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Topic: Does Everyone lose hair with Chemo?

Forum: Chemotherapy - Before, During and After — Regimens, side effects, and support from others going through chemo.

Posted on: Nov 19, 2009 12:32PM

4lumps wrote:

I'm currently waiting for the phone call to set up Chemo & Radiation.  I don't know what kind I will have, but I was just wondering does everyone lose hair with Chemo?  Thanks Log in to post a reply

Posts 1 - 26 (26 total)

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Nov 19, 2009 01:00PM rinna40 wrote:

I believe the answer is no, there are some chemo regimens where you don't loose your hair. That being said, I don't know of any ladies with BC who underwent chemo and didn't loose their hair. I think that most of the standard chemo protocol for BC involves drugs that cause your hair to fall out. Mine fell out two weeks after my first chemo. My last three chemos were with a drug called docetaxol, and with that my hair did grow back slightly (about 1/8 inch). It is only since I finished completely that the hair has started to slowly grow. It sucks. My advice is to get a good wig, as I found that to be the only way I could go out and not feel that people were looking at a cancer patient, but seeing me instead. I had many people comment on my cute new hair cut!!!! 

Hugs to you

Rinna 

Dx 2/23/2009, IDC, 3cm, Stage II, Grade 3, 0/13 nodes, ER-/PR-, HER2-
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Nov 19, 2009 01:15PM PurpleMe wrote:

I agree with rinna40, not all chemo's cause hair loss. Some regimes might only cause hair thinning. That said, I was on Taxotere and cyclophosphamide (TC for short) and I did lose my hair.  Now seeing your diagnosis IDC, 1 cm, Stage 1, Grade 1 and no node involvement, if your oncologist suggests chemo I would definitely ask why. 

You might want to check this link out for more info and do not be afraid to ask your oncologist lots of questions. 

http://www.aolhealth.com/decision-point/should-i-use-chemotherapy-for-early-stage-breast-cancer 

You will need to cut and paste this into your web browser.  Still can't figure out how to paste an actual link into these posts.

(((((Hugs)))))

Carol 

My life is an unfinished canvas waiting for the next brush stroke.

Dx 10/2008, IDC, 1cm, Stage IIa, Grade 2, 2/10 nodes, ER+/PR+, HER2-
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Nov 19, 2009 01:17PM PatMom wrote:

I am somewhat surprised that both chemo and radiation are being recommended for you with stage 1, grade 1, ER+, no node involvement and you having had a bilateral mastectomy. 

Has your doctor ordered an Oncotype DX test to see if chemo would be effective for you?  Chemo is usually most effective against more aggressive (higher grade) tumors.  It is unusual to have grade 1 and HER2+, and Herceptin is usually only given with chemo, but some people have gotten just the Herceptin.  With a slow growing ER+ cancer, and grade 1 is slow growing, hormone treatment like Tamoxifen is usually the far more important part of treatment than chemo. 

There are some chemos not usually used for breast cancer (but sometimes used with Herceptin) that cause hair thinning, but not total hair loss, and if that is a big concern for you, you should ask your oncologist about that.  The way your oncologist answers will speak volumes about how the whole chemo situation will be handled.  If your concerns are dismissed, please, please find another oncologist because every oncologist is asked about hair loss on a regular basis, and if they haven't figured out how to help you deal with that, they won't have figured out how to handle the other side effects that you are likely going to have to deal with. 

I chose not to do chemo.  The hair loss was a part of it, but not the biggest part.  I was far more concerned about cardiac damage, nerve damage, and the other potentially long term side effects.  I am a year and a half into taking Tamoxifen, and while I'd love to not have any side effects with that, the ones I have are things I can live with.

This is one of those times in life where you need to take charge, gather all the information you can, and make the decisions that are right for you and your life, and not just accept whatever a doctor recommends because they are a doctor.

Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive.

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Nov 19, 2009 02:02PM, edited Nov 19, 2009 02:04PM by 4lumps

This Post was deleted by 4lumps.
Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 19, 2009 02:03PM 4lumps wrote:

Thanks PatMom,

    I haven't heard anything about my Oncotype DX?  I just called and left a message with my Drs assistant to find out what minds is.  My guess is that they're saying Chemo/Radiation because after my mastectomy they found more cancerous lumps. So in all I had 8 in total in my left breast(all smaller than 2cm).  They were pretty optimistic about me NOT having anymore cancer in my body right now.

