,
I started air drying my curly hair last year when I finally learned to embrace it, it's the main reason I'm doing the PCCs as since I've been growing this stuff for a year I'm not giving it up without a fight. I use Deva products for dry curly hair , my hairdresser turned me on to them when I started my hair regimen. I use one condition on the ends and then gently rinse it out with cool water. I put a bit of light defining gel on the ends of my hair, staying away from the roots and then blot the hair gently and let it dry. I use my hand dryer on cold on the ends of my hair only. It takes longer but really seems to work for me. I'm not using anything with alcohol, or other chemicals. Most of the stuff I was already using hasn't got any anyway, it just takes longer with my longer hair. I tend to wash it in the late afternoon or early evening using the cold method and let it just dry. Someone suggested on these boards back somewhere to use a silk pillowcase if you have longer hair as it's easier on the roots etc during this time. I bought one and it seems to really help keep away and tangles or matting., and I haven;t found anything on the pillowcase so that's a great idea I'll pass along. I bought one on Amazon for about 20 bucks. So far so good, just give your hair the time it needs.
I would have no hair at all if it weren't for the PCCs and just for contrast this is me on chemo day where I wear that freakin ice berg for 5 and 1/2 hours and the next day at home with makeup
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Suladog you look great! Good for you! Love your dog in the background
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freakin' iceberg.
Hahahahahaha.
Love it :-)
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So is your dog's name Sula by any chance? You and your dog look great.
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thanks so much! Sula was our previous husky, the grinning girl in the mirror is Patsy our current husky. Her full name is Champion Alpines Absolutely Fabulous, aka Patsy from the TV series Ab Fab, seen below. Ironically, before my first breast cancer 25 yrs ago I hadasthma and terrible allergies and was never able to have a pet. Chemo gave me a whole new/ better immune system and I was finally able to get a dog. My allergist at the time told me it wasn't the first time he'd seen it happen.
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I need advise from some PFC ladies- I'm about a month from my last chemo and I'm shedding like crazy. I picked up the Nixoin 6 that some had recommended. Is it better to try to leave my hair alone more right now or should I start using the Nioxin in hopes that it will help with the shedding and regrowth?
Starting to lose my mind!
Thank you
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Gatomal, PatinMN,
I am so glad I found these boards, and being able to be public about my bc. Last time all those years back it had to be kept such a secret because of our work. It's so much better now
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Suladog, your hair looks great! Love the curls! I have never heard of Deva products but will look them up. Thanks for the recommendation. In the meantime, I did pick up some Unite & Moroccon Oil products to try out.
I did buy a silk pillowcase which I have been using. Does anyone notice a difference with hair loss based on stomach or back sleeping? I seem to toss & turn all night and then am constantly worried about my hair & my body weight pulling on it. Ugh. I've been taking Ambien but it doesn't give me more than 4 hours of restful sleep.
The iceberg....even seeing it, makes me uncomfortable. I've got one at home that I can wear in between treatments and I haven't been able to bring myself to use it. I likened wearing the PCC along with an electric throw to sitting in an outdoor hot tub at a ski resort where your head is exposed to the super cold & your hair is frozen but your body is so warm & toasty - almost exhilarating for a few minutes until it is just plain freezing...
Suladog, that is so cool about your immune system & being able to get a dog! One good thing about chemo, huh? I remember asking my oncologist about my Raynaud's and how that would be during chemo and he did say that Raynaud's tends to be immune-related (I had always thought it was a circulatory issue) and that chemo tends to make the Raynaud's better. So, maybe I've got that to look forward to?
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Killerfunbags....I shed horribly in the months PFC. It eventually stopped. I was convinced it would never end until I was bald...you have seen my pix so you know it will stop! Hang in there!!!!0 -
Just came back from my oncologist visit. That was a lot to take in....
I will be starting the weekly Taxol/Herceptin for 12 weeks, and then Herceptin only for the rest of the year every 3 weeks. I am starting the "fun" in two weeks exactly, on March 3rd. Looks like I decided on giving the Penguin Cold Caps a try. My doctor is OK with it, the chemo nurse is very nice, seems a bit skeptical, but didn't openly object. The place does not have the special freezer, so I'll have to deal with the dry ice.
I went on their website wanting to order them and I got a little overwhelmed with all the disclaimers, all the info I had to fill out, including FedEx or UPS account, which I don't have. Why does one need such account? Anyway, that is where I stopped with the process and I sent a message to the company instead. I know I will have to move past the feeling of being overwhelmed and get going soon, so I can get all the supplies in time.
I guess I need a little hand-holding for now, please. How much time do I have before I receive the cold caps? Why the UPS or FedEx account? What else does it entail?
Dry ice question - for how long do the caps have to sit on the dry ice before they reach the desired temperature? How long does the dry ice keep in the cooler? The closest place I found where I could get dry ice is open 9 am till 3 pm and my first chemo appointment is at 9:45. If I pick up the dry ice at 3 pm the day before, will it keep till next day?
Oh boy, my anxiety is picking up.
Thank you for considering to answer my questions.
BB
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Hi BB, I remember feeling overwhelmed myself when trying to get everything arranged for cold caps. I'll try to answer your questions.You have to open a UPS or FedEx account because you pay for the shipping and arrange for the pickup.
Try to have them delivered at least a few days before you start chemo. You need to practice before your first infusion and you want to allow for any weather delays in shipping (although hopefully by March this will all be over!). If you're starting on a Tuesday, try to have them delivered the Friday before so you have the weekend to practice. I don't know if anyone else had this experience, but UPS did not leave the caps at my house because nobody was home to sign for the boxes even though no signature was required. I came home from work expecting to find the boxes and got into quite a heated argument with UPS. They leave it to the drivers discretion whether to leave a package.
I had my dry ice delivered in the morning but my infusions were in the afternoon. I know some people had ice delivered the day before and I'm sure they will respond.
I'll send you a private message with contact information for the US cold cap distributor. She (Geralyn) is a former cold cap user and will walk you through the ordering process.
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