Cold Caps Users Past and Present, to Save Hair
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Good Day everyone:
I too lost hair on legs,etc gradually. By the 3rd Tx noticed it was all gone. My eyebrows seem to be thinning now, even though I used generic latisse all thru, on my lashes and brows. I guess it will grow back faster because of generic latisse. SE's are worst this last treatment. Neuropothy is very pronounced--heavy pins and needles in toes and was in fingers too, but seems to be less there after first few days. I am 6 days out from last Tx and bad taste is awful. Well, only another week or so of this and I should be back to a more normal situation, I hope!! The best to all of you starting and in the middle-this too has an end!!
Keep Positive and Keep Laughing!
Nancy
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Hi - a couple of things...
Arlene - are you changing your hair part with EACH cap change? The cold caps folks told me to do this to prevent frostbite. Last round I was a little careless (or too many drugs on board) and I had crown pain, I am sure it was because I did not change my part much. This last round, I was good and changed each part every time...no pain yet!
Regarding shaving the legs, one of my friends who went through chemo was shocked when I talked about shaving. Apparently the chance of a cut, and a subsequent possible infection due to low counts is why you should not shave. Sorry - but have to be a drama queen - on TCH 5 and 6 (with low counts) I had two infections from itty bitty things - a tiny blister on my foot landed me in the ER in Florida on vacation (IV antibiotics, then orals). The second was a 2x2mm (tiny) blister on my hand that blew up my hand and put me on more antibiotics. My friend (that warned about the shaving) had a blown up hand due to a small cuticle infection. So, message for the day - GO AS HAIRY AS YOU CAN ALL OVER... the off chance of an infection is just not worth it. My little hand infection left a nasty scar that will be with me years!
I have heard, from reading way back in this thread, about the PFC (post final chemo) big sheds. I have to admit that I am a bit worried too. Sashaz - stay positive and keep us informed. I am right behind you, 2 days PFC! We can compare notes!
Susan - glad things are heading towards normal. We all love normal, don't we?!!! Love your positive vibes!
Mplace - good luck...this is the place to be. One helpful hint is to go waaayyyy back on this thread and read all the hints and tips, there are so many smart and wonderful women (and men) who have shared their experiences on this thread.
LMflynn - love hearing from you...you were such an inspiration for me throughout this process, wish we could all meet in person some day!
Maria - can you believe that you are almost done, done, done????
Love and positive thoughts to you all!
Annie
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Lucky - love your chia pet reference. I keep telling my DH to find some chia pet hair and he can not find it. I really think I need a penguinista to look (and find it, dammit) for that hair!!!!
Annie
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Ditto the warning about cuts while undergoing chemo. What I got was chemo burn -- twice -- on the back of my hand where the IV was inserted. I was given a silver sulfardine (sp) cream to put on the burn; and then I used the cream during my radiation. It worked great. Then on X'mas eve a friend badly burned her hand while helping with dinner -- that cream worked on those nasty burns so that she didn't need to go to the MD.
Next Monday is my 6 month mamo.......
Colleen
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Hi again Ladies:
Thanks for all the information. No, I definitely will NOT be shaving....doctor warned me about that from the git-go so I'm all natural and hairy on the legs but jeans sure cover up all the fuzzies.
Hate hearing that the SEs get worse. My second TX was not really worse but different. I didn't have all the major bone pain with #2 but just total yuckies and tired. Today is Day #5 after TX#2 and starting to feel better so I'll be on the treadmill later today...won't be very fast but I'll be there for sure.
Annie: So sorry to hear about your infections. How awful. But you are done and can now start returning to normal. No, I haven't been good about changing my part but will concentrate on it next time.
Lucky: I won't be surprised to see my new hair fall out since I still have a LONG way to go but I can hope.
Arlene
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Hey ladies, I've been scouring the cold cap thread to find all of the hairstyling tips to survive during chemo. Some ladies used hair extensions, some found hair bands ok, some used the hair dryer on cold settings. I had my first chemo yesterday (i feel great today!!), and already i'm crying the blues over my mousse/texturizer free/root boost/ and hairspray free head! I haven' gone au-natural since i was 15!! it's a stunner! i have long bands that are just hanging over my eyes like a shaggy dog! What's safe to use? Can i boby-pin it back? how about those claw like hair clips? Thoughts????? i read up on all of you everyday. I wish we could have a party!!
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Liv
Hair clips and Bobby pins are ok I would stay away from tight rubber bands bc when u take them out u will pull ur hair no matter how gentel u are! I have very curly hair which I Straightned everyday prior to Pcc but I just let it air dry and then it got used to bring curly I would pull it back into a ponytail everyday I used a Barrett the long kind that have the clip closure. That way I just unclipped and it did not pull my hair when I pulled it out. Hmmm what else? Oh I also used cloth scarves and rolled them into headbands especially in the beginning and my hair was super dry and scaly this only lasted the first few weeks. I'm now four months put from last chemo and highlighted my hair and soooooooo glad I used PCC!!! Good luck and stay warm!0 -
I have used soft hair rubberbands that are not put in tight. I use them daily to wear a pony tail when I exercise. I wear a thin, elastic headband (probably about 1/3" thick or so) I got in a multi pack from CVS because it keeps the front of my hair out of my eyes...I have longer hair and my bangs are down to my chin or so. I also have use the small, light weight claw type clip (pincher hair clips) to pull the front of my hair back. I have also used a few bobbie pins to pull the front of my hair back. I am just super careful and try to make sure I remove them very gently. I don't think that has added to any shedding really. I also sleep in a satin cap with satin pillow case at night just in case.....
As far as styling...it does stink but I am so glad to have hair. I do wear it back a lot because it looks better. The only styling gels I use are Giovanni (chemical free and organic) and Organix moroccan oil (also chemical free and organic). Oh I do use Be Curly from Aveda when I plan to wear it a bity wavy. I am careful not to get any on the roots or scalp...just the hair. I have used the blow dryer on cool but I usually try to let my hair dry in a towel (a smaller towel wrapped just around my head with hair hanging down in the back and I gently secure the towel with a large pincher type hair clip) for a while first. I have also used the diffuser on my hair dryer with the cool setting for wavy days. I also have a few of those tiny little pincher type hair clips that I have used for the bangs - again very gently and loose. I am sure these are not recommended by PCC itself but you have to decide what is OK for you. Best of luck!
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hey thanks! that's great advice. i bought the giovanni shampoo, conditioner and leave in conditioner. I didn't look for styling products. i'm sure wearing it a a ponty helps to prevent matting. Which would be a good thing. Thanks so much!
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Just realized it's 15 weeks PFC....not 14 as I said in my last post..... NEVER EVER thought I'd get to the point where I wasn't counting days....and I accidentally put my head under the warm shower today...immediately turned it to cool...but the point to myself was....I'm starting to accept I kept all my hair and it's time for my exchange surgery!!
Everyone~ aren't we so lucky to have this site and group.... In this crazy cancer journey ... I too would love to have a cold cap party ...if for nothing else to admire our hair!!!0 -
ArleneA: Leg hair: mine never really fell out, but I did get to stop shaving before TC #2. I went all summer without shaving my arms or legs. Loved it! I did have an annoying toe hair -- which I left for sport, to see whether it would ever actually fall out -- and it never did, so I finally shaved it and was free of it for a while. After I had radiation, I didn't have to shave on my treatment side until a few weeks ago (!). At first I couldn't quite figure why I only ever shaved one arm... duh!
Lymflynn: glad to hear you are making the psychological adjustments back to "normal", whatever that is! :-) I don't think we ever embrace that word in quite the same way, frankly.
Re: cuts and chemoburn: Funny, I never thought about this while going through chemo. My counts somehow stayed completely normal throughout all of my chemo, so it never came up. However, I didn't have a port, I had a needle stick each time I had an IV, neulasta, bloodwork, etc. (I made sure to drink lots of sodium broth the night before chemo, to get my veins nice and plump.) With chemo #2 I got an incredible burn mark at the IV insert, it *burned*. It was probably less than a fraction of a drop of chemo, but the scar has only finally healed. I'd forgotten about it until this discussion!
Btw, my one-year followup was great. Next mamo this summer. After my appointment, there was a message from my onc's office, in the evening -- so I was worried something had come up. Turns out she was looking to see if I could be .... a reference for another patient who wanted to use PCCs. WOO HOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That one call made it ALL worth it!
Cheers to all,
Susan
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Yeah.....love this all! Ditto on the toe hairs, left mine there for sport, as well!
Have a fabulous morning...on my way back to some normalcy....field trip with the 1st grade!
Annie
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I had the dark red line that crept up from my chemo infusion site twice. The first time it was about five inches long and scared me enough to head to the ER (only happens on weekends, right?). They were a type of phlebitis which is an irritation of the vein. Hot compresses were what was recommended. It takes many months for the line to fade.
I have an oncology appointment next week and I hope to get at least a small amount of the reaction Susan got. That would make me feel great and like there is a chance they would at least mention caps to others. I'll keep you posted. Julia
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Yikes, as much as I hate the port and think it is creepy, I'm glad I have it. I too still have the toe hairs...how funny is that!
Are you guys all dealing with (or dealt with in a lot of situations here), chemo nose. It is pretty miserable. The Ayre Spray helps so though.
Off to Vegas for my 1 week blood work, post Chemo.
Arlene
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did anyone have a sore scalp from the PCC? my crown area feels very tender at the roots. Kind of like the feeling you have after having your head in a tight pony tail for too long. Only it's been like this for the last 48 hrs. anyone else have this?
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Yes LivCar~
My scalp was sore after every chemo. It seemed to feel better after a couple of days...
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My scalp got like that a few days here and there but it goes away.
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Livcar - yes, especially on #5, when I did not seem to change my part. No soreness or pain - though only on day #3 post TCH #6. No sensitivities, but I was really diligent on not having the crown get too cold repeatedly. Had DH and BFF watching me part...
