Cold Caps Users Past and Present, to Save Hair
Comments
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Darn - Day 20 and shedding alot. There is one area above my right temple that has thinned alot as well. No large clumps coming out, just shedding when I comb it daily ( 1 time a day only) with a wide tooth comb. I think I read somewhere that if you have hair on day 21 you know the caps are working? 1 more day to go.....My husband says he cant really tell it has thinned on 1 side.....(he is just a sweetheart, because it is pretty apparent to me) So happy to read that most have had shedding and still have hair PFC.....
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Today was my last chemo. Everything went smoothly with the tx and the caps. I can't express how happy I am to be done. I know I still have to pay the piper as far as SEs, but it's good to know that I don't have to go back again. I can't believe I made it through 8 sessions with the caps. I remember early on when I thought there was no way I could do it 8 times. But guess what...I did! Hang in there ladies. It is so worth it. I'll keep you posted on PFC. But just wanted to take a moment to breathe and enjoy this moment (with hair!).
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Victorious - WOOHOO!!!!!! So happy for you. 0
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Dance,
Thanks for sending the info on the prosthesis - I'm going to look into it - I love having options to consider -
Sashette - I have this wonderful image in my mind of you spinning around with a big ponytail and a bright smile on your face - thanks - makes me smile.
on shedding - I definitely had the most after shampooing - and I think it might have been the build-up of loose hair as someone suggested - but the real shedding for me didn't start until PFC - then it was awful for a while - I'll be 14 weeks PFC on Wed of this week and it has slowed down considerably - no bald spots - ever - but some pretty thin spots that needed creative combing.
Hope this helps - Lucky
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Victorious - HUGE congrats!!!
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victorious2012 - My daughter had her 2nd chemo treatment last Mon., and unfortunately, her hair is falling out in clumps. She is only 31 and very discouraged... said she has already lost 40% of her hair. She went through fertility treatments 2 weeks before her 1st chemo treatment, and then had surgery to have her eggs retrieved and frozen. She is now taking monthly Lupron shots to supress estrogen/hormones, which threw her into temporary menopause. She is having hot flashes like crazy... waking up soaked 3 times a night and having to change her clothes. She is in Atlanta, and I am in Indiana, but I have been going back and forth for her chemo treatments and cap changes. She called Geralyn and told her what was happening, and Geralyn said that she was probably losing hair faster because of the hot flashes.
Geralyn told her to wear the caps as much as possible (around the house, while watching tv, etc., that she would probably lose more hair, but it would grow back faster), but my daughter doesn't think it's worth it. She said that hair is everywhere... all over her house, clothes, bed, car, and she filled her trash-can 3 times in one day. She called me this morning and said she was going to shave her head. Such a bummer!! I wonder if anyone else on this forum was on Lupron while having chemo and using the caps?0 -
portishk, I am SO sorry to hear that!!!! I can't say I blame her for wanting to cut it off now. Sometimes, you only have so much energy...and especially if you are having a tough time with chemo...adding this on when there is a real question about whether it is really working or not could just be too much to handle.
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What type of chemo is she on Portishk? That could make a difference too.
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Victorious - congrats on joining the PFC club!
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portishk,
I'm so sorry to hear this - chemopause sucks - it's hard to say whether her hair loss is just normal - some of us shed more than others - or if your daughter's emotional state (she certainly has alot to contend with) is making it seem worse than it is. Whatever decison she makes right now has to be the right one for her though. I wish you peace and a quick journey through treatment.
Lucky
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MGD - I'm not sure what type of chemo she is on, just know that it's every other week for 8 weeks. I'm going back to Atlanta for 3rd treatment Mon., April 22nd, and I'm going to write down the names of her chemo meds.... or I'll ask her next time I talk to her. She gets so tired of talking about it, but I know she has an apt. to have a Mohawk at 4pm tomorrow. So unlike her, but what better time to do it; right? She has (had) such long, thick, beautiful hair almost down to her waist. I just hate to see it go, but it's her decision.
