Cold Caps Users Past and Present, to Save Hair
Comments
-
Thanks for the de tangling tips! I never heard of using corn starch so I'll try that. I'll also use the wet brush.
It's been 11 days since my first chemo. I think they say Day 14 is when the hair starts to go for those who aren't cold capping. I'm hoping mine hangs inthere!
0 -
Hello Everyone!
My name is Marcela, I'm 25yo and I can't even begin to tell all of you how relieved I was when I found this topic here. I read the first 30 pages ans the last 5 and it is very reassuring to know that I am not alone...
I was diagnosed with BC in 2012, went trough chemo (AC/TH) in 2013 and lost all my long thick hair followed by a lumpectomy and radiation. Two months ago when we found the recurrence I had the mastectomy with no big trauma but the idea of loosing all my hair again was just too much for me to deal with. I am from Sao Paulo, Brazil, and the cold caps are not used or even all that much heard of here, but I told my oncologist that it was the only way I would do chemo, so the hospital found a way to accommodate my needs... They got in touch with Paxman and thats what I'm using. I read someone say that it didn't work for them but I'm REALLY hoping it's not my case, since for me it is my only option.
I'm doing TCH + Perjeta every 3 weeks, for 6 cycles, and I'm on day 16 post my 1st cycle. 3 days ago the shedding began but it is nothing like last time. The hair is still attached to my scalp, so I'm happy so far... I feel that if I don't mess around with my hair that much it doesn't shed at all... But I did wash it yesterday and it was very traumatic....to see all that hair go was just terrible... but I have so much hair that maybe it'll be ok...
Anyway, since I'm reading from so far away and your testimonials really gave me a sense of hope and made me feel better I decided to write and let you guys know that I'm here. I really admire all of you!
I'll let you know how things are working out for me!
0 -
welcome Marcela - so sorry you have to be here again (BC sucks!!), but excited you have found us.
I did TCx4 and lost very little hair during treatment. Am now 8 weeks since final chemo and have shed more since, but no one would know and I am so grateful for that - it has been incredibly helpful for my mental state to see myself when I look in the mirror rather than a cancer patient.
We look forward to supporting you and hearing how it goes with Paxman.
Keep strong!
Rain
0 -
Hi Marcela,
Believe it or not, the cold capping doesn't seem to be that well known in the US either. A lot of chemo patients aren't encouraged to use them and those that are allowed to use them often end up hauling in coolers with dry ice to their chemo appointments. I think most women fear losing their hair almost as much as the cancer and would welcome the chance to save it if they could.
If you have any questions, you've come to the right place. This is a great forum so keep checking in!
Leslie
0 -
Hi Marcela- I'm sorry you find yourself with BC again especially at such a young age. I applaud you MO for researching and finding you a cold cap source. I wish all BC sisters could have that support! I read your post and I think you may be referring to me, as I just finished using the Paxman. It is with a heavy heart that I say it was not successful for me. If you read back through my posts especially mid- September you will see how much I shed days 21 or so, I posted pictures as well. I have lost 80% or more of my once long, healthy, thick hair. I still have a VERY thin covering with major recession at forehead, ears and nap of neck. Large bald spot at crown. I cannot go out without a hat and will have to cut my very hair short at some point. I followed the Penguin hair care protocol, which is actually more restrictive then Paxman. I took vitamins, supplements, slept with a satin cap, used organic shampoo and was extremely gentle with my hair. I don't feel like I could have done anything different to be more successful.
I don't want to discourage you, I just want you to hear an experience from someone who's used the Paxman system. When I started there was little to no solid information or testimonials for me to reference. I wish you the VERY best of luck and much success, I really do!!!!!! Please keep us all posted on your progress, if it is successful it would great for some ladies to indeed have another option in cold capping. If you want to PM at any point please feel free.
Best of luck:)
0 -
me again! Day 4 after chemo and the section on my head is still numb from Monday. My forehead and eyes swelled too but look better. I'm so scared I did permenant damage to my head though. I don't want to go to the dr bc I'm dealing with enough. Don't want more to deal with. Aaahh!!!!
0 -
Jennjdance - I had similar swelling and numbness on top and on my forehead the first time, and it hurt a good deal. It seemed to stand up about a quarter of an inch above the surrounding skin and was hard. It will go away. The swelling sort of moves down your forehead as it goes away, as if pulled by gravity. I ended up with two spots of frost bite about the size of quarters about an inch back from my hairline, and did eventually lose the hair on both, but it wasn't noticeable because the spots were hidden under other hair.
I think my caps were too cold that first time. Although my helper claimed afterwards that they were not too cold, something was wrong. I recall her saying they were -38º C as we began capping, which is far too cold, and I wanted to say something, ask about it, but I was flying high on meds by that time and just kept quiet as I wasn't certain what temp they should have been and couldn't marshal my thoughts clearly.
The second time the caps were at the correct temperature and I had no trouble from then on.
0 -
Oh crap. This is right on top of my head, smack in the center, right above my forehead. I can't lose my hair there!!! It'll defeat the entire purpose of the cold caps. It's about a 2-3 inch spot too. I'm hoping to hear from others who this has happened to. The rep I talked to said she got frost bite and it turned black and scabbed off, and never had any issues with losing her hair there. She said she's talked to others this has happened to and they were fine. Praying I won't lose my hair there. This sucks.0 -
Jennjdance, I used the caps about the same time as another women in a nearby city (I don't think she still visits the list) and she had that frostbite scabbing in the same area, at her part. You can use a piece of gauze to protect it during your next treatment; meanwhile, the cold will actually stimulate hair growth. My friend changed her part temporarily -- really, when the hair grows back it often zooms in like crazy.
Two good strategies that have probably been mentioned are: between every cap chance, really shuffle your hair around so that your part is covered, and your scalp "shares" the cold. Also, wipe the inside of the cap so it's dry of moisture before you put it on.
Hairwashing: Cold or tepid water (colder is better), and GENTLY is the rule! I turned the shower on cold, ducked my hair under the water but not my body. Instead of lathering up with two hands and lots of motion, I worked the lather in my palms and then gently patted the shampoo on my hair. (The first couple of weeks felt very greasy, but then the drying effects of chemo took over and I didn't worry about that at all.) I have thick curly hair that tangles easily, so I used conditioner. I then took a warm shower, keeping my head out of the warm water, and when ready to rinse the conditioner I switched the temperature again.
I used a pick-type comb to comb out the hair. I patted the hair with a towel and wrapped it but did not twist. I let it air dry -- I always do that. No hair products.
I also swim every day, and did so throughout chemo except for the infusion days. My pool uses ozone instead of chlorine, but to protect my hair I rinsed it in cold water before the swim, gently put the swim cap on my head, swam a mile, then gently removed the cap. If it was a hairwash day, I used the method above. If it wasn't, I rinsed my hair in cold water after my swim.
A daily rinse can actually keep your hair looking fresh, even without shampooing.
I was always surprised by how much hair came out during my swims, but then I realized it was a week's worth of hair and actually less (cumulatively) than when I washed daily.
I used a silk cap to sleep. My hair often gets pulled by my shoulders at night, and I didn't want to pull my hair out while I slept. I felt a little silly, but it helped. I was sleeping on my back a lot due to post-surgical ongoing soreness, so that was a factor also. There were nights when it was too hot -- chemo flashes -- but I didn't sleep much those nights so the cap wasn't an issue.
I think my daily swim was like having a one-hour dunk in cold water for my scalp and my whole body. It is also vigorous exercise without overheating, so helped me detox the chemo and oxygenate my red blood cells. I'm convinced it helped me have a great outcome both in terms of SEs as well as with retaining my hair.
Susan0 -
Has anyone used the Formula One shampoo? I saw it on the Brian Joseph website when I was looking for the brow gel.
0 -
Well, number #11 done and counting down to the final taxol this Wednesday! I can't wait for it to be over and send those caps back to Michigan! I just washed my hair, and even after 11 weeks of chemo my hair is still a little greasy by time shampoo day arrives. Every week I pretty much lost the same amount of hair which seems like a lot because it was weekly. In hindsight, it probably was the same amount I would lose each week had I been treating my hair as I normally would with the exception on weeks 7 and 8 when I has a little more hair loss than normal. Again, that could be just me overanalyzing. Also, because I cannot dry and style it, it's very hard to tell. I haven't lost any noticeable hair anywhere on my head - including my temples, behind my ears, my nape - it all stayed put so far. I didn't lose much body hair. I noticed loss under my arms and it looked sparser throughout but it grew back last week. Then again, I am sort of known to have werewolf like hair growth. I am one of those people that would have to shave twice a day. So the fact that I can go a few days without shaving and it's not as thick means that the chemo did slow down the growth. We will see what happens pfc. I cannot wait to color my grey hair! Cruella DeVille!
I had a new nurse that usually doesn't work on Wednesdays - so she had not heard about the blanket incident. She never said anything about my blanket the entire time. Then all of the sudden, she comes back to my cubicle and pretends like she just noticed the blanket was plugged in. Obviously, the jerk nurse from the week before debriefed her on the incident- I saw the jerk lurking about my station. She started to tell me that it was policy, no blanket, blah, blah. I gave her the death stare and told her that her administrator violated my patient rights last week by screaming at me about policy so I was very much aware of the issue. Further, since they had all chose to ignore that policy, it was no longer effective as to my use. I then said to her point blank that I was reporting her administrator to the patient advocate of the hospital and the Joint Commission. Unless she also wanted to be a part of that report, she should just leave it alone. However, if she wanted to talk policy, she better get the patient advocate to be present for that talk. She shut up.
Leslie and any other newbies - I have really long hair. I layer cheesecloth over my head before capping to avoid getting my hair caught in the velcro. I assume it would also help prevent any frostbite issues. Of course, change parts with every cap change no matter what.
As for shampoo, I started with Dermorganics but my scalp didn't feel clean. I switched to Giovanni Tea Tree Oil shampoo. The Giovanni line is completely organic and worked really well. I used heavy duty Macadamia Nut Deep Treatment Mask on the shaft of my hair to avoid tangles. Then after I wrap it in a microfiber hair towel loosely for awhile, I spray It's a Ten leave in condition before trying to comb it out. Let any leave in conditioner sit for a couple minutes to penetrate before you start trying to comb it. I first start at the bottom using my fingers only. I then use either the Wet Brush or now I found the Tangle Teezer which is eve softer and better for my fine wavy hair. My hair gets really matted underneath, especially after treatment with all the manipulation. I use Hortense's trick with the corn starch. Works like a charm. Just be patient during any washing, drying, styling, combing whatever...patience. Looking forward to finishing! I will send pics PCF.
0 -
WHOOT WHOOT Daniella one more to go! We've all been waiting to hear how "blanket-gate" turned out!! Sounds like your guns were locked and loaded and ready to go. Good for you! Funny how the nurse from the previous week layed low this Wednesday huh? For such a tough guy she wasn't ready for round 2 and sent another to do her dirty work. Sounds like you handled it beautifully!!
Your hair sounds like it's doing amazing! Can't wait for pics!
0 -
Daniella - You are something! I am proud of you. Sloan Kettering needs a shake up. I left it two years ago because it was so rigid about not allowing me to use cold caps. My surgeon there told me that six months later it changed its policy to allow caps. I think it was losing too many women like me to other places which means they were losing the money we would have paid them.
It is sad that they are making it hard for people to use the caps and necessary equipment - such as electric blankets - when their policy allows capping. I went back there for radiation and none of the nurses commented only my having hair still or were remotely interested when I brought it up. I felt as if I was in an alternative universe.
0 -
Daniella, my hair is also long and looking pretty scraggly because I can't style it. My head is also kind of sore so I may be due for my first shedding. I'm about 2 weeks out from my first T/C chemo. It's hard not to worry about these caps not working. The cheesecloth didnt prevent the cold from getting to your scalp?
Question on hair washing--can you rub the shampoo into your scalp or just squirt it on and rinse it out? I don't want to do any damage!
Thanks! Leslie
0 -
Leslie we all worry that the caps are not going to work for us. I have one more treatment and still have that fear, that it's all going to fall out at the end. But you must remember, the caps have worked for most every woman on this board. You are not a "special snowflake" - the caps work because they work. As for the cheesecloth, it's such a fine layer of gauze that it does not interfere with the cooling. I cut a big piece- like a veil that hangs down just laying on top of my head. It stops my hair fro, getting caught in the velcro and also would probably guve you that at extra bit of protection.
As for shampoo, I mix a good amount of the tea tree oil shampoo with tepid water in a color applicator bottle. Then I squeeze shampoo mix throughout making sure to get everywhere. Sometimes refill the bottle with more water to get a good sudsy application. I don't scrub but do manipulate then scalp a little bit. Most others just pat the Shampoo a bit and let it sit awhile before rinsing. Then I use my heavy conditioner and kind of detangle it working it through the bottom. I do a final rinse with water and apple cider vinegar. The acv has a conditioning effect on the scalp and hair too.
0 -
Hor tense - thank you for the praise but my bravery would not be half of what it is without every lady on this board. Between reading everyone's experiences and advice, this would have been a much more difficult journey to undertake. Sloan needs to get with it. I think they dont want to deal with the extra steps needed for cold cappers so they try to do anything to discourage use. The nurses for the most part could care less. It's just those few jerky nurses that are unnecessarily disruptive. I will report the nurses and administrator re from the blanket scene. No one should have to go through what I did over a blanket during chemo. It's still seems like I dreamt that incident
0 -
Jennjdance-I posted last week that I too experienced pain and frost burn on the front of my scalp. On day 14 or so after my first chemo, my scalp started flaking! Like bad dandruff only big huge flakes. I just used a pick comb and combed out the flakes. I lost very little hair on that part of my scalp. I've noticed for the last few days I've been shedding a lot and its a little discouraging;( It's shedding in some areas more then others but I'm trying not to mess with it! Seems like above my left ear is the worst. My second treatment is Tuesday and I plan to use gauze to cover the front by of my scalp and plan to change the part with every cap change. I know I'll be nervous through this whole process!!
0 -
Thanks Jalsgal! Tomorrow is one week post chemo for me. I'm JUST starting to get a tiny bit of feeling there on my head again. I was getting very worried. Did your forehead and eyes swell up Jalsgal? Mine did but is all better now. I'm so nervous about the shedding too. For those who are shedding, when you say shedding, is it clumps?? Or just a few strands at a time?0 -
Jennjdance-no, my forehead didn't swell up, my head just was numb then it felt tight. My shedding is not in clumps, just strands. No one would know but me. It just seems to be happening all in the same area which is troublesome. We couldn't get the head bands quite cold enough so I'm afraid I'll lose my hair around the nape and around my ears. We'll see.....
0 -
Jalsgal - put the headbands directly on the ice in between uses. We only had 4 bands and this was the only way to get them cold enough for the next use.
0 -
DaniellaD-Thank you! We will try that tomorrow!
I have a question that is sort of urgent so anyone who can help please respond ASAP! A friend of mine was able to get the dry ice for my treatment tomorrow donated!! The problem is the company needs to deliver this morning at 11! My treatment isn't until 11am tomorrow and as you all know, I'll need to keep that caps cold until 6pm tomorrow night. Do you think the ice will stay cold enough? So Grateful for the donation but worried that it won't last. Anyone have any experience with getting your ice 24 hours before? He is bringing us 100 pounds instead of 80....
Thanks for any information!!
0 -
I've gotten my ice about 24 hours before - just 80 lbs, and it worked out fine. Don't panic! We covered the coolers with blankets to help with insulation while they were at home, which probably helped some. You could try that for extra insurance if you want.
0 -
We also got the dry ice the day before. You should be fine!
0 -
Just try to limit the amount of air space around the dry ice to prevent dissipation and cover coolers with a blanket. I get dry ice the day before, too.
Lucky you for the donation! I pay $125 per week, every week for 12 weeks. It was worth it but geez!
0 -
Completely panicked .... I washed hair today before my second chemo on Thursday and hair is coming out in gobs. I'm left with a big mat on top of my head that won't be 'detangled' as it's full of loose hair .... will let it dry and use cornstarch (tip from you all) but am pretty convinced I'm doomed to failure. I'm only day 19 and it's been shedding a lot the past 3 days. And now this! This sucks! Sorry to vent, it's just excruciating!
0 -
Jiilmare- here is my first major shed picture from day 20- I have four quart size ziploc bags filled with hair up until day 26, and I STILL have hair. I didn't use Peguin so I lost A LOT more then you will. Penguin works! I'm sure your doing everything correctly. Everyone goes through this panic. Stay calm.
0 -
Jillmare, I didn't have a big shed like that, but it's pretty common based on the posts of others. Take a deep breath, detangle your hair and let it dry. Now how does it look? Try to concentrate on the hair that's still on your head rather than what fell out. A basic rule of thumb- if you still have your hair at day 21, the caps are working.
0 -
Thank you barremom64 and jc254 for your reassurances .... there is NOTHING that prepares you for this despite the amount of thought devoted to it!!! Mine is drying, but still coming out ... it feels like the flood gate of hair follicles opened wide and won't shut! My daughter is coming over to help with the cornstarch .... here's to no bald spots. I'll let you know post-mat work. Thank you for your quick support .... ps my baggie from today looks like yours. Hoping to reach day 21, then, with some hair left. Jane
0 -
Jiilmare - There's a whole psychological component to this cold capping that no one can prepare you for. It's sort of like childbirth. You read everything you can, you buy what everyone tells you, you take your vitamins, you follow the rules to the letter but until you actually go through it yourself you don't truly understand.
I was well aware of the "dread-shed" to come day 16ish, when it actually happened and didn't stop for 5 days or so I wanted to throw myself off the nearest roof! How could something I was so prepared for leave me in pieces on the bathroom floor? I know why, because I thought if I did everything right maybe it wouldn't actually happen to ME. The fact that I had never lost that amount of hair before was surreal and frightening as well. I got through it with the ladies on this board adjusted my sails and went back for three more infusions. I still have hair, you will too!
Have faith- these girls on here know their stuff you're in good hands! Keep posting it will all be ok! You will hit a few roadblocks along the way like the matting, but one of your cold capping sisters will have a suggestion so you won't actually throw yourself off that proverbial roof;)
0 -
Thanks everyone! We got 100 pounds so I think we'll be good! Yes, DaniellaD, I friend of mine wanted to help but wasn't sure what to do so she just called around to all the dry ice wholesalers in our area and found one who was willing to charge us only .75 cents per pound (half price) and one willing to donate the whole thing....and he delivered! I feel very fortunate! He even offered to do it for my remaining treatments!
0
