Cold Caps Users Past and Present, to Save Hair
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Hi Farmerjo,
I am using PCC's and have completed my four A/C's. Tomorrow I will have my 9th of 12 Taxols. I would also recommend cold capping even though I've lost half of my hair. My hair is very long and thick and other than close friends and family, no one can tell that I'm going through chemo. The hair on my crown has thinned dramatically and I do have a bald spot. But I haven't needed anything other than a wide headband and some Toppik when I go out. Most of my loss occurred during the first 6 to 7 weeks of A/C treatments. At this point I already have hair growing back. Baby hairs started growing about a month ago and shedding is now what I typically experienced pre-chemo. Hopefully I'll continue on this way! The big sheds are traumatic and I did have my share of meltdowns, wondering whether I'd have any hair left at all. Thank God for all of the brave women on this site who have shared their stories and information. If you do decide to use Penguin I would also suggest getting the extra bands for thick hair. I did and they make the caps fit better. Best of luck to you
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Had a check up with my MO before Taxol and Herceptin yesterday. I gained 5 bs in a week , I assume it's water retention to, since I eat good and Exersise....I have puffy face, swollen legs and big stomach.... When will it go away?
mo said No to decrease of steroids
and wen I complained about how I look , he said that vanity is bad..that people should like me for my personality instead. well...I don't know we r still women sick or not we do want to be somehow attractive, aren't we? I was crying on Monday after we got home from party and my friend send me party pictures. One thing is bad hair day.other it's some circle on pictures not myself...no more pictures for me!MO also looked at my hair and said wow it seems it is working..and even pooled my hair. And I started screaming.. No!! Can't touch it! His head nurse also was checking my hair and saying that they look good. so hope it will stay this way for next 2 times I have left with no shedding surprises after I am done with chemo..... 1am steroids keep me up. Took half of Xanax pill hope to fall asleep.
Ladies, thank you for sharing your stories and experiences. It really helps.
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Hi all. I'm looking for anyone to share their Taxol x12 stories. I just completed my 4th round last Thursday 6/30. So far so good. 4 down 8 to go. Caps may or may not be working. I'm still shaving legs and underarms so I don't know if I still have my hair due to cold caps, or if I'm just lucky. I have had minimal shedding that is really no different from normal shampooing. I have some dry scaly blotches, but no bald spots. Geralyn recommended 3 parts water to one part apple cider vinegar, didn't really see a difference. I've been using a fine hair net with some gauze to cover sensitive areas. I have fine hair, but a lot of it and it's straight. Roots are unsightly, but I can't complain. Anxious to hear how others are faring. Anyone loose after 5th 6th, etc. treatments?
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Dear Glm17, welcome to the Breastcancer.org community. We hope you find it to be a place of support and helpful information! If you need help around the boards at all feel free to send us a private message.
Warm wishes,
The Mods
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thanks!
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farmerjo here is the sum of it, if you don't cap you will be totally bald.
With your hair length and thickness you're shedding will look insane! My long hair made it seem like a ton of hair and I had even cut it from waist length to above shoulders. So even if you shed a little it will look like A LOT! I would recommend cutting it some. You must get the extra gel bands and you must make sure that cap is on tight EVERYWHERE! I'd get 8 extras if I were you so that they are at optimum coldness.Your thickness will really hinder the cap getting tight so you're going to have to be super vigilant on close toght contact.
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glm17 - cold capping works really well with 12 weekly taxol. I had almost no hair loss from my head, although I lost hair elsewhere on my body (but not until sometime after the midpoint of the process). As long as you are getting the caps tight to your scalp you will do fine. My Penguin rep told me to be sure to push down on the caps periodically to make sure they are getting good contact - particularly at the back end of the top of your head, where people are getting bald spots (see pictures posted by others above).
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Hi all! Just checking in and glad to see so much activity here!
I completed 6 rounds of THP on April 27. I kept nearly ALL my hair with Penguin Cold Caps. I just started washing in the shower again, and so far, so good. But I take a hot shower and then turn it to tepid to wash my hair. I hope that is OK. And I still am not planning on using a blow dryer for a while. Thank goodness for summer!
Also, my lashes are FINALLY looking better. They were still really thing. I have been using Latisse off and on. I upped it a little and even started putting it on the lower lids. And now I have these silly little double rows of lashes! But I'll take it.
