Cold Caps Users Past and Present, to Save Hair
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hi lizjo. Sorry for what your going through. You should def. try cold capping. Especially with small children having to be out with them it will help you to feel more normal even though your hair will thin out a lot and you can't really style it like before. But hey at least you will have hair. Good luck.
Pamela, I'm glad your shedding has slowed. Today was wash day for me and the shedding is to a minimum. But I do notice shedding throughout the day like on whatever sweater or blouse I'm wearing. I think that's where the shedding is most. My hair is thinner. Sucks. But glad to have some hair. And yes. I think the chemo makes us just more tired everywhere legs and arms. Hope u stsrt feeling back to normal soon.
IL311 ,congratulations u did it. I can't wait for my last day. Now to try and put this nightmare behind you right.
Happy New Years everyone.
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Hi lizjo.There are a couple of threads on this website where you can find concise information to start you with.
There is: Cold Caps FAQ's - newbies - how to save your hair from chemo - with lots of useful information, including comparing different cold cap systems.
There is also a thread where you can read up on some success stories: Cold Caps: Success Stories with Photos here!
As far as getting your scalp ready - all I was told that we shouldn't cut hair drastically so shortly before cold capping. I followed almost all the directions as closely as I could. I had a very good success with 12 Taxol treatments. I think that keeping my hair made a big difference in how I did emotionally throughout my chemo.
Good luck with your treatments!
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Welcome lizjo! If you are like many of us, the loss of the hair was just as hard to swallow as the diagnosis. It's one thing to FEEL different through this journey but to LOOK different was too much to bare, at least for me. Even with my hair I have noticed physical changes and rarely see a glimpse of the person I was even 3 months ago. So I'd give it a try and if it's not working, you can say you did everything you could. Good luck to you. This forum is very understanding and sympathetic and pop in anytime you want to vent or if you have questions. Even though the diagnosis isn't the same, chemo and the sh*t that comes with it are very similar! Good luck!
Also, now that we have the link to the success stories, can those who've finished post their pics? The more success stories, the more uplifting it is for those of us still trudging on. Cold Caps: Success Stories with Photos here!
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Hi ladies - first, I wanted to say thank you for sharing your stories! I am starting 6 rounds of TCHP this week, and will be using the Penguin cold caps. I apologize for not going completely back through the thread to find this answer, but how did you cope with cleaning your scalp despite the fact that you had to limit your hair washings? I need to go to a dance class tonight, but I sweat profusely, not to mention having the joys of an oily scalp... isn't it better to rinse my hair / scalp with cold water to get the salt of the sweat off of it before doing the cold cap? Or is it recommended to just leave it as it is?
I hope to contribute more in the future! Much love to everyone.
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Anoncub, my scalp was very oily and through the first few weeks my hair would get so greasy that it looked as if it was wet (sorry, gross...). I was trying to follow PCC's directions as closely as possible and so I washed my hair on Friday mornings and Saturday evenings - I had weekly Taxol infusions. I was too afraid to even wet my scalp between washing. I did stay mostly at home though and I did not sweat. I believe some ladies did rinse their hair in between washing; I'm sure someone will chime in. You may also want to try and e-mail your PCC rep and ask.
Good news regarding the oiliness is that chemo dried out my scalp and after about 3-4 infusions my hair held up much better.
Good luck to you.
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Hi All,
I thought I was going to get through this BC process without chemo. Then my Oncotype DX score determined otherwise. I am more worried about losing my hair than I was about my recurrence and mastectomy. It's ironic that I have spent the last couple of years growing my hair out from my short style of 30 years. I would love to hold on to as much of it as I can and am willing to try anything! What are your opinions of the different brands of caps? I know the Penguin seems to be the most studied and was wondering who has had success with them. I haven't talked to my MO about them, but will be when I see him next week. This is all so overwhelming at this point. I'm just trying to get as much good information as I can. I'm just happy that I have found this community.
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catgirl, I'm so sorry about your recurrence. I used Penguin caps with weekly taxol - an easier chemo regimen than taxotere and cytoxan. Penguin caps seem to fit many people's heads better than the Elastogel caps or Paxman (if you are in a location where Paxman is offered). Good contact with the scalp is most important! If you'll scroll up a few posts you'll see links to the FAQ and Success Stories threads with lots of info
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hi cat girl. Sorry about your reoccurrence. Looks like you caught it early. Your like me doing chemo due to high onco score. You should def. cold cap. I'm using penguin cold caps. I like them because you can adjust them to fit your head and they've come within headbands for the hairline. I finished my 3rd treatment out of 6 and have hair still. I've lost some hair and it's thinned out a bit but it's still there no need for a wig yet.Good luck.
