Cold Caps Users Past and Present, to Save Hair
Comments
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Lizjo, I'm sorry you don't qualify for the clinical trial you wanted. I would say that the dearth of Elastogel caps is a sign that cold capping is becoming more widespread - bad for users though. I'm guessing that companies who offer a service, like Arctic or Chemo Cold Caps, are snapping up all the Elastogels. As a last resort, if you can't find any to buy you could try one of the services. Or you could use Penguin - I know their monthly rate goes down after a period of time, and maybe you could negotiate something with them
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Rdsm-I'm so sorry for what you are going thru! So much of this cancer journey is out of our control, so I prize the few things that I can make choices about. Not being given honest, full answers to make informed decisions with is dispicable, and I hope you have the time and energy to share your feedback with penguin (the area rep as well as her/his immediate supervisor).
My MO asked whether I'll be capping, and was surprised I had read/seen photos with less than positive reviews. There isn't a ton of capping being done here (Regional hospital near Seattle wa), but she's personally only seen 1 woman with a large bald area on 1 side of her head(seemed like the cap wasn't in contact properly because it was a rectangle shaped area), and 1 woman who lost almost all of her hair (it was her 2nd time going thru chemo also). Other than those women, the clappers had been pleased with their results, although I'm sure there was a range of ok to amazing in the level of success. If there is a significant problem keeping your hair the 2nd time thru chemo, seems like capping industry should know the odds of success are different and they should be forthcoming with the info. If they aren't tracking the results for those users, they should!
Daily shedding vs the big sheds a predictable number of days after chemo is given - I wonder if the small amounts of daily shedding are from chemo-induced menopause? I've been perimenopausal for what seems like forever (at least 8 years), and am now finally getting to the tail end of it. During these years, my hair has become thinner and I've had a depressing amount of hair on the shower/bathroom floor and in my brush each time I wash my hair. It seems like it's tapered off a bit lately, but I'm going to keep a couple bagged samples of pre-chemo shed to compare to during chemo.
Curious if women who had already gone thru menopause before starting chemo also had daily smaller sheds
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Hi ladies - Can anyone explain to me why we can't allow our heads to get warm/hot? What does it do to the follicles? I asked my MO about how long the chemo stays in your body because I was thinking that heat would somehow increase blood flow to the follicles. I believe she said it is effectively out of your system after 72 hours, so I guess I don't understand what the concern is. It's so hard to not allow your head to get hot this time of year.
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redeesides - Since supplements are not advised, you could make sure you eat foods that help your hair like oily fish, bananas, cantaloupe, walnuts, avocado maybe and other things. I used root cover up to hide the gray. I rely on Toppik now.
HapB - I read the article you posted about natural hair care and cosmetics. I really need to take that information and figure out which items are essential to me and find them.
Rdsm - I commend you for trying to let people know that sometimes the results are less than optimal. I also thought I would only lose 20-30%. Instead, the top of my head is very thin and the sides are very short with a few long strands in the back. Ultimately, I feared permanent baldness with Taxotere so that's why I capped. I hope for you that your hair grows back more quickly than if you had not capped.
Cali58 - I just sprinkle the Toppik on my head. Interesting that you said you lost the top layers of your hair. I did, too. My top layer was longer than the bottom so I few a few long strands (literally) in the back with a good bit of short hair so I pin it up with a tiny butterfly clip.
Soxfan - I read somewhere that it takes 8 weeks PFC for the chemo to get out of your body. I think the chemo is such an assault that it's the reason hair loss lingers so long. Plus the cumulative effect of multiple rounds of chemo.
Lizjo - have you checked eBay for elastogel caps?
I am 11 weeks PFC. I have more eyelashes on one eye than the other but I don't think it's noticeable to others - they are still so short. I have 8 more days of radiation left. I must say other than skin irritation where I am being radiated, I feel really good. My lymph arm is showing effects of radiation - puffy and stiff, but I am hoping in another month it will get better.
I have been taking Viviscal all through radiation as well as other supplements. Actually, I started Vit E, Vit C, B12, Multi, all during chemo against doctor's orders. I was really worried about neuropathy and read that the E and B12 helped prevent neuropathy. So I hope I don't regret this. Hoping my diet, exercise and supplements will prevent a recurrence.
So my advice to newbies...don't use cornstarch in your hair (it builds up on the scalp and is difficult to remove without taking hair with it), and don't take supplements unless the doc okays them.
