Cold Caps Users Past and Present, to Save Hair
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Barremom, we started at the same time. My hair is also shedding more now. I am using cold caps. I don't use the shedding as my guide to whether things are working but looking in the mirror. My hair looks the same to me. THis is not to say that I am not nervous as hell that things wont change.
I can't wait to celebrate after this is over with a full head of hair, thin but good coverage. That is my goal.
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Thanks ladies for all your replies! I will hang in there, I must believe this will work!
Suebe-you're right, I will not let all the shedding dictate if caps are working or not, If I have coverage, its working:)
Thanks again eveyone!
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barremom - I'm sure you combed through this thread before starting this endeavor and saw a pattern. The shed, the freak out, the calm...the shed, the freak out and then calm because it really wasn't that bad. Go back and look at some of the pictures of people's baggies of hair - like warrior woman. She had a full head after treatment and looked great! Relax.
I have a confession. I couldn't just wash my hair one time only for the entire week. My hair was so greasy by last night (shampoo night) that it actually looked wet from the root to my shoulders. So after washing last night and having a nice day with clean hair, I started panicking over the grease. So I did a light shampoo again tonight. Figured I couldn't have gotten all that stuff out of my hair last night with one lousy shampoo and all that grease has to be bad for the follicle. Praying I didn't just screw it all up. My next infusion is Wednesday.
My skin still looks monstrous. Huge pimples like I've never seen or had ever! It's all on one side of my face - the side I sleep on that damn satin pillowcase. I'm wearing a cap and back to natural fiber pillowcases. Praying the acne ends. I literally didn't leave my house since Thursday- and make-up just made it worse. It has to be the steroids, right? Only my face - around the mouth, chin, jaw area. That's steroids, not a reaction, right?
I am living the dream...
Hope all is well with everyone tonight.
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Daniella - yes, the acne is a reaction to the steroids (or the chemo, not sure which). I had terrible acne all over my chin. Just awful, and I never have acne so it was quite a surprise! My doc told me to wash my face only with cetaphil (I used the no-name brand at Walmart). It took oh maybe 5 days or so but it went away. Give or take a few days - it was over 2 years ago so my memories are fading. So great to be able to say that!
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I also broke out in acne ALL OVER MY FACE after my first chemo. It went away within a few days and never came back. I did report it to my Oncologist, so I'm not sure if she added anything to my next infusions, but I never had the problem again.0 -
Thanks dancetrancer and fl sunshine. My face actually looked deformed. It's getting a little better but I have my next transfusion Wednesday so I'm worried. I've never had anything like this. Started out the day before my second infusion as tiny little whiteheads - like pinpoints. Then after, I had a major eruption of huge pimples. The nurse acted like she never heard of anyone breaking out from steroids. First of all, I have PCOS which means my adrogens are already high. Steroids would probably increase the androgens (although I'm not sure if that depends on the type of steroid) Second of all, I'm from NJ - I remember high school was full of muscle head steroid users with faces full of pimples from using them. Duh! Sorry to be off topic.
FL Sunshine - how is your hair?
Barremom - feeling better about today?
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Day 19 and major shedding. My next infusion is Friday. So if you have hair after day 21 according Penguin Cold Cap inventor then I should be ok with the rest. Did anyone ever have hair day 21 and go bald after? I can't easily go through the thread right now.
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SueBe...I am wondering the same thing! I am day 25 today, after two AC infusions, and have really not shed at all. I have been only washing my hair once a week, and washed yesterday, losing about 20 hairs...which would be normal for me at least during a wash and conditioner comb through. I am also wondering if being pregnant has something to do with not shedding much, and think maybe after delivery, I may lose 50% in a week. One day at a time, I guess. Still waiting for the other shoe to drop. Other body hair hanging in too, but I can gently tug on leg hair, etc. and it comes out. Wish someone had a crystal ball ... This not knowing about everything is tough.
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SueBe-Day 19 for me as well!!!! Next infusion is Thursday. I started shedding Saturday (you can read my frantic posts on this thread!) and it continues today. I'd say I lost 25% of my hair over the past few days. Had to apologize to my physical therapist today as once when we were done on the examine table, I got got up and left tons of hair behind. It was gross and I was embarrassed. I am afraid to even wash my hair as Im afraid the weight of the water will take whatever is left out.
In my mind I thought if I did EVERYTHING 'right"...vitamins, nutrition, best hair products etc etc. I could bypass this. HAHA
I have been reassured by my girls here (Thank you ladies!) that this is normal- my new mantra is "I'm not looking for perfection, just coverage" My how my expectations have changed!
I've also heard if you have hair after day 21 thats good...but I don't know that to be a fact. Any of the past cold cappers have insight??
Thanks again to all who talked me off the ledge this weekend!!!!
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Another thought to keep in mind about the "freak out" stage:
Will all that worry about how much hair you might lose do anything AT ALL to change the outcome?
Worry serves absolutely no good purpose. All it does is make you feel MORE miserable than you have to. Be kind to yourself and let the worry go!
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When I first diagnosed, someone told me the best quote ever:
"Worrying is like praying for bad things to happen."
Every time I start freaking out, I consciously refocus my thoughts to what I would want or pray to happen instead of what could happen. It take a effort...but I have to try and do something to get out of needless worrying.
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I like that Daniella..."worrying is like praying bad things will happen" ... I believe in prayer so I will push the worry from my mind as best I can, and think only POSITIVE thoughts and visualize the hair staying put on head!!!
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I freaked out too when I began to really shed, then realized that at 24 days after my first infusion I still had my hair and those who hadn't capped were all bald. I sort of held my breath and waited another week before daring to believe cold caps might really work. They do. I kept my hair. Have faith ladies, they really do work.
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I'm 11 weeks pfc this week and was delighted to wash my hair in the shower and had no extra shedding. Hooray! My eyebrows have grown in most of the way over the past two weeks as well, still filling in but the Anastasia eyebrow powder fills in great. My eyelashes are still falling out and I am not seeing new growth byt maybe the eye doc will notice some at my checkup later this week.
My hair is filling in on the sides a lot, mixed salt and pepper but hopefully more pigmented than less ultimately. I have a bit of regrowth on top but still thin. Hopefully by Christmas I will have a bit more fullness. I wear hats most of the time as my hair isnt great but still no ones knows that I did chemo or had cancer unless I told them.
Hang in there, even if you lose a bunch you will still be way ahead of the game when chemo is over.
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DaniellaD- When I called to report my acne the nurse was not shocked at all and said "unfortunately it turns you into an adolescent girl all over again". But I can't remember if she said it was the steroids or the Aloxe.
My hair is still here! My LAST chemo is next week. It's definitely thin and consistently shedding (I combed out a huge ball of hair this morning before work). But at this point I'm done freaking out about my hair and am pretty confident I will still have full coverage when this is over.
The last infusion I had was an absolute nightmare so I'm praying this next one is 100X better. My cousin is trained in Reiki and she is giving me some stuff to do during my infusion to hopefully help the process and make things easier on me. I can't handle another one like that one.
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FL_Sunshine- So glad to hear your doing well with the coverage! What happened at the last infusion that made it a nightmare??
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This was my "shed" after todays shower-I put a quarter in for scale. YIKES!
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yikes! That makes me want a shot if tequila. We have 100x that much on our scalp though, right? How is your overall coverage after the wash? How are you doing? Hugs
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Gatomal- I'm trying to remain positive, although its hard some moments. The coverage is there, just MUCH thinner. Second infusion this Thursday.
Thanks for the hugs...I can use them:)
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Hi Barremom..... My last infusion I was just an emotional mess. It was a very long day. I was crying in the waiting room because I overheard another girl around my age ( probably late 20's or early 30's) telling someone her story. Basically she was just like me.... finished chemo, finished surgery and then radiation. Was "cured" for about 1.5 years until she found out the cancer had spread pretty much everywhere (lungs, bones, chest, etc.). I was horrified and it scared the crap out of me. Then during my infusion they gave me some anti-nausea meds through my port. It made me sooooo sleepy I could barely keep my eyes open which made changing the cold caps very difficult. I only capped for 2 hours afterwards instead of 4 because I was so unbelievably tired. It was just a mess!!! Praying next week goes much better
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barremom64 - Your picture helped me to mentally prepare for what's coming... I noticed my 'other' hair shedding a lot last night, it made me feel ill. Today is Day 14. I noticed some hairs came out this morning, but not much. Hope the cold caps are working. We are in the middle of heat wave here, and I'm itching to do some exercises as all the SEs calm down. But I'm worried about washing my hairs... I'll try to hold off my hair wash until Friday when I have my hockey game.
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FL sunshine -- That story is so sad. I'm sorry you had to hear that on your treatment day. Ugh--that poor girl. I just finished my last chemo last Thursday and I think we've had the same TCHP. While I still have a lot of hair, it is much thinner and I just don't feel "pretty" anymore (not that I did throughout this whole thing), but now that my eyebrows are barely there, its worse. I just want to move on…..hearing that girl's story is so upsetting….going through all of this, thinking it's gone….my heart is breaking.
mdg--I know I have the penguin info, but how long do we need to continue washing twice a week w/ dermorganics? I am so ready top move on…… just want my hair to start filling in again and of course coloring it. Colormark is not cutting it anymore.
agness--can I wear a hat now? I know we aren't supposed to get our heads too hot, but now that I'm done chemo, was wondering if a cap or headband is ok?
DaniellaD-I like that quote and should prob repeat that over and over……
I cannot wait until next summer.
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Barremom, if I put all the hair I lost over the last two days together it would be a little more than that. I am so scared to go wash my hair. I am sitting and waiting for the last possible moment.
I guess we can only hope for the best at this point. I really want to be one of the success stories.
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Sending a big virtual hug to all the cappers! I remember the shedding days well, the cold water showers and the lifeless hair….but I stuck to it with the help of my fellow PCC users and I made it out with my hair in tact. Thinner sure, but after chemo ended I really felt invincible and strong. Take it one day at a time - one minute at a time if that's all you can muster, and you will get there. It definitely sucks now, but I know you will all do well and will soon be lifting up the newest cappers that join our club. Keep the focus on what you have left not what's falling out, and celebrate that you are a pioneer in all that you are doing to maintain your privacy and appearance so you can quickly move forward when treatment ends. I just know with technology like the diginicap barremom is using, it won't be long until the coolers full of ice will be a thing of the past, and we can look back and laugh at the spectacle of it all when we were capping. (I actually found it quite hilarious during treatment - we were quite the circus!). As crazy as it all is, as bad as the hair may look, I will always be grateful that I had the opportunity to save my hair. Be strong, capping sisters! XO
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barremom - put it into perspective. You are almost 20 days out and you still have hair. I saw that other non-cold cap September chemo ladies have already lost enough that they have to shave it off. According to PCC, if you have hair after 21 days, you're going to keep coverage. It's scary but as one lady said, and I forget exactly how she phrased it, but basically you are not a special snowflake, the caps work because they work. And remember to refocus your thoughts.
Fl_Sunshine - that story is awful and my worst nightmare. I was planning on asking for a PET scan. Sloan didn't offer me one bc they don't think it's warranted but I want peace of mind. Then again, I guess we will never have complete peace of mind. You have to know that her story is not your story. Her cancer isn't your cancer. And keep her in your prayers.
As for the acne, I think I just was talking to the nurse wearing the dunce cap for the day. I don't get aloxe so it's the steroids. I hope it doesn't happen again. It still not cleared up but it is better than last week. I can wear a little make-up and go out.
Since I'm only doing taxol low dose, I have no idea how long I have to wait to see if I will keep my hair. Some lose it by the 4th treatment and others not until the 8th. I have a long time to wait and see. Tomorrow is #3 - then only 9 to go.
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I know pictures always kept me motivated, so here are a few I hope help! Ponytail (so thin!) shot 2 months pfc and one year pfc, then full hair 2 weeks pfc (with creative styling) and 14 months pfc. Loving the wavier hair I have gained!
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hope49 - gorgeous. You're an inspiration. Thank you again for everything. Love the Hair Fairy - it sits in my vanity. Xo
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hope - thx for wonderful inspiring words AND pics :-) so thankful!
Fl-sunshine - heartbreaking. :-( the smallest things set me into panic now - I think the loss of innocence is the hardest thing about this when you are young (I had never given my health even the slightest serious thought...now I am verging on obsessed with recurrence. Probably need serious therapy...)
I am also looking forward to last chemo next week!! Can't believe it's almost here...and can't come soon enough!
I do still have full a head of hair...I guess it's thinner, although to be honest it's hard to tell because my chin length bob is now a stringy shoulder length non-cut. I honestly don't think I've lost much at all...might be that I am one of those with a big shed weeks PFC...but for now it's all there, just dull and lifeless from lack of washing.
I'm not showing off!! Just wanted to let newer cappers know it (apparently) does work ;-)
(But man, I miss eyelashes!! I have around 3 left on each eye...)
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Hi Ladies!
I am new to this board. I was diagnosed in August, just a few days before my 29th birthday. I heard about cold caps from a couple people- one being the nurse that did my MUGA scan. I asked my Oncologist about them and he said he had a patient when he was at Emory that wore them with success. He was onboard with the idea so now I've been doing tons of research since I start chemo in 2 weeks. You ladies have all convinced me cold caps are the way to go! Everyone still looks so beautiful! I'm in between Chemo Cold Caps and the Elastigel. I like the idea of having someone show me, but its so much more cost effective to figure it out myself, and with all the tips and pointers from this board, I'm confident I can figure it out! I've read the past 60+ pages of this board trying to catch up and I've been trying to write down all the tips and tricks. I did have a few questions that I didn't see come up (sorry if they were there and I missed them!)
-I was reading on the Elastigel's and they say to spray hair with water and put it up in the shower cap provided then put the caps on over it- did anyone do this? Is it recommended?
-I was thinking about getting a cut and maybe seeing if I could dye my hair to it's natural-ish color before chemo so I can leave it alone for the next 6+ months- Can I do that >2 weeks out from chemo? Or should I leave it alone?
-They said my infusion would take 7-8 hours - are 5/6 caps + 80lbs of dry ice enough to get me through plus a few additional hours after?
- products to maintain brows/lashes? I know a few have been mentioned- just wasn't sure which one people were most happy with.
-Does anyone have a shopping list they could send me with anything that would help with the caps and/or chemo?
Also, kind of on a side note, I've had to start the process to freeze my eggs since I haven't had children yet- does anyone have any resources for this or any advice? It's such a massive subject that I never expected to be dealing with on top of having cancer! And if cancer isn't expensive enough on its own!
Thank you so much! And thanks for providing an upbeat and helpful board, but for also being supportive and understanding when times are tough!
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hang in there ladies! I am almost 6 weeks PFC after dose dense ACT chemo. Thin for sure! Especially noticeable on top and lots of outgrowth. Still shedding a bit but it's either slowing or proportionate the the amount of hair left. But... Still have coverage! Most people don't know what I've gone through. Worse than the hair on the head is the loss of eyebrows and lashes!
You'll get through. It truly is amazing the amount of hair one can lose while still having coverage. I have new growth filling in above ears now and feeling it on top of scalp as well.
Aside from hair, I'm feeling fantastic and can't believe how quickly chemo went.
Have faith. The caps work and you'll be so thrilled to get through with hair on your head. Attended a work conference with hair clipped in small thin "bun" No colleagues could tell. No wig needed!
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