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BBwithBC45,thanks for the reply! Don't worry- after reading all the side effects of chemo, I think oily hair and scalp is hardly gross.
I think I'll just rinse with cool water and do the best I can, and skip all the detergents and flat irons and hair dryers, of course... until my wash day. hope that doesn't set things too far back, but we'll see... I've never had a thick head of hair, so even the pre-chemo shedding is ratcheting up my anxiety, bleah. It is what it is. All the best!!0 -
Thanks, gals! I wouldn't even have a clue that cold caps were an option if it wasn't for this site. Have any of you ordered a wig to wear as back up or is that not recommended?
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I am currently 18 days past my last chemo infusion and I am having very little shedding so far if any at all and my scalp is not tender like it has been in the past and i amhoping that is a good sign. as I have written here before I lost all my hair in June and July after three rounds of carbo/Taxol as I learned of cod capping the day after the first round. I'm having what is called 'sandwich therapy' for uterine cancer which means three rounds of carbo taxol, one month break then about seven weeks of radiation, and then one more break of about a month and then three more rounds of carbo taxol. during the break and the radiation treatments I have grown a pretty good head of curly hair and didn't want to lose it again. I have had two rounds of chemo since radiation and after the first round I shed quite a bit but there are no bald patches. I am now waiting to see what happens after the second treatment but so far so good. I have one last treatment left next monday. I am using elasto gel caps. I bought four used caps half price. I hope that I can report success after I'm all done. good luck to everyone and I will come back and let you know how things went after the final treatment.
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Catgirl2 - I wanted to have a wig ready just in case my cold capping wouldn't work out and I went to American Cancer Society. They gave me a free wig, so I had a back up plan, but I never needed to use the wig.
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i has a partial wig made from my own hair but didn't use it as much as i thought i would. ended up using a cotton bandana as it was the most comfortable this hot summer. it seemed no time till hair came back. and day 21 tomorrow and only the slightest bit of shedding and am thinking i won't be needing a scarf at all this go-round!
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Catgirl2, i used a Paxman machine and it was super easy. Really cold for the first ten minutes, then felt fine and all i had to do was unplug and plug back in when i skipped to the loo. Certainly i would choose it again over caps that need to be swapped every half hour (although of course i hope never to have to do chemo again!).
I had a big shed 19 days after the first chemo infusion, then light even shedding. Two months PFC, the hair i did lose is growing back (about an inch long so far), interspersed with the hair i kept. Most of my shedding was at the top of my head, which is not uncommon. Good luck with whatever you choose!
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I talked to my surgeon about cold caps and he is totally for it. He told me that my MO was against it.. I called to talk to his nurse and she confirmed that he wouldn't "allow" it and neither would the infusion center. I meet with him next week to decide if I want to proceed with the chemo as he suggested because of my oncotype score of 36. It sounds stupid, but if I can't try the cold caps, I'm hesitant to do the chemo. If I decide to do the chemo, I will have to find another Cancer Center and doctor in the St. Louis area. Any suggestions about finding a center and doctor that support cold caps. I guess just calling around is my best bet. Anyone else have to fight their doctor on this?
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Catgirl, that is shocking. Chemo is a choice. In the consent form it says you can stop at any time. So using a cold cap should be a choice too. If it's documented that he is against it, I'm not sure what the problem would be. I found this online: "Some doctors are concerned that the cold could keep chemo from reaching any stray cancer cells lurking in the scalp. Some believe that the scalp cooling might protect cancer cells there and allow them to survive the chemo and keep growing. But, in people who have used scalp hypothermia, reports of cancer in the scalp have been rare. More studies are needed to answer questions about long-term safety." I think some doctors aren't educated on it yet. All the major breast cancer sites talk about them. Are there a few different hospitals in the area that you can try their cancer centers?
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Catgirl, really it is called bullying. I would not go back to that cancer center. I would contact a hair project directly and see if they can find a place for you. There is a bco member tshire, I think, who has become a spokesperson whether she wanted to or not. You may want to pm her.
I had an experience with my bc surgeon where he started with you have no options your oncodx is 34 you have no choice. Once I said I think I am not going to pursue further medical treatment from you the tune changed.
I am 5 years out NED, you really need to get a treatment plan you feel is right. If you want cold caps you should get cold caps. It maybe that the facility does not want to be involved with cold caps but it should not require much accommodation from them.
Here is a link to tshire news story
http://keyetv.com/news/local/cold-caps-help-breast...
