Cold Caps Users Past and Present, to Save Hair
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Throughout this journey, I never mentioned what I was going through on Facebook. My family and my community knew about it but never really knew how to put it 'out there'. On Monday when I finished rads, I decided to address it to my FB world. Thought I'd share because I think most of you will relate to what I wrote. This is what I posted:
How many times have you had the opportunity to say you are proud of yourself? I mean REALLY proud, like "you are AMAZING" proud? Well that's how I feel today after finishing my LAST breast cancer treatment. I have spent the past 6 months enduring surgery, chemotherapy and radiation. I ventured on this journey helpless and scared. Now I've come through on the other side ready to kick some ass. I've learned so much along the way--who my support system is, how amazing my community is, how sometimes the people we expect to be there aren't, and the people you wouldn't expect show up at just the right time to lift your spirit. I am a better person than I was before this adventure. I am a more empathetic person, I have learned to openly share how I feel and show my appreciation more easily, I have also learned that sometimes the smallest gestures can make the biggest difference and I've been paying it forward. I have learned to be patient with myself as I'm still trying to trust my body that betrayed me. I am more grateful for the mundane things in life, I am thankful for what I have and know that somewhere someone else has it much worse than I do. Most of all, I have learned what I'm made of. I am strong, I am a fighter and after what I endured, I'm feeling pretty badass!!
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Pamela, congrats on finishing rads. You are a bad ass, your post made me cry. Every word you said is so true. Our body's did betray us. How do we trust again. This journey has made us all so strong. Guess we don't know what we can really handle right until we are put to the test. Anyway. Congrats on finishing all treatment. I wish I can say the same. I still have a couple surgeries left but I finally see the light
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Pamela23--AMEN! And, congratulations for finishing all the treatments. Thanks for your openness and sharing with all of us during this journey.
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Pamela...loved your post. I, too, have kept this off facebook. I live in a small town and have taken to wearing hats with my scraggly hair sticking out of the back. One woman said to me yesterday "I see you are now sporting the busy mom look". Yeah, I guess you could call it that. I have many of your same feelings...betrayal, wanting to pay it forward ( I never knew how much a meal sent to the house would mean to me), utter surprise of those who I thought would be there that can't even look at me and those I never considered would step up who have done so consistently...and finally that thought that somewhere there is someone that has it way worse than I do. You ARE a bad ass and after my last two round of chemo and 35 rounds of rads, I will be too. Much love to you.
Mquara - Pamela is right. The first shed is coming and for me it was the biggest one so far. I am two days away from my third round and my worst shed was in the shower 16 days after round 1. Loads of hair came out, enough to fill a gallon size zip lock freezer bag. A mistake I made that I hope you avoid...please gently comb your hair BEFORE you wash it. I washed it without combing and the loose hair bunched up around the bottom and knotted up so bad that nothing but scissors could rescue me - not even corn starch. I was crying and walking around the house looking for scissors soaking wet. I have kept a lot of hair around the perimeter of my head like bangs, around ears and low in the back around neck. I have lost more than half my hair so far and much of it was from the top where I think the dignicap didn't fit my head well...but the woman next to me lost nothing on top. I guess my head is odd shaped! While i have no true bald spots, you can see my entire scalp on the top of my head and the back.
I comb my hair in the morning and at night...wash once a week right now. I use a biotin organic shampoo mostly but also have the Acure.
My hope is for normal shedding from here on out and then new growth to cover the scalp to make me look somewhat normal within a couple of months. I never thought I would be looking forward to a raging mullet...but I am.
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Pamela I'm so proud of you!! Congrats on finishing treatment thank you for all your support ❤️
I have been on nausea meds before they start the IV premeds and this time they hydrated me after. Not sure if the cold caps are creating more nausea. Still trying to figure out what will work for me.
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Pamela - Congratulations! You are badass. Thank you for sharing and yes, you are spot on for me too on what going through this experience has taught me.
Mjpow - Sorry about your nausea. Are you taking any Ativan to help with nerves? It also helps with nausea. Talk with your doctor if you haven't already. They may have some other options. Hope it gets resolved.
Lowcountry - Sorry about the big shed. Hope it slows. Wash days are always stressful... sending positive hair vibes.