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Luckyjnjmom - this kid... I guess I should say "31-year old woman" is the most positive person I know. She runs a non-profit in Atlanta, GA (onelovegeneration.org) and hasn't missed a beat! She matches local artists with underpriviliged inner-city kids, and teaches them art through service. I went to an art meeting with her a few days after her last treatment, then to a radio interview in Atlanta. She tries not to focus on the fact that she has breast cancer... and doesn't really like to talk about it too much. To her, it's an obstacle she needs to overcome because it's disrupting her busy life! She lays in bed all day some days... but she's constantly on her computer and her phone working for her non-profit!
Anyway, Geralyn told her that her body was "over-heating" which is why she is losing more hair than most... so many hot-flashes. Personally, I think the Lupron has a lot to do with it too... but I just don't know. She is scheduled to have a Mohawk at 4pm tomorrow, and my 77-year old Dad is going to have one too! I'll have to get pics and post them. She said that the hair has to go... that she feels like bugs are crawling all over her, and hair is everywhere (car, bed, desk, carpet, her clothes, her fiance's clothes, etc.), so she is over it. Thanks for all the kind words... they are much appreciated.
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portishk- I think you're on the right track in believing the Lupron hormone supression is the cause of your daughter's hair loss. I have helped many women with the caps. Most recently I had helped a woman who had 4 treatments of TCH-Taxotere, Carboplatin and Herceptin. She was also receiving Lupron shots. She lost little hair until her 3rd treatment. I was surprised when I saw the amount of hair she had lost between those treatments. She still had the majority of her hair-it was just thin in areas which I don't usually see thin. She was able to hide the thin areas at the back of her head by wearing a clip in her hair. Her hair was long and lustrous. It seems your daughter is having an unusually difficult time. I know you don't want her to lose her hair but, it might make the whole 'chemo process' easier for her to deal with. Is she aware that the Taxanes can cause permanent hair loss?
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Portishk: I'm so sorry to hear about your daughter and her hair loss. It's hard to come to terms with it when you think you've found a solution. I too am suffering from what I think is excessive hair shedding. I just completed my 3rd (of 6) TCH and my hair is so thin. I guess I should be thankful that I am not bald but I've lost much more than I thought I would. I am not taking Lupron but I do have quite a few hot flashes. I don't plan on cutting my hair off but it's getting really hard to hide the changes in my hair.
Victorious: YAY!!! I'm happy to hear that you have made it to PFC side. Hoping that the news things just get better and better for you.
One last thing that made me chuckle. I noticed darkening in my neck area and I've been freaking out a little bit about it thinking it was a side effect from the drugs. I finally looked at it closely this morning and it suddenly hit me. It is bruising from wearing that darn chin strap on the cold cap. It must have rubbed my skin enough to scar. I'm definitely using some type of cushioning/gauze for my remaining treatments. Silly me.
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portishk - good luck with everything. I wish your daughter all the best - sometimes really thick hair sheds more - I guess because there's more there -sometimes because it's harder to get the caps tight enough - I don't know anything about the Lupron situation - but taxotere (if that's what she's on) can result in permanent hair loss - if you google taxotears you'll see some of the stories of those who've suffered from permanent alopecia from it - from what I understand it could be as high as 6% of those who are exposed. Having said that, I had 4 rounds of taxoere and cytoxan - and although I lost most of my eyebrows and lashes several weeks after chemo - they've come back - so I didn't suffer any perm. hair loss anywhere. take good care - Lucky
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There's got to be some connection with body heat and shedding....I am a jogger and during chemo I tried to keep jogging, but I had to wear a hat....I tried to keep my head cold, would wet my hair before I went out, but I did shed a lot.... I wish I had used caps more out of the freezer....but in the end while there were areas that were thin, no one ever could tell...I went to a national meeting about 6 weeks after last chemo, I had been on leave for 6 months so no one really saw me until then...and I had used the no ammonia no peroxide dye..and chose a red tint, i've been light brown-blond my whole life...I could tell every one thought I had a wig...so go figure, think I was more self-conscious about the thinning.