I also was unhappy with the weight gain and swelling from steroids. And same thing, my MO say no when I asked about reducing the dose. But I'm happy to say that about a month after I ended chemo my face looked better. And now about 2 months later, I'm almost happy with my weight again.
Hang in there ladies! And bad hair day (less hair, dirty hair, frizzy hair, humid hair, whatever) is better than a no hair day!
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Viktoryak - love your pictures! I want to be done with cancer and done with this site though I keep coming back to check on friends....keeping it light. Great job!
Hikerchic - love your screen name, then noticed how young you are!
Congratulations on your pregnancy, I hope things go well for you and what was the crappiest time of your life now turns into the best. God bless you and your little one!0 -
PatinMN thanks for the insight. My husband and my dad have been capping me and are both doing an excellent job. I don't need the extra gel straps because I dont have thick hair, but we use 3 extra bands to keep the caps extra tight against my scalp. A professional capper that was working on another patient came over to my dad one day and he was a wealth of info and showed my dad how to use a third strap.
Unfortunately, I just learned a few hours ago that my liver enzymes are elevated and they want to switch me from a Taxol to Abraxane,but first they have to get my insurance carrier to approve it and also see if my levels go down. I went in this afternoon for blood work. I will get Herceptin this week, but I probably won't get the Abraxane until next week. Also the Abraxane is every three weeks. If anyone has used the caps with Abraxsne, please let me know how you did or are doing.
I agree with JCS28, grey roots and frizzy hair is better than no hair. Hopefully, my resolution will not be altered by Abraxane
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Glm17 - abraxane is the same chemo as taxol, but mixed with a different solvent (for lack of a better word). I believe abraxane is quite a bit more expensive due to the different mixing agent, which is why your insurance would have to approve. You should have the same results as with taxol, except that if you're getting it every 3 weeks you will have a stronger dose, so it would probably cause more shedding than the weekly dose.
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THanks everyone! I just noticed some crazy little bald spots near where the "sideburn" area is. Now looks like I have Grandpa Munster side whiskers if that makes sense...lol. Regardless of what we keep or lose, I believe we have a head start on regrowth once complete. AC is a bear, but we are taming it.
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Glm17, I am on 12 weekly Taxols. 10 down, 2 more to go! So far hair OK.Some shedding but nothing so horrible yet. As I mentioned before, my MO yesterday during check up, looked on my hair (even tried to pool them,lol) told me that caps seems to work good on me. I read some stories here that shedding may start on Taxol after chemo done plus eyebrows and eyelashes might fall off a month or more after. I am using Brian Josph's gel for eyebrows and eyelashes. Hope it will work and no surprises a month or 2 later. There was a lady in the waiting room, I was talking to, who finished with Taxol and doing only Herceptin now. She told me her eyebrows fell off one morning a month after she was done with Taxol, and it was Xmas... How horrible and cruel it is!
Hikerchic, how do you manage being pregnant, going trough chemo and doing cold caps! You go girl! My prayers with you!
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http://www.nisim.com/Fast-Shampoo-s/5.htm
Found out about this on a chemo tips site. Worth trying👍👍👍
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PatinMN-Thanks, after doing my research last night I came to the same conclusion. I'm at treatment today without caps bc I don't need them if I'm only getting Herceptin today. Liver enzymes dropped. Still a bit high but not worrisome. Still no word from insurance company. Hopefully, I will be able to resume treatment as scheduled next week.
Phala-I purchased the NISM Fast Shampoo and. Conditioner a few weeks ago, but haven't used it yet.. If anyone has, please share. I'm going to try it myself.
I'm also using Latisse on eyelashes and brows with good results so far.
Viktoryak-love hearing about your overall success. Have you lost body hair? I have not at all. Still have my fuzz on arms and still have to shave legs, bikini. Only under arms has slowed a bit.
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Glm17, I lost some leftovers that grew after laser on my bikini area, but it's funny some hair still there -kind of fashionable piece of bikini area.. very small but there.:) No underarm hair anymore. Leg hair i have few here and there but almost none, but also I had laser on my legs, so not so sure. I still have hair on my arms a bit... So it is kind of strange. Eyebrows much thinner but still there.
Yesterday, my husband noticed a boldish spot on the top of my head, not so bad but if you brash hair certain way you can see some kind of wide area of boldish.. not even a huge spot but for sure much less hair.. So, will see.
Girls, what is the difference between Lateese and Brian Joseph's anyone knows what is better to use?