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Pamela - Fantastic news about finishing radiation!! Love your post, and I, too, have been pondering what I will put on facebook when I'm done.
MJPow - I take steroids that are prescribed one day before chemo, day of, and day after. I was told that it was to help with nausea.
Hanging In - thanks for the information about headcovers. I will certainly stay away from that site.
Mquara - I use cornstarch on my hair everyday to make my hair tolerable for work. I seldom comb my hair - I just cannot bear to see so much come out. Instead I use my finger to gently lift my hair or arrange it on my head to cover the very thin areas.
Question: I'm on Taxotere and Cytoxin - 4 rounds, 3 weeks apart. I see now that I can expect my hair to shed for a long time to come, but when can I expect my hair to start to grow in the balding areas? How many weeks PFC?
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GoKale: I also had 4 rounds of T/C. I am 2 weeks PFC and I have little hairs on some of my thinning areas. My hair actually grew slowly the whole time. I washed my hair every three days and just used dry shampoo in between. I didn't wet it in between. I probably combed and brushed more than I should have.
Mjpow. I took steroids like GoKale. I also took Zofran the day of and for two days after. I never had nausea. I hope you figure out something that works.
Pamela, Congrats and I loved your FB post. I haven't posted anything because I'm pretty private. My close friends and family know and have been amazing!
As far as the color....so far, so good. It doesn't seem like it has increased my shedding. I can tell it's going to show my grey much faster than I want it to thought. Only a permanent color really sticks to my grey. I just try not to wash too often.
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Catgirl - thanks for the info. I can't say that my hair has continued to grow since chemo started, but I hope my hair comes back as quickly as yours has. As far as your hair color and your comment about not washing too often, I had to chuckle. This experience has made me realize that hair does not have to be washed so often.
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Go Kale-- I would say 8 weeks PFC your bald spots will fill in. See my pics from pg 605. I had last chemo on Jan 18 and I took a pic at 1 month and 2 months after. I'll post another next week. It's a huge difference! I think I have about an inch now on my bald spots. It's so fine, it's hard to lift it and figure out how long it is and also, it came in gray and is slowly turning brown. When is your last round?
Catgirl--what brand semi did you end up with? I'm going to color next Wed at my 12 week mark--can't wait!!
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Hi everyone, I just wanted to pop back on here and say hang in there- it is worth it!! I am now three years post treatment and, aside from some scars, am totally back to "myself". Thought my life was over or forever altered when I got the diagnosis, but thanks to the penguin caps, I got through treatment feeling like me, long hair and all.
I did lose some hair during the treatment but most of it stayed put thanks to all the recommendations from the outstanding girls on this particular forum. using the Toppik fibers to cover my wider-than normal part and a couple of thin spots, no one knew I was losing hair or in treatment. I never got body hair back, not yet anyway, so I am truly glad I did the caps!
I don't even think much about cancer these days but was just recommending this site for someone who just started using the caps right now. Thought I would check in and say hi. GOOD LUCK!!!
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Thanks Pamela23 for all your comments over the months, please don't go away just because you finished Rads. We would miss you.
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Thanks Hanging in there--I'll be staying here awhile! I wanted someone to let me know what to expect and now I feel I can pay it forward.
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MJpow
I had terrible nausea with A/C and definitely found a correlation between cold caps adding more nausea. My MO prescribed xyprexa for me that I took in pill form about an hour before first cap. I also always had ativan in my premed drip. I was pretty drowsy with this combo but it made it all so much better. You don't have to tolerate nausea. I am 6+ months PFC and am good to go in every way. Only issue still is stamina. All else is great. Hang in there. FYI I did 4 A/C and 12 Taxol for a total of 6 months of chemo/cold capping.
ILove Art
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conditioning question. In a fit of rage and to toss my middle finger up to all of this I had the underside of my hair dyed various shades of pink lol. I just did my second wash post chemo, which was nine days ago, and those parts of my hair feel like straw. Is there a deep conditioner I can do with my next wash to help with that? Thx
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hi mquara, a lot of us are using Acure hydrating conditioner. Just be sure not to apply any conditioner directly on roots just on the ends. But either way your hair will probably still feel a bit more coarse than usual. My hair looks like cotton candy and so thin. No bald spots though just so thin.
