Cold Caps Users Past and Present, to Save Hair
Comments
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luvmys, your lashes are beautiful. They don't even look real. Hope mine come in soon. I have been applying castor oil and a serum called rapid lash. I'm 10 weeks PFC.
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Thanks Luvmyys, go to wash it tomorrow and hope it all hangs in there, in a couple of weeks my mullet will be long enough for her to add some highlights so then maybe it won't be so noticeable. and your lashes are beautiful. I hope mine get that thick and beautiful.
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Hi Everyone,
Kshorten--- your hair looks great. What type of highlights did you use?
Pamela23--- I think you mentioned you use the L'Oréal spray to cover grey hair. How long after final chem did you use it?
Has anyone tried the paint on products to cover grey? I'm 5 weeks PFC and thankful to have some hair but it's coming in grey. I used to color my base and add sthe me highlights.
Hope everyone has a good Sunday
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MichCali - thanks, she just used bleach and then put a rinse on it. I don't think it was anything special. She knew that I had cold capped but I sat under the dryer, let her wash it as usual and blow dry it. I'm happy to say the when I washed it today that it didn't all fall out and actually had very little shedding.
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I am 11 days PFC. I have been using the Acure shampoo and carefully washing using a spray bottle to mist my hair until it is completely wet, shampooing gently and then misting my hair again thoroughly to rinse it out. Despite checking to see if the water coming off my head is running clear, I don't think it washes out completely. My hair even after just washing it, feels like a residue remains. It's gross. Yesterday, I cut back on the amount of shampoo to see if it helped. It did a little, but my hair still looks unclean. Any ideas on a better-rinsing shampoo?
Viviscal - seriously considering buying some. How long did you have to use it to see good results? Has anyone used something different (cheaper) and gotten good results? Do you think it will be necessary to use it for many months or a whole year to get better hair and maintain it? Has anyone skipped supplements altogether and achieved adequate hair regrowth?
I am using castor oil with rosemary on my head - so not helping with the cleanliness, though. It's been about a week or so - no change.
Luvmyys - amazing lashes!! A full head of hair; love to hear that! Congrats on the hair cut.
Kshorten - stunning head of hair you have. Pretty and normal.
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GoKale-are you still shedding?
I found...The best way to get my oily hair clean is to fill my bath 1/2 full with warmish water. I squeeeze a small amount or acure shampoo into a jar and mix in 1/2 cup or more of coldish water. I spread this watered shampoo all over and gently finger it into it into my scalp. I leave on a bit...then dunk my head in the warmish water and swirl rinse my floating hair. Then I immediately follow up with a cold water rinse from my shower wand.
Afterward I keep my hair out of the bath and add hot water to my bath because I get cold from tepid water.
This was what I had to do to get the stupid mess of argan oil out of my hair. I made a mistake of putting way too much in my hair and it was all gooey with clumped toppik....this method got my hair really clean.
I'm not really shedding so I can't promise this technique will not cause you more shedding.
I have also laid on my kitchen sink counter and had my hubby help me wash my hair with cold water many times. It easier for him to see if we got the suds out. And it's not like taking a cold shower
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Elastogelgirl - Thanks! Yes, I am still shedding. I noticed that you said you stopped shedding right after you finished chemo. I wonder if the Viviscal helped you stop shedding. I am torn about buying that or trying other supplements.
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GoKale-it was not the viviscal that stopped the shedding, I think not,,,since I started it later...my shedding during the last two DDtaxol was so bad I thought I would be bald if I shed at all after that..my theory is that I shed all at once and somehow that is why I'm done shedding...knock on wood! it was huge clumps!, I know my pics look pretty good. I'm almost 6 weeks pfc and still having a hard time covering the bald. And dealing with the limp thin strands is not easy...I constantly look for hair in the bald areas on top and it's kinda hard to see. I'm getting growth in front and side burns for sure. Growth is definitely happening in the areas where I first lost my hair. Like around the ears.
did not take viviscal straight thru aftermy last taxol. In fact I was taking half the dosage and skipping dosages because I was kinda nauseous for three weeks after my last taxol. I'm up to full dosage now. And am a true believer. I do not know a good less expensive replacement, sorry.
Good luck with the hair washing and don't do anything you will regret. I know I do stuff to my hair that I regret and I know is bad for it almost daily. Patience is so hard......stay away from mirror!
Hugs c
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Elastogelgirl--you are so lucky you stopped shedding so quickly. I'm almost 15 weeks PFC and the past wash was the first one I felt was normal amount of hair coming out. It gave me the confidence to put in product and that along w/ the thickening shampoo/conditioner I use, I STILL have volume to my hair 3 days later. If I wasn't still spraying the grays. I'd feel somewhat normal. The lashes and brows help. My left eyelashes are coming in after my right ones so I JUST got them in the lash curler over the weekend but have been able to curl my right side for a couple of weeks. I PRAY they don't all fall out again but I heard they do being on the same growth cycle. have you guys heard that? Also, I think Henna would be fine. It's ammonia free and natural but I read it's messy and takes a long time.
Kshorten, your hair is amazing! I've been using Nature Made Hair, Skin & Nails for 2 years. My nails were great all during chemo although my thumbs started to pull away from the bed in a small spot and finally tore over the weekend but the length and strength have been great so I hope it's done the same for my hair. I feel it's coming in pretty quickly. You are so BRAVE to put peroxide in it. Makes me more confident to color when it comes in from Amazon. I looked up the top 10 veg based hair colors and found one that may come from the UK or canada. Not sure but will be here in a couple weeks.
Luvmyys--Upon seeing your lashes, I pulled out my Latisse. I used it ALL THROUGH chemo but really didn;t matter in the end. Been using castor oil which made a huge difference. Hopfull--I'm surprised you haven;t had yours grow back yet since you are so close behind me. I think I got mine in the past 5 weeks. Still using Castor on the brows but they have filled in nicely and just need a little more length to be normal. Same w/ my lashes, I have 1, yes 1, lash that held on and it's funny to see how long it is compared to all the lashes growing in.
MichCali--I started using that spray about a month after PFC. Now that I used product in my hair this weekend, I don;t feel like it's coming out as quickly nor is it as stiff. Maybe it's sticking to the product instead of my hair but it's a good thing. Makes my hair look cleaner on day 3 because usually by day 4 I can't wait to wash it.
GoKale--since I didn't use Acure, I never had build up but I wanted to make sure I washed all the root cover up out so I switched off with the clear Pantene shampoo called Weekly Deep Cleanse purifying shampoo and still conditioning with my conditioner. Maybe that will help.
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pamela23-yes I am so thankful I'm not shedding still. I do get hairs when I comb. But I was so used it just being handfuls. Remember I had four rounds of DD AC first too...so lots more shedding before even starting the whole taxol thing. The DD taxol was worse than AC shed wise..my first DDtaxol treatment was horrid with hot burning hands and feet after...so maybe it was that first one that really killed some hair. Everyone's different and every time we cold capped things changed too. My last cold cap I had such fine hair felt like no hair! my head was getting way more cold contact too! there are a load of random factors here.
But yes so very glad I feel like what's left of my hair is staying.. I really don't know what to do with it. Limp troll....
Hey ...anyone get underarm pain after lymph node removal? I'm afraid my surgeon damaged my Intercostobrachial nerve? Only ten days from surgery. Hot surface nerves! hurts to touch skin and numb like Novocaine from shoulder to elbow on underside. Movement not a problem. Pain is......scared. Seeing the surgeon follow up next Wednesday
I had 2/9 lymph removal. 2 positive. Chemo was a success killed 90% of the cancer found.
Hugs e
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Ladies,
I have been lurking here since my diagnoses, and finally bit the bullet & created an account to contribute to this thread. I am 23, & was diagnosed with stage 2b ovarian cancer in February. I know this is a breast cancer board, but I have been cold capping, & would like to share my insights & hear the insights of others. I'm on weekly taxol, which is frequently used as a BC protocol as well. I hope you all are okay this. While we may have different kinds of cancers, our troubles remain the same.
Just some background- I am on 18 weeks of carboplatin/taxol. So on week 1- carbo/taxol, week 2-taxol week 3- taxol, repeat 6 times. I am currently on round 9/18 so halfway. My doctors say that the carbo doesn't effect hair very much, & its the taxol that is really out for it.I made it until day 51 without a single shed. I really thought I was going to make it. And then BOOM, after I took a shower, it started coming out in strands. Not in clumps, but it was still alarming. Is anyone else on weekly taxol? What have your experiences been? Has it been one big shed that's tapered off?
I tried to share some pictures, but it wouldn't let me post any links. Thank you guys! Salvaging this hair has been so stressful.
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Elastogelgirl - I had 23 lymph nodes removed - 1 positive. I had the surgery 1/20/17 and I still have armpit pain along with numbness along the tricep muscle, and some strange stretching pain on the inside of the arm, and elbow bend (inside of the elbow). I see a physical therapist who has given me daily exercises to do. It's been a very strange experience in that while I made great improvement from January - April, then I had some added soreness/stiffness and now swelling in both arms and both legs (which I am told will go away). My PT said I have to keep the exercises going throughout radiation because rads will tighten things up. Another thing I dealt with was a few instances of stabbing pain and I was told it was nerves repairing themselves or getting their sensation back after being numb.
I had to google intercostobrachial nerve, but according to the pic, I think that is the same area that is numb for me - I called it my tricept.
I thought having a lumpectomy and lymphnode removal was minor, but my PT said this was a big deal. She said that it is going to take more months to fully recover.
Glad you will get your concerns addressed by your surgeon. I highly recommend physical therapy.
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Sherry - of course you're welcome here! I'm so sorry you're dealing with ovarian cancer at such a young age - that's not fair. I'm surprised to hear that carboplatin doesn't have an effect on hair - someone I know had cisplatin and lost all his hair, so I assumed all the "platin" drugs caused hair loss. I had weekly taxol alone, for 12 weeks, and barely lost any hair at all. I did lose hair elsewhere on my body, so the cold caps were very effective on my hair. I never had a big shed at all - just slightly more than normal coming out in the shower; but then, I was only washing twice a week during chemo, and I used to wash almost every day, so it's hard to compare shedding under different circumstances. Despite your strands coming out currently, I am sure you will do well. What brand of caps are you using?
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PatinMN - Thank you for the kind words
. Yes, it has been quite a journey. There's never a good age to be diagnosed with this insidious disease, but being so young definitely comes with its own challenges. Preserving my hair is so important to me because I'm desperate to hang on to my identity.
I'm using Penguin Cold Caps! My doctor said that carboplatin causes "thinning" instead of the full on baldness that is usually seen with taxol. So perhaps it is also contributing to the shedding. I wonder if there was just a bit of user error on my 8th week of capping or if the drugs are just accumulating in my body. It just seems strange to me that I made it so far without any loss. I guess everyone's hair cycles are different too.
I will keep you all apprised on my progress. I'm hoping the shedding calms down after this as I have another half to go. Is there a reason the forum isn't allowing me to post pictures?0 -
gokale-thanks for writing about the arm pain. Wow 1/23 that's a lot of nodes I think. Were you node positive from the start? I was grossly node positive in 2 nodes. We fought the surgeon on massive axillary node removal for lymphadema reasons. Glad we did. My first surgeon want to take 20-30.
Anyhow this nerve thing is a bad surprise. I'm happy to hear you have reduced it to armpit pan numbness with maybe some cording? ..I am scheduled for physical therapy but I have my doubts about this healing up completely. It's really worrisome from what I read.
I guess if I can get it reduced to just numbness I should be happy my armpit doesn't hurt much compared to the searing on my under arm...I will have to do nerve blockers if I can't get it down from where it is now. It's probably super hot because the nerves are trying to recover I'm glad you did make progress!!
from what I read this situation is well known but they don't tell you about it. Sometimes people don't get ride of the pain. They put me on neurotonin(gabapentin) I hate the stuff. It makes me tired, insatiably hungry for sweets and blurry vision. Weight gain is a side effect. It's supposed to help with hot flashes too, not sure it is maybe a little........arrrgh....
Hate surprises!
Hugs e
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sherryowang, first, welcome to the community, and really glad you found us. Second, we just did a trial photo upload, and it worked for us. Are you going to the "Insert image" icon?
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Pamela, yes I'm 6weeks behind you but I really feel those extra 2treatments made a huge difference on the amount of hair and lashes I lost. But I do see them coming back in. The fuzz. And I do have like 3 lashes on each of my top lashes. As for my hair the grey is just crazy. I just cant wait anymore I need to have It dyed just to my natural dark brown color. I'm also having it cutcuz what's left of it is so hideous looking. My hair appointment is Wednesday.
IM on day 4 of viviscal. I pray it works.
Hugs everyone and good luck to those still cold capping.
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Sherryowang- welcome...I want to add that I ask other questions here. It may be annoying to some but this is such a hot topic that it's the only place I'm getting answers about my other issues. I'm betting the cancer centers have no idea how much we actively hate losing any ofour hair. I'm sorry you are losing some hair but I'm sure you will be a cold cap success.
Hugs e
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Are there current cold cap users out there? I had my first chemo of taxotere and cytoxan on April 26. I would love to share tips regarding hair care at home and cold cap usage at chemo time. I'm hoping the next time, May 16, I can use a biomedical freezer at a different oncology location. The dry ice is difficult to find and dangerous to work with. I will probably still buy some dry ice in a cooler to get the caps really cold right before application and to take some home for my continued four hour treatment after chemo. We literally stopped in the parking lot on the way home from the infusion center, set up a chair, and changed the cap at the appropriate time. People were looking at us like we were crazy!
I'm using diluted with water Pureology hydrate shampoo (purple bottle). I put it in a squirt bottle and let it run over my head. I read that you can use very cool water but it doesn't have to be freezing. My hair is very long, mid back, so I use a microfiber towel to absorb the water out of the hair so it's not too too heavy from wetness. I just cannot pull, use chemicals, or heat on hair.
I also use a silk pillowcase which really keeps my hair from getting tangled. I'm surprised how well it works. I'm thinking about getting a silk elastic shower cap type to put on my head to keep it out of my way once in a while. I know it has to be silk so my hair can breathe and it's so gentle to the hair. I would love to hear tips from other people
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GoKale4320 & Pamela23 - Once she can put a few highlights in my mullet I think I'll be able to stop wearing my topper. Thanks for the compliments. I know, when I was sitting under the dryer with the bleach on my hair and all the heat I almost freaked out, but to be honest when I brush my hair now, nothing is coming out.
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Quick question - I have thin, straight, silky hair. If I lost even 25% of my hair, it would look terrible. Anyone with thin hair use cold caps?
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Brneyegrl,
I cold capped successfully in 2015. My pre-chemo hair was very fine, silky, kind of flyaway and I guess you could say thin just because of my hair texture. I had plenty of hair but being so fine, it didn't have lots of volume.
Take heart! I had a big shed after my first chemo and then it continued to shed for almost 3 months post chemo. I lost maybe 30% of my hair, but I never had to use a wig or cover up. I'm kind of digging my post chemo hair because the hair that I lost grew back with lots more volume.
To everyone - Ladies, if your hair is nasty and getting you down, wash it! As long as you wash it gently and don't go ripping at it while it's wet, it should be fine! I just lathered it up carefully, trying to avoid tangling, and rinsed in lukewarm water directly under the sink. I never did anything special like pouring the water over my head instead of directly rinsing. I washed my hair about four times a week and blow dried it, too, and nothing dire happened. You'll feel so much better!
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hi brneyegrl, I have very fine curly hair but would always straighten it . I lost 50% and my hair looks beyond horrible I think I would have had a better result had I had thicker hair. So now I have to cut it pixie short. It was neck length to begin with. But I guess it was better than being bald. And I feel I lost most after my 2nd treatment then after my 5th and 6th treatments
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To the new Cold Cappers,
I have fine, silky hair as well and am cold capping with Penguin cold caps successfully so far. Like Wildflower, I got tired of the thin, gross hair look and decided to risk it and so far nothing terrible has happened. I just rinse it out in tepid water in the shower on a low volume spray. FEELS WONDERFUL afterwards. Gently comb it out and air dry it outside.
4 DD AC completed and lost about 20% of my hair, maybe, it is hard to tell really which is a good thing! I am expecting 50% hair loss with my chemo protocol and plan to do things to cover that up. Toppix for instance. My goal was to preserve the hair follicles for re-growth purposes as AC is so tough on hair. It has been a bonus that not too much has left yet.
Doing #2 of 12 Taxol today and I have noticed the shedding is much less this week. Since AC is supposed to be so hard on hair, I think I did pretty well so far. I am also using Wow Powder to cover the gray that is coming in. I bought Daniel Fields hair coloring for after chemo and plan to do it earlier than Penguin suggests. Living on the wild side a bit but 6 months without coloring is a LONG time and then the waiting period after that added on is just too much. Others have used non-chemical color successfully so I will try as well.
Acure shampoo and conditioner did not cut it for me either - I bought a Target shampoo that is all natural and really like it. It has tea tree oil in it and the whole shower smells great. I think we all have to play around with what works best for us, some people did great with Acure but not me, it was a gooey mess and never felt clean.
Also putting my hair back in a loose pony tail with silky elastic bands that do not pull on my hair. My hair was used to this prior to cold capping and I really like having it out of my face when exercising. I know some other Cold Cappers have done this too.
Hope this helps some of the newer cold cappers out there.
P.S. I am using Essential Eyebrow Solutions for my brows and they still look great. Check out their website for the clinical trial information. 91% of women had 50% of their brows at the end of chemo with this serum. Just a bit of eyebrow touch up with my usual color kit and everything looks normal. Really glad I am using it as I do not look like a chemo patient with hair and brows. Trying to avoid the "pity" looks as much as possible and this helps!
Anne
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Mods- Yes, I get this notification:
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Elastogelgirl- I totally get it. No annoyance here. I think a new question pops into my head every minute of the day
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Hi Ladies,
I am due to start chemotherapy in a few weeks and want to try Cold Capping. I cannot afford the monthly rental Cold Cap programs. I'm looking to buy some used Cold Caps. Do any of you know where I might find some? I've looked on Ebay and never find any there. Amazon no longer sells the Elastogel caps. Any other places I should look? Thanks
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GoKale,
I'm 7 weeks PFC and 1 week post mastectomy (sort of just waking up - it feels like). For hair washing, I use Acure. I clean the bathroom sink and then fill it up with luke warm/cool water. Then I scoop up cups of water and pour it over my hair. Then I bend over and dip my head as low as I can. I pour more water on it. Then I put on shampoo. To get it out. I dunk and pour water from a cup. I change the water probably 3 or 4 times in the sink so I am always rinsing with clear water. Sometimes I just pour it directly from the tap. This gets most of the shampoo out of me. I gave up up the conditioner, as I just could not get that stuff out. I use a kids detangler to help me out. Probably not approved by cold capping, but it helps with the combing.
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IrishLuck
http://www.rapunzelproject.org/coldcaps.aspx
There are places that give grants. I think this is one. But maybe google around for grants for cold capping for individuals. I heard about grants on a blog post I read a long time ago, but don't remember where I saw the blog. It may be on breastcancer.org in this forum.. or at least a link.
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Thanks Hanging in there! I will check them out, but I'm really hoping to buy some used Elastogel caps. If anyone is finished with theirs and is interested in selling them please let me know.
On the subject of icing: I'm wondering about using a cold eye mask to help reduce loss of eyelashes and eyebrows during tx. I know it would not be that cold like the caps, but I wonder if I used it on the day of chemotherapy if it might help prevent loss? Anyone tried this or have thoughts on it? Thanks
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Hello Irish luck , I have 4 elastogel caps and four sets of hand and feet mitts. I'm done with my Chemo. I sent you a private message.
I named myself elastogelgirl but it's just because it's the type if cap I used. I'm just another gal who did not want to lose my hair in this fight.
Anyhow I wish you the best of luck with whatever cap you end up with.
Hugs e
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