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 20, 2009 10:55AM 4lumps wrote:

I talked to my Oncologists, assistant.  And she said since my tumors were fast growing, they strongly suggest that I have Chemo.  I'm still waiting to make my appt. w/the Chemo Dr.  They're out of town this week. FrownCry

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 20, 2009 11:57AM 4lumps wrote:

PurpleMe,

      Thanks for the link!!! Laughing

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 20, 2009 12:13PM dlb823 wrote:

4lumps ~  Definitely ask for the Oncotype-DX test.  If nothing else, it will assure you that your oncologist is making the right call.

As far as hair loss, you might try searching here for and/or Googling the Penguin Cold Cap.  I don't know much about it, but I have read since doing chemo that some women here were trying it.  I believe the science behind it has been around for awhile without a lot of success, but I think this is a newer version, so maybe better???  Anyway, I'd certainly look into it because I know from experience that using cold packs (or the cold mitts supplied by some chemo infusion centers) will protect fingernails from chemo damage.

Glad your surgery is behind you...  Deanna

"The soul would have no rainbow if the eyes had no tears" Native American proverb

Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-Dx 1/3/2014, Stage IV
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Nov 20, 2009 01:08PM 4lumps wrote:

Thanks Deanna,

   I asked about my Oncotype-DX test and I was told to ask the Chemo Dr, when I get my appt.  My Oncologists assistant said that they presented my case in a conference with a group of other Oncologists and they all felt that I would benefit from Chemo.  I guess I'll have to pray that the kind of Chemo they suggest doesn't cause hair loss.

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 20, 2009 01:20PM tttyyy11 wrote:

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Nov 20, 2009 02:20PM Mickey32 wrote:

I lost my hair within 2-3 weeks of my first chemo treatment.  I never lost my eyebrows or my lashes.  It has been 7 weeks since my final chemo and wouldn't you know, my eyebrows and lashes are falling out over the last few days!  I am down to 1/2 of a brow on the left....I thought I was home free, but apparently not!  My hair (on my head) is growing back, it is solid white and fuzzy all over.  Anyone else lose brows/lashes this far out from chemo? 

Dx 2/2/2011, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Nov 23, 2009 11:10AM PurpleMe wrote:

Hi Mickey32...I too thought I was home free on the lashes and brows front when I went through chemo, nope, mine fell out after my last chemo.  I had 4 rounds of TC.  Also have heard that brows and lashes can grow back and fall out a few times before they "stick". My lashes have come back somewhat, my brows are very, very faint.  My last chemo was Feb 18/09.  When the hair on my head started to come back it too was mostly white but as it grew in more it became more pepper and salt.

I have also noticed that while my "body" hair grew back, it has started to disappear again which concerns me.  Discussed this with my family doctor and he is running tests to make sure nothing else is happening.  I am not so concerned about the "body" hair disappearing however, I want to be sure it is not going to affect my head hair!! 

My life is an unfinished canvas waiting for the next brush stroke.

Dx 10/2008, IDC, 1cm, Stage IIa, Grade 2, 2/10 nodes, ER+/PR+, HER2-
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Nov 23, 2009 04:54PM, edited Nov 23, 2009 04:55PM by CoolBreeze

Ladies, she's HER2+.  She has to have chemo, even with no nodes and a small tumor.  And, she'll have herceptin.

I saw your other post about your nervousness over hair loss.  I found some cute wigs in a brand called Forever Young. They are fresh and edgy and fun, and maybe knowing you can find cute and inexpensive wigs will make you feel better?  Think of all the styles you can have!

You almost certainly will lose your hair although I suppose you can get lucky.  But, like I said before, HER2+  cancers,so matter how small, have an extremely high risk of reoccurance and they often mets to the brain.  So, you reallly have no choice in the matter, you have to do what they recommend.

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Nov 23, 2009 05:10PM NatsFan wrote:

You know, losing my hair wasn't as bad as I thought.  It fell out like clockwork on Day 15 after my first treatment.  I had a really pretty wig, but I just didn't like wearing it.  I'm not a scarf gal, so I ended up just wearing baseball caps with a lot of long, dangly earrings.  My co-workers and family bought me lots of caps, so I ended up with a cap in just about every color. My work fortunately is very casual and supportive, so it was absolutely no issue to wear a baseball cap to work.

At first I was really self-conscious, but after a few weeks of chemo I got used to it, and frankly with the chemo fatigue I got to the point where I really didn't care if someone stared or pointed - that was THEIR issue, not mine.  One of my favorite caