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My hair

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

Today I bit the bullet and called my oncology nurse about my concerns regarding my hair regrowth (or lack thereof). It's been 7 mos since my last chemo. I do have hair and the follicles that are there are growing, but I have this male pattern baldness pattern and a very visible scalp, especially in the back. The hair itself is also very fine. Regrowth on the rest of my body is also sparse. I called simply to see if there is anything I can do to either stimulate the growth (vitamins, Rogaine, Nioxin, etc.) or whether I just be patient.

The call back was that she talked to the doctor about this and she said this isn't normal and I need to see my primary care physician to check my thyroid and potentially refer me to a dermatologist - that it has to be because of something else is going on, not the chemo. What?

Doggone it! I thought I've read here that others have also had slow and sparse regrowth for a while. I love my pcp and contacting her, but decided that I should call oncology because of the chemo. Chemo, afterall, made my hair fall out in the first place! I can't be the first woman with this problem! I'm really upset. This isn't the response I wanted. I wanted to be told yes, sometimes this happens and what helps is X or patience.

Comments? I'm now going to try to make an appointment with my pcp - who doesn't prescribe chemo and probably doesn't know whether this is normal or not!

Suzanne

ohilly
Posts: 446
Joined: Jan 2008

I will tell you my experience: I had very thick, beautiful hair before chemo. After my treatment which finished in June of 2008, my hair did grow back but it was much thinner, especially on the sides and on top. I kept on waiting and waiting for it to grow back, and it never did. I did go to a dermatologist but this was of no help. I talked to many other women with the same problem, and my conclusion is that either the Taxotere I took or the Femara I'm still taking was what did this. There is a group called Taxotears (google it) in which they talk about the true, but little publicized fact, that Taxotere can cause permanent hair loss in some women. Femara reports that 5% of the women have hair thinning, but I think (based on my conversations with other women) that the actual percentage is much higher.

My advice to you: don't waste your time going to dermatologists. All they have to offer is Rogaine, which is a terrible drug. You have to take it the rest of your life and in most women, it only prevents further hair loss and doesn't help the hair grow back. It also causes hair to grow on the face as a side effect. I firmly believe the solutions are COSMETIC, not medical: I went to a great hairstylist who did things (highlights, coloring, a good cut) to disguise the hair thinning. I also use a product called Hair So Real (you can google it) which is something you sprinkle on the thin spots and is totally effective at disguising them.

It took me a long time to accept that my hair could still look okay with the above cosmetic tips, but would never be the same. Feel free to PM me if you have further questions.

Good luck.

Ohilly

MAJW
Posts: 2515
Joined: May 2009

Rogaine is not an oral drug...you do NOT "take it"...it is a topical treatment..

ohilly
Posts: 446
Joined: Jan 2008

I know it's topical: I just misstated it in my response. It's still a horrible drug and not worth it in my opinion, though.

Ohilly

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Hi Ohilly - It is good to see your post. I have hair thinning too. It's not just my head! I have no hair on my legs from my feet until about 1/3 of the way up my calf/shin. I always thought it was the chemo, but never asked. It is nice not to have to shave to wear capris, tee hee. I think Arimidex also can cause the hair to thin. xoxoxox Lynn

skipper54's picture
skipper54
Posts: 936
Joined: Feb 2011

Has anyone tried the Nioxin products? I know it works for those whose hair thinning is due to age.

Lynn Smith
Posts: 1265
Joined: Mar 2011

I've always had fine thin hair.I didnt need chemo and was glad for that.I was afraid if I had it my hair would def not come back in like so many others.I take tamoxifin.My hair is thinning from that and I have over 3 years to go.I am worried.My friends who had chemo and radiation did fine with their hair growning back.They say it is thin but it is very thick.Probably thinner to them.

Since my hair is so fine and thin I use a good shampoo that gives body.I roll my hair on tight rollers and brush it.It looks good and doesn't look as thin as it really is.If I cut it I would really look bald.But the way I do it now no one has any idea of my hair loss. It is Esp thin for someone who didn't have chemo.My sister is pretty much bald on top.I don't want that.She has been most of her life.She's had no illnesses.

I know some is my genes but this tamox isn't helping.Then after tamox there is another drug for 5 years.UGH!!!!

Lynn Smith

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Oh Suzanne, how frustrating. Wouldn't it be nice if they had said "Oh yes, that does happen once in a while. Here's a cream that has worked for some. Use it sparingly twice a day."

I've heard that biotin helps...something else to ask the PCP.

Hope to see you soon.

Hugs,

Linda

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

It's been 1 yr and 4 mo since chemo and while the hair on sides and back is normal like before, my top and crown are thin. Good color, cut and style really helps, oh and lots of products. Before bc the hair right in fron had begun thinning and I used Nioxin and I liked it. It's shampoo, conditioner, sclap treatment and follicle booster. Expensive, but I want hair. I started using a product called Enjoy after chemo and it was ok and then I switched back to Nioxin and did see hair regrowth. But you should use it everyday and I don't always wash my hair everyday so I forget to use the foam and follicle booster. My vote is to try it, it can't hurt and certainly may help. But I think this is all I'm gonna get so I'm just trying to keep what I got!

I would try the Hair So Real, but isn't that a poweder? I am a very warm person and can soak my scalp and I'm afraid a poweder would start running down my face. Ever had any problems like that?

Thin and combing over, Judy :-)

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

Thanks for input. I may try some Nioxin. I'm really disappointed that my oncologist couldn't even say this happens sometimes, but lets rule out other causes. Her nurse acted like they'd never heard of such a thing. Yet I looked it up online (from reputable websites) and they clearly say that "in most cases" (I think 95%) hair grows back after chemo. I also wondered about Arimidex effecting regrowth. Why can't they just own up to the fact that sometimes stuff like this happens as a result of the treatments? I'm pretty irritated.

Maybe it will grow in eventually. And maybe as it gets longer, I can do an effective comb over. Sigh. I don't think I have a thyroid issue. I just had thyroid tests a few months ago and all was well. I also don't think a dermatologist will be able to do anything, but I'd like some Latisse. In the meantime, my primary care physician has jury duty next week and I don't have an appointment until the 29th.

Suzanne

ohilly
Posts: 446
Joined: Jan 2008

I really, really recommend HairSoReal: it's actually natural keratin fibers that you sprinkle on the thin spots and it really covers them very effectively. If you get your hair wet or it rains, it does not 'run' because they're keratin, which is almost like real hair fibers.

I hate to be a naysayer, but I tried Nioxin, Biotin, everything! Nothing will make your hair any thicker because of these darned Aromatase inhibitors we have to take, but you CAN deal with it cosmetically through a good hair cut and products like HairSoReal. I wish the oncologists would tell you these drugs will do this, instead of trying to minimize the side effect or cover it up, which I believe is what the drug companies do (I believe hair thinning from AIs is pretty common based on my conversations with other women, and that the drug companies underreport it).

I have been on Femara almost three years. Does anyone out there know if your hair gets thicker once you get off the drug?

Ohilly

JWI
Posts: 1
Joined: Jul 2011

Like you, I would LOVE to know if anyone who's been off Femara has had their hair re-grow!

I was finished chemo 27 months ago, and have been on Femara for about a year. I have kept waiting, and trying EVERYTHING I can think of - taking Silicea Gel, getting Indian Head Masage, massaging essential oils into my scalp nightly - I'm SLOWLY getting regrowth, but at this rate I'll have about 10% of my origianl hair in about 5 years! Every time I loook in the mirror it's a constant reminder of loss.

I just decided today that enough is enough. I was a beautiful woman, who had a full head of thick, long, beautiful hair - that always looked good - even when I woke up in the morning! I'm setting up an appointment to enquire about hair extensions.

It's terrible, isn't it? That NO ONE understands the impact this has on us. Between having my ovaries removed (electively), being on Femara (which inhibits ALL hormonal activity in my body) and the hair loss, I feel like I've been robbed of my feminity and identity. I went out without makeup a couple of months ago, and a male clerk in a variety store was actually unsure as to whether I was male or female! Talk about a moment you never thought you'd have to endure! I told my husband it's like this: imagine you've been castrated and then someone has aplied permanent makeup on you face that has given you a female appearnce. I still don't think he gets it.

So, I'll let you know how my hair extentsions consulatation goes. I'm done waiting for my hair to come in. I'm going to do something about it NOW.

By the way - if you read the ingredients list on Nioxin, it's not very encouraging. It's full of ingredients that we as breast cancer survivors, especially, should be avoiding at all costs. Yeah, that sucks too. Check Environmental Working Groups site to give you information as to the substances you should be avoiding.

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

Not that I'm happy for your dilemma, but it does feel nice to have someone to talk to about this.

When I saw my oncologist last month, I showed her my hair. She said I might think about switching to Femera (from Arimidex) in December if things don't get better. Of course, she doesn't know if this happened because of the chemo or Arimidex, but she did admit that ANY chemo that causes hair loss could be permanent. Swell. She also said that while all of the AI's have similar side effects (including alopecia) some women have different side effects on different drugs. I'm doing so well on the Armidex, I hate to risk a change, but we'll see how the hair thing is in December.

I'm currently using a "snake oil" treatment. The woman who did my permanent make-up is convinced she can help me with her needling techniques. www.estellesplace.com. I truely don't hold out much hope on this, if any. She does this "dry tatoo" thingie and then I'm supposed to apply minoxidil 2 X a day. So if I do grow more hair, we'll never know if it was the needling, minixodil, or just plain time and I don't care what is responsible. I just want more of my hair back.

JWI, is your hair loss consistent all over your body? Mine is. It's so wierd. Not to mention depressing. There are definitely worse things than having no hair, but it does suck - big time.

Suzanne

Suzanne

laurissa's picture
laurissa
Posts: 773
Joined: Sep 2009

My taxatere and Cytoxin treatment ended 1 and a half yrs ago. I had very thick hair and its now much thinner and less body, doesn't hold a curl for long. And still no eyebrows and just a few lashes. Its just something I've accepted. I used to wear styles with height on top of my head, now it's flat as a pancake, not attractive on my round head. Hope yours does better soon.

VickiSam's picture
VickiSam
Posts: 8323
Joined: Aug 2009

I too suffer from thin hair, sparse eye brows - and thinner lashes. Frustrating, to say the very least.

I've tried EVERYTHING..the best thing that I've found that works .. is Biotin .. I take the capsules, as use the shampoo J/A/S/O/N -- I purchase shampoo on line, much cheaper. Biotin tables for oral consumption -- available at Henry's or Natural supplement store. 6 months after starting this regiment, I am seeing healthier lashes - and my hair feels, looks and appears much better.

Hoping you find something that works for your hair issues :)

Vicki Sam

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