Cold Caps Users Past and Present, to Save Hair
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A year after chemo and the Penguin Cold Caps...
Just highlighted my hair. A bit thin in the front but hubby says no one would notice.
I am greatful to Frank Fronda and the cold cap team.
Best wishes to all you Penguinistas...
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LivCar: I just took two Tylenol about an hour before each treatment. Knowing it's so temporary and important made the temporary cold tolerable. Only felt the "bad cold" for about 4 minutes. Then scalp warms them and scalp becomes more numb for the rest. Really found caps quite tolerable.
It was the frozen peas on fingers and toes that was painful. But that was just done during Taxetere plus 15 minutes before and after T. Worth the temporary pain to avoid the long-term neuropathy!
Remember to take Claritan before Neulasta shot the next day. Do this for a week. I forgot one day last week and had really bad bone pain in my back.0 -
You look great ANG7!!!! so lucky to be a year out! I am one month PFC---girls--I need a trim really bad--my hair loss has left my hair which was layered--so uneven---would love to just even up the back to make it look like some kind of style--probably about 2 inches--do you think this is ok?? Still losing hair at this point, do not want to be left with a huge shed post trim--what do you guys suggest??? No color, too scared as of yet---I have become a fabulous touch up artist with Oscar Blandi!
Thanks!
Sharon
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Congratulations Ang7. Another success story and you look wonderful!
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other drugs??? anything to lessen the pain! lay it on me!
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you look beautiful. Can't wait to post my 1 year comments!
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howard - thanks, i'll try the tylenol. I see so many warnings about tylenol and your liver ... you can really get caught up in some of the stuff that's posted! I find the PCC ladies the most reasonable on this site.
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Hi Anniemomofthree,
i tried to do as little as possible to disturb my hair and now have huge dreadlocks all underneath and coming up the sides. i'm afriad those clups will cause it all to fall out now. is there anything you can suggest for me? I'm day 23 after 2 DD AC tx. two more AC (4/29 and 5/13), then 4 DD Taxol. oh, in case you have any thoughts for other SE i have nausea and breakthrough vomiting for 6-7 days post tx, too. I take emend, dodecadron, reglan, kytril, ativan, round the clock. how do all you strong ladies get through this? Please help me.
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Hi Susan,
i don't know how to PM you for the writeup you have on the PCCs, etc. I too have mine from dear Frank. Any advice you can offer would be welcome. I am also in the Bay Area, Peninsula-side. what other infor do you need from me?
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Zookeeper: I dealt with the same thing about staying away from my hair and went for a warm, 6-mile walk and the mats underneath were horrible and that was hair washing night so needless to say, lost TONS of hair that night and it was so scary. So be careful and I ordered under the advice of one of the girls here the Intelligent Nutrients Shampoo and Conditioner and waiting "impatiently" for its arrival as it is supposed to really clear the mats.
I'm finding, as much as you don't want to, that you have to comb some but as someone else said, hold onto the hair and try not to pull. The caps are a LOT of work but should be well worth it in the end.
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LivCar, I had Vicodin left over from my surgery and took one about an hour before my scheduled infusions. My onc was fine with that.
My TV interview recently aired. If any of you would like to see it Google KSEE 24 and enter Cold caps into the search field. That should take you to a screen with a pic of me and a cold cap. just click on "more" and that will take you to the video. May do it again when the first freezer from the Rapunzel Project goes into service at my cancer center. Pink Ribbon cutting ceremony is what I'm thinking.
zookeepermom, YOU are the strong one, withstanding the dense dose TX. For nausea I used Compazine post infusion and Zofran for breakthrough barfing. And I sipped ALOT of ginger tea. Yogi makes a nice one.
Re the dreads: When my horse got snarls like that I used Mane & Tail conditioner on wet tail hair. Starting slowly and gently at the bottom, while holding the hair so as not to pull at the roots (which would have gotten me kicked), slather on the conditioner and pick the mats apart with a wide tooth comb or hair pick. Do it one section at a time as you move up the length of the hair. It will take quite awhile and you may want to enlist a helper or hairdresser as you would be working on yourself. Rinse thoroughly. Having had success with my mare I tried it on myself when dreads appeared in my hair above hair wraps that were growing out. Worked fine. Didn't have to cut them out but it does take forever. Hope this helps. Good luck.
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Thanks you all...
This thread has been so supportive.
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NewBride--LOVED the video...you look awesome too! So glad to hear that your oncologist says it's "safe" on the video as well!
