Cold Caps Users Past and Present, to Save Hair
Comments
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mfm48 - I trimmed my long hair myself several times during chemo as it was getting raggedy looking. I only took off the amount that I could see I had grown, judging by my roots, so about 1/2" each time. It made a big difference. I think it's fine to trim as long as only a small amount, not inches, is cut.
Michelle - You sound like you are doing well. I am so glad for you. You went through a lot and I felt so sorry that the caps did not work for you. My oncologist, who had had over 50 women use cold caps so far, told me that in her experience T/C users have a much better success rate than those who are given ACT as it is so much harsher. I hope you feeling stronger and back to your old self again.
Congrats to those who have stopped shedding. It is such a milestone! I am a year and a quarter past my last chemo and my hair is thick and healthy looking. One thing I have noticed is that I lose more hair shampooing when I rinse with hot water than if I use cooler water, so I have switched back to rinsing in coolish temperatures. I have heard that Arimidex, which I am on, can cause hair to thin, so I plan to keep on using cool rinses. I think it encourages the scalp to tighten up which holds on to the hair more, so less comes out.0 -
Hortense, I too am on arimidex. Since finishing chemo in Jan my hair loss spots have regrown 4 inches or so and beginning to feel fullness again in the back of my head and the sides. Still not normal thick head of hair but definitely more that I would have w/o cold caps. Forever grateful for words of wisdom of those that went before us.....take care all. Hope at the end. I had my chemo port removed today after finishing chemo in Jan. So glad to see that go. As I sat alone in preop waiting for them to get me I started tearing up thinking I had come so far. I worried that the anasthetics were goig to make my emotionality worse as I usually cry after taking them. All was OK. Great set of nurses and doctors and all applauding me for what I had gone through and congratulating me on moving forwards. I love Memorial Hermann in the Woodlands.....very supportive people every time I have been there (3 times this past year) Take care all.0 -
Did you use Penguin or those other fake caps?0 -
i used penguin cold caps but got lucky and shared them with a lady 10 min. From me and saved some money. It added a month Cruz she started later but the last month was cheaper and we split it all in half.0 -
I used what you are apparently calling those Fake Caps and kept my hair. Final chemo was 8/13 and I quit shedding a few weeks ago and have already colored, had a haircut and take a real shower using regular products.
Happy Weekend Ladies!
Shipsgirl, I know that Salon time felt great!!0 -
Fake caps...Really??? There are Penguin caps and there are Elastogel caps, they are manufactured by different companies. There is no 'fake'. Whattodonow's post is obvious in demonstrating the lack of professional representatives working for the Penguin company...0 -
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Hello fellow cappers!
I've been traveling a lot for work so just checking in when I can to keep up with everyone...so wonderful to hear your successes and support for others who struggled with the process. Last week, I went to my salon for the first time in a year for a cut color and highlights...HAPPY DAY!!! I must say I held my breath when she took the foils out and rinsed hoping my hair would survive, and it all turned out great. I can't believe how much thicker it made my hair and my stylist said there is a ton of new growth all over (which I can see poking out everywhere). I will try to post a new picture soon.
Keep the faith ladies, we are pioneers and someday when the dignicap is standard protocol we'll have a good laugh at the days we spent with basically blocks of ice on our heads
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"Blocks of ice", good description They sure were cold, but well worth it to keep our hair. People ask me if they were cold (duh!) and I always tell them they were colder than they could even imagine.0 -
Hi there everyone, just checking in and catching up. I've had a pretty rough go of it during rads but I am almost done! Shipsgirl seems like we're on a mirror schedule again. I cut and colored about 3 mos. PFC. And it feels great. I found an all organic salon and cut it really short. It doesn't look like my normal thick hair but it's coming in quite nicely. I stopped shedding about 9 weeks PFC and I never had any real bald patches. Tmb your pics look TERRIFIC!!! Schoolmom what a relief - congratulations:)
Newbies and sorta newbies hang in there - sending you positive vibes...
Kay0 -
Kay -thanks for the encouragement. I start rads in December. I thought fatigue was the major SE. Why was it so rough if you don't mind my asking?0 -
I haven't been on here in a while, but good to see my "capping class" doing well (tmb, Kay, shipsgirl). Awesome!! I may have been lucky but had a pretty easy time with chemo and radiation. Like mdg, I exercised daily and believe that helped me.
My oncologist is now referring women to me, as is my surgeon. I love how much that has changed since I started chemo in April and had to be the one to bring it up. I'm forever grateful to have kept most of my hair. I finished in June and now have around 2 inches of regrowth over my ears (I have sideburns!) and my neck. You'd never have guessed at any point I was undergoing chemo.
Those who helped me though--thank you!!! Those starting out, keep the faith and best of luck!0 -
mfm - i made sure to eat really well and make super-smoothies throughout radiation and i really think that helped me stave off the major fatigue for several weeks. i didn't get really droopy until around the end of week four. and around that time i got some wicked skin-breakdown right in my arm pit. just a really annoying place to have an open wound. i also got some real intense soreness just below my breast in the rib cage area. the techs suggested that maybe that's because i didn't have a lot of cushion in the area. the topical silvadine (sp?) they gave me is doing wonders in helping me heal though - i also credit all the water i've been drinking throughout.
hey there suzie q - glad you're doing well and sharing your hard earned expertise!0 -
Hello All! I'm still using the Dignicaps and after 3 treatments, I STILL HAVE HAIR :-). I had a ton of shedding between cycles 1 and 2 and then it slowed. I just had cycle 3 on Oct. 29th. My final cycle is Nov. 19th. Since I'm in a trial, they have to take pics of my hair before each cycle then I have to access the amount of thinning I've had. So far, my docs and I think I've had about 30% loss. Most of my thinning has happened at the top of my head, I think it's the way my head is shaped (I have a small indention on the very top and maybe the cap doesn't reach that part?!?!) To all knew cappers: There are times you think it isn't working, but hang in there. It is worth it!!
On another note:
-I'm on TC and I've gained some unwanted lbs. I workout regularly, before chemo I ran 3-5 miles four times per week. I'm still trying to workout but it's not as intense as it used to be, because I get tired easily. Any tips or feedback on keeping your weight controlled?
-Another ?: How long do they wait between final chemo before rads start? I'm scheduled to have 30 rads after chemo.
Have a great day,
MC0 -
mc_in_nc - I had to wait about a month and a half before starting radiation. I am about to go for my one year radiation check up in a few minutes. Time has flown by.
I have always been active and slim, but I also gained weight during and after chemo and went sort of shapeless, which didn't make me happy. I had no waist for the first time in my life, except for when I was pregnant My doctor told me it was from "chemo-deconditioning", meaning because I didn't do much during chemo I lost my normal condition.
I slowly began exercising, ate well, avoided sugary baked goods, crackers and excess amounts of breads (I love bread) and started using the MyFitnessPal free phone app to keep track of what I was eating and help me be aware of portion sizes. I set a calorie goal of 1200, but made sure I ate a lot of protein, fruit and veggies - huge salads filled me up for lunch. I slowly lost 12 lbs. and began to look and feel much better.
My losing weight inspired my husband to follow suit and he has also lost his excess weight and looks much better - no more muffin top!0 -
MC - Congratulations! Doesn't it feel so great to have your own hair and identity through all this craziness! I have my 4th and last TC next Thursday. I also shed alot after the 1st and then not so much since then. No one who knows me knows what I'm going through. They just think I stopped coloring my hair. As for weight gain, I feel like I put on a few pounds but I am not worrying about it. I cannot do my regular workout routine because I sweat like crazy from the head and I don't want that to be the reason why my hair starts to fall out. I tried a couple of times but got too scared so that's that. I am confident I will be able to lose it when all these treatments are over. Hortense gives us inspiration!
Anyone have a "super smoothie" recipe they love? My mom just got me a Ninja smoothier maker. Thanks!0 -
Here is a smoothie recipe you can try. We make these almost every morning before work. We have the Cuisinart version where you make the smoothie right in the cup, add a straw and off you go!
Add ingredients to the cup in this order:
1/3 banana, frozen (we buy them slice into thirds, put in a zip lock bag, and freeze)
2-3 large (or 5-6 small) frozen strawberries
Frozen blueberries
Fresh spinach leaves (you cannot taste them at all and theyr'e so good for you!)
Scoop of organic plain yogurt
Chia seed
Flax seed
We also add an antioxidant powder made for smoothies
After all ingredients are in, add orange juice until it reaches around 3/4 of the cup0 -
Hi Ladies,
I am on day 17 after first TC treatment. No hair loss at all.... Should I be seeing it by now, or is hair loss more common between 2nd and 3rd treatment. Could cold caps be the reason, or just not time to lose hair yet?0 -
Marley-Hair loss can occur anytime following14 days of the first chemo treatment. Shedding is a very individual experience. Some shed consistently little over the duration of treatment. Some shed most a couple of days before and after their 2nd treatment. This is the result of treatment 1, not a combination of 1 & 2.0 -
Thanks makingway, I'm afraid i have become obsessed with checking my hair0 -
marley2 - It is very normal to be obsessed about hair during chemo while using cold caps. Every one of us were and many of us checked in here constantly for reassurance. For me, shedding began about the 22nd day, although I started seeing hairs beginning to slide out a few days before that. I shed evenly from all over my head. No areas became discernibly thinner.
I worried and fretted that I would lose all of my hair until somewhere between my 2nd and 3rd treatments I realized that I was way past the point that women who did not use cold caps lost all of their hair, and I remembered - by googling - that all of us have over 100,000 hairs on our heads which put my shedding into perspective.
In the end, I probably lost about 30 -35% of the overall volume of my hair, but most people would never have guessed. The hairs I lost were most likely the oldest hairs and therefore most vulnerable to residual chemo hitting them. Their follicles seemed to have rested their normal cycles, which is about 3 months I believe, before starting to regrow.
I started seeing new hairs about two months after my final chemo - just when I was becoming concerned that they might never grow back. No matter how much I had tried to look for signs of regrowth, I couldn't see them until they were about 1/2 an inch long as that first half inch was more slender and almost colorless, making them hard to spot. They quickly filled in between my other hairs and soon the ones on top were standing up like cowlicks causing me to have to wet them and comb them down until they grew long enough to stay over on their own. It was such a nice problem to have after all my worrying:)
Good luck!0 -
Hi Girls- it is great to see everyone doing so well. I am bumping this up for spoomsister who was, unfortunately, just diagnosed and was wondering what the caps are all about.
Spoomsis these girls are the best ever- I owe them SO much, for all of the advice and encouragement when I was going through chemo. I started my journey here this time last year.
I hope you won't have to have chemo, hopefully just lumpectomy and rads, but if you do- it is really good to know that the caps are an option.
Hugs to all
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Marley - I shed the most after the first treatment. Not much at all btw 2nd and 3rd and barely any after the 3rd. Although I did notice hair loss around my left temple. It is much thinner there. That may be because the caps don't get as tight there. Something to remember when you are using the caps - use the velcro bands to get the caps really tight around the hairline. My last treatment is this Thursday. No one would know - and no one does know that I haven't chosen to tell - that I am going through chemo.
Another tip that someone gave me on this board - my first hair washings didn't go so well - I was terrified, didn't get the soap out of my hair, ended up with dandruff or something. And my hair didn't even look clean. Anyway, I got two squeeze ketchup bottles and I put the shampoo with water in one, and clean water in the other It allows me to get the shampoo directly to the scalp and rinse really gently. Also a leave in conditioner was a must for me.
Sounds to me like you are doing great! Keep it up! I am so thrilled that I decided to use the caps. They have really helped me hold onto my normalcy.0 -
Thanks a bunch ScienceGal! I've been reading so much on this thread! Lots of great info. I should find out tomorrow what my treatment plan is going to be. Fingers crossed!0 -
Hi Spoomsis- GOOD LUCK!!! Did they tell you yet if the cancer is Her2+, or what the phenotype is, or is that tomorrow?
Fingers crossed for you. I am glad you found this site early, we are trying hard to spread the word that there are options!
Sadly most doctors remain skeptical about the caps, they likely will not even mention it.
Hugs
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I should find all that stuff out tomorrow. I'm so freaking nervous!!!!!!0 -
Once you know the plan of attack you will feel better. Try to do something today to take your mind off of it- it will be here before you know it.
Remember to take a notebook to the appointment and maybe someone else you trust, to help you understand and follow- they talk fast!
GOOD LUCK!!!
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Hello my dearest cold-cappers,
I am not a very active contributor but needed to share an amazing experience I had last week. During an appointment with my oncologist, he said, "you have the best wig I have ever seen". My husband and I looked at each other wondering if the Dr. was joking because we had told him I was using cold caps but the Dr. went on to say, "you are truly in disguise, that wig is amazing". When I told him it was my own hair and he was reminded of the caps, he said he was "astounded".
I just finished cycle 3 of 4 TC with the last one scheduled Nov. 26th. I have told my immediate co-workers but otherwise no one knows...not even my family, and I credit cold caps with being able to conduct my life normally and fight this disease privately, on my terms. My hair has thinned around my ears, temples and nape but I estimate I still have 70% of my hair. I continue to shed lightly which is bothersome but in the grand scheme of things, a small irritance. As my grey becomes more prevalent and the volume of my hair dwindles, I am itching to get a trim but am also scared. From reading the threads, it looks like there is a large variation of when people stop shedding. Do you think once the shedding stops, I could have a gentle trim? I would really like to look fresh for the holiday season.
All my support and best wishes to my fellow cold-cappers!!0 -
2lovelybs - I trimmed several times during chemo without a problem. I only took off about 1/2" each time, but it made a big difference.
A few days ago I went back to where I had had radiation for my 1 year check up. Both my doctor and my nurse were amazed at my hair. While they seemed uninterested last year when I told them I had used cold caps, this year they were riveted.
You never know …
Congratulations on your success!0 -
Congratulations 2lovely!!
If you just need to cover grey roots there is colormark- kind of like mascara for the hair. I used blonde toppik fibers to fill in where my part was slightly wider during capping and, like you, no one suspected!! Nice job.
I am glad your doc was impressed. Mine s as well but still i dont think they tell people it is an option, because the capping can sometimes delay the infusion schedules and each of those chairs makes a lot of money for the hospital every half hour.
To new girls (or guys) considering capping, make sure your doc and the head nurse at the infusion center know your plans. it is necessary to have everyone on board. you might be able to get a private room for chemo.
I sure hope more places will come on board and make this option part of the routine soon, like thoe who are offering the trials!
Happy Tuesday to all!
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