Cold Caps Users Past and Present, to Save Hair
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Hi Willa2016,
My hair loss started after the final chemo and I am now 13 weeks PFC and it is still shedding. Luckily I had thick hair to start with! I have loads of re growth so can wear my hair back and it is passable. In hindsight I have been going to the gym every other day which is not ideal for avoiding hair shedding. Also I live in Spain and it was very hot whilst doing chemo which is not ideal for hair follicles either.
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well done runner! I am doing a half marathon tomorrow! Ir was planned before i was diagnosed and i did it last year. Running with the expander can be uncomfortable. I find that running keeps all the bad thoughts at bay!!!!
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KD - I guess it's a good sign that I lost count. I'm starting to count in months - and looking forward to counting in years. My husband encouraged me by reminding me that I only have to take Arimidex for another 9 years 10 months. (I actually got a laugh from that). I'm so glad your return to work has been a good distraction....I agree!
Looking forward to November 1 so the October PINK that is pervading the atmosphere will go away, and I can forget about breast cancer for a moment or two.
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Aimless - Your words are always comforting. Thank you.It makes me feel good to know you felt better after 6 weeks PFC and that your hormonal therapy is going pretty well.
KD - happy to hear that work is a good distraction from some negative thoughts and hair is coming in! Hope next week is good and you feel a bit less tired.
Fighting - Good to hear Dignicap is in the Midwest. I thought only SF and NY. If it helps, it's a pain to go to the bathroom even with the penguin caps - at least for me They weigh 1,000 pounds (well, 3) and I can't maneuver by myself with all the drugs on board. My husband has to take me! Also, I get the ice crystals sometimes and I don't even wet my head (you don't for PCC).
Runner and Jane - Wow. You two are remarkable and so inspirational with your running! Hope today's race was fantastic for you, Runner. And Jane, best of luck to you as well.
Runner - I'm glad to know my doctor's suggestion was helpful to you. I'm attempting to move from a dark space where I feel my relationships are now less than real to one where I know deep in my heart they can still be loving and beautiful. Maybe I just need to change my stride a bit as a wander amongst them.
Peace to all.
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Forgot to ask -- For anybody who has had issues with facial steroid/chemo puffiness, can you tell me when it gets better?
I thought maybe that was the one side effect I might avoid, but after 10 of 12 infusions I have horrible puffiness in my cheeks, in my eyes and across my nose. Is it even possible to get a puffy nose. Really??
Anyway, if anyone has anything encouraging to say about how long it takes to see your face again, I would be grateful!
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Jane- how did your half marathon go? I hope you felt you finished strong! I ran my fastest 5k since I started chemo. I have a ways to go before I can get back to my old pace but yesterday was a good start. I'm running in a 10k Saturday and that will be my longest run in quite awhile. There's nothing like signing up for a race to get you motivated
Willa- I've been on and off steroids several times through all this and I can tell you it takes several weeks of being off them for that red chipmunk look to go away. It's frustrating for sure, but just know that it isn't permanent and it will resolve. Try not to eat too much salt and that will help a lot! I got a lot of fluid retention from chemo and had to take a diuretic for several weeks to get the fluid off. Just be patient.
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Hi Runner
I finished the 22km in 2 hours 2 minutes, a lot slower than I used to do but it was great as it made me feel normal again!!!!
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Just had my 1st infusion Friday with Paxman cold caps. Ended up running behind so I had pre cooled a lot longer than expected. Totally tolerable after the 1st 10 minutes, although I was shivering during the one infusion when they had me fill cheeks with ice chips. Really worried about my head heating up though from exercising and then today I had a nap and when I woke up my head was sweating. Will this have a negative effect I wonder?..I know I'm on a tough drug for the hair. I really would like to keep exercising when I feel up to it. Doing well with side effects so far, just a bit of a sore stomach, but eating fairly normal...they tell me Monday or Tuesday could be rough. My bladder is burning, but I have bladder cystitis that is usually controlled with homeopathy, man if that would settle I'd be happy!
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Girls, congratulations on half maraphone!! You are amazing. I am exercising every day but can't run more then 5 miles
and it's more like run and fast walk mix.... Willa, it took me a while for puffiness to go away. Probably 5 weeks at least..sorry....I lost about 12 lbs after finishing chemo.that's how much water retention I had.
Daisy, I was exercising every day through chemo and sweating a lot. My hair fine. I even had portable fan with me blowing during my runs or spin.;)
P.s. We ordered a pink troll wig for my husband for Halloween Party at friend's house. He will be a pink troll wearing all pink including pink puffy slippers and tights.lol. ...I thought it's funny;).
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16 1/2 weeks PFC and think I am finally back to normal pre-chemo shedding! Did people start to wash normally with warm water etc. at this point? When are the brows and lashes expected to fall out for the second time?
Runner: I took ovarian protection Lupron shots during chemo, too and waiting for my period to return as well. Let me know when you get yours!
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Is it a given that we all will lose eyelashes and eyebrows second time around?
16 weeks PFC and I'm still using Latisse fearing the loss again. As if dealing with the hair shedding and regrowth is not enough
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Runner and Viktory - thanks for the insight on the steroid puff. At least it seems that it will go away...in time
Jane - you look so healthy and lovely. With lots of hair!