It's day 2 after chemo and I can see how bad steroids effect me.MY mood is over the roof. I am ready to cry for no reason...well. not like we don't have a reason.. we do.
I am so swollen it is so sad to look at myself. I forced myself to do spin class in the morning with my elephant ankles......
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Phaila - Thanks for sharing the info about Fast Shampoo. I'm going to give it a try to see if it will help the hair I lost during A/C grow back faster. Three more taxols to go and the hair I lost everywhere else has all grown back, including that one annoying little whisker on my chin, lol. You also mentioned using Brian Josephs gel for your brows and lashes. Where did you find that? Over the last couple weeks I've noticed mine getting a lot thinner and from what I've read here there's a pretty good chance that I can still lose them all even after treatments end. Would it be to late to start using it now?
Victoryak - Your pictures are adorable! Thanks for sharing a lighter side to all of this. You're beautiful - stay strong! It looks like we're at about the place with our taxol treatments. I dofeel for you; I'm suffering from swelling and sleeplessness too that nothing really seems to help. My MO isn't very compassionate about my appearance either, or the emotions involved. My nurse yesterday was helpful in getting me prescription for Ativan which she strongly suggested I use for the sleeplessness. My sleeplessness lasts 2-3 days so hopefully this will offer relief. I'm looking forward to the end of the month when this phase of treatment will be over!
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Victoryak,
Are you able to take Benedryl? I swell around my eyes and cheeks and taking that does help a little. Unfortunately nothing is helping my bloated tummy 😞 I just try to walk every day and sit with my feet propped up..
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BlackRockPB-I so glad you mentioned the stomach bloat, not that you have it. I have it too. I had DIEP flap reconstruction and was supposed to have a tummy tuck. The only time my stomach is even remotely normal is when I get up in the morning. I have the big D most days and lomotil has only helped slightly.. No matter what I eat, stayed on strict BRAT for a week with only egg whites and plain fresh chicken soup as my proteins. Made no difference. With the 6 bottles of water they told me to drink, I feel like a beached whale! My stomach is so distended.....
I did get good news. My insurance company authorized the Abraxane and I will infuse tomorrow. I'm so thankful that I will be staying on track. The nurse also said she believed the doctor was going to prescribe weekly instead of every 3 weeks. So looking forward to August 25th!!
I had to get a prescription for Latisse. It's expensive and not covered by insurance, unless you have glaucoma. I believe it's the same drug, but for cosmetic use its not covered even for cancer patients. I tried and United Healhcare told me no. I've never heard of Brian Joseph's gel. Is it OTC or prescription?
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BlackRock, I was actually told by nurse I can take benadryl at night to help with the sleep. I wonder it also will take care of swollen eyes as you say, but I doubt because they give me benadryl anyway before every ejection....
I usually take xanax (or whatever generic name for it) for first 2 nights after chemo. Sometimes if I can't sleep I also take it during other nights but half of pill. My problem is not falling a sleep but waking up so many times in sweats and then can't fall asleep.
Here is a link for Brian Joseph's.It was recommended to me by Arctic Cold Caps rep. but she told me to start using on the first day of chemo twice a day. So, I am afraid it is too late for you.
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Viktoryak-Thanks for the link. It's a lot cheaper than Latisse,but yes it's too late for me.
For sleeping I'm only taking OTC Diphenhydramine. I agree the first two night after treatment are awful. I took Xanax pre surgery for anxiety and to sleep. You may want to see if your doctor will up the dosage for a few weeks until you are done if the Ativan doesn't work.
My night sweats seem to have been less since I started chemo, I'm probably older then you are, I'm 53. They are the single most annoying part of menopause. It's so unfair. When were done having kids we can't wait for cycles to stop and once they do, bang hot flashes!
Even with central air, I have a ceiling fan and a tower fan on my side of the bed. Ceiling fan stays on all night. As soon as I feel a flash coming on I turn on the towers fan for an extra blast until it goes away. I got one that you can set to go off on its own.
Good luck! You're almost done!!
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My understanding is that Latistte keeps lashes in growth mode so prevents them falling earlier. Brian Josephs is a conditioning lash and brow gel.
My MO was not in favour of using Latisse , her view was wouldn't work in chemo. I have used latisse from second THp and kept most lashes and brows have thinning . However, some people loose lashes/ brows post chemo so not sure of final result.
