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Femara . . . hair thinning?

wingingit
Posts: 48
Joined: Aug 2003

I have been on Femara now for about 8 months. I was diagnosed 3 years ago ER+/PR+. I took tamoxifen for 1 1/2 yrs and then oncologist switched me to Femara citing lower recurrence rates for postmenopausal women. I noticed over the past several months what seemed like an increased loss of hair, eyebrows and eyelashes too. My hairdresser confirmed my suspicions a few days ago when she pointed out dime-sized patches of bare scalp on the crown of my head. I am hoping this is the worst it will get, but am now wondering. My head has been rather itchy lately, much like when I was losing hair on chemo. I am aware that ~5% women experience hair thinning (male-pattern baldness) as a side effect of Femara.

Have any of you had this experience while on Femara? If so, to what extent did you have hair loss and did you treat it with anything to prevent further loss? Also, the BIG question: did the hair grow back???? I did mention hair thinning to my oncologist in May at 6 mo. checkup and just got a shrug from him as he said I still have beautiful hair and moved right on to the next topic. His comment almost made me feel foolish for even mentioning it! I will probably call his nurse if it gets worse but I would first really appreciate and value any input from you ladies who have *been there.* Thanks for any help you can offer!
Krista

mssue's picture
mssue
Posts: 243
Joined: Oct 2003

Hi Krista,

I did not take Femara but my heart goes out to You. I still remember the feeling of losing my hair.The thing that really gets my goat is that the Doctor blew it off and made You feel the way he did. I think that if they had to walk a mile in Your shoes - they would be a little more considerate and realize that sometimes an acknowledgement of something can make a world of difference in the patients recovery and their confidence in their physicians ability to look out for their best interest.

I would think that after treatments are complete Your hair should come back in- but I don't know that for sure. If You get on the Internet and key in 'cancer treatment side effects' alot of different sites come up. I wish I could be of some help to You ,with what You are dealing with,I just wanted You to know You are never alone.It is not an easy thing to deal with but always remember that beauty is not always in the eye of the beholder,but eternal beauty comes from within.God Bless You!

Hugs,
Sue

Ellison
Posts: 68
Joined: Aug 2004

Hi Krista,

I too was on tomoxifin and then taken off and put on Femera after my cancer matastised. I did not experience hair loss but I am loosing the pigment in my skin. I am white patches all over.

Just courious and I don't mean this in any bad way whatever. It sounds like maybe you are in the 5%. If so, would you quit taking the drug. Does this outweigh the benefit.

I have those moments with my onc. when I feel the communication breaks down. My husband and I walk out of her office only to say what just happened. We feel she does not explain. We don't even know the questions let alone the answeres.

I suggest you go back and address the hair loss. Write down your concerns and see if you can research it on the net. Present this to your doctor but not before saying this is important to me. I would appreciate any answeres you can give me. If this is effecting your hair loss what are some alternatives. You absolutely have the right to have your questions answered. This is all about your health and well being of your mind and body. As a doctor that is what he or she is there for. No question is a stupid one. Lets hope he will give you the answeres you need the second time around.

Good luck
elli

inkblot
Posts: 705
Joined: Jul 2001

Hi Krista:

I'm sorry you're having this happen. I haven't had any hair loss since chemo (I was hormone neg. and so had no post chemo meds) but have a few suggestions:

If you go to www.google.com and type in femara, you'll find a lot of info including side effects, etc., which may shine a bit more light regarding what course you may expect the hair loss to take if it is being caused by femara.

Also, type in alopecia. This is the medical term for hair loss and wondering if it's possible that your hair loss may not be due to femara? I'm just so annoyed at the fashion in which your doc responded to you about this!!! He/she should sit down and take it seriously and look for the cause(s), especially if he/she believes it's uncommon or not directly related to the femara.

One thing is for certain: Your doc ignoring the fact that your hair is falling out and your concerns about it, is completely unacceptable. My suggestion would be to make him/her aware that it's unacceptable.

I believe that we can only further empower ourselves, by taking a stand and letting our health care providers know that we have certain expectations from them. After all, we ARE paying them for a service and if and when they don't deliver, it may be time to find a new doc.
Scenario: If my auto mechanic merely looked at my flat tire and orated that since it still looks pretty, we'll just leave it alone, yet he's all too happy to repair my transmission, sell me a new battery I may not even need and put a bunch of fuel additives in my tank, hand me a hefty bill and send me on my way, with a flat tire, then WHY would I ever go back to that mechanic again? It's really the same principle. Our brains just aren't trained to question our health care providers methods, motives or performance, not to mention the attitude which they present to us. We go in, we pay our bill and we go out. Sometimes leaving with more questions than we went in there with...just not right or reasonable. We deserve quality care. Period. Even if we have to fight or change doctors to get it.

Hoping you'll find some guidance/info/answers really soon and have some indication of what course the hair loss may take and some idea of what exactly is causing it.

One thing which can never hurt our scalps is a good massage. I'd try for at least once daily. It helps stimulate blood circulation, relax the scalp (which really suffers when we're tense or stressed) and just plain feels good! Worth a try.

Love, light and laughter,
Ink

glorylane
Posts: 4
Joined: Nov 2004

I have been on femara for about 16 months after serious toxic side effects from taxotere. My hair just started to come back a few months ago but it is very thin and transparent-almost like baby hair. I am using an herbal treatment which seems to be helping-but at this rate I will still be using a wig at Christmas. My hair used to be very thick and long--oh well..I know what you mean about the doctors-they keep saying to cncentrate on being in remission from cancer--but I would like to enjoy some social life without all of these precarious parts!--glorylane

wingingit
Posts: 48
Joined: Aug 2003

Hi, to all who responded regarding my concerns. I appreciate all who took the time and effort to address my questions. After a week on vacation and a week without the internet, my hair loss may have slowed down some. Yes, I need to get bolder in getting my oncologist to answer more of my questions. I am a patient at a large cancer center. I think of my doctor as more of a researcher than a communicator. I have been tempted to request a switch of doctors on numerous occasions. Then I talk myself out of it thinking I am the one who needs to do a better job of expressing my concerns.

Thanks for all of your advice and encouragement. In a way, I know this is a vanity issue, but like I said I am at a top-rated cancer center, and surely someone there could shed some light on this issue. I just need to let them know that I am expecting an answer. Femara used as a preventative of recurrent BC in early BC is fairly new. My gynecologist explained that we are guinea pigs. I am ready to proceed now to the next step and call the oncologist's nurse, and let her know that this really is a concern to me, so much that I may consider discontinue using it or return to using tamoxifen or give Arimidex a try.

Krista

Sittoe
Posts: 1
Joined: Aug 2005

I read your last reply about how you might switch to Arimidex. I just finished my last pill on Arimidex, and I too have thinning hair from this. I have been on it for 21/2yrs. And it thinned my crown area of my head. I called them up and asked if it was a side affect and they said yes. But they didn`t know if it would ever get thick again. So I`m hoping and praying it does. I hope I helped you in some way. Good Luck, Maureen

wingingit
Posts: 48
Joined: Aug 2003

Maureen, thank you so much for your reply. I will keep in mind that this may be a problem with Arimidex also. I took tamoxifen for 1 1/2 yrs. with no problems at all except fatigue and insomnia. I will not see my oncologist until Nov. but am wanting to get as much information as possible before that time to discuss intelligently why Femara may not be the best choice for me, as I am experiencing other side effects as well. I will let you know if I find out anything about the hair regrowth issue. Are you saying you are now completely through with Arimidex? I will pray for you also knowing that God has numbered every hair on our heads (Matt. 10:30) and our concerns are important to Him!
Peace to you,
Krista

M.Carlin's picture
M.Carlin
Posts: 1
Joined: Feb 2008

I have started to notice (after being on femara for 6 months) that my scalp is itchy and my hair is coming out with the roots attached. All I have to do is run my hands through my hair and I will have 15-20 strands of hair. I still have enough hair to look okay but if this keeps up I am not so sure.

suet
Posts: 1
Joined: Jan 2009

I have been on Femara for 3 months. Today my hairdresser pointed out that I have 2 circular bare spots on the back of my scalp...one about 1.75 inches and the other about 1 inch. She called it alopecia. I'm going to check with my oncologist as I've never had anything like this before.

Texylin's picture
Texylin
Posts: 43
Joined: Mar 2005

Hi Sue, there is a website, http://askapatient.com/viewrating.asp?drug=20726&name=FEMARA, that I have gotten a lot of info from that has helped quite a bit. I had thought I was going crazy with all of the side effects I was having until I found that website. I was on femara for just a little over a year and just the top of my head, in front, thinned out quite a bit. Never had any bald spots, but it was thin enough for me to notice. I just went off femara yesterday and will be starting chemo this coming Monday, so I don't really know if it all comes back or not. If that is the only side effect you are experiencing, I think I would be happy. I got all the pain in the joints, feet and hands along with the thinning hair.

Sending prayers your way,
Linda

5 Years and Counting
Posts: 2
Joined: Mar 2011

Hi Krista:

I am so glad that I decided to search the web today to find out information on hair thinning and its correlation to Femara. I too am experiencing it. I am 47 and was diagnosed with Stage 3 BC at age 40 (first mammo). My cancer was estrogen positive and because it had gone to my lymph nodes, they started me on Femara after chemo although it is supposed to be for post menapausal women only. That was actually about 6 years ago (my how time flies), but I didn't notice any side effects at first. Looking back now, I do believe that I had side effects, but I was contributing them all to the after effects of chemo. I had tingling/numbing in my hands and feet, bone pain, memory loss, joint pain, excessive bleeding, night sweats and BIG time fatigue. All of those were present during chemo so I just assumed it was caring over. However, they haven't gone away and last year the joint pain became so bad that I couldn't walk down steps without being in severe pain. Colder weather seems to make it worse. I started noticing pain in one joint one day and the next day in a different joint. I thought I was going crazy until I went to my doctor.