I am so sad to hear about your daughter, she seems to have a great supportive family and a good attitude....she may not want to, but the caps will still protect her follicles and regrowth may be faster ....whatever choice works for her.....0 -
mdg & makingway: My daughter's treatment regimen is: TAC (taxotere, adriamycin & cyclophosphamide)... and no, and don't believe that she is aware that Taxanes can cause permanent hair loss. Unfortunately, at this point, I really don't think she cares. She's such a beautiful girl... and would look beautiful bald with no make-up on, but that's not the point. Her hair is (was) so long, thick and beautiful... and I doubt that she realizes how much she will miss it until it's gone. I pray that it grows back!! Because of her circumstances, she really had no choice but to go with the Lupron... since she has so many issues with her ovaries and wants to have babies some day. In addition, her growth rate is 85%. Until she was diagnosed, I really had no idea that "the younger you are, the faster it grows"... according to her docs. I'm not surprised that she is more sensitive to meds than most. Before she was diagnosed, the only drug she took was Advil because other meds make her so sick. Thanks for the feedback... it's much appreciated.
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Portishk, I am so sorry about your daughter's situation. I completed my last taxotere/cytoxin chemo on April 5th (4 rounds total) and have 90% of my hair thanks to the Penguin Cold Caps. No frostbite, no bald spots, nothing. That being said, I found the cold caps very painful and chemo days extremely difficult as a result (I also dealt with nausea 2 of the 4 times). I admire those of us who endured cold caps for six or eight times, as I did find it difficult for just the four TC treatments that I had. I can certainly understand how, for some, cold caps are just too much to add to the already overwhelming mix. Nevertheless, I am thrilled that I have my hair, am not bald, and do not face the risk of permanent hair loss. Although I feel like I have been run over by a train, no one would know it looking at me . . . .
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tc, I found that a folded up bandana works wonders under the chin strap. It keeps you from suffering the cold shock of the strap on your neck each time, too!!! I make it long enough to cover the whole strap.
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portishk- Are you certain it isn't Taxol? That's the combination I see frequently. I've read that those on the TAC regimen are more susceptible to hair loss. Chemotherapy can cause menopause. Though I've been told that in younger patients sometimes your period will come back. I hope she had her eggs harvested and frozen in case it doesn't. I've never heard: 'The younger you are the faster it grows'. Please don't take this wrong but, it sounds like a contrived statement to me...Some of the things we're told are 'theories' not based in fact i.e., scalp cooling could cause scalp metastasis. What the doctors should be sharing is fact based information which is critical to our well being i.e., scalp cooling works and it is safe, Taxanes can cause permanent hair loss, 50% of those having a MX will have chronic pain the rest of their lives, risk of developing lymphedema is much greater when the projected range of 5 years is extended to 20 years etc. etc. I could go on and on. Sorry for the rant. I feel for you. You are a wonderful Mother for wanting to prevent your daughter from deciding something she might later regret. This is our curse of wisdom. Us older folk see the mistakes the younger generation make, but we are helpless to stop them. I think the best we can do is to provide the information, so that they may question it themselves.0
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portishk- i was 38 when I started treatment and feared menopause too. My period came back 3 months after last chemo infusion and has been regular ever since. I swear that yoga healed my endocrine system.
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Portishk - you have been so supportive to your daughter as she is going through this challenge in her life. I really admire that. I am so sorry that she is having a rough go at it. In my opinion, she is having a bit of the perfect storm with the cold caps. I don't blame her for not wanting to continue with it. It sounds like wearing the caps during treatment was a very uncomfortable experience for her with the extreme nausea and drowsiness. And now that she is losing so much hair, it has to be discouraging. If she is accurately describing the hair loss she is experiencing, it sounds like more than shedding to me. I will tell you this, the A in the TAC is very tough stuff. There are many women that don't have success with the caps when they are taking the Adriamycin. In fact, if you go back in the history of this thread, you will see some ladies that lost the majority of their hair (50-70%) due to this drug and that was with the caps. And I'm not familiar with lupron, but it sounds like it's also contributing to the hair loss as well as in addition to the extreme hot flashes. So given all of this, I don't blame your daughter one bit. The most important thing is for her to focus on her health and beating this awful disease. Do not get distracted about her having permanent hair loss or permanent menopause. Both are rare occurences and more than likely her hair will grow back and the menopause will be temporary. Stay positive and continue to pray for the best outcomes.
