Cold Caps Users Past and Present, to Save Hair
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MJPow - Your hair is growing nicely! Your scalp is very full. I am worried about my hair because it is not growing like everyone else's. I will be 3 months PFC on August 30 and I am still kind of bald. I have had "some" growth, but not like I expected. I took 1 box of Viviscal, but had to stop because several doctors (dermatologist, Alternative Medicine M.D. and Nutritionist M.D.) told me that Viviscal has vitamin C and breast cancer survivors shouldn't take any vitamin C supplements. My dermatologist told me that I can use Rogaine for men, but I am afraid I might get facial hair and I haven't used it. For the last few weeks, I have been using a "Hairmax Laser Band", that my dermatologist recommended. I am posting a picture I took today after washing my hair. My hair is so thin, you can see the letters on my t-shirt. I have been washing it every 4 to 5 days and every time I wash, I shed the same amount of hair. I am also posting a picture of the
Hairmax
.
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Cali58
I did not know we should not take Vit c supplements. Had you heard that before? There are so many different opinions out there and it's very confusing. Where did you get your Hairmax and what model and is it expensive? How often do you wear it and fir how long? It's very interesting looking. I am taking viviscal too. I was taking BioSil so I might return to that.
Goodluck and I hope Hairmax works for you! Keep us posted!
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SoniaL - my first chemo treatment was uneventful (thanks for asking) -- but oh wow! that first freeze is a shocker!!
. I am fortunate in that the dr. rx' a pain killer, which I gladly accepted about 20-30 mins in - next time - I will take it right away. My oxy and heated blanket helped make it a bit more comfy. Yes, they let me stay longer - I was able to get in 3 hours, even though everyone thought I was crazy. Once you are there and numb its a bit easier, I just watched another episode of my netflix series and the time passed quickly. I have lots of experience of being on planes - I travel all the time - so I didn't have to get unhooked this time - no bathroom breaks. I did get in 3 litres @ home, so I feel like I made up for the flush. Not exactly healthy, however, it did help to keep things moving along.
Now the wait for the big shed - I am telling myself over and over again to just leave my hair alone, don't touch it, leave it. My head still feels a bit numb an 'off' so easy to do right now anyway.
Cali -- try topixx or some other filler while it grows in. It really does work wonders.
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TravelGirl - Wishing you well , and glad that the clinic is letting you stay longer. It really helps to have them on your side. DIGNI Cap was not an option in Idaho when I went through 4 rounds TC Aug-Oct 2016. I used ChemoColdCaps, with lots of help and support from friends. I hardly noticed the caps the first time, but found I got colder with each treatment. By the last treatment I was wearing layers, and used a blanket. So take layers with you. Layering seems to work better than 1 heavy coat/blanket. The clinic can probably provide warm blankets as well. Drink lots of fluids, even on non-treatment days to help flush it out of your system and keep hydrated. I made an effort to avoid caffeine, sugar, artificial junk. One way to drink more water was to add a few cucumber slices - it seemed to take the city taste out of the water. Exercise/Activity is also important, even a short walk.
2009 - left breast, 51 years old , no family history of breast cancer. ER + . Lumpectomy,, 6 weeks radiation, tamoxifen 5 years
2016 -left breast, 58 years old, ER+, thought to be a new cancer vs recurrence, but unknown. 4 rounds TC, bi-lateral (my choice), Aromatase Inhibitor starting 4/2017
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I noticed that with Docetaxel (Taxotere) the shedding is bigger, i just touch my hair and it falls, i have 2 more to go. If anybody in this forum with the same regimen that can tell me her experience? I am looking to the halo extensions, as i am working i need to do something in case it keeps falling. What such a stress!
I lost almost all my eyelashes. I guess this regimen is worst for the hair. Although i havent had much side effects, only a flu, pain throat and sores in my thighs. Keeping positive these chemos are going to be over in one month. 😅
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hi ladies!! Just checking in!
I am 5 weeks PFC. 17 rounds of carbo/taxol. Life is insanely good. I am still shedding, but with every wash it's getting smaller and smaller. I used heat for the first time in 25 weeks! My hair is feeling strong.
There is SO much joy waiting for you at the other end. I'm only 5 weeks out, but chemo almost feels like another life. I got my post chemo scan, and my onc said I had a "complete response to chemo". I'm over the moon.
Thank you all for your support! I would imagine that I lost about 20% of my hair volume. I can tell but no one else can
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Congratulations Sherry! You look beautiful!
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Quick question for those who have capped with Elastogel. Has anyone used the new caps that look like this:
Apparently, Southwest Technologies is no longer selling the other caps that were more round. I'm concerned that these won't get cold enough.
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hi Vivian. I had taxotere and yes it's very rough on the hair, it's rougher than the other taxain taxol. I had 6 rounds of it. It does get better and it also aided for my lashes to fall out once I was done with chemo. Hang in there. This is almost over.
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Hair washing day again. I have now been through 4xAC, and 7 of 12 Taxol. I can't wait to have my Fridays back again!
I have used heat on my hair throughout this cold capping, but I am careful to avoid my scalp. I have been doing this hair regime since I started chemo. It involves letting my hair air dry, then using a large, boar's hair round brush on the dry hair to gently blow out the strands one small bit at a time to smooth it. I discovered that when the hair is dry, there is very little tension in the hair if you do a tiny section at a time, and you can avoid putting heat on your scalp quite easily.
Here is a picture of what's left of my hair, coming out of the shower and air drying. For shampoo, I have been mixing Honest Company shampoo and body wash, which is super gentle and I used on my newborn, with some warm shower water in a container, and pouring it over my head, patting at it gently to hopefully work it in, and rinsing out.
As everyone has reported, I also have numerous short new hairs among the longer hair. Judging by their 1 1/2" length, and estimating an average growth of half-inch per month, they must have probably been already growing when I started chemo on May 12th, three and a half months ago. I think these tiny hairs were the newest follicles that were easiest for the cold caps to save. The older hairs that had been growing for years came out with the Big Shed at 23 days after first chemo. Some non-cappers on my regimen reported that they could feel their bald scalp starting to sprout stubble at this point in their treatment, but I don't see or feel a bunch of new stubble growing from my scalp yet. Maybe they are there, but it is harder to feel with the existing hair.
Next, I used a blow dryer and a round brush to carefully blow out the dried long strands. I never let the heat get to my scalp, and there was not tension or tugging in the hair as I used the brush. Blowing out still works when the hair is dry. It helps so much to have the hair smoothed.
Then I added Toppik to the thin spots, using the air pump applicator. I didn't need Toppik until about 10 weeks into the chemo. I brushed my hair back as a comb-over to cover the thin crown. I used a little hair spray to keep it in place.
Since the hair got so thin, gathering the hair into a loose pony tail improved the appearance drastically.
And now I'm ready to face the world! Tomorrow morning, I will comb out the new shedding, and touch up with Toppik and hairspray. I won't wash it again until day 3 after the next Taxol. It was 100 degrees yesterday. So glad I didn't need a wig.
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Elberama wow it looks like you manage to fix it very good. It doesn't seem you have bald spots only thin hair. Today i am going to see the halo extensions to a salon i let you know.
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Elberama - truly amazing what Toppik can do!
Toughcookie - that new cap design looks pretty weird. It appears to be very thin, so I agree it wouldn't hold the cold temps very well. Is there any way you could do Penguin caps? Others here have gotten help with the cost, although I don't remember who or how. Try the Rapunzel Project website if you haven't already.
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Hello, I am 7+ weeks out from Tchp chemo.I used arctic cold caps.I had very thick hair down to my butt.I never lost any hair during treatment.I started to shed about a week after treatment ended and i lost about 50% no bald spots just thinned alot.I continue to shed everyday .I am on Perjeta and herception for the remainder of the year.I have read and found some new info regarding Perjeta and hair loss.I definitely can tell after my P and H treatment that I lose alot more hair for a few days.I really think Perjeta is the culprit now with the continued shedding.I'm kinda bummed because I went through all of the nightmare capping to learn perjeta can cause hair loss as well.
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elberama- I think it looks good with the toppik and ponytail! I hope you're able to hold on to the rest of it.
lily- I jut read your previous post and that really stinks!!! I am fearful that I'll go through all t trouble of cold capping and then not be able to grow my hair because of the herceptin.
