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All TopicsForum: Chemotherapy - Before, During, and After → Topic: Not all my hair fell out! Could be you.

Topic: Not all my hair fell out! Could be you.

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: May 5, 2010 07:01PM, edited Jun 6, 2010 06:29PM by cwindrow

cwindrow wrote:

For all woman considering shaving your hair before chemo... 4 weeks ago I finished 12 weeks of weekly taxol and herceptin and my hair fell out, but not all of it.  My disclosure is a had a lot of really thick hair. I kept cutting it shorter and shorter as the weeks went on.  By the 8th week it was very thin and I couldn't get away without some hat or scarf.  But, I had enough to hang out the sides in a scarf and out the back of my baseball cap.  Not too bad.  It is starting to grow back now.. My oncologist and the nurses seemed shocked- but I want to tell you that with this treatment it may not be impossible. 

colleenW Dx 10/16/2009, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Posts 1 - 17 (17 total)

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May 5, 2010 07:34PM kittycat wrote:

Why did you do chemo, when you had DCIS?  Why didn't they put you on Tamoxifen?

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation. Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2- Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2- Chemotherapy 6/16/2010 AC + T (Taxol) Radiation Therapy 11/15/2010
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May 6, 2010 05:42PM otter wrote:

cwindrow, I'm sure a lot of women reading your post are going to hold out hope that you are right.  Unfortunately, I don't think very many of them will only be getting Taxol & Herceptin with nothing else, as you did.  Most of the time, Taxol & Herceptin are given after 4 to 6 rounds of another cocktail, like Adriamycin & Cytoxan (AC) -- which will surely make a woman bald.

kittycat, there is more to this story.  Herceptin is only used (AFAIK) for HER2+ tumors.  cwindrow doesn't mention in this thread, but does in a post on another thread, that hers was HER2+.  There were (apparently) multiple tumors; so maybe that had something to do with it too.  Anyway, that explains the Herceptin; and I've heard some people say that oncos don't like to use Herceptin all by itself -- they often use it in combination with something else, like Navelbine.  But, I guess I hadn't heard that women were getting chemo for DCIS, even if it was HER2+.  Learn something new every day, huh?

What I have heard, and know first-hand, is that some chemo regimens cause total hair loss, some cause "thinning", and some cause almost no hair loss.  Mine (4 rounds of Taxotere & Cytoxan) was the first of the three.  My onco warned me that I would lose all my hair, and she was absolutely right.  According to the women I've met here on these boards, AC (Adriamycin & Cytoxan) pretty much makes people bald, too.  CMF causes "thinning."  I don't know if Navelbine causes thinning or doesn't affect the hair bulbs.  Herceptin doesn't, from what I've read.  IIRC, some women who had AC followed by Taxol or AC followed by Taxol & Herceptin actually found their hair growing back during the Taxol treatments (after it had fallen out from the AC).

Docs who've done this a lot pretty much know what will happen... to most of us, anyway.

otter

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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May 6, 2010 07:33PM CinD wrote:

I'm four weeks out from my last round of Taxotere and Cytoxan -- I did four rounds -- and I still have some hair.  Granted, very little is left, but it is enough for me to put on a baseball cap and have it peeking out. What is left is wispy, mostly on the sides and in the back.  I look fine in the cap, but if it blew off, I'd probably scare a few children!  My onco told me that a few people do not lose all of their hair with TC, but we are more the oddity than the norm. I couldn't bring myself to shave it off, and I'm glad I didn't. I did cut it shorter after my second infusion because of the pulling on the scalp, and that seemed to help with the discomfort. After that, there was very little discomfort.  Now I have a good amount of small hairs filling in the blank spots, and I'm hoping I'll be able to blend the new hair with the old.

Lt Lump then Lt MX + AND, OncotypeDX Score 11 Distant Rate 8%, TCx4, Tamox Dx 10/26/2009, IDC, 2cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2-
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May 6, 2010 08:25PM msmpatty wrote:

I'm one of those who lost all my hair during A/C, but it started growing again mid-Taxol (12-weeklies).  I finished chemo with about 1/4" of new growth.  Others on these boards have experienced hair growth during weekly Taxol, but my chemo nurses were really surprised.   Patty

Dx 5/13/2009, IDC, 2cm, Stage II, Grade 1, 2/13 nodes, ER+/PR+, HER2-
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May 6, 2010 08:34PM Mantra wrote:

I was surprised as well to hear about having chemo for DCIS.

