Cold Caps Users Past and Present, to Save Hair
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pch, glad you joined us! My oncologist often gives my number to patients who are considering cold caps. Many times I get calls from women who have cancers other than breast cancer. Since I'm not familiar with other types of chemo drugs I usually suggest they contact Penguin Cold Caps directly to find out about the effectiveness of cold caps with their particular drugs. However, I always suggest they check out this thread because it's so active and such a warm and welcoming community. We all have the same goal- to save our hair. I often wonder if they find their way here and just lurk rather than post.
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welcome pch. You look fantastic! Good luck. It sucks to be on here, but at least we are all here together.
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Hi everyone. I'm new to this board and I am very nervous about the weeks ahead. Thursday I will receive my first chemo treatment along with using the PCC at that time. Please wish me luck. Thank you all for so much information. It is comforting to know that so many have had success and survived this process. It seems daunting as I read through the instructions. My caps should be here Tuesday, so I intend to keep practicing until I feel comfortable with the process. Looking forward to getting this process behind me
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hi jaejk5. Good luck to you. Ask any questions you have anytime. Once you have them in hand it makes it a little less scary. Once you have done it once, it is way less scary.
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Jaejk5, we've all been in your shoes. I'm pretty sure we were all just as nervous (and probably had a couple of messed up caps the first time). You'll be fine. Practice till you're reasonably comfortable and understand that nobody comes in as an expert. And then just do it. (Make sure you get a nice snug fit using the velcro bands--over the crown and around from the back hairline to the front. That's where people usually mess up a little.) Good luck. Everyone's here for you.
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Hello Cappers,
I don't know how many of us were told by Frank Fontain to stop using aluminum based deodorant but according to Dr. Susan Love it is nonsense. For a year I've been walking around a little bit stinky trying to make my organic deodorant work. And now I find out that there is no relationship between deodorant and BC. I'm switching back to my Powder Fresh Secret.
"Myth: Deodorant and antiperspirants cause breast cancer.
Fact: Skipping these toiletries won't keep your breasts cancer free.
One email rumor claimed that antiperspirant prevents you from sweating out toxins, which can then accumulate in the lymph nodes and cause breast cancer. But in 2002, researchers at the Fred Hutchinson Cancer Research Center in Seattle conducted a study to address this rumor—and found no link between deodorant or antiperspirant and breast cancer.A second rumor speculated that certain chemicals in antiperspirants, such as aluminum and parabens, may cause breast cancer because there is a lower prevalence of the disease in developing countries where women don't use these products. However, toxins are not usually released through sweat, and in Europe, where antiperspirants are not widely used, the rate of breast cancer is higher than it is in the United States. Finally, although a 2004 study found parabens in the tissue of breast cancer tumors, so far no studies have shown that these or any other chemicals in deodorants and antiperspirants cause breast cancer."
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WarriorWoman ,
So glad you posted this, I've never used any aluminum deodorant in my life and I've had bc twice now. The PCCs are great and working beautifully for me but the deodorant stuff just sounds like hooey pseudoscience. What good is saving our hair if no one wants to get close to us??; )
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I've found Arm & Hammer Essentials Fresh scent to be an effective deodorant without the aluminum.
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Such a busy board lately! Great to see so many new cappers!
Hey Kazzy - how are you neighbor??
pch - glad you joined us....all are welcome and yes, we are a pretty cool group who understand "PFC"!
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Hi, Jane.
I am also very sorry to read that using the caps was not successful for you.
I think it is wonderful though, your still here to share your experience.
It is very important for new users to know the reality of the situation.
BB-SO, happy to see you will be getting your caps soon!! One less thing to worry about, huh?!
Hope everyone has a wonderful Saturday!
Lynda
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So glad to see the deodorant post. I am trying Tom's organic deodorant and it SUCKS!!!!! I have sweat marks on my cloths and smell a bit. I really miss my deodorant! I really dislike not having a good deodorant!
-M
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Hi, pch :-) Glad your here with us.
Regarding the "PFC" reference. Would you believe it took me months to realize what that meant?! LOL
It is so appropriate.
Lynda
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I make my deoderant - 2 parts corn starch, 1 part baking soda mix with organic coconut oil until solid. Works amazing. Still not ready to go back to my antiperspent but will probably reconsider if I start getting hot flashes when I start tamoxifen.
I'm three months post chemo. A few shots from today. MDG feel free to use but maybe blur the face. I put a picture on Instagram with a #postchemo and #penguincoldcaps just for other women who may not know. I have had a few women reach out to me about capping. A small way to pay it forward through information
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Daniella, your hair looks beautiful. Were you on weekly Taxol/Herceptin for 12 weeks? (that will be mine regimen).
Would you mind telling me what kind of shampoo, etc. you used? How often did you wash your hair?
Thank you,
BB
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BB yes I had weekly taxol herceptin. I used Giovanni's tea tree oil shampoo and macadamia nut oil deep treatment mask. I used an apple cider vinegar rinse if my scalp felt itchy. Alterna caviar prep styling mist to detangle or It's a Ten. Josie Maran Argen Oil hair serum on my ends, always.
My hair was super greasy for the first....um ten weeks. It was bad. I had treatments on Wednesday. So I would wash Saturday afternoons. If it was too greasy, i would wash Saturday morning and then light wash Sunday night. I used a color applicator bottle to mine shampoo with water and apply to my scalp. Let it sit for a few minutes, then rinse.
I didn't lose much hair at all. I notice some regrowth around my hairline and nape - so without the caps, I would have definitely lost my hair. Good luck! You'll do great BB and all our new cappers! Thanks BB for the compliment! X
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The greasiness is my problem too. I wash my hair every day. I have bangs, too. I will have these oily noodles hanging from my head for a while.
Everybody says though that chemo dries the hair out, so that might help in my case
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Wow, DaniellaD - you look gorgeous. Looks like you had great success with CC and trying to save your hair. Thnx for sharing your pic. Gives us all hope that we're making the right choice ♡ Kim
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such beautiful hair!! You look great Daniella
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Daniella!!! You look AMAZING! So happy for you:) XOXOX
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Hi all! Kids are finally back to school today after a weekend and three days of cancellations for extreme cold and windchill (we're talking -24...almost cc temps), so I thought I'd post an update and ask a few questions.
I'm now on day 20 past my first round of TC. Thursday is round 2. The infusion itself went fine, had no real problems with the caps (DH was awesome!) and no real SEs to complain about (like everyone suggested, I stayed one step ahead with meds so never had any nausea or pain). I've managed to get outside and do my hour walk almost every day, except when the temps have been below zero. So, so far so good on that front.
But now I'm facing the dreaded shedding. It started Sunday, day 18. I didn't count them, but I would guess that I lost 300-500 hairs both Sunday and yesterday. I haven't lost so much while washing, but by my everyday combing and just running my fingers through my hair. My hair is light blond and fine and the hairs just seem to be slipping out in droves. No bald spots that I can see yet but I can feel my hair getting flatter and thinner. I know this is normal and I'm trying not to stress it (easier said than done!). My worry is that my scalp has felt all tingley with this shed and still does. Is that normal or does that mean I did something wrong and it is all going to fall out?! Has anyone else had this tingley feeling on their scalp with their sheds?
Thanks all for being out their...although I'm not one to post much, I read all of these posts religiously and they have made all the difference in the world to me! Whether you realize it or not, you are the support group, the confidants, to many, many women out here. You all rock!
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Daniella - you look awesome, and your hair is beautiful. What did you decide on tamoxifen?
MIMomma, I think some tingling is normal, and doesn't mean your hair is going to fall out. My Penguin rep kept admonishing me not to run my fingers through my hair - a hard habit to break, but try to leave your hair alone except for a daily combing.
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I have tingling and soreness on scalp from time to time. I don't shed afterwards. Sometimes, I think it's just a bit of frostbite, sometimes I think it may be the chemo. I'm just gentle w my hair and barely touch it. I think the satin pillowcase has helped a lot too. I've been coming my hair out with my fingers, and do get more stands this way than combing it gentle. Good advice to break that habit
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I have a satin pillowcase and actually really like it...who knew! And I don't seem to have any shedding at night, so I think it is working well. The only time I get massive amounts of hair is when I comb or fingercomb. And I'm not pulling or tugging because I don't have any snarls or knots. The comb slides through and out come 40 hairs! But this has been only happening the last couple of days. I've been more worried about the scalp tingling accompanying this shed, like it is a sign/symptom of more shedding and greater shedding to come. Is the tingling my scalp getting ready to give up all the hair on my head?