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Hi everyone:
I think a party would be great! Maybe, if they ever get FDA approved, we can all meet with Frank and have a party!!
By the way, I am working on the poster with my sister-in-law. Will let you know how it is going.
The only special treatment I gave my hair was Alterna leave in conditioner and blow drying on cool setting after hair was half way dry. A few times I used foam rollers and gently rolled my hair in them and let it air dry. It didn't do much, but looked a little better than nothing. Now my hair is very dry, much longer and curlier than usual. Who cares, its all there and its mine!! Everyone who sees me says, WOW, you kept your hair! When I explain about the cold caps, everyone wants to know why they have never heard of them!
Also, ladies, I don't know if you recall, but I was going to try to find a really nice penquin charm for us all to proudly wear. I have located a few and will follow up and let you know costs,etc.
I am going on a little vacation from May 6th to the 20th, because I will start 7weeks/5X a week of Rads at end of May or Beginning of June and so need to try for a much needed rest first. I need to celebrate the end of Chemo as well!!
Keep Positive! and Keep Lauging!!
Nancy
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Yes, I did and still do have pain and soreness after the cold cap day- the last was the worst (my third). The scalp or bone even swelled at the crown with a bump and that worried me. The bump has almost gone down now. But very sore to the touch still.
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Yizbieta - sounds like what i had...almost as if someone nailed me with a baseball!!! It is fine now...
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glad to hear i'm not alone. I was going to do some at-home cold cap use as recommended by Frank, but figured my scalp needed to heal first. Glad i asked!!
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I met my brother for lunch today and I had to mention to him that I still have my hair. He asked me if I've lost any so that made me feel really great!!!! Little does he know how much hair I've lost. Keep working EGs.
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Hi everyone,
Still have my hair after 2 TCH treatments but maybe it has thinned a bit (seems lighter in weight) . I haven't noticed any shedding on my satin pillow case or on the big tooth comb I use. . I am trying to not be that worried about it, the bigger issue is getting cancer free. For those of you who are more experienced with saving your hair, what is your recommendation about wearing hats to protect your hair and face from the sun. Is a light weight hat ok? With summer coming I think that chemo can make you very sensitive to sun so it would seem wise to wear a hat. Please advise. This whole thing is quite a learning experience. I have never put my own self care as a priority and now I am forced to
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Hey Serenity Wisdom - i had the same question ... i'm only one treatment in, and i'm worried about summer outside with my kids. When i asked around, some ladies said they went out without any hat, a few said they used straw hats that had good ventilation. Some said they used visors. Guess we'll have to wing-it! Good luck!!
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Hi Ladies: From what I have read, the PCC users aren't supposed to use hats or any type of head covering. I'm using the EGs and guessing the same protocol stands; however, I am outside a lot too and with fair skin and chemo, I definitely wear a cap. Rather lose my hair than get (more) skin cancers. Just my opinion.
Arlene
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Hi - just spent a week in florida and wore hats every minute of the daylight. No problems. I don't think there are any rules, it all about the pressure that you push/pull on your hair! If you are doing chemo, I think hats are practical for the skin...and will be fine on the hair.
Annie
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Good Day All:
I wore hats in the winter when it was really cold with no problem. I tried to do earmuffs most of the time so that my hair was exposed to the cold air. I managed to wear them most of the time, but in snow and rain and extreme cold I wore a hat. I don't know where much of this info comes from about no hats or hair coverings, because this site is only place I heard about it. I think a light straw hat with ventilation will be fine. As Arlene and Annie both said, better a hat than skin cancer. If you don't wear a tight hat squishing down on your hair, I think it will be fine. I intend to wear hats in the summer sun, especially when I am in Florida for my little vacation--its really hot there now.
Keep positve, Keep smiling and laughing!!
Nancy
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I plan on wearing a straw sun hat this summer in case. We are also taking a weekend trip next month and if it's sunny I will be wearing a light, cute hat (made from cloth - light cotton) if the sun is hot/strong. I want to protect my hair and my skin...there can be sun senstivity to the skin while on chemo for some patients.
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Hola,
For PCCs, it's fine to wear hats, bandana, scarf, to protect from the sun (you won't need it to hide hair loss, that's for sure!) -- find something that doesn't pull/tug at your hair. I wore baseball-type caps when I was in the sun -- important to protect yourself from the sun while on chemo. Had no trouble with it at all. If you are in a hot climate, try to keep your head as cool as possible, or use a cold cap from the freezer to chill it back down. Try to keep your scalp no warmer than your body temp (97).
I swam every day and always wear a swim cap, but that one-hour dunk in cold water helped me (I'm convinced). I used PCCs just before the time that Frank recommended wearing them between treatments, but I think my daily swim was almost the equivalent.
Hope this helps!
Can't believe there's almost 100 pages of posts now. A year ago when I joined, we were only on page 16. I'm so glad to see how large this community is becoming!
Susan
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