She sent me to a rheumatologist who asked me a lot of questions about the symptoms I was experiencing. He immediately asked me about hair loss, but at the time the hair loss wasn't that noticeable because my hair came back as a full head of curly locks. Anyways, I ran my hands through my hair and showed him the strands. He then told me, "You know, Femara causes all of these symptoms?" I didn't believe it at first because of how long I had been on it, but I do believe that it is what is causing all of my problems.

I truly don't know what to do at this moment. I did talk to my oncologist about taking me off of it, but that was when it was mostly concerned the about bleeding and joint pain. When I asked him how he was going to keep the estrogen down and the bleeding under control (if I miss one pill it will mess up my cycle for months), he decided I should stay on it. He said the other ones have the same symptoms. He did order a test to see what my estrogen levels were and they were okay, but he never ordered one before I started it so I have no idea what it was when I was diagnosed.

So, I really don't have any advice and I am not sure what to do myself, but I thought I would share my story. I don't want to walk around bald. At this point, there isn't much left at my crown and if it keeps falling out at this rate, I will be bald. Then I start feeling guilty because I am worrying about my hair.

I wish you the best and hope they come out with something better soon.

God Bless, Mary

Shoppingmom
Posts: 2
Joined: Aug 2011

After 2 1/2 years on Femera and have another 2 1/2 to go, I don't know if I can continue. I am so miserable, sad every time I see my image in the mirror. I gave my wigs to a woman who a friend said she needed but yesterday I called her and told her I am in need of one of them back. I had a meeting with my oncologist last week and she said that although I am receiving a small benefit from Femera, it's still a benefit. It is entirely my choice and my life, they do not have any research/data on taking less than 5 years. I am terrified that I won't have hair left on my head - and terrified that the cancer will come back if I stop taking. And, will my hair even come back if I stop taking. If cancer comes back will I forgive myself ever - it came back because I didn't take it? Can anyone tell me if their hair did fill in after they were done taking Femera? Don't know what to do. With taking I have between a 7-10% chance of getting bc again, without taking probably increases 3%. My 17 year old daughter says to stop taking it - done so much between chemo, radiation and a year of perception. Then I feel so vain and shallow as there are millions who would give anything to have my worries as they do not have anything they can do to keep the cancer at bat. Please, is there anyone that has some encouragement? Thanks so much. Shopping mom

Shoppingmom
Posts: 2
Joined: Aug 2011

After 2 1/2 years on Femera and have another 2 1/2 to go, I don't know if I can continue. I am so miserable, sad every time I see my image in the mirror. I gave my wigs to a woman who a friend said she needed but yesterday I called her and told her I am in need of one of them back. I had a meeting with my oncologist last week and she said that although I am receiving a small benefit from Femera, it's still a benefit. It is entirely my choice and my life, they do not have any research/data on taking less than 5 years. I am terrified that I won't have hair left on my head - and terrified that the cancer will come back if I stop taking. And, will my hair even come back if I stop taking. If cancer comes back will I forgive myself ever - it came back because I didn't take it? Can anyone tell me if their hair did fill in after they were done taking Femera? Don't know what to do. With taking I have between a 7-10% chance of getting bc again, without taking probably increases 3%. My 17 year old daughter says to stop taking it - done so much between chemo, radiation and a year of perception. Then I feel so vain and shallow as there are millions who would give anything to have my worries as they do not have anything they can do to keep the cancer at bat. Please, is there anyone that has some encouragement? Thanks so much. Shopping mom

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

I'm still hoping my hair will come fully back from chemo. I'm on Arimidex. No one (docs) know if the hairloss is because of the chemo or Arimidex. Could be either. The only encouragement I have to offer is I've been told by a friend and also one of my physicians that I might just be a slow responder. It's been 11 months since my last chemo and I started Arimidex around Christmas (8 months ago).

I just attended a seminar this morning and got a compliment on my "hair". Of course, it's a wig. I like my wig, but like you, without it the image in the mirror is less than pleasing.

Here's a bizaar suggestion, based on smoke and mirrors I think. The woman who did my permanent makeup does something she calls "dry needling" and she swears she can bring my hair back. She did it once for free. She needles the scalp and then I applied minoxidil twice a day. She claims she now sees new hair growth. I dunno. I'm not doing it anymore because I don't have money to throw away (she charges $1000) and I don't want to use minoxidil because I don't need another drug in my system to interact with all the other crap I take. You can check it out at www.estellesplace.com. Maybe there's someone in your area who does this??? I've certainly received no encouragement/suggestions from my doctors other than my thyroid, and iron levels are fine and probably my autoimmune results are too (they weren't normal, but could be aftereffects from chemo).

Since I'm 64 and not 44, I probably feel less awful about this than a younger woman would. My oncologist has suggested trying a different AI if I want, because while they all have the same side effects, they may be different for each person on each drug. I don't know if I will. I have no side effects on the Arimidex and I'm not convinced it's what's causing my fuzzy sparse hair anyway. I'm more inclined to think it was the Taxotere.

If you discover any miracles out there, I'd sure like to hear them! In the meantime, I'd rather wear head coverings than have cancer again, but that's my personal decision and I have no other side effects.

Suzanne

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