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I private messaged the moderators about how to start a thread for cold cap pictures ONLY. They OK'd it. Once I know how to get it up and running, I'll let you guys know. I think it'd be a wonderful tool for those who are considering cold capping instead of trying to sift through 600+ pages of our posts! I'll be asking you to post before and after pics like the ones you've shared with us on this form. Maybe we can state our regimen and the cc company we used too.
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ok ladies--I made a new topic called Cold Cap Before and After Photos in the same forum we are in: Managing Side Effects of Breast Cancer and It's Treatments. Please consider posting your pics there. I did the first one to show you the format I think would be helpful to others.
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Pamela23, there is already a similar thread, about cold capping success stories. It hasn't been very active though:
https://community.breastcancer.org/forum/6/topics/835766?page=4#idx_101
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Pamela - thank you for starting the new thread. I love the idea of helping newbies have pictures of "all" post chemo results, so they make an informed decision. I will wait a few more weeks for my final result to post mine.
BBwithBC45 - Thank you for the info. I saw the other thread with "only" success stories before I started using Penguin Cold Caps. It made me feel very frustrated and disappointed not getting the same results I saw on that thread. Unfortunately, it's misleading for girls that are considering cold cap use.
GoKale- thanks for the advice. I will have to try Toppik again. I think that my main problem is that I have too much grey. I will have to also use a L'Oréal spray to cover the grey.
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Thank you Pamela for starting the new thread
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BBwithBC45--Thanks for the reminder, I saw that when I was searching for pics but it wasn't very active and there were posts in between. I feel like we've posted more pics on THIS forum than what I saw--successes and not so successful. The monitors who approved the new thread suggested to have it as a pic only thread and keep questions/discussion on this current thread so hopefully we can steer newbies there for visual purposes only. I also think it's a great tool to list regimen and cold cap company since certain chemo meds are shown to be tougher on hair. Hopefully some of those women on the previous forum will contribute to the new one.
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I do agree that it's a great idea to have the "before and after photos" of both successful stories and not so great outcomes. This should help when deciding if one should give it a try or not. I remember being on the fence for a while before I decided to take a leap of faith and cold cap.
Pamela23, I didn't see your post about having already set up the new thread with the photos when I was posting the older "success stories" link. I must have done it at the same time as you did.
Hopefully the new thread will remain active and I didn't mean to poo-poo the idea. I now realize it may have appeared this way, so please, accept my apologies.
BB
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Elastogelgirl and Pamela23,
Thanks for tips on hair washing. I have found the less hair I have the easier it is to comb, because there is just not much left. I'm starting to get new hair 3/4 inch long and it actually helps fill in for the eye.
I'm thinking about cutting my hair to chin length from shoulder length. I'm not sure if I should keep bangs, because there are so little left right now.
Anyone get their hair cut to a new style. I am almost 4 months PFC, but still shedding. I guess I would like to shed shorter hair. I'll have to go back to penguin and see what they recommend.
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Lizjo- oh no! I'm sorry about your taxol news!
I just had an idea that you could keep posting here and possibly get some caps from someone here who is about to finish? Maybe you could borrow some caps or commute to a cancer center that has the caps to get you first coupletaxol infusions.... at a center that provides capping services. then purchase your caps as soon as you can find some. I just know there are girls on here who can't wait to get rid of their caps!
Surely someone here has elastogels or others that they would like to sell very soon!
Crossing my fingers for you! You and your hair look absolutely gorgeous. If it were me I'd keep capping! It's working well for you!
Hugs e
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hanging in-I'm sorry your hair is still falling. I think I did lose more than you during treatment but then none after.
As I think about this fact ..I want to remind everybody that I was doing Dr Longo's fast mimick diet for 72 hours prior and 24 hours after for every chemo. It's supposed to put normal cells into hibernation and make the cancer really hangry. The chemo gets absorbed into the hungry tumor more, and fasting protects many of your normal cells from dividing while the chemo is administered. I had neoadjuvant surgery after chemo and my tumor and large armpit nodes had shrunk by over 90percent. I wish it had been a 100 ! but very happy. I could actually palpate - feel my armpit node shrinkage all during chemo. It helps to know it's all working, diet or not. I'm very happy I did the neoadjuvant chemo too. Gave me time to pick a great specailist breast surgeon who came with her own plastic surgeon!
The diet in a normal world is supposed to be great for a reboot of your immune system. It's possible though, that fasting is not so great for hair when you are doing it.
when I read about non cancer people that do regular fasting they do report some hair loss and then report thicker healthier hair later! All just a guess.. but the hair I have left and what I've got growing now is super strong. I brush and I wash like before cancer I'm losing non, not much left to lose though.
eyebrows lashes regrowth everything is staying. So I do think my fasting did me a world of good! though I might have lost more hair in the short run.
I got to ring the end of radiationbell last Wednesday , treatments over! Yay
Feeling pretty crispyburnt today lounging a lot below! Some weirdo hair I got there! Gaining weight way too fast now! One thing about fasting it makes you good at storing fat! Not a good way to lose weight. I'm still going to try and do the diet twice a year. I believe in the research. Every animal on the planet evolved to go through periods of feast and famine. I think it's a very good immune booster
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I'm going to look into the fasting diet you referenced. Did you read about this being a good idea for before and after chemo? Did you discuss it with your Dr? Thanjs
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VL22
Google dr Longo's fasting for longevity and pre chemo infusions. There are articles out there.
My oncologist did not help or speak to my diet. He only just put up with my diet and the tweaks I wanted in my chemo drip. Specifically I reduced my steroid intake to 1/2 in my drip and none pre or post chemo. The diet improves side effects,,, so does the steroid. Steroids reduce the effectiveness of the diet.
It's very difficult to diet and cold cap. Adds much struggle to every infusion. I had so much help we made my chemo into a full time job. I initially lost ten lbs but gradually my body adjusted and I actually gained a couple lbs at the end. This gaining of weight probably means my cells were also more awake at the end too unfortunately. My AC treatments were a breeze but The taxol was really hard on me and my hair. So as my diet became a regular every two week thing I think maybe it became less effective at shutting my cells down. Dr Longo's diet for longevity is a once every four month or twice a year thing.
you can not fast if you are doing weekly taxol. You need time in between to eat and recover. Weekly would defeat the whole thing. I did chemo eight times in two week intervals
They are doing human trials with the pre chemo fast mimick diet. I did all my own research on how to do it. I can't recommend it because it's tricky and could put you at risk depending on your situation.
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Soxfan75 - you asked why can't we get our head warm/hot. I read it is only important to keep it freezing during chemo treatment day. Getting hot on other days should not effect results.. I think in general we should let our hair follicles breath but once in awhile if you were exercising or dancing, it should not matter.
I think they discourage hats and wigs more because of the pulling on the hair, rather than the heat. I believe it was on the Dignacap that stated this information. Also, they do not allow our follicles to breath. You're right, it is so hard to keep it cool in the summertime!
Pamela23 - I'm thinking the dosage of our chemo might make a difference in cold cap success too. I wonder if we should post the dosage too. I know my oncologist seems to be amazed about the success of my hair but I've had nurses tell me that I'm getting a light dose. My taxotere was 75mg/m2, and cytoxan 600mg/m2 for four treatments, 21 days apart. Also, does radiation effect your hair on your head at all
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PamBc my does of TC was different but maybe just worded different in my orders? Taxotere my "daily dose" was 190 milligrams. Cytoxan "daily dose" was 1600 milligrams. I did not have the best luck with my hair with Dignicap. I am still shedding heavily, I probably have about 80% loss at this point. I have no hair from ear to ear over the top of my head, a very small amount right at the hairline by my forehead and what I have in the back is thin and I have some smaller bald spots back there too. I used to have enough hair along my face hairline to pull it back and cover the bald spot, I can't do that anymore at all :
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Lizjo,
Sent you a PM of a woman near me who will sell some to you - she is done cold capping. I think they are elastogels and she has 4 I believe. Hope this works out!!
Anne
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Pambc10417, I think you are right about the dose being a factor in addition to which Meds are given.
I'm trying to get things ready for chemo (start date should be 7/28 after margin revision), and wondering if anyone has used the Kenra clarifying shampoo and Kenra leave in spray conditioner that were mentioned on the Rapunzel project website for being ph balanced and good for capping..... or any other suggestions. I have fine hair with natural waves (whcich are a midlife bonus 😊) and just cut it in a chin length bob so hopefully I can use a microfiber towel wrap to help dry, then use a pick and let air dry the rest of the way
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Willow22 - how much did you cut off of your hair. It's not advised to cut much off, just a trim, before cold capping because the hair follicles are use to a certain weight from your hair. I know it makes no sense that you should not cut your hair but that is what Penguin Cold Cap recommends. I use a micro fiber towel which is long, not a turbin type, and I have no problem wrapping my hair in it, and my hair is to my mid back. I leave it on my head for about 5 minutes or more to absorb water.
PCC also states to not color hair prior to chemo. Don't use any style products after you wash hair 3 days prior to chemo, and then make sure you wash hair on the 3rd day after chemo. Apparently, chemo is emmiting thru our skin on the 3rd day after and it's important to remove from scalp. So if you have chemo on 7/28 (Friday), wash on Monday afternoon. I know the rules are crazy but I tried to follow them precisely.
The Kenra is a great product and should work fine. That is what penguin cold cap recommends too.
Good luck! What cold cap are you planning to use
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Anne,
Thank you so much! I'll let everyone here know what happens, or if I still need caps.
Hugs,
Lis
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ladies! I am day 12, little shedding for now but a lot of prickling on top of my head, only. It sort of itches also. Wonder if this is a sign that cold cap will not work. Any experience with that?
My second round of TC is coming, and I want to be prepared.
pambc- I have your exactly same TC dosage! I did not think this was light. I just spent 3 days in the hospital because of fever after the first tc! So I am really scared of second tx! How far are you?
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Thanks for the info pambc010417 - it was just a little more than a trim, and I figured having 4 weeks between cutting and 1st chemo should help if I cut a little more off than recommended. I'm going to use penguin caps.
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Liz- hello from a fellow ovca interloper! I've done 16 rounds of taxol/carbo, with similar results to you! Your hair looks amazing! I'm surprised your onc is suggesting maintence taxol. Have you sought out a second opinion? I'm no doctor, but I recall studies suggesting that maintence chemo was counter productive.
Willow- I used the Kenra clarifying and really liked it! I also use pureology shampoo as well.
Well ladies, I'm finally diving into the home stretch. This week was the last of my double infusions, so just two more rounds of weekly taxol. I haven't washed my hair in a long time so I'm terrified of the massive shed that awaits but at least I can see the light at the end of this tunnel
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Hi I am all new to this and have posted a couple of times.. i was told I will be having 6 rounds of Pertuzumab, trastulunab, Docetexal and carbutalin. Meeting Oncologist again on 7/17 and start chemo on 7/24. Do you think cold caps are doable with this mix? I had multifocal breast cancer ER +,PR+ and HER2+ No lymph node involvement. Had my DIEP Flap and Bilateral Mastectomy on 5/22 Cancer was only in my left breast. Slowly recovering day by day. Glad that is over and pretty happy with the results.
Any and all advice would be appreciated. I am not a vain person but a private one. My youngest son is 10 years old is upset at the fact that I might lose my hair, and I would like to feel somewhat in control of things.
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If it matters 21 days apart for infusions and I am going with Penguin. Thanks!
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Mari - I agree, I did not think it was light either but I'm not sure why the nurse said it was light. Maybe she was trying to make me feel good. My last dose was June 29th! I did fairly well but I had the Neulasta shot which really helped me recover more quickly. My friend's daughter did not have Neulasta and she spent 5 days in the hospital after her first treatment. Then her insurance finally approved Neulasta for her too. She had a fever also.
I had the usual day 3 through day 8 (after treatment day) of nausea, constipation, then diarrhea, hardly able to eat (except chicken broth soup), and very difficult time drinking water which is soooo important. Finally, I would put water in a glass, not plastic or metal, with a little bit a lemon in it. That is the only way I could drink it. And I would try to drink 10 glasses a day. I would not drink while I ate food which helped with nausea.
Another key thing I did was ask the oncologist to give me taxotere over 2 hours (instead if 1), and cyctoxan over 1 hour (instead of 30 minutes). She agreed, and that helped with my neuropathy (tingling in fingers and toes). Studies have shown that slowing the infusion down can help side effects.
I wish you the best.
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KCMC - penguin cold cap should be able to help with you specific treatment. I had to send them the drug, dosage, and amount of time for each infusion. They should be able to tell you if they have experience with your drugs. They also might be able to give you a reference to call. I'm going to attach their listing that they sent me and you can see if your drugs fit in any of these categories. Good Luck
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Thank you Pam my oncologist is suppose to be mailing me out a list of the drugs so hopefully I get it this week. Been in touch with Penguin and they are waiting for the the list. Thanks for answering and I just printed out your response.
Monica
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