Cold Caps Users Past and Present, to Save Hair
Comments
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Hopfull2...your hair looks great - thanks for sharing. So encouraging for those of us that are still losing hair to see that growth!
Elberama, I am on the same regiment and our hair loss pattern looks very similar. I think my fine hair texture and blonde color make mine look much thinner than yours. Your hair is beautiful, and the topikk looks like it's giving you great coverage.
ykh...I'm on that regiment too and also had Taxol #7 today. My shedding got much worse once I switched from AC to Taxol and it has not slowed down yet. I'm glad to hear that yours has, and MJPow had the same experience, so I'm hoping maybe this week mine will slow. I'm definitely continuing the cold cap now just for re-growth purposes. If your white blood cell count continues to trend down, ask your MO about the neupogen shots. Mine put me on them last week because my WBC was trending downward and she didn't want me to miss a treatment. My hubby has to do the injections at home, one on Fri, one on Sat, and one on Sunday after each Thursday chemo treatment. They're working though...my WBC was in the normal range today! Good luck - we're almost done!
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thanks , although I do feel that me being on tamoxifen is slowing my hair growth. I've been on since end of march. In April or may I started noticing my leg hairs and under arm hair grow. I'd have to shave every couple days. The last 2weeks I noticed I'm not growing as much hair on my legs or under arms. So as of yesterday I stopped shaving so I can write it down on a calendar. My legs do feel prickly but nothing to have me shave. So we will see. So frustrating as if chemo doesn't do enough now this darn tamoxifen
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TravelGirl, I'm so sorry you're having to go through this again! I am using Dignicap but my regimen is different (AC/Taxol) so not sure we can compare. My hair did well through the AC and the first few Taxols but over the last 3 or 4 weeks I've lost a lot. I'm probably over 50% loss now and I have 5 more treatments to go. I would technically deem my experience a "failure"...but I'm continuing just to keep what I do have and help regrowth be faster. So, for me it's at least worth that. I've been wearing a wig for 2 weeks now which I had hoped to not have to do. You may have better results so I encourage you to try it. I think you just have to know there's a possibility it could not work like you hope and that you will be ok with that. I wanted to save as much hair as I could so I'm still glad I did it. I'm happy to answer any questions you might have about the dignicap itself. Good luck to you!
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I LOVE, LOVE, LOVE my new hair piece. It makes me look like I did before I was diagnosed. I don't ever want to take it off but apparently you can't sleep in it. I actually think I will only use it for social occasions so I don't get depressed about my real hair but for a few hours today, I felt like my old self (except without taste buds).
here's some photos of before and after.
then with Halo piece:
Side views before/after:
So the top is my actual hair. I can't believe how close of a match we got to it!! I miss my hair so much and feel so blessed I got to keep what i did even if it's getting thinner every month.
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Travelgirl i was thinking to use dignicap because it looks easier than penguin but what made me decide for penguin is because the temperatures they said are -4 in compare with penguin -28 so i thought the coldest the better and i am of my 4 chemo and although i lost alot of hair at my sides i still have a lot of hair and nobody notice yet anything.
Good luck!
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Wow Pamela it looks amazing. I will buy it right away. So did you buy it directly through the website hidden crown.com or you went to a store. Could you please write me exactly how did you order it.
I will really appreciate that.
Thanks.
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Pamela, I love your hair. Omg. Love it. I picked up my clip ins and put them on but I can feel the clips all over my head and just didn't feel comfortable. If I'm not mistaken I think the place I got them from do halos as well. I'm gonna call tomm to see if the can take the clips off the hair and make a halo. I really love your hair. I get what u mean about feeling a bit more normal, this Saturday i was supposed to have a girls night out have dinner and drinks at a trendy upscale restaurant but I'm gonna pass, I don't feel comfortable wearing my natural hair, my clip ins we feel uncomfortable and the wig I have makes my head hot. Thumbs up on the halo
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I went to private, by appointment wig place. The owner is a beautician whose mother went through chemo so ended up getting into selling wigs, toppers, hair coverings, etc and also styles women's hair who have alopecia or chemo related hair problems and don't feel comfortable in regular salons. The brand is called Hidden Crown. https://www.hiddencrownhair.com/?gclid=EAIaIQobChM...
She matched my hair color from a ring of swatches and I ordered the 12" version (also came in 16"). Today she put it on me, tightened the string and cut the string that fit over the top of my head, then flat ironed it and cut in the sides to blend with my real sides. It cost around $300 with tax. I have a small hanger and bag to store it in with extra clips and string if I ever have a problem with it as well as care/wash instruction. I would definitely recommend finding a shop that has the samples. She wanted to match it with the top of my hair but my ends are always a bit lighter so we went a shade lighter and it was perfect! It'd be hard to see that difference online.
So I can wash and heat it, not sure what material it is. I tried to attach a video of me taking it off but it won't let me. Is there a way to do that? If I press insert video, it asks for a URL link.
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I am going to shop around to a wig store to see if they have something similar. I hate been all the time in a pony tail and thinking the bald spots of my sides. That looks so natural and it is not a full wig. I will let you know. Thank you. ! I had my fourth chemo last Wednesday and i feel very good. No side effects yet. I hope it stays like this. I am expecting the bone pain as they said but they gave me tylenol 3 with codeine. So i hope i am going to be fine. 🙏
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Sox Fan thanks so much for giving me an idea when this might happen. Even if I do lose a lot I am going to continue using my caps because my cousins hair never came back. I figured this might help. Oh what a journey! So glad your chemo is over, I can't wait! Two down and four to go.
Thanks,
Monica
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Fastgirl - yes, it is scary - Every 6 month scans - don't miss them! Is all I can say, early detection is all we have. My oncologist just said it was really bad luck. It was a second breast cancer (diff receptors), not a recurrence of the first. Stage 1 - REPEAT - early detection is critical. Please keep up on it even after 11+ years.
Thanks everyone -- for the response on Dignicaps - I cant' seem to find much info on the board on it specifically. If only they would let us make them colder! Or maybe the duration that you keep them on after chemo - with the other caps, you can leave the infusion center and you probably keep them on longer. I get, there is no known science behind it -- just a bummer.
Pamela - love the topper - thanks for sharing. I know you can't stand your hair, it really does look good either way. I only hope to fair so well.
SoniaL - thanks for sharing your experience -- I am going to use it either way - cause the regimen I am on has potential for perm hair loss. Question for you - How long did have the cap on post the end of the infusion? I emailed the Repunzel project and they quickly answered (warmed my heart) and said to keep it on as long as possible. I think they told me 3 hours, I am going to push for 4 hours.
Mquara - first congrats on 11 weeks post PFC - second the mullet comment made me laugh - what else can we do? Thanks for sharing your experience.
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TravelGirl...the post cooling time varies based on the drug you are receiving. For my 4 AC treatments, I had 3 hours post cooling. It was miserable, made for such a long day and just be prepared that the cap is very uncomfortable. For my 12 Taxol treatments, the post cooling time was reduced to an hour and a half. The Dignicap literature that your chemo nurses have provides them the cooling times. I suppose if you asked to stay on longer, they would allow that. Hope it all goes well!
Pamela23...you look great, love the halo extension! I would have liked that option, but so much of my hair loss has been on top of my head so I had to cover that.
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Travel girl, i am also capping with taxotere/cytoxan, 4 rounds spaced 3 weeks apart. Penguin asks for info about your chemo meds, dosages, infusion time for each, hair characteristics (curly/wavy/straight, color, quantity, etc) , then emails with your personalized target cap temperature and post-chemo capping time. I cap for 50 minutes before the chemo is started, during chemo (1 hour for each med), and then 4 hours afterwards, so 7 hours total. I had chemo #2 today, and have not had significant hair loss yet (knock on wood that continues!). I am guessing that the half life of the drugs is one of the big factors for post capping time (i didnt know my dosages when I registered and paid, so they sent me a preliminary capping schedule. When i emailed exact dosages, the schedule stayed the same).
I am happy to share my specifics if you think that would help you estimate for dignicap use - just let me know.
Dignicap must have good results because my MO said they will be adding it to the infusion center in the future, along with gel mits/booties, but I hope never to make use of them!
My heart goes out to you as you deal with another BC diagnosis, maybe at a point when you were far enough down the road that it was less on your mind.
Penguin does say that there is generally less success keeping hair if you've been treated with chemo before. Like you, my main reason to cap is preventing permanent bald spots or complete baldness, with keeping my hair as an amazing perk if its successful.
Hugs to you, and let me know if you'd like more details!
Willow
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Hi All, I'm new to writing in this group but have been reading for quite some time. Thank you all so much for sharing your journeys. It's so nice to hear and see people's honest results. I've had 2 TCHP infusions so far and would say I've already lost about 30% of my hair. Most of it came out in 2 major sheds. So scary and emotional!!Since the last major shed which was 5 days after 2nd chemo the shedding has been manageable though if it continues every time I wash which is 2x a week there def won't be much left by the end.
For those using Penquin CC, can you please tell me what the gel straps are for?
Thanks!
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Travel girl,
I don't think dignicaps have to be as cold as the ones on dry ice, since the machine is keeping the cap at a constant temp like a freezer. The ones on dry ice are more like coolers... they start out really cold but warm up when taken off the ice and placed on your head. I had extra dry ice so I tested temps this morning.. my penguin cap was minus 28' Celsius when I first put it on, minus 8.5' C at 10 minutes and minus 3.2'C at 20 minutes. Granted, taking it off midway didn't help the temp, but they are noticeably warmer when I take them off than when they go on.
It would be wonderful not to do the constant cap changes... I would've happily napped thru my infusions yesterday without the disruptions!
Willow
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Welcome babasmom! The gel bands are if you need extra coverage on your forehead or back of the head....I have such a pin head that the cap covers it really well, but someone with a larger head might need extra coverage.
Willow
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Thanks for the reply Willow! I'm pretty sure that's the case with me as I don't remember having any issues with fit but I have trouble remembering my own name sometimes these days! I keep my caps at my in-laws in their extra freezer so I cant try one one on right now anyway. I'll make any necessary changes on Thursday during my next session. I know I definitely need to make and keep the caps tighter. And also pay attention to pushing down on cap all over. Have some big bald patches going on.
Hope everyone is enjoying their weekend.
Off to do yoga with a fabulous local support group
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babasmom, there's definitely a learning curve to getting these fitted the right way! We use one of the black Velcro straps to make sure the cap is firmly against the back of my head and it also snugs it up nicely against the sides. If needed, the 2nd Velcro strap could go under my chin and onto the top of my head to keep it firmly on my crown, but so far that hasn't been needed.
My hubby sets his phone timer for when to take the next cap out, and I set my timer for 10 min intervals to knead the gel so that it redistributes the colder parts with the gel areas that I've warmed more (at least that's what I assume the kneading does).
Willow
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Hi everyone I took a little break after I finished chemo on July 27. I needed a little mental break from the whole chemo cancer thing.
I am so thankful to be done. I went to my radiation appointment and all of the nurses cannot believe that I had hair. In fact a few of them thought I did not have chemo at all and was just doing radiation. This was so great to hear because I did lose a lot of hair on ACT chemo . I probably lost at least 80% but the other new hair was growing in about Taxol six or seven.
Like a lot of you on here I don't like to look at old pictures where my hair is really long I am just trying to embrace the new me which sometimes it's hard. I gained weight and Taxol and have started a low-carb diet with exercise hoping to get some of my weight off.
I probably have 3 inches of new growth in the back on one of my sides of my head I think the cap did not touch and a lot came off on that side so my right side has some length to it makes for an interesting look. I'll pull the little bit of hair that I have that is still long into a bun on my head and that's basically how I wear it every day .
Pamela I love your halo topper I might have to look into that. I think I will be impatient with how quickly my hair will grow out. I miss styling my hair but I am so thankful to have what I do. I have been on multiple cancer boards and people that did not cold cap are almost completely bald so I am way ahead of the game .
I can't remember whoposted pictures six months after chemo with curly hair but that gives me hope .
When I get time I am going to post pictures throughout my experience I just have to go through them and get it done. I begin radiation on August 30.
You ladies are awesome!! Stay strong
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Pamela-----That looks beautiful!!! Is it comfortable? I am such a no fuss girl that I had hair extensions placed on Saturday and I have pulled all of them out as of today. Those really bothered me. The tape pulled on my existing hair irritating my scalp. Also, the extra hair made me feel even warmer during hot flashes. Thinking the halo would be a better choice as it is removable. Or maybe it is best for me to leave my head alone lol
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For those of you that are finished with chemo, how many weeks did you wait to use a flat iron or other heat devices? I have naturally wavy hair, but the clip in hair extensions I have are straight so unless I straighten my hair, they'll look weird. I've been using a flat iron on my bang section all throughout chemo, although not every day (more like once or twice a week), and haven't had any issues. My bangs seem a lot stronger than the rest of my hair though, so I'm afraid to try it. I'm 7 weeks PFC btw.
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Here is my hair 3 weeks post chemo... sou can see my little ponytail not much of my original hair but tons has come in!
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MJPow - My hair is very close to yours. Only difference is my pony tail hairline starts right at back of my head, i was totally bald on top and I have one very small clump of hair left in the front top, basically my widow's peak, that I can pull back. My hair has grown in about 3/4" so my scalp is covered but my ponytail is so small I had to switch to really small fabric elastics that would NEVER have fit around my regular ponytail even once. I have to wrap it three times to get it to stay. I'll try and take a picture tomorrow when my hair is clean. I am thankful for what I have but it's depressing and still a hot mess so I often go back and forth between leaving it and just getting it all buzzed/cut to be even. My hair is sticking out all over when it's up but I can't wear it down as I look like a freak
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soxfan, I started putting my hair up in a tiny butterfly clip at about 3 months PFC. I started wearing it in a small pony tail at about 4 months PFC. I too only straighten my bangs and started doing that at about 4months PFC. My hair is also wavy so I started putting mousse in it at about 5 months PFC. I too used to straighten my hair ever before chemo. But I'm waiting for it to grow cuz I feel it will look too thin i I straighten now.
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Starting my cold cap and 1st chemo tomorrow - I am going to have to 'beg' the infusion center nurses to let me stay longer than 2 hours - protocol from Dignicap (per Oncology Nurse) for my cocktail/TC is 2 hours - Repunzil project says they believe longer is better -- so I am going to have to work on getting it extended for me tomorrow. Telling myself to be sweet yet forceful on the request. Ohhmmmm. PJPow -- thanks for sharing the picture - an inspiration!
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Travel Girl, I would be as sweet as pie, and just act like they should know you should be there for the extra time. If that is a problem, then still be nice but stand your ground! I felt I had to do this with my whole journey, not just cold capping, I didn't ask permission I told them I was doing it, also with my double mastectomy too, the breast surgeon was taken back when I told him I wanted the healthy breast off too. I more or less said this is my right and my decision. He mentioned something about only an extra 1 percent survival rate and I said to him one percent is one percent and this is my body. Also, why would they offer the machines knowing you need extra time, you could bring that up too. Good Luck! Virtual Hugs.
MJPOW looking good! You give me inspiration
just finished 2nd round of TCHP last week, very little shedding but waiting for the "shoe to drop". 0 -
MJpow, your hair look great! Have you started taking Viviscal or other hair supplements?
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I am using a hair growth shampoo and conditioner that got good reviews. It's ultra labs hair surge. I also am taking a hair nails with bioten that I got from Costco. I had my hair colored yesterday because I really don't have that much original hair to lose and looking at myself was hard with such dark hair and all different lengths. She cut my old hair to my shoulders which is about where my new hair has grown to in the back if I straighten it.
I totally get being depressed about not having our old hair but if you search the chemo boards people post pics 10 weeks after finishing chemo and they have a couple millimeters of hair. That's what made me feel blessed. We are so far ahead it might not be where we thought or what we wanted but I remind myself where I would be without cold capping!!
I feel better every day chemo is awful but there is an end!! Hang on and stay strong 💪🏻
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MJPow, you look great! You are an inspiration. So happy to see all that hair you have. I'm finally seeing a little regrowth on top of my head. I had treatment #12 of 16 today so I'm close to being done.
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TravelGirl, hope your first chemo went well today. How was the DigniCap? Hope the nurses were good to you and let you do the longer cooling time. I've been so fortunate. My nurses are the sweetest, most compassionate people I've ever met. They never complain about dealing with the cap, unhooking it to let me use the ladies' room, etc. I hope yours were good to you today. Good luck!
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