Tori
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ToriGirl, Yeah. Dr. Hager lends some credibility, huh? He's just a great onc and a great guy all the way around. And thanks so much for the compliment. Getting the courage up to be on TV was hard. I'm definitely more comfortable backstage than centerstage but getting the word out to as large an audience as possible is really important. My biggest prayer was that if I had to have cancer, at least could something good come out of it as a result. Seems my prayer has been answered.0
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Zookeepermom, To send a private message you just have to click on the person's name on the left side by their picture, if there is one. On the right side you'll see their bio and on the left is a place to send the message. I just sent you one because I'm in the Bay Area, too!
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sashasz3~
I waited 2-3 months before I got my hair trimmed.
But that was just me...
not sure what is the "right" amount of time.
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sashasz: I waited until my hair stopped shedding (several months!), before I got a trim (or resumed warm water washing or daily washing). That varies for everyone -- the shedding lasted much longer than I expected, made me nervous, so I waited. I don't color my hair, so that was not a consideration.
Ang7: Awesome photo! It is great to see how well you are doing! Your happiness shines through! I'm glad you are also keeping up with the list here. I find it so rewarding to help women on this journey. It's been more than a year but I remember full-well what it was like to get the diagnosis, navigate the layers of treatment, and stumble across the PCC info, which was like a miracle in the midst of a horror.
zookeepermom: I PM'd you, let me know if you got the message. (There'll be a little notice on the upper right where it says Private Messages, and in pink it'll let you know if there's a private message waiting for you. Click on that to read private messages sent to you off-list.)
For those with matting: I used conditioner on my hair (avoiding the roots) throughout chemo, without ill effect (my hair would have been snarly otherwise, and I would have lost hair due to tugging with a wide-tooth comb). I used Trader Joe's nourishing spa (hydrating) conditioner, loaded with organic oils and no laurel sulfates. Inexpensive, smells like a spa, and works beautifully. You can put some in a cup and dilute it, and use it as a rinse, if you like. Just be sure to hold hair at the roots so you don't pull as you comb.
Best,
Susan
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Thanks, NewBride, for the tea advice. My hubby got some for me right away. Unfortunately, i have anapylaxisis shock with compazine, so can't take it for any reason. My onc changed me from zofran to kytril since the breakthru barfing was even less controlled with the zofran.
Thx also for the mane and tail idea. My daughter doesn't have any here at the moment (she owns a horse), but has this othr outrageouesly great detangler by eqyiss so she gave me that to use. I did what you said and lost an entire gallon ziploc bag of hair, even though I was being super careful. All the dreads are gone, tho'. When I go to bed tonight should I do anything special/different to keep it from being "dread-ed" up in the morning? I do sleep on a satin pillowcase, but leave my hair out loose. In addition to the clumps coming out while coming i think i must have had a lot of breakage cuz its about 4-5 inches shorter now than this afternoon before I statred...
thanks so much for all your support.
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Hi Susan,
I tried to click on the pink messages but maybe my computer is just hanging. I'll try again later. Thank you so much for all your pateince (for everybody's help and patience!!).
I'm going to get the TJ nourishing spa conditioner tomorrow. I think I may have to work on how my PCCs are being tightened since I have a have a bald patch behind and below my left ear. only noticeable if I lift my hair up there - no ponytails for me!
Gabbi
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Oh, and congratulations on being a year out!
One more question....why are we supposed to keep conditioner off our roots? Does that include like a spray-in leave-in conditioner, too, or just the pour-on, rinse off kind?
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Thanks Susan!
I have gotten a couple calls from Cold Cap users and my husband and I were able to meet with 2 couples and actually show them how to do the Caps.
I wish there had been someone to do that with me...
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Gabbi,
I used a satin pillow case but also put my hair in a satin nightcap while sleeping, got it at a Sally's or beauty supply store like that. It was cheap, maybe $8 or so. I did that because I have long hair and I didn't want it to get pulled out if it went under my shoulders as I slept. Towards the end of chemo I'd get hot flashes and it would get hot, so I'd take it off for a bit --- usually if I was chemoflashing, I wasn't sleeping any way :-)
I'm so sorry about all of the breakthrough barfing, and esp. that you can't use compazine. Your doctor probably already has you on a "baby food" diet: just nibble throughout the day when you feel like it, including a mix of fluids one each from water/sodium (such as broth or soup)/apple juice (but not citrus) or Pedialyte/other such as ginger ale or jello. Solids can be crackers, toast, bananas, rice, grilled chicken, oatmeal, eggs, cottage cheese....but in teensy amounts -- spoonfuls if that's all you tolerate. No fried, spices, citrus, alcohol, caffeine, no raw fruits or raw veggies -- the stomach lining won't tolerate it well (people vary on this but you are obviously having difficulty). My taste buds were shot throughout chemo, and the only flavors that were pleasing were bananas, apples, salt. Everything else was purely functional.
Keeping conditioner off the roots is two-fold, as I recall: it adds extra weight (I thinned my conditioner with water and just worked it through the rest of the shaft and the ends, then rinsed thoroughly so I didn't get the weight of a film) but the chemicals can also stress the hair. The Mane and Tail is an excellent suggestion; I used that many years ago after an especially grueling, hot, showerless backpacking expedition and even in braids my hair was a wreck. The Mane and Tail worked great!
I also lost around one ear -- it wasn't really bald, but it's hilarious as it grows back. It's super-curly and kind of zoomy. At first, the really tight curls would fall into my ear while I slept and poke me in the ear and wake me up! Annoying but I was glad to have hair. They're growing super-fast, and are now about six inches long...but stick straight out! With my hair down, it blends in and actually looks quite full, but when I put it in a pony tail or clip, it sticks out like Bozo. I was riding my motorcycle last week, took my helmet off, looked in the mirror and about bust a gut from laughing so hard. Talk about helmet head! :-)
Cheers,
Susan
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Happy Easter Penguins:
Day #3 after TX#2 and still just light shedding. Hope that continues but I'm thinking that will change. So far not feeling the same SEs as after my first treatment......just a yucky flu like feeling but no bone pain this time but suppose it could still arrive. Darn heart palpitations came back again this morning though and I'm starting to think the NP might be right in that it could be the steroids leaving my body.
Zoo: I lost an entire gallon baggy of hair first shampoo after Chemo #1...hoping that doesn't happen again or I'll be bald.
Susan: Thanks again for all the hints!
Arlene
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New Bride - LOVED your video!! i hope i'm as lucky ... your hair looks great!!
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zookeepermom ... hi .. i start tuesday DD AC TAxol as well. Keep me posted, and let me know how you tackle those side effects. Needless to say, i'm worried how my body will handle it all. Here's hoping the PCC keep me busy enough not to worry!! Hang in there. We'll be out of this soon!
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ArleneA- I also lost a gallon baggie of hair my first shed, I am 11 days post 2nd treatment and waiting for the dreaded second shed which last time was about day 14. If i lose that much again it will be wig time.
Happy Easter Everyone!
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zookeepermom, So sorry you ended up losing so much hair while trying to get the dreads out.
I also think Susan's recommendation for the TJ hair products sounds great and will get some for myself as they just sound so much better for us (and the planet too). I used Aveda during my TX, but it is a little spendy and I would welcome a less expensive alternative.
I ponytailed my hair loosely with a scrunchy at night. That seemed to keep the dreads away for me. Also used a satin pillowcase. I've kept doing both as my hair is so bushy and tends to tangle. After working so hard to keep it, I try to treat it a little better these days.
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LivCar, Just saw your post. Looks like we're all on at the same time today. Thanks so much for the compliment. I'm about 10 months out from my last TX so the hair that I did lose is back and about 3 inches long. That would be nape of the neck, widow's peak and you may be able to make out my regrown sideburns in the video. You'll do fine too.
Jan. 20, 2010 Left breast nipple sparing immediate 1Step reconstruction with Alloderm. No SNB. Oncotype DX 25. 4 rounds Taxotere and Cytoxan
Diagnosis: 10/27/2009, IDC, 1cm, Stage I, Grade 2, 0/0 nodes, ER+/PR-, HER2-0 -
NewBride - loved your video. What a great service you did...I hope the word reallly got out!
LivCar - hang in there and watch the SE. Stay on top of the drugs, they are your friend.
Leeann - I am praying for little to no shed this time!!!!!!
Arlene - Those steroids are wacky. I am up to all hours. I joke that i should be hired out during the days post chemo, I have too much energy. My heart feels like it will jump out of my chest. I hope the shedding is manageable....
Tomorrow is MY LAST CHEMO! I am the most nervous and emotional ever...wish me luck!
Annie
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I find that I have had to be strict about combing through at least once a day or it gets really knarly under and even on sides. I lost probably 1/2 of my hair on day 25 after first chemo- which was four days after second chemo due to the fact that I was so afraid of combing that I kept tying it up and just trying to leave it alone- then I washed it and could not comb it through at all- had dread locks all over. All my gentleness backfired terribly and it cost 60 dollars for a hairdresser to comb it out, and even then, I had to spend two more hours with help from anther person, the next day at it. Very disturbing as I lost so much hair from that....I now have about 1/4th the hair I had before the treatments, HOWEVER, I still have more hair on my head than what I shed each day now that I keep it up. I have such a little bit of hair but it is pretty evenly distributed except for some small bald spots which seem to cover pretty easily. Good luck to all of you!!
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