Dx 7/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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May 6, 2010 08:52PM riley702 wrote:

I've been through four cycles of Avastin, Taxotere, and Xeloda and my hair has only thinned. You can barely see my scalp under the hair up front, o/w it looks pretty normal. My Dad had the same thing happen when he had chemo for lung cancer - at the time we thought it meant the chemo wasn't working, but when I mentioned that to my onc., he shook his head and said it was more a matter of genetics; that some people didn't lose all or even most of their hair.

That said, my next four rounds are Avastin, Adriamycin, and Cytoxan, so we'll see if that's the tipping point for losing it all.

Carolyn - 6 months neoadjuvant chemo (clinical trial), BMX and rads. Dx'd and treated as TN. After MX, I was informed my tumor was weakly ER+ after all (8%) Dx 1/26/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Targeted Therapy 2/8/2010 Avastin (bevacizumab) Chemotherapy 2/8/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel), Xeloda (capecitabine) Surgery 9/4/2010 Mastectomy: Left; Lymph node removal: Sentinel, Left Radiation Therapy 10/18/2010 Breast, Lymph nodes Surgery 12/13/2010 Prophylactic mastectomy: Right Hormonal Therapy 12/31/2010 Hormonal Therapy 8/7/2011 Aromasin (exemestane) Hormonal Therapy 1/14/2012 Arimidex (anastrozole)
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May 7, 2010 03:25PM , edited May 7, 2010 03:27PM by suzieq60

I had 6 TCH and my hair only fell out after the first treatment - but not all of it. I still had it buzz cut and it was very sparse. It actually grew a little during the remainder of the treatments. I'm now 8 weeks PFC and it's filling in rapidly but I have not experienced the good growth that those who have the 12 weekly taxol/herceptin get. We've figured out that the 6 x TCH is harsher on the hair in terms of regrowth but does not necessarily make it all fall out like the AC does.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 7, 2010 04:01PM , edited May 7, 2010 04:02PM by Iamstronger

I have had 4 of 6 rounds of TCH and still have some hair.  Granted, i wear either a baseball cap or if I want to kind of dress up, a wig.  It is super thin on the top, but I have enough on the sides so with a baseball cap nobody would know that on top it is SUPER thin.  Would freak if the wind took my hat away.....

My onc is totally amazed and says that i will most likely lose it before we are done with #6.  I have my 5th txt Monday, so who knows.  But I do know that this is not the norm.

V

Dx 1/7/2010, IDC, 3cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2+ Surgery 1/13/2010 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/13/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/13/2010 Herceptin (trastuzumab) Radiation Therapy 6/4/2010 Breast, Lymph nodes Hormonal Therapy 8/14/2010 Surgery 3/1/2011 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 8/23/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/7/2014 Perjeta (pertuzumab) Hormonal Therapy 9/7/2014 Faslodex (fulvestrant) Targeted Therapy 9/7/2014 Herceptin (trastuzumab) Radiation Therapy 9/24/2014 Bone Targeted Therapy 3/23/2015 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy
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May 7, 2010 07:34PM suzieq60 wrote:

vmarie: My onc wasn't surprised mine didn't all fall out. I did have really thick hair to start with. Have you noticed any coming out subsequent to the first tx?

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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May 7, 2010 08:04PM jessamine wrote:

I did A/C and taxotere and didn't lose all of it during the A/C and it started growing back during the taxotere- I wouldn't have liked to have kept it long, a lot fell out, but I am really sorry I shaved it all rather then leaving a few inches. I'd be farther along now. I kind of wish I'd just cut it pretty short.

BRCA2+ /bi-mx apr 27 2010 w TE, exchange to silicone implants 8/23/10. 6 mos of neo-adjuvant chemo- A/C and taxotere. no rads. ooph. 10/09. 35 years old at diagnosis Dx 8/28/2009, IDC, 3cm, Stage II, Grade 3, 0/8 nodes, ER+/PR+, HER2-
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May 7, 2010 08:22PM Iamstronger wrote:

suepen:  I did lose a lot after #3.  each week i lost a little more.  But, like you, i had TONS of hair to start with.  My goal is to try and keep it until #6.  We will see...  :)

Dx 1/7/2010, IDC, 3cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2+ Surgery 1/13/2010 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/13/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/13/2010 Herceptin (trastuzumab) Radiation Therapy 6/4/2010 Breast, Lymph nodes Hormonal Therapy 8/14/2010 Surgery 3/1/2011 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 8/23/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/7/2014 Perjeta (pertuzumab) Hormonal Therapy 9/7/2014 Faslodex (fulvestrant) Targeted Therapy 9/7/2014 Herceptin (trastuzumab) Radiation Therapy 9/24/2014 Bone Targeted Therapy 3/23/2015 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy
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May 9, 2010 06:00AM , edited May 14, 2010 02:11PM by lovemygarden

This Post was deleted by lovemygarden.
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May 9, 2010 09:23AM , edited May 9, 2010 09:43AM by StillVerticle

OK ladies, I have questions about HAIR! i was on the TC combo and my hair literally fell out in one pile about a week after. I had an allergic reaction to the chemo and docs were not even sure my hair WOULD grow back. OK-now it is starting to and at first I looked like a 'chia pet' with spikes of hair sticking straight out. NOW, over four monts after, I have hair coming back in the wierdest places-like puberty REDEUX!!!-This could not be more awful. Now I look like Baby Huey!! I have a "mohawk" of a long strip of hair about an inch long sticking straight up on the top of my head and the rest of my hair is about 1/2 inch and lays flat. i cannot control the 'mohawk'!!!! What do i do? Have used gels, creams' dapper dan you name it and it has a mind of its own. Tomake matters worse, hair is erupting in the wierdest places-like this morning i notice one eyebrow had grown twice as lon as the other one. SO i use what i can to try to equalize the size of the eyebrows-NOW I ONLY HAVE ONE EYEBROW-THE OTHER IS IN THE SINK. This is just so not right!!! What have other gals done-like dye hair? or what? Actually, there is likely no fix right now and i hate that I will have to wait for it all to try to grow back out!!! XXOOO.SV

Good Girls go to heaven; Bad Girls go everywhere-Mae West! StillVerticle Dx 10/22/2009, IDC, 3cm, Stage IIIA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jun 6, 2010 05:33PM joanngil wrote:

Hi ...I just had my second treatment of TCH on Wednesday ...I still have hair , too .. i cut it short with a spikey look , and it is definitely thin , but i am happy to still have it for now .  My question is about work ... I will be having 6 treatments of the TCH 3 weeks apart , and i had the double mastectomy in late March ....i was initially supposed to go back to work 5/17 ( 8 weeks post surgery ) , but then i started chemo and my oncologist gave me more time ...disability is saying i can go back 6/22 , but i really don't feel ready ...my onc says he will get me more time ... did you work through this regimen?  Domost of us work through this or not ??????  I love my job , but i am sooooo not ready.

joanngil

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Jun 6, 2010 06:34PM cwindrow wrote:

kittycat,

Sorry for the confusion.  My profile was not updates since surgery biopsy results.  I went into surgery dcis but biopsy reported stage 1 her 2 positive small tumor.  2 tumors less than 1cm.  I was a candidate for taxol and herceptin dose dense 12 weeks weekly.  I admit, I had it easier than MOST. 

colleenW Dx 10/16/2009, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Jun 6, 2010 10:26PM riley702 wrote:

joanngil, I've been on short-term disability (insurance from work) since I started chemo. I'm exhausted and don't know if I could work, so I'm happy I don't have to. But the issue is complicated in my case by the fact that I work in a hospital (Respiratory Therapist, in ICU) and with my immune system being in the crapper and my hands peeling, I strongly feel it wouldn't be safe for me to work, even leaving out the odd nosebleed and GI issues that would undoubtedly freak out patients and co-workers.

So if your doctor is authorizing more time, TAKE IT!

Carolyn - 6 months neoadjuvant chemo (clinical trial), BMX and rads. Dx'd and treated as TN. After MX, I was informed my tumor was weakly ER+ after all (8%) Dx 1/26/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Targeted Therapy 2/8/2010 Avastin (bevacizumab) Chemotherapy 2/8/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel), Xeloda (capecitabine) Surgery 9/4/2010 Mastectomy: Left; Lymph node removal: Sentinel, Left Radiation Therapy 10/18/2010 Breast, Lymph nodes Surgery 12/13/2010 Prophylactic mastectomy: Right Hormonal Therapy 12/31/2010 Hormonal Therapy 8/7/2011 Aromasin (exemestane) Hormonal Therapy 1/14/2012 Arimidex (anastrozole)
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Jun 6, 2010 10:57PM cookiegal wrote:

My friend has been on taxol for quite a while, she is stage 4, she has lost some hair but not all, and infact the first 6 weeks it kept growing back in after she shaved her head.

You deserve a cookie!