Update on the elasto gel caps - I ended up going with chemocoldcaps. I had hoped to save some money by doing it myself, but I needed to get them ordered. For those who have capped in the US, has anyone had any luck getting reimbursement from your insurance company
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Lily2- I am by no means an expert, just finished my 3rd round of tchp (out of 6) and will be doing a year of herceptin. I've never heard of anyone continuing on with perjeta tho. Is this common? I also had no heard anything about either drug and hair loss. I'm doing Penquin and have lost about 30%, maybe more. The thin spots are too "bald" for me to be comfortable with though I see plenty of women with less hair out everyday. Maybe if I felt better in general I wouldn't care as much. I just feel so awful all around...
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Babasmon - My insurance company just approved Perjeta for a full year for me. Lily2 is the only other person I've heard of that's getting it as well.
Lily2 - I'm 7 weeks PFC as well and will continue to get Perjeta and Herceptin for a full year. I'll have to start paying attention to hair loss after my infusions to see if it increases. I'll let you know.
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Elberama--LOVE the smoke and mirrors. Great job!!
Sherry--you look great! Hope you post on the before/after thread.
Summer--I have worn my halo to 2 parties recently. It definitely puts more weight on your head but within an hour you get used to it. No one has been able to tell and they can't believe it when I explain it. I really look like the old me. My sides just keep getting thinner every month so I'm doing more hats and low ponytails w/ bobby pins to control it. Wearing it down is no longer a great option for me. I'll only wear it for social occasions as it's just more comfortable without it for daily use.
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Pamela23---Do you know what is causing the sides of your hair to get thinner? Is it the Tamoxifen? I noticed before I started taking tamoxifen my hair after chemo was growing in pretty fast and now has just stopped. Also the hair on my legs had come back, now I only need to shave a few sparse hairs once every 2 weeks as it too has practically stopped growing. On to the scary part......I see tons of what some would call peach fuzz on the sides of my face.....yuck! Luckily it is blonde but you guessed it in the sunlight it can really be seen.
As for the halo piece it looks amazing in your hair!!! I am missing so much hair around my face not sure if a halo would help. Chemo literally wiped out my hair line. Well, if the hair on my face keeps growing maybe I can use it lol.......Someone on these boards said it best about cancer.....'the gift that keeps on giving'.....
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Toughcookie, I don't think herceptin causes hair loss.I'm no expert but from what I read and just recently spoke with my oncologist and his response was that perjeta could possibly cause hair loss not herceptin.I haven't read anything that suggests herceptin causes hair loss.I'm gonna try to post a link on the new info I found regarding Perjeta and hair loss.
Babasmom,I'm sorry your feeling so awful.I had the same treatment as you and I totally understand.I am on Perjeta based on the phase 3 trial.I am also hormone negative so no hormone therapy for me. My MO felt that taking perjeta for the rest of the year would add an extra 19% of security for os and dfs so I'll take whatever I can get lol
Soxfan75, glad to find someone else that is doing the H&P post chemo.Yess please keep me updated on any increase in hair loss.
HapB, Hmm I haven't heard of herceptin and hair loss but who knows everyone's body reacts different so you never know.I'm just hoping neither cause hair loss especially for all of the women that are cold capping with good results that end up losing their hair post chemo because of continued use of Herceptin or Perjeta or both in my case.
Here is the link I found regarding Perjeta.
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Oh and make sure you scroll all the way down through the link most hair loss is seen between 40-49 years of age.great! I'm 43! lol
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Elberama - thank you for your pictures! Styling my hair and making it presentable has been a challenge. I have one more chemo to go! Then waiting for the PFC shedding.
Has anyone tried Nioxin shampoo? I'm reading on the boards to use it 4 weeks after final chemo. Does it work? I was looking to buy Nioxin #2.
Thanks.
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Nioxin shampoos, conditioners and scalp treatments can make the hair look a bit fuller but it does not help the hair grow. Nioxin Hair Regrownth Treatment is the only Nioxin product that can. Good luck:)
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summer, ditto on what u said about the hair on out legs. It's been about a month that I notice I hardly have to shave. After chemo my leg hair was coming in quickly. Not anymore. So I'm assuming it's doing the same for our hair on our head. This sucks big time. If it's not one thing it's another.
I start work this Friday after being out for a year. I was hoping my hair would b back to normal but it's not. I know I'm gonna get all the questions "did u cut your hair, where have you been". Ugh. I'm dreading it
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The picture above shows Adorna Human hair with Velcro that attached to hats and caps
Sorry I haven't responded. I have been so busy lately.