I officially have no bottom lashes now. I had more lashes while going through chemo. I'm 6 weeks PFC and have no bottom lashes and loosing what's left of my top lashes. Instead of looking better it's getting worse. Hate this.
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Pamela- congrats! It's great to be finished! And it's great you divulged your news on your terms. I was a little different. I said something on fb right away. Partly because I needed the support and partly because I'm a doctor and no matter where you live, the medical world is close knit and full of gossip. I didn't want my "illness" and occasional absence to be confused with I was in drug rehab or something. Because when a doctor suddenly mysteriously is gone a lot, people automatically assume you got sent to rehab. I wanted my health news to be shared on my terms without false rumors.
Hangin in- I think my hair continued to fall out for about 6-8 weeks PFC. it wasn't all the heavy shedding like during chemo but I still had to be careful. As time went on it slowed down and one day it finally stopped. What a relief that realization was! I knew I'd made it through and cold capping worked! And how it felt sooo good to use a hairbrush again! My scalp got used to the twice a week washing regimine so I stayed with it. Life is easier that way.
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Pamela, My hairstylist used Kuene brand hair color. There were several others that she considered, but has had the best results with gently covering grey with this semi. I probably shouldn't have done it, but so far it doesn't seem to have hurt anything. I know I feel better about not having grey!
I hope everyone is having a great weekend!
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so some of you have grey coming in? My hair that fell out is coming in red, the same shade it was when I was 12. I guess I'm confused why. But even though I like the color, I hate the texture. The rest of my hair is very smooth and the top of my head looks like a crazy ass birdnest. I got my hair trimmed today and my stylist said its long enough now to do a keratin treatment. She said it will smooth out and straighten all my hair for 4-6 months. Sign me up because I'm sick of battling my crazy hair So I'm doing it Friday. Has anyone else considered this?
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iloveart- you have the same treatment as I do. I just started my big shed this week ahh I feel like all my hair is coming out everywhere I hope it slows down soon!!
I will ask them for the Ativan in my drip. When I went to the ER that is what they put inside the IV and it really helped.
Was taxol better? I'm banking on it lol because I can't imagine doing 12 ER visits in a row every week!!
How long is the big shed? I have a sandwich bag full of hair. Hoping it slows soon 😬😬
M
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MJPow,
I am still shedding hair and my #4 AC is tomorrow, followed by Taxol x 12. It has slowed down a bit but still there. I vacuumed yesterday and there was more of my hair, than my dogs. It is all the hair that would have left anyway, mostly, but now will stop growing in like it normally would while on AC.
AC is powerful, well the A is! From what everyone on our protocol has reported, the most shedding occurs during this part of it so do not lose faith. Some have hair start to grow back during Taxol. I would say I have lost about 10%-15% of my hair by now. I am not bagging it, that seemed like it would bother me, so decided to just guess instead. No one can tell at this point, I look just fine and even when it hits 50% loss, which I expect, my hair will still be passable in public which is huge for confidence and self-esteem. I am able to go out in public and keep active.
Also important! I wanted to share also that I am using Essential Eyebrow Solution on my eyebrows. Check out their website for more information!! They did a clinical trial and 91% of the women saved 50% of their eyebrows! Even us AC ladies. Mine have thinned but still look great. Eyebrows frame the face and make a big difference. Too bad nothing for eyelashes yet. I do have Latisse to use after chemo ends. The hope is they will grow in faster and longer. Who knows, but I will try.
My MO and other Doctors can't believe that I have had 3 AC so far and look the way I do. That is super encouraging. The gray is coming in as my hair is still growing, but some Wow Powder covers that for now and I am good to go! Keep capping MJPow!!
Anne
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Sixteen bags of hair. I have a shitton of hair. I lost 90 % of it. I kept my follicles alive though. And at 5.5 weeks PFC, I not only have stubble, the hairs which were broken are growing now as well. So, I have my original length hair- of which I've taken off another 2 inches, my broken hairs which are growing again and stubble everywhere that is 1/4-1/8 if an inch long. In another week or so, my scalp should not be visible anymore. As it is now, it isn't unless you are real close. It looks like I had thin hair everywhere. Weeks 2, 4, 15 and 16 were the lowest shedding weeks. And you can see my amount of hair idiminished a lot in the last month or so. I was running out of hair to lose!
Would I cold cap again? Yes. But I would have much less expectations on the dose dense AC-T regimen I was on. Cold-capping is well worth is if you are on of the less hair damaging chemo drugs. And if you can stand it, it is a decent trade-off for those on strong chemo regimens.
My oldest son's graduation is in early May. I will have enough hair to do a pixie cut and look normal. I can't wait. I haven't had hair this short since I was a kid and went bald because I'd decided to be a Buddhist monk. lol Ahh, the things we can get away with when we were kids!
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What a visual javamama! I put mine all in 1 bag but this would have been better. It is really amazing how much hair is on the carpet when I vacuum or on the floors when I sweep that I didn't add to my "stash". I washed my hair in the shower the other day. I am just short of 12 weeks and feel it's safe to now. It was the 1st time since November. THAT'S where I noticed the difference. My hair has thinned so much. It just didn't feel the same in my hands. I know my side were really thin, but just the overall volume isn't there. I ran across a pic the other day of me last March and my hair looked so thick and healthy. I can't wait for that day! It'll be a long time, but I hope I get it back!
Looking forward to using an ammonia free color soon. I'll be honest, I'm scared! I'll be 12 weeks PFC this Wednesday.
MJPow--Sorry your experiencing the big shed, but remember, it's the worst one! Can you imagine if we didn;t have this forum and we were doing this on our own with no warning? I would have freaked out! I feel that I've been pretty calm about the whole hair thing considering that was the 1 thing I was the most distraught about when I was told about chemo.
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Hello! I am 10 weeks PFC and this is my eyebrow growth. I had none 8 weeks ago and it seems they will be back as plentiful as before. The growth goes all the way down to my eyelid, can't really see it in this picture. So should I wax or thread to shape more or leave them alone since I may lose them again? Plucking not an option.. Did everyone who is PFC lose brows and lashes several times? My lashes are very full and long. I used Latisse every night PFC.
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oh my javamama, I purposely did not save my hair in bags because that would have scared me. But I'm glad yours is growing out fast. Mine looks so thin it's ugly. I normally don't have super thick hair to begin with. But I love the hair I did have. I might have to do the pixie too. A longer version but I might have to.
Hugs
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MJPOW,
If no one has told you this, the nutritionist at my cancer center told me to drink half my body weight (65oz) in water, DAILY! It made a huge difference, though didn't keep me from feeling bad totally. I ate a sandwich (peanut butter or veggie) at every chemo too....fresh, whole food and water are LIFE every day, but especially during cancer treatment!
Hang in there and I hope chemo gets easier for you!! After AC, it definitely gets better! It did for me and I hope the same for you!!
stephanie
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thank u!! I drink tons of water I love it😁
I did meet with my oncologist today and we are going to try different nausea meds again so hopefully that will help. I figure I only have 2 AC left we will probably figure it out after number 4!!
Happy to hear it got better after AC!!
💪🏻💪🏻💪🏻stay strong
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Luvmyys--I'm 12 weeks PFC tomorrow. Like you, I had sparse brows and no lashes 8 weeks ago. The past 4 weeks have been AMAZING! I use castor oil on my brows and lashes every night and then reapply when I wake up since I'm up an hour getting my daughter ready before I wash up for the day. I don;t have to line my eyes this week which is HUGE, my lash line has filled in. They are still only half way in, I can't curl them yet because of the length but should be able to in the next few weeks. They grew so fast! Thinking about using hair color in the next few days, I'm REALLY nervous but ready!
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Pamela23--are you still using the Loreal Spray only to cover up your roots? I started using it two hair washings ago, and find it is very effective and just wondered if it would get me through to the point when I can color again. I have two more weekly treatments to go
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Pamela, I'm 3 weeks PFC today. If I was still having chemo, it would be chemo and cold cap day. I'm really happy that I'm finished, but I guess I have the lash and brow falling out thing to look forward to in the next week or so. I've been using castor oil on my eye lashes and Essential Eyebrow Solution on my brows. I know they will probably fall out, but I'm trying anything at this point.
Don't be too nervous about the hair color. So far, I haven't noticed any more shedding than normal after I broke all of the rules and colored a week and a half ago. In fact, I think my hair looks and feels healthier after the color. I'm much happier without stiff cover up all over my hair! It's still thin, but easy to hide those spots! This picture is from this weekend.
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