Good luck, Daisy!
Viktory - it sounds like you are feeling pretty good what with the Halloween costumes and party! Hoping so.
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KD2016: I hope not! Hoping to get some input from other ex cappers/hair conscious ladies on here regarding lash/brow loss several months PFC.
I am using Latisee too (to be more precise Lumigan, was diagnosed with early glaucoma mid-chemo so rx came in handy, lol) and my lashes are thicker and longer than ever after a brief 50% loss right after last chemo.
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Heidi - I am definitely back to warm water showers - and washing my hair 2-3x a week (I had been at every 8-10 days for a while) AND even using a blow drier. AND I am LOVING how much more "normal" it is. I feel like I've reclaimed my shower. I threw away the shampoo and soap I was using during chemo - the smells reminded me of being sick. I am using Dove soap and Fast Shampoo and Conditioner. My hair is growing in wild - but it's growing in. Not shedding either.
KD, I'm also still hanging on to the lashes and brows - at week 16 pfc.
When did they fall out for those of you who lost them a second time?
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Aimless - I can't wait to start washing my hair in the shower. Still afraid, and washing in the kitchen sink and cold water every 5 days. However, using the blow dryer on cold, slow setting. Washed it tonight and shedding after styling it was a bit less.
Brows and lashes look good and hope to God none of us lose them again.
Have a wonderful rest the week.
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I have 3 friends who had cancer. They never lost eye lashes or eye brows second time.
Willa, I am trying not to think of bad cancer staff and to enjoy life...It is not always the case. But I am looking forward to Halloween party and my husband to demostrate very funny pink Troll costume.lol. I have pink elements costume to but no troll hair for me;)
how are you ladies on hot flashes? I have terrible night sweats . but not tonight...but I can't sleep tonight anyway
Anyone on Tamoxifen now? How is it going for you? Any weight gain? So far I am ok but I am only 2 weeks on it.
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Hey, Quick question...tomorrow is wear pink for breast cancer day at my 13 year old sons school. the only shirt i could find for him is the one that says "F..pink ribbon...CK CANCER" do you think its inappropriate?
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Well, here I go again. I finished ACF two months ago and now my MO and RO want me to do a 12-week run of Taxol. How has response been to Taxol regarding cold capping? How long did the infusion take and how long did you wear the caps after Taxol? Any info is GREATLY appreciated. I managed to keep 70% of my hair during ACF and I refuse to let Taxol take the remaining!
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hikerchic - cold caps work very well with weekly taxol. I used Penguin cold caps and ended up losing only a negligible amount of hair on my head. The taxol itself took about an hour. The whole cold capping process, however, took about 6 hours. You have to start capping 50 minutes before the taxol infusion begins (which is about the amount of time my pre-meds took). Then after the taxol I continued capping for 4 hours afterwards, as directed by Penguin. I think it probably would have been OK to shorten that time a bit, for weekly taxol. (Probably not for the harsher chemos.)
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victory- it's good to hear from you! I started tamoxifen almost 2 months ago. I never had night sweats and at first I would get quite a few hot flashes but now I only get one at 9pm every night. I had terrible drenching night sweats all through chemo with the Lupron shots. I started taking clonidine to help with that. Finally my body either adjusted or I started making just enough estrogen to ward off the night sweats after the last Lupron shot wore off. I hope it gets better for you. I looked into taking black cohosh but it has phytoestrogens in it and my oncologist said it's really not recommended even though all the alternative medicine people love it. I don't want to do anything to encourage my cancer from coming back or growing.
I've been pretty down. I have a friend from church, younger than me. Started out with DCIS 5 years ago and for whatever reason did chemo with it. She's on her 3rd recurrence and is now on hospice. She has mets in her liver, bones, lungs, and brain. It's scary. I thought DCIS was the good kind yet hers kept coming back. There must be something I'm missing with her original diagnosis but I don't want to ask her. I'm starting off at 2a with lymph mode mets and no matter what I do, I could end up dying in 5 years too. How do people learn how to live their life and not constantly worry?
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Well, so much for my hair. I kept 90% through taxol, 80% through A/c. Then 5 weeks after chemo stopped, my hair started falling out. I am now 8 weeks post and I hardly have any left. I am not completely bald because there is some that is shorter and seeming to stay put. But SO thin and see through.
I am still glad I cold capped. I had hair for 5 months that I wouldn't have. It was good to go through chemo and still have my hair. But losing so much this late is pretty depressing.
I am wondering if I can just treat the new hair that is starting like normal hair. Meaning, not worrying about 4 months of being super careful.
Any thoughts?
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SusanBP that sounds exactly like me. Once I saw my brows, lashes and other hair coming back I finally gave up on the small amount of longer hair, cut it all closer to the shorter length and started taking warm showers again. I will be 12 weeks PFC this week, so I was about at the same point you are give our take a week when I went back to normal hair care. So far, so good, hardly any shedding now (and what is shedding seems to be the last of those longer hairs.) Actually, I think the hair I have is quite strong and healthy. I still look like I had chemo, but I agree with you, at least I had the past six months with hair, was worth it and I have enough to go without a hat or wig now. It took a couple weeks for the thin spots to fill in so I wore a baseball cap a lot but now it looks decent (relatively speaking, lol.)
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Aimless: Thank you, I finally washed with warm water in the shower for the first time yesterday and it felt soooo good. I did however use the same sulfate/paraben free shampoo and conditioner and finished with rinsing with cold water.
viktoryak: That is good to hear reg your friends not having a second round of brow/lash loss! I have been on Tamoxifen since Oct 1 and lost weight (which is not a good thing in my case since I have always been underweight). I also took Lupron shots throughout chemo and did not gain nor lost weight.
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hikerchick, you should be fine with Taxol! I kept all my hair on it;) although , I think some came out but on the top of the head such a small amount that I had no idea they were gone. The only reason I know now because I noticed that I have a lot of shorter than the rest hair on a top of my head.
Yes, ladies, it's so good to enjoy hair as before with hot showers and hair products. Even though, I am so used to not washing my hair every day as before that I continue now with doing it only every few days.
Runner, I am so sorry about your friend. I am like you scared of these kind of stories and always have cancer on my mind. But my husband keep tell in me: " you not them, everyone has their own story...doesn't mean you will get it " And there also many good stories. Like I went to tennis support group and there 94!! Years old woman a surivor who had bc back in 80th and was told she will die in a year. But she was playing tennis better than me So many years after
... So I hope this will help you to have a piece of mind.My friend recommended some dr. here on East coast who uses some microbiology diet or something like this. A friend of a friend had bad case of a cancer but fine for many years after following his diet and life style change. I am planning to research it. Anyone doing non traditional or diet things?
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Last day! Last day! Last day!
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me too, last day!
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Ladies, you look so cute! Congratulations!
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jstan - what did you decide to do about the shirt? That's a tricky one, I think, but I don't have kids so I'm not one to be filled with advice..
hikerchic - ugh on the additional chemo. However, I'll agree with others here on the Taxol only regimen. I've seen a number of cold cappers at my infusion center who have fantastic hair with that chemo. When I started chemo and was going to have only Taxol the NP and Onc both said that's the easiest for hair. Best wishes to you!
Runner - so sorry to hear your heartbreaking story about your friend. I'm in the same boat as you in terms of fears. There are so many stories like your friend's. On the other hand there are so many stories of survival, too. As my onc said last week, it's still a mystery why some people do so well and others don't, even when they do all the prescribed treatments. Not comforting but honest. She said that her joy in oncology comes from treating breast cancer patients because it's awe- inspiring to watch women go through the process of learning to live good lives in the face of profound uncertainty. I asked her how you do that because I am a wreck, which I'd like to blame on chemo brain but can't. All she said was that the answer is different for everyone but nearly everyone gets there. That said, I've decided to see a therapist who specializes in treating cancer patients because I can't talk to my husband, family or friends about these fears without setting off theirs and causing a big mess. I hope this doesn't sound negative - I don't mean it that way. You are not alone of course. I'm sure we are all just trying to navigate this challenging, scary and still beautiful world.
Viktory - Your husband sounds like mine! Thanks for sharing about your 94 year old friend. Wow, tennis at 94?? That makes me feel just a tad sluggish...
I've done a lot of alternative medicine in the past. And I do acupuncture. As far as the special diets I think you can find a multitude of practitioners who are going to suggest different diets are the way to go. It's been my experience over the years (not for BC - for other issues) that each person I've seen has had a different perspective on what's best based on their own training and that particular bias. That can make it hard to know what's right and maybe there isn't one answer. The people I've spoken with recently are generally in agreement that with BC we should eliminate or limit dairy, sugar (and minimize fruits), red meat and alcohol. No processed foods at all and tons of vegetables! The guy I'm seeing now is big on a four pronged approach - diet as above but vegetarian, serious daily meditation, daily tai chi or qi gong plus workouts of varying type and intensity (changing it up is very important to immune system health) and acupuncture. Anyway, just sharing. I was already eating this way, exercising religiously and doing acupuncture for many years before I got BC. So, now I'm focusing on adding meditation and qi gong. It feels like a lot to do. Sometimes I think it's stressful to have all these opinions because now I'm wondering if I can do it all? Then that adds stress and that's not good either! Bleh. Maybe it's just a matter of finding the foods and activities that make your individual body feel healthy (no inflammation or extra weight) and calm. Just focus on that and doing things that bring you joy, and don't be too rigid? Sorry to ramble. This topic is big for me right now in case you can't tell
Anyway, happy halloween to you and your "pink" husband.
Susan and Meg - I'm glad you both have hair even if it is short! That's something. You give me hope because while I still have hair it is getting much thinner and I'm worried now about PFC shedding. I hope it will hang on but the PFC shedding seems rough. I will be done with chemo next Friday.
Heidi - thanks for your info on Tamox and Lupron.
Kechla - Congratulations!! How are you feeling and how is your hair?
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kechla and tunegrrl - congratulations!
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Congratulations Tunegrrl!!!
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