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I had tingling in my scalp and also had pain almost like I had been wearing a pony tail too tight....lots of us had that. I still kept my hair! You will too MI Mom!0 -
MIMomma - I had a huge shed also around day 18 to 20. I promise you it will let up. For about 3 days I was ready to give up on the whole cold caps but everyone on this board told me to stick it out. The shedding seems horrible... I would run my fingers through my hair the same way as you and a ton would fall out. When I picked thru it after I washed it, I had A LOT of hair in the sink. it does freak you out but it will slow down. I'm now on day 47 (just finished my third TC treatment last Thursday.) In between day 28 through 45 my shedding almost stopped. It has started up again but minimal. Nothing like around Day 20. Hang in there. My hair has shed a lot and I have a small bald spot at the back of my head near my part. No one would still know I'm going through chemo since my hair still looks "normal" to everyone else. I hate the look of my hair right now but .... I still have it. My scalp felt tingly but it's fine. Don't give up. ♡Kim
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Thanks so much Gatomal and MDG! That's what I needed to hear...that the tingling or too tight ponytail feeling (that's exactly what it feels like!) isn't abnormal. That somehow I didn't screw something up during the capping. Now I just need to stop obsessively combing my hair to see if I'm still shedding! Thursday's round 2 and half way home! I can't wait to get another one under my belt. I hope things go as well this time as they did last time. Actually, the chemo has been fine...it's the uncertainty over the hair that is so hard to deal with. But I have to keep the eye on the end goal...my health and at least enough hair that I don't look completely ridiculous.
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Okay, freaking out again! Discovered my first bare/bald spot, at my left temple. Will this stay bare throughout chemo or will some hair start to grow back before I finish all four infusions?
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My hair grew in length during chemo (I had 2 inches of roots to prove it!) but areas over ears and such didn't grow back for me through chemo. That is a normal area to lose hair. I lost it there, but not until the shed after chemo 2.0 -
Good morning MIMomma - I, too, lost hair in front of my ears up to my temple. Both sides. It is now very thin and gray (which means it's growing). UGLY. I can't wear my hair pulled back but since it's longer, I just wear it down and you can't tell. I have a little bald spot on the top back of my head and it feels like little hairs are growing back too. The other place people say they thinned or lost hair was around back of neck. Of course mine is as thick as before i started chemo :-/ would have rather lost it there than my ears. It's very stressful but you'll be fine. Any other questions let us know. If it wasn't for you girls on this site, I may have pulled my hair out myself. Lol. ♡Kim
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Thanks so much for the pep talk...it does really help to hear from others in the process. This morning was a hair wash, which I look forward to and dread at the same time! My hair always looks and feels better after a wash but the last two times I've been dealing with this huge shed. My hairs don't come out during the wash itself but after when I'm combing. And it's not like my hair is snarly or anything so that I'm pulling on it. The wide tooth comb flows pretty smoothly through the damp hair...there are just a hundred hairs that come out with each stroke. I haven't been counting each hair, but I wouldn't be surprised if I've lost three thousand or more hairs since Sunday. And it seems to be coming out all over...except for an especially thin spot at my left temple/hairline. Here's a pic of the area from this morning after washing and air drying:
With my hair down it looks okay...can't even tell unless I put my hair behind my ear:
My big worry is if the shedding continues at this rate things will start to be very noticeable. I don't have thick wavy hair like a lot of you. I really need some honest info (and maybe a little cheer leading) that this shedding will slow down soon. I'm sorry I'm getting a bit anxious for round 2 tomorrow. I just saw my MO this morning for prep for tomorrow and I hoped he would be "Wow, look at all your hair!". But he was more like, "Everyone's different. If you come in for our next visit and you still have hair, then we know it is the cold caps.". So the reassurance I was hoping for gets kicked down the street for another couple of weeks...boo.
Sorry for the long post. Must be the steroid (or the ativan...I was feeling very anxious this morning over the hair and tomorrow's long day) kicking in. Wish me luck for tomorrow and for less shedding in the future.
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