Again, so sorry about what your daughter has been through. Please keep us posted on how things go.
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Makingway -Honestly, I'm not certain of anything... only what my daughter and her docs have told me as far as her chemo regimen. My best friend is an RN at Riley Children's Hospital In Indiana, and she was the 1st person who told me "the younger you are, the faster it grows... because hormones/estrogen levels are going crazy". I kind of blew it off, but then heard it straight from her oncologist's mouth, then his nurse ... so NO, I don't want to believe it, but that's all I've heard. I also heard him say that she has a 64% chance of the SAME cancer coming back... even after the double mastectomy. Not a good thing to hear!
This is all a learning process for me, and I won't pretend to like any of it... just trying to stay positive. She did go through fertility treatments and had surgery to have her eggs retrieved and frozen before she started chemo, so hope she's good to go there. She was intentionally given a Lupron shot before her first chemo treatment to surpress hormones, and we were told by her oncologist that it's a normal process for someone her age. She will continue with Lupron shots for the 4 months of chemo, and then be taken off them.... and hopefully hot flashes will end, and periods will come back. I only know what I'm told, and don't pretend to be an expert... but try to do as much research as possible. Thanks for the info and the kind words.
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Victorious2012 - thank you for your kind words, as this is all a learning process for me. We were told that the Lupron was meant to throw her into temporary menoupause during chemo in order to supress hormones. We were also told that it would raise her body temp, cause hot-flashes, and stop periods... for the 4 months of chemo treatments. She wakes up soaked at least 3 times a night and has to change clothes, in addition to her hair being drenched. She also gets them during the day... just never knows when they are going to hit. I can't even relate, because I'm almost 50, but haven't yet experience hot flashes or menopause myself! This is all so crazy for us.
Before choosing to go with Penguin cold caps, we talked to numerous people who had used the cold-caps, and felt confident that they would work. I am still confident that they work for most... she just has somewhat unusual circumstances. In addition, she is so very tiny (5'3,110 lbs. soaking wet, and wears a size zero), so has very little meat on her bones.... just a very petite person. I would love for her to continue with the cold caps to save her hair folicles, but it's her decision, not mine. She had a very stylish mohawk at 4pm today, and still looks beautiful! Looks like her hair is up on top of her head... not your typical mohawk.
Regadless, the hair may or may not grow back... but just want her to get through this and put it all behind her. Thanks to all for your input and info, and I will keep you posted on her condition.
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Portishk - I wish your daughter the best. She is a strong girl. I fully believe that her hair will grow back and it will probably as beautiful as it was pre-bc. I feel for her as far as the fertility treatments as well. I know it's been stressful dealing with that on top of BC. And I'm sure everything happened so fast. I hope she is able to take the time to relax during this stressful period and just focus on getting better and letting her body heal (sounds like she is still working a lot and on the go). Also, please advise her to hydrate, hydrate, hydrate. Drink lots of water to detox her body. And light exercise (like walking) if she can stand it. Doing that can really help with side effects from chemo. Chemo may also be contributing to the hot flashes and night sweats. I've read several comments on this website about ladies having the exact same type of night sweats - waking up several times a night drenched. So it could be the chemo, the lupron or a combo of both. I have had light night sweats and recently started getting hot flashes. I tell you...no fun! But mine are nowhere as extreme as your daughter, but still a pain in the a_ _.
Actually, I have read that younger women have more aggressive or faster growing cancers. I've actually read it in several places, I believe even on this website. Not sure it means anything to us as long as you are getting treatment. I'm 38, so it caught my eye when I was doing my early research on BC. Now, I think her onconogist is off on the 64% chance of recurrance. Perhaps that was her pretreatment recurrance rate. Most of the stats I see on recurrance after a BMX is 10% or less. I'm not an expert, but I see that figure a lot. I would revisit that with the doctor.
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Ladies, thank you so much for the kind words. So glad to be PFC. I'm on day 3 - so still living the dream - but looking forward to getting over the chemo side effect hump.
TC, It is so good to hear from you! Hang in there! I hope that the shedding is manageable and not as bad as you think. I know I was supersensitve to any shedding I had, especially around the point you are at now. But eventually I was able to relax. I found that after that point (3rd or 4th treatment), my hair started to stableize somewhat. It continues to shed throughout but it's pretty consistent and my overall amount of hair has stayed the same (for the most part). Definitely thinner but still full coverage. So hopefully you can ride it out with the amount of hair you have now. I'm sending you good hair vibes :-)
DeesDaughter, so glad to hear that you crossed the 21 day mark...with hair! That is great news. Shedding when you comb your hair is normal. Like you said, try not to do it a lot. I comb mine out once a day too (although I am notorious for running my fingers through my hair several times a day - bad habit). Given everything our hair follicles are going through, shedding and thinning is expected. Hang in there. Hoping the best for you and your hair!
Luckyjnjmom, congrats on being 14 weeks PFC and getting past the PFC shed. Sounds like you are over the hump. Do you remember when your hair started shedding badly after chemo and when did it stop?
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victorious2012 - we asked her oncologist why that number was so high (her "score" after biopsy was evaluated by 3 different labs) because he didn't like the number either, which is why he had the biopsy evaluated 2 more times after the first evaluation. It really makes no sense to me. She only has a 5% chance of a new breast cancer developing, but a 64% chance of the same breast cancer recurring. My daughter and her boyfriend and I were all in the room trying to understand it, but I can say that any of us actually did.
My daughter's boyfriend's Mom was diagnosed with Breast Cancer 16 years ago and given 6 months to live... but she's still alive! Her boyfriend is a true God-send who believes that everything happens for a reason, and that recurrence scores are "just numbers". Love his attitude! He makes healthy fresh juices 1-2 times a day in their juicer, and has a book of anti-cancer recipes. He makes sure she has fresh water with lemon juice at all times... when she's not drinking juice. They try to take a short walk in the park every morning as weather permits.
Her oncologist, Dr. Perry Ballard, III is listed as "one of the top doctors in his field in Atlanta" and is also listed in the directory of "Best Doctors in America". He is a true gentleman with a great bed-side manner, but also honest, direct, and "to the point".
As I said before, this is a learning process for all of us, but I try to ask as many possible and try to do as much research as possible. This is a great place to find information and to see what others have experienced in their journey. Hope you are doing well, and hope the hot-flashes subside soon!
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Victorious,
I would say major shedding started about 3 weeks PFC - and it was so much more than I had ever experiened before I was shocked!! I talked to Geralyn who told me that it might just be the result of the toll that the months of chemo had on my uptake of nutrients,as your stomach, intestines etc are all adversely affected by the chemo. It continued to shed HEAVY until about 3 weeks ago - then it started to taper off some and is now (I hope) nearly back to normal shedding. I did get it cut and dyed this past weekend (I know against the rules - but it looked so crappy I couldn't stand it any more) - as far as I can tell this did not adversely affect the shedding and my hair looks a lot better.
Good luck! Lucky
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p.s. I never even came close to bald - although I would say I may have lost 30% or more of my hair - it's so hard to estimate that number - but it was quite thin.
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portishk,
For the same cancer to come back - there must be a concern about metastisis (i.e. the original cancer wasn't confined to the breast and is now somewhere else in her body - undetected at this time). Also, the characterisitics of the cancer (It must be hormone sensitive or they woudln't want to shut her hormone production down) suggest that so long as she has functioning ovaries - there's a risk of her hormones feeding hte cancer cells (i.e. those that escaped from teh breast tissue) once you stop suppressing hormone production. This is an explanation of why the onc believes the recurrence rate is so high. There are ways to reduce the risk - but they're nnot fun for someone her age especially, e.g. remove ovaries. I'm 50 - have had a BMX because I have a 6 year old and an 8 year old and my goals were to reduce my risk as much as possible - I'm in chemopause BIG TIME - and at my age I would be in menopause for real in a year or so anyway - and even after BMX and 4 rounds of chemo - they want me on tamoxifen (an estrogen blocker) "just in case" there's a cell or two in my body somewehre the escaped chemo and will grow in the presence of estrogen. I think in my case they're being overly cautious because my hormone production is so low at this point - but at yoru daughter's age - there's a real concern.
My thoughts are with you,
Lucky
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