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Cat girl, I did my chemo at Mercy on Ballas and they were fine with it. Also, WU Siteman, which I now believe is the best place to go, supports cold capping. That seems very old fashioned of your MO, maybe a good reason to find another one. Either of those hospitals are your best choice for breast cancer in St. Louis area. Mercy has a place at clarkson and Clayton Rds. I used dr. Hahn there for surgery and dr. Curtis for my PS (I am having DIEP
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catgirl, I just looked on the Rapunzel Project website, and there is one location in Missouri that has a medical freezer (so you wouldn't have to do the dry ice thing). SSM Cancer Care – Lake St. Louis, MO. I don't know if that is anywhere near you... I had the freezer at my facility, and it made the experience easier!
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Happy New Year, everyone!
Just wanted to say congratulations to all who have recently finished chemo. So great. It makes me incredibly happy to see that recently most everyone seems to have had excellent luck capping. (Bareclaws - I'm sad to hear that you can't continue . I hope you're doing better otherwise with your new protocol).
I have just three weeks til I can color/cut since I'm following the 3 month PFC guideline but I'm ready to go rogue. I have yet to see anyone's hair that looks as bad as mine. I had about 40% loss which I know is common but it looks so, so much worse. It doesn't really seem that I lost 40% at the roots because my part (regardless of location) is the same as it ever was, so I guess the loss is from breakage. The quality of my hair is horrendous - really wispy thin and flat. Somebody awhile back said something about cotton candy hair. That's an apt description. Does any one else have this?
For those further out, who are so lucky to have developed the cotton candy hair, does it ever get better/healthier or does it have to be cut off? I keep fantasizing about waking up with normal thick and bouncy hair. I feel so much better physically now. I keep expecting my hair to follow suit. Sometimes I forget how bad I look and then when I catch myself in the mirror it's lights out. I'm wondering if anyone has used any products that have helped or has any insight. Maybe I will need to wear my hair up for 2 years while it grows out? Bleh. I'm glad I capped but today I'm short tempered and a little (lot) pissed about the outcome. I know there are worse things to worry about and I'm definitely worrying about them, but I keep thinking if I can look like myself it will help a lot with attitude.
On a positive note, eyebrows and lashes are fully back at 9 weeks, in case anybody is wondering about theirs. So my face is less newt-like (certainly a plus) but my head still sprouts the lovely cotton candy hair.
Love and luck to all. May 2017 be filled with joy and health, and deep, full breaths of gratitude.
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Thanks gals! I got a call from the nurse that I spoke to yesterday at my MO's office. She said that she talked to the doctor today and he looked at a couple more current cold cap studies and would agree to let me use the cold cap. He's an old school guy that was worried about scalp cancer. I'm pretty sure my surgeon talked to him. I'm still not convinced that I even want to deal with chemo.
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Just finished 6 rounds of TCHP on the 27th of December and did Arctic Cold Caps. Of course after the last round my hair is REALLY FALLING OUT BAD and I have a bald spot. Depressed because it was going so well and to get all the way to the end and then have your hair fall out really sucks. I did everything right. Question for your ladies. Since I had such horrendous side effects and didn't take my vitamins is it possible that contributed to the hair loss? This really sucks. So depressed
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Catgirl--No one wants to deal with chemo, but you know what I want to deal with less? Having cancer again! You have a high Oncotype score. Mine was 28. I was Stage 1 and it was so small, the biopsy got all the cancer out from the breast tissue, the surgeon had clean margins around the duct. We all agreed upon radiation until the Oncotype score came back. A score of 28 is predicted to have a DISTANT recurrence of 18%. The radiation takes care of local recurrence, distant recurrence is in the bone/organs which is treatable, NOT curable. I cried for days and read every study I could that could prove that chemo would not benefit me. Guess what? After 8 hours, I agreed with them and even got a 2nd opinion who told me the same thing. With 4 rounds of CT, I could cut my chances by 30% down to 12% chance. You are even higher which also means it'll respond well to chemo. Have you looked at your charts that came with your score? It's a huge drop in your chances. So take the time now that you're young and can handle this crap and get this cancer out of you for good!! That said, you are a stage 0 which is interesting. With stage 1 there's a chance some cells broke into the blood vessels surrounding the tissues that could cause distant recurrence. I didn;t think that was possible if it was contained in the duct? But definitely an aggressive form and you had a mastectomy. Hmmm...
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Hi Mnichols: So sorry about all the hair loss at the end of TCHP. I had a similar experience - not too much loss until the last two rounds then Bam.
If you can, maybe try not to blame yourself. I know that's really difficult. I do it all the time about this and other issues. But it seems there is just no way of knowing when the capping is going to work great and when it isn't, despite doing everything right. If it helps, I followed all directions, did eat properly and took Onc-approved vitamins but as my husband says my hair just got "whacked". I hope this doesn't discourage anyone but I'm starting to think that TCHP is a little harsher on the hair than some other regimens - at least it seems that way to me when I read about other people's results here. Point is, there are so many things that may play into capping success - the chemo regimen, hormone status, age, hair, genetics. We can follow the "rules" but there are so many things we don't know. I feel like I see patterns here but maybe not..this is really such a small (but wonderful) group in the whole scheme of things.