Pambc - The first time I heard that I shouldn't take Vitamin C supplements was from a doctor when I visited the M.D. Anderson Cancer Center in Houston, TX. Doctor said that vitamin C supplements may cause breast cancer recurrence. I still took Viviscal for 1 month. Then I stopped after I heard the same thing from other doctors. I got the Hairmax at Nordstrom online for $795 + tax and started using about 2 1/2 weeks ago. It may be already be working. I will post results.
Travel Girl - Thanks for suggesting Toppik. It's difficult for me to use it because I have too much gray. I use hats and caps to avoid having to color spray and then apply Toppik. I just got a European hair wig on Sunday at Milano Wigs in Los Ángeles. They will be having a Labor Day sale. They gave the 20% discount ahead of the sale. The hair feels and looks like my own used to be. It felt strange at first, but after 1 hr I was used to it. I am happy with it. They also sell Adorna human hair that attaches to hats and caps with Velcro. I will get one of those next year. With fall and winter coming up, I can deal with the wig only.
Élberama - Your hair looks very full with Toppik. Fantastic job!!! I would use it if I didn't have so much gray.
Travel Girl - Igrow is similar to the Hairmax band I purchased. I posted a picture on page 643 if you would like to see it. I will let you girls know how it works.
Pamela 23 - Halo looks great. Is it human or synthetic hair?
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I forgot to mention something. My insurance will pay up to $150, per year, for the purchase of a wig. You might want to check with your health plans how much they pay. It should pay for halos too. I have heard that other health plans are more generous than mine
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Hi all! I am currently having a reoccurance.
:-( I use cold caps last time, and kept my hair! I want to try again, but Im not renting this time. I want to buy. Anyone know anyone who is selling them? You used to be able to buy on Amazon... not anymore. Fishy if you ask me!
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icandoallthings, I am so sorry you're going through this again. I have been trying to purchase caps for the past month. You can probably page back on this thread and see some of my posts asking for info on the elasto gel caps that are unfortunately no longer being sold. On Monday, I actually spoke with Southwest technologies, the manufacturer or elasto gel and they're no longer manufacturing the caps that were used for chemo. It has something to do,with the FDA and their instructions for use. I did find one on eBay, but one cap isn't going to be enough. I finally broke down and ordered my rental through chemo cold caps. Hopefully some one will see your post and have some to sell you. I wish you luck and, again, I'm so sorry you are here again.0
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Summer-- I STILL haven't started tamoxifen. I really should at this point. I told my MO a couple weeks ago I wanted time off to heal and she was fine with it. Our bodies have been through so much! I told her I'd start sometime in September, so the constant thinning from month to month isn't from that. And it's actually only noticeable in pics, I don't know it's thinned out so much until I look back a couple months. My new growth is 3" at best so I definitely don't want to cut it yet to match up the short w/ long. I just will continue to wear a hat, a low ponytail or the halo on special occasions. Hearing you and Hopfull with the leg hair stories worries me too. I just want my old hair back! I am so blessed and thankful to have hair but this in between stage which is going to be awhile, is so unflattering. I just want to feel confident when meeting new people or going in public. My hair was a great feature for me before. I'm just thankful that my lashes look better than ever after falling out twice.
Cali--I'm not sure if the halo is real hair, I doubt it but I can wash and flat iron it so it must be a strong material. I need to look at the booklet that came with it. I've only worn it twice and then it's hung up in the little bag it came in.
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Hi everyone. I'm going to be starting 12 weeks of taxol and a year of herceptin. My local center doesn't do capping, but said I can bring my own. It looks like penguin cap has a good level of success. I've been reading this thread, but I'm feeling pretty overwhelmed so thought I'd jump right to asking for input...
I'm worried about trying to manage the system on my own, but I'll be driving to and from chemo by myself. Has anyone ever hired a caregiver to help with the system and would that be necessary/ a good idea? How is the customer service with penguin? I'm feelingconfused and overwhelmed these days so I need something easily understandable and doable. It looks like the cost is around 500$ a month. Is that right or are there hidden costs? Their website made it seem highly successful, but is that really the case from what you know?
I'm sorry for just jumping in with a ton of questions. I'm just so tired of trying to educate myself and understand all the options etc.. I really just want someone to tell me what to do and to make everything okay again. I truly do appreciate any insight and help you can offer.
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