hair loss/scalp pain/questions about chemo

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ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I had invasive intraductal bc with a 1.1. cm that did not spread to my lymph nodes. I'm supposed to have 4 chemos (Taxotere/Cytoxan) and the 2nd one will be on May 9. I have several questions: first of all, my hair just now started falling out. My scalp hurts a lot and is very painful. When, if ever, does this pain go away? I am afraid to use Ibuprofin because I remember that my doctor told me not to use any aspirin products, although I don't know if Ibuprofin is an aspirin product? I would also like to hear from others how they dealt with their hair loss and when it can be expected to grow back. The only way I can deal with it is never to look at it: I put the wig on without looking and just straighten it in the mirror, and the same for my caps and scarves. I just cannot handle looking at this. I remind myself constantly that it's just temporary, but I used to have thick and beautiful hair and I have heard stories about other people's hair growing back thin. I am very depressed in general because not only am I dealing with breast cancer: I recently found out I have the BRCA gene and am planning to have a preventive (second) mastectomy in September. I can't believe I have to go through all this again! Another question I have is if the effects of chemo get worse with each infusion - the first time I had hardly any side effects and am hoping this second time will be the same. Any answers to these questions would be appreciated. Thanks. Ohilly

Comments

  • chenheart
    chenheart Member Posts: 5,159
    #2
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    Oh Sweetie~ my heart goes out to you! First things first, as much as you don't want to hear this: SHAVE YOUR HEAD! For starters, you cannot stop losing your hair by being gentle with it (trust me, I tried!), and it will get all over everything, worse than a shedding dog. And, as soon as you don't have hair, your scalp will almost immediately stop hurting! I still remember the achey scalp, and I got the advice I am now giving you.

    Many women seem to be just fine with the whole "bald is beautiful" mentality. And many women indeed are beautiful with no hair. I was not one of those women where MY head and hair were concerned, so I know just how you feel.Especially about not looking at yourself and putting a wig on. It is, I think, a visceral response~ and there is no right or wrong as far as our feelings are concerned. Logic had nothing to do with how I perceived myself! I can spout chapter and verse about how I felt about other women I saw wearing bandanas and hats, and the love and sister-empathy I felt for them. I never once thought any less of them, or that they were ugly. Quite the contrary! I knew they were valient warriors, and I was instantly drawn to them. But my emotional side made me feel as if I were a freak with a beacon drawing attention to the beast! Go figure!

    Fast forward..and I will fill you in on the interim, as will others , but just know that now I have my original thick, beautiful hair back! It needs regular cutting, and there is no evidence from my healthy head of hair that I ever went through what you are going through now.

    I know you are going through so very much~ please cut your hair! Odd as that surely sounds...

    For the record, Ibuprofen is NOT an aspirin product; give your Dr a call , or your local pharmacy and get comfirmation that you can indeed take it.

    And, although the fatigue is cumulative, generally, the way we react to our first chemo is the way we will react to subsequent infusions...

    We love you, Sister!

    Hugs,
    Claudia
  • ohilly
    ohilly Member Posts: 441
    #3
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    chenheart said:

    Oh Sweetie~ my heart goes out to you! First things first, as much as you don't want to hear this: SHAVE YOUR HEAD! For starters, you cannot stop losing your hair by being gentle with it (trust me, I tried!), and it will get all over everything, worse than a shedding dog. And, as soon as you don't have hair, your scalp will almost immediately stop hurting! I still remember the achey scalp, and I got the advice I am now giving you.

    Many women seem to be just fine with the whole "bald is beautiful" mentality. And many women indeed are beautiful with no hair. I was not one of those women where MY head and hair were concerned, so I know just how you feel.Especially about not looking at yourself and putting a wig on. It is, I think, a visceral response~ and there is no right or wrong as far as our feelings are concerned. Logic had nothing to do with how I perceived myself! I can spout chapter and verse about how I felt about other women I saw wearing bandanas and hats, and the love and sister-empathy I felt for them. I never once thought any less of them, or that they were ugly. Quite the contrary! I knew they were valient warriors, and I was instantly drawn to them. But my emotional side made me feel as if I were a freak with a beacon drawing attention to the beast! Go figure!

    Fast forward..and I will fill you in on the interim, as will others , but just know that now I have my original thick, beautiful hair back! It needs regular cutting, and there is no evidence from my healthy head of hair that I ever went through what you are going through now.

    I know you are going through so very much~ please cut your hair! Odd as that surely sounds...