Hopefully your shedding will slow down quickly like mine did and you will end up in an okay spot and feel good that you did cap. I try to remember that I would have no hair except perhaps 1/2 -1" of some growth if I hadn't done it.
Do you have Toppik for the bald spot or can you cover it with hair?
Take good care.
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Willa, have you tried Acure hydrating shampoo and conditioner? My hair is in better condition than when i used Aveda pre-chemo. Smoother and more supple. Resilient. My sister sent me some from San Diego. When i ran out briefly, i noticed a big difference and now don't want to use anything else. Smells like almond cookies.
https://www.amazon.com/ACURE-Hydrating-Conditioner...
I did use conditioner and gently brush my hair all through chemo, because i was never told not to by the Paxman reps. I wonder if the cotton candy hair people get is from lack of moisture.
Congrats on having lashes and brows again! I'm right there with you, enjoying regrowth at 10 weeks PFC. Lashes are a third of their usual length but my eyebrows are almost back to what i'm used to.
Tomorrow my radiation oncologist will weigh in on whether i must have a mastectomy. Do not want. Lumpectomy + lift healing well but some DCIS went missing and is probably still in there. Will take Ativan to my appointment in case i need it.
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Hello Ladies,
I am day 40 of chemo. I am using Penguin Cold caps. I just realized today that I am not using the right kind of shampoo. I need ph balanced, no sulfates, no parabens. I have been using generic baby shampoo. Today, when I realized in the middle of the shampoo, I switched to Dove soap, not sure if that was any better or worse.
What I would really appreciate is the brand name of a shampoo, which is ph balanced and no sulfates no parabens, that is available in the US. And also if it is specialty product, the type of place I might find it.
Reading the ingredient list of Johnson's baby shampoo - online, looks like it has sulfate in it too.
I have only been washing my hair once a week. I have lost maybe 20-30% of my hair, not sure. I have thick hair and no one but me has noticed. I would say my hair no longer has any luster, but really who cares. I did not get my first shedding until day 21 and more at shampoo at day 24.
Thank you for any help in finding this illusive shampoo.
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OMG, Tunegrrl just wrote about a shampoo. If I wasn't in such a tizzy from using the wrong shampoo, I would have caught that. Is Acure Ph balanced? I see it doesn't have parabens or sulfates, but don't know about ph balanced.
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Hanging in there--I've been using Johnsons baby shampoo too. It's ph balanced and paraben free but not sulfate free. But it IS soap free. Sulfates may dry our hair out a bit but so would soap. Shouldn't have anything to do with damaging our hair follicles. I thought baby shampoo was recommended by the Penguin people? I use a sulfate/paraben free conditioner I found at Target called Macadamia Oil by Husk. Smells SO GOOD! Here's a website on ph levels of shampoos. My hair dresser told me that most shampoos are ph balanced so they don't irritate the skin or sting your eyes. http://www.thenaturalhavenbloom.com/2012/02/ph-of-...
Also, there are a lot of paraben/sulfate free shampoos at Target if you search. I'm sticking with the Johnsons just because I don't want to change mid treatment. I have 1 more to go. Maybe after a few weeks PFC, I'll look into a different shampoo, probably a thickening one, LOL!!
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Tunegrrl - thanks for the reminder about Acure Hydrating shampoo/conditioner. You mentioned that previously. I meant to get it and then promptly forgot. Not sure how that's possible given my hair. But much more importantly, sending you many good vibes in hopes that you get the best news today. Take care.
Hanging in - you can get Acure Hydrating shampoo and conditioner on Amazon. It's also carried at Whole Foods, if you have that near you. It sounds like you're doing a really good job with you hair despite your worries about the shampoo....
Have a good weekend, everyone.
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Pamela23, Ok, I'm getting Johnsons Baby shampoo tomorrow.
Willa216, Thanks for suggestion, Amazon is great, just concerned about ph balanced.
I hope I did not screw up with using a little Dove soap. It is so hard to get this right.
I found my penguin rep to be utterly useless. Once she had my credit card, I've haven't received any timely service. Can't get advice on weekends or after holidays and that is when I need it. I asked her where I could view the penguin video that I could not longer find on the website because they were changing the website just as I was signing up, her response: "it is on the website" --- so useful (not). So now that it is Friday night, I don't expect I can get any advice until Monday -- when I will be in chemo.
I lost a lot of hair tonight. I hate washing my hair.
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