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about 5 weeks after last chemo I noticed my brows were thinning and they were very scattered about it. About as soon as I noticed them thinning all of a sudden they were sprouting new hairs all over. I've read that it usually happens that way to just about everyone:)
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Hi!!! I'm new here... I started chemo June 13th- 4 days before my 44th Birthday. I'm cold capping using Penguin caps, have hired someone to put the caps on for me, every 24 minutes and have been following all the rules. My treatment is 4AC + 4Taxol - which I've heard is a hard chemo to keep hair even with cold capping..
I started shedding on Day 21 and it seems to be continuing (not as bad) I lost some around my ears to be expected (plus I wear glasses sometimes, so I'm sure this had something to do with it..
Just wondering if anyone has had my treatment and been successful? Also, has anyone gone swimming while cold capping and just rinsed their hair afterwards?
Thanks
Dx 5/19/16, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR+, HER2- , 2nd tumor Left, 2CM, Stage IIA, Grade 1, 0/3 nodes (I think) ER+/PR+, HER2-
Surgery- after chemo TBD
Chemotherapy: Adriamycin, Cytoxan (cyclophosphamide), Taxol (AC 4 treatments, T 4 treatments
Radiation Therapy none (as of right now)
Hormonal Therapy TBD
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Glm17 - Happy to hear you received approval for Abraxane and are staying on schedule! Hope everything has gone well for you today. I am very sorry, though, that you're having the same stomach issues that I am. You're not alone feeling like a beached whale! I wish I had something brilliant to suggest, but unfortunately I don't. I've had ongoing problems since right after my surgery. Lomotil doesn't really help me much either, but I continue to take it as prescribed and limit my diet because it's much worse if I don't. I have three treatments left and I'm hoping once I'm done my body can start finding it's way back to some sense of normal.
Victoryak - Hope you're feeling better today. Last night and the night before I did take the Ativan I was prescribed. In spite of the steroids, it did help me relax and fall asleep easier. I usually wake up multiple times with night sweats too, but last night I woke up only once and was able to fall back asleep. I know not everything works the same way for everybody, but it might be worth asking about so that you can maybe get some better rest. Thanks for sharing the info for the Brian Josephs gel. Too late for me too, so crossing my fingers that if/when my lashes and brows do thin a lot more or fall out they'll grow back in fast like Phaila's did. Eyeliner is becoming my new best friend...
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BlackRack, yes if I take Ativan it helps with sleep but I prefer not to do it every night not to get addicted. This night was horrible with sweats. And today I have chills whole day and if I dress warmer then I get sweats..it's horrible.... I think I read that some people get chills on Taxol. The good news is today is my hair wash day! Clean...i sheded more as usual but it's not drastic and another good news my ankle swelling is less now then yesterday.
Dreading the night and it's sweats.
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dlk617 - I jade dose dense ACT - infusions every two weeks - used PCC very successfully. I had typical shedding at nape and above ears. It was very stressful and my shedding seemed not to cycle but instead was consistent throughout treatment. At the end, I had a wide part and one small bald spot on top , easily covered with wide headband. Very glad to have done it despite hair looking a bit craptastic.
Best wishes to you. It's doable and cold caps works but very emotional getting through it. Though I could not get through another stemmed m. I was wrong.
Mood luck to you.
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Kazzy - how long did it take for the wide part and bald patch to fill in and look closer to "normal" after chemo?
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Had my second treatment of TC yesterday and am feeling good, but my hair is really shedding a ton. I thought it was a fairly even overall shed but I combed my hair last night after capping (probably a big mistake on my part), and SO much came out. If I don't comb, my hair gets so many knots, but if I do, I comb a lot out. Ugh. I noticed this morning that I am losing a lot of hair at my crown and it is forming a bald spot. I think we made a mistake in not using a strap under my chin to hold the cap down on top the first two sessions. I have two black elastic straps and we use once over the seam between the cold strap at the back of the head and one at the upper back of my head around to the temples. Will definitely do under the chin for the last two cycles. I ordered some Toppik today and got a wig that is really pretty so at least I have that as a backup. I plan on sticking it out and capping for the last 2 treatments but part of me wants to just say F it and shave my head. Watching it fall out is stressing me out. However I know that even with the bald spot the capping is keeping the majority of my hair and will make the regrowth process better/faster seeming. Just will have to rock the Toppik and wig more than I was planning. Okay rant over!
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Runner- wow! You would never ever know that your top was bald!! Your hair really looks truly great:)))) It even looks healthy❤️ I'm sure once it starts filling in you'll be back to normal
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