    For the record, Ibuprofen is NOT an aspirin product; give your Dr a call , or your local pharmacy and get comfirmation that you can indeed take it.

    And, although the fatigue is cumulative, generally, the way we react to our first chemo is the way we will react to subsequent infusions...

    We love you, Sister!

    Hugs,
    Claudia

    Claudia, thanks for your support! I can understand the logic in shaving the head, but I just can't deal with it emotionally. I did go to my hairdresser and had her cut it short, but not drastic. I have one more question: did you lose your eyebrows and if so, how did you deal with this? I lost a little bit on the ends, but so far (after one out of four chemos) my eyebrows still look normal. I watched a video on how to do the eyebrows at the Look Good Feel Better site, but I'm no makeup expert and it seems hard to do this even with a video (the video said to use an eyebrow pencil). I know they sell fake eyebrows on headcovers.com but it seems like they would LOOK fake. Any further advice would be appreciated! Ohilly
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    Your scalp is hurting because the folicles are closing as the hair falls out. Yes, it does go away. I had my hair cut to 1 inch first, and kept the pink cream from Mary Kay rubbed in all the time...REALLY helped!!! with the itching/discomfort.

    Acceptance is what it is. As far as hair fallout, it will continue, unfortunately, regarless of how you feel about it. Any tricks you had to accept this is what you need to do. Remember, above all, THIS IS TEMPORARY. And it is to SAVE YOUR LIFE! MY hair came back much thicker...yes, THICKER...after treatment...and many others will say the same...

    As far as Ibuprophen...it is in the same family as aspirin. My oncologist forbade me from using it for anything. Try Tylenol. I found this worked almost as well....it's the anti-inflamatant that I missed the most.

    If depression is getting out of hand, ask your onc for a script. Something like Welbutrin. MANY people fighting cancer need this form of help....it's only natural to be upset by this. But, also realize, there are many NED BRCA1 and 2 positive people running around....

    Hugs, Kathi
  • seof
    seof Member Posts: 819 Member
    #5
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    My Doc. said use Tylenol products (acetomenophen is the active ingredient), you migt substitute generic, but definitely ask your Dr. first. I think the discomfort will fade. I had very little of that, but I know some ladies do. I lost hair everywhere there was any (under arms, legs, pubic area...) So far hair on the legs is the first to start growing back. Some folks have the hair on their head grow back darker and more curly than before, some have it grow back thinner...it is a very unpredictable thing, sorry to say. For me, I had very minimal side effects with chemo, though they did get a little worse with successive doses. I kept working full time throughout both series'es. I tried a wig for hairloss, but didn't like the feel, so I use hats. This is another one of those individual choices we have to meak.

    Please ask your Doctor about all these questions too...he/she is your first line of information. This site is a good suppelement.

    Best wishes, seof.
  • Jadie
    Jadie Member Posts: 723
    #6
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    Hugs to you ohilly. You are going through a rough time. I agree with Chen you should shave or buzz your head. If you do you will feel that you have some controll over whats happening. I felt that it helped with the soreness too. Your hair will grow back quickly after your last chemo and just as beautiful as before.

    If you feel that you need help emotionally dont be afraid to ask your doctor for something. I stayed on zoloft (still am) and xanax while in treatment. Dont think I could have made it through without it.
  • Unknown
    Unknown
    #7
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    Side effects didn't get worse for me. I did feel depressed with each infusion and that lasted about a week.
    There are two sides to the hair issue. You and them. At first I hated to see my bald head, it frightened me. Then I got used to it. Now that I have little tiny hair, I love my hair though I can't go outside with it uncovered. The second part is how others see us. I feel ashamed not to have hair. Isn't that weird! Ashamed! Why would that be. I can imagine nothing more horrible than my wig falling off at work. I can't positive-think myself out of how others see me, but as far as my own mirror, I have made peace. And I am comfortable with my family seeing me bald.
    My scalp pain went away with in a week of the hair loss process. It started growing back before I finished treatment. Weird. I didn't lose all of my eyebrows, but did lose most of them and can use the few stragglers as guides for the ones I draw on. My wig has bangs to slide down over my drawn on brows.
    The best way I handle the hair loss is with the image of being like a baby. Baby soft hair grows in first. Babies have short little hair at first. Babies are starting a new life. So are you! When ugly thoughts come into your head, try to replace them with this positive image, or another that works for you.
    Please don't let yourself become too depressed without seeking help. One day at a time, sweetie. Don't pull up scary images from the future, like your hair growing in thin. And know that others have gone before you. Others will go after you. Get help from the first group and help the second. Love will pass down and hair will grow. Promise. Love, Joyce
  • chenheart
    chenheart Member Posts: 5,159
    #8
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    ohilly said:

    Claudia, thanks for your support! I can understand the logic in shaving the head, but I just can't deal with it emotionally. I did go to my hairdresser and had her cut it short, but not drastic. I have one more question: did you lose your eyebrows and if so, how did you deal with this? I lost a little bit on the ends, but so far (after one out of four chemos) my eyebrows still look normal. I watched a video on how to do the eyebrows at the Look Good Feel Better site, but I'm no makeup expert and it seems hard to do this even with a video (the video said to use an eyebrow pencil). I know they sell fake eyebrows on headcovers.com but it seems like they would LOOK fake. Any further advice would be appreciated! Ohilly

    Oh yes...When we lose hair, we lose hair wherever there is any...and I mean wherever! My Dr. hadn't told me that, and boy was I horrified!

    I penciled in my brows, and wore demure eyelashes...yes, I was ( and am) that vain. I got pretty good at the whole brow feathering after a bit! The wigs I wore had bangs, so they were kinda hidden. With the bandana..well, my artistic flair was put to the test. I got big colorful earrings which I hope drew the attention away from my brows! Who knows if it did or didn't! :-)

    The reason we do NOT take aspirin or Ibuprofen in any of its incarnations, such as Motrin, is that it is a blood thinner. I had a port, and had to take a blood-thinner~ making my blood any thinner could have been a potential hazard.

    I know you are not emotionally ready to let your hair go, neither was I. But it coming out in clumps all over my pillow, and cleaning my shower, and then the worst of all, having hair all over the food I was preparing for the family was the signal to take it off. I know you will make the right decision for yourself when you must.

    Hugs,
    Claudia
  • sylva
    sylva Member Posts: 80
    #9
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    Hi Ohilly. Can you believe that May 13 is my second round of chemo, with Taxotere/Cytoxan too, and yesterday my hair started falling too??? I washed it this morning, put a lot of rinse after, combed it with so much care, but the sink was full of hair!!! and although we know that it was going to happen, it hurts deeply.
    I will go next Monday to the Look good feel better seminar, and see how it goes. They told me at the place where I bought the wig, that they will do the clipping for me and do a scalp massage with some lotions....
    Regarding the aspirine, the doctor told me to use Tylenol, like these nice and experienced ladies already told you.
    This is A BIG DEAL for a woman. But something to remember... We won't have a bad hair day for a couple of months!!!
    I cannot help you too much, I'm so new in this too. But I try to go to Gilda's Club, do yoga, take classes, the support groups are very good... just be with all these courageous women help a lot.
    We are not the first ones, neither the last ones. We can do this, WE HAVE TO DO THIS, one day the hair will start growing again, and who knows, maybe it will come back stronger and healthier and we are going to love it!!
    Good luck on your next treatment!! Silvana
  • sylva
    sylva Member Posts: 80
    #10
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    The hair is all gone!!
    This same subject was talked about last week. Now is my hair. It was falling since last Wednesday. Finally Saturday I had to go to clip it out, it was all over the table, the food, my shoulders....
    I knew I had to do it, it was going to fall anyway. But now, I almost cannot look at me in the mirror. I think that is not only the "look", is the confirmation that I'm a cancer patient. Before, I was feeling good, going out, in my subconscious, I was thinking I was OK. Now I know that I have to fight this with all my strength, that I want to live and be myself again one day, and all this in some way SCARE me!!
    This is nothing new, but it hurts. I cannot go out without the wig, yet. I think that step by step I will overcome this too, like so many things we have to overcome with this disease.
    Just having a pitty party, saying goodbye to my long, redish, and curly hair... at least I brought it all to my house in a plastic bag!!!
    Thank you for just "listening" to me.
    Silvana
  • lfly
    lfly Member Posts: 50
    #11
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    sylva said:

    Hi Ohilly. Can you believe that May 13 is my second round of chemo, with Taxotere/Cytoxan too, and yesterday my hair started falling too??? I washed it this morning, put a lot of rinse after, combed it with so much care, but the sink was full of hair!!! and although we know that it was going to happen, it hurts deeply.
    I will go next Monday to the Look good feel better seminar, and see how it goes. They told me at the place where I bought the wig, that they will do the clipping for me and do a scalp massage with some lotions....
    Regarding the aspirine, the doctor told me to use Tylenol, like these nice and experienced ladies already told you.
    This is A BIG DEAL for a woman. But something to remember... We won't have a bad hair day for a couple of months!!!
    I cannot help you too much, I'm so new in this too. But I try to go to Gilda's Club, do yoga, take classes, the support groups are very good... just be with all these courageous women help a lot.
    We are not the first ones, neither the last ones. We can do this, WE HAVE TO DO THIS, one day the hair will start growing again, and who knows, maybe it will come back stronger and healthier and we are going to love it!!
    Good luck on your next treatment!! Silvana

    dec. 25,2001 my 12 yr old daughter shaved my head for me. i wore a cap at work and a hooded sweatshirt at night even to bed. my head was so cold. May 2006 i shaved my own head because the CA was back. mets to bone and lung. i was 37 yrs old and told i probably wouldn't make it a year. i still had 3 children at home. stay positive. losing my hair, in hindsight, was not that important. after all i was fighting for my life so my children could have a mom. i was never sick through chemo in fact it made me feel anxious and maybe it was just dealing with it all but i also was moody. what was most bothersome was the hotflashes. in Dec. 2001,my first time with chemo, i was running outside half dressed and it would be -10 degees wind chill. some days were okay others days were better. i had to stay positive because i didn't want to scare the kids. that probably helped more than anything. my hair came back much thicker,darker and very curly but then after a year or so it was back to normal for me. after the 2006 chemo which lasted 8 months my hair came back thinner,darker and very straight and has stayed that way since. yes i lost hair from everywhere.i kept some eyelashes and a few eyebrows but i got rid of them by plucking them out. this time i wore a cap and some really cute bandanas with all sorts of prints i picked up at hobby lobby. please try to know that losing your hair is nothing compared to losing your life. i almost forgot about the mouth sores. i rinsed and kept my mouth clean like they said but the sores were so bad i couldn't eat i lost 10 pounds during Jan.2002 but by March it was cleared up. looking back it was still only a small price to pay. I'm in my third time with CA and still have a daughter at home so please believe me when i say hang in there it gets better
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #12
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    please take a look at this:

    http://tinyurl.com/3dqbxg

    thanks!
  • mmontero38
    mmontero38 Member Posts: 1,510
    #13
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    Hi Ohilly:
    Was wondering how you were doing since you haven't posted in a while. First of, let me tell you that you need to shave off the hair. My scalp was also very tender and it felt much better after I shaved it off. It then started growing back in very fine until I finished with treatments. My hair used to be thin and straight. I now have curly and thick hair. Some people say this will change and then will grow back in the way it was and my brother who is a dr, said it might just stay this way. Either way, believe me your hair will grow back.

    About the chemo, I generally felt ok until the last chemo, which I actually got sick. I was on Adriamycin and Cytoxan, so I don't know if those particular infusions caused me to be sick where as maybe your infusions will not make you sick. Ask your dr, what to expect with every subsequent treatment. Ohilly, we're here for you. You are in the fight of your life so stay positive. Love ya, Lili
  • mmontero38
    mmontero38 Member Posts: 1,510
    #14
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    ohilly said:

    Claudia, thanks for your support! I can understand the logic in shaving the head, but I just can't deal with it emotionally. I did go to my hairdresser and had her cut it short, but not drastic. I have one more question: did you lose your eyebrows and if so, how did you deal with this? I lost a little bit on the ends, but so far (after one out of four chemos) my eyebrows still look normal. I watched a video on how to do the eyebrows at the Look Good Feel Better site, but I'm no makeup expert and it seems hard to do this even with a video (the video said to use an eyebrow pencil). I know they sell fake eyebrows on headcovers.com but it seems like they would LOOK fake. Any further advice would be appreciated! Ohilly

    Hey Ohilly:

    I did not loose my eyebrows and my eyelashes just thinned out. I did loose my hair everywhere else, which in a why was a blessing since I didn't have to shave or wax.
  • Skybuf
    Skybuf Member Posts: 143
    #15
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    lfly said:

    dec. 25,2001 my 12 yr old daughter shaved my head for me. i wore a cap at work and a hooded sweatshirt at night even to bed. my head was so cold. May 2006 i shaved my own head because the CA was back. mets to bone and lung. i was 37 yrs old and told i probably wouldn't make it a year. i still had 3 children at home. stay positive. losing my hair, in hindsight, was not that important. after all i was fighting for my life so my children could have a mom. i was never sick through chemo in fact it made me feel anxious and maybe it was just dealing with it all but i also was moody. what was most bothersome was the hotflashes. in Dec. 2001,my first time with chemo, i was running outside half dressed and it would be -10 degees wind chill. some days were okay others days were better. i had to stay positive because i didn't want to scare the kids. that probably helped more than anything. my hair came back much thicker,darker and very curly but then after a year or so it was back to normal for me. after the 2006 chemo which lasted 8 months my hair came back thinner,darker and very straight and has stayed that way since. yes i lost hair from everywhere.i kept some eyelashes and a few eyebrows but i got rid of them by plucking them out. this time i wore a cap and some really cute bandanas with all sorts of prints i picked up at hobby lobby. please try to know that losing your hair is nothing compared to losing your life. i almost forgot about the mouth sores. i rinsed and kept my mouth clean like they said but the sores were so bad i couldn't eat i lost 10 pounds during Jan.2002 but by March it was cleared up. looking back it was still only a small price to pay. I'm in my third time with CA and still have a daughter at home so please believe me when i say hang in there it gets better

    Ifly, your story touched me, what encourageyou give us......thank you. God bless you and may you have many long healthy years ahead.
    OHILLY........I loved my hair too, lost it and it grew back the same way....a friend came over to shave it for me, we made a party out of it, her hubby has cancer too and he was there bald. She shaved it in the kitchen (after some falling in the spagetti) while the men cheered on, I looked like a bowling ball...lol....but it's only hair I told myself and it grew back lovely......so hon may you be blessed in your journey. I've had a bilateral mastectomy, invassive bc st III and HER2 pos...so take meds now, had chemo and rads and have lymphedema in L arm....but take one day at a time hon and keep positive....time will pass and you will get thru this. I also had Taxol....it works!
  • patticake830
    patticake830 Member Posts: 1
    #16
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    ohilly said:

    Claudia, thanks for your support! I can understand the logic in shaving the head, but I just can't deal with it emotionally. I did go to my hairdresser and had her cut it short, but not drastic. I have one more question: did you lose your eyebrows and if so, how did you deal with this? I lost a little bit on the ends, but so far (after one out of four chemos) my eyebrows still look normal. I watched a video on how to do the eyebrows at the Look Good Feel Better site, but I'm no makeup expert and it seems hard to do this even with a video (the video said to use an eyebrow pencil). I know they sell fake eyebrows on headcovers.com but it seems like they would LOOK fake. Any further advice would be appreciated! Ohilly

    Good morning, ohilly!
    I had 4 sessions of chemo for breast cancer and 12 days after the first treatment, I started losing my hair. I would run my fingers through my hair and out it came! I was fascinated that it came out so easily. After a week, my scalp started to hurt, so much so that I ventured into a "hair loss" chat room. Everyone there recommended that I shave my hair, so I did!
    I had waist-length hair and cut it to chin-length once I knew I would be having chemo. But after the painful scalp, I buzzed it and felt so much better! I took pictures through the whole process !
    I hope you start to feel better about yourself and your hair. In the scope of treatment and survival, hair loss is just a part of getting on the road to recovery. I never looked at my cancer treatments as an "ordeal", but as a life experience that I had to go through. It was my turn and my journey to wellness. I am now going through 6 1/2 weeks of radiation and am doing well!
    I still wake up every morning, look in the mirror and laugh out loud because I look so funny! I has been eight weeks since my last chemo and my hair is starting to "sprout". I've sent pictures to my family of my haircut, buzz and baldness and threw my wig off when my son came home from Iraq. They all agree that I have a nice-shaped head, ha! ha!
    Please let your sense of humor consume you because this is all only a temporary state of "hair." Here's a little story for you called "Attitude":
    There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head. "Well," she said, "I think I'll braid my hair today!" So she did and she had a wonderful day.
    The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "Hmm," she said, " think I'll part my hair down the middle today." So she did and she had a great day.
    The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. "Well," she said, "today I'm going to wear my hair in a ponytail." So she did and she had a fun, fun day.
    The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YEA!" she exclaimed, "I don't have to fix my hair today!"
    Attitude is everything. Be kinder than necessary, for everyone you meet is fighting some kind of battle. Live simply, love generously, care deeply, speak kindly and leave the rest to God. Life isn't about waiting for the storm to pass, it's about learning to dance in the rain!
    Hugs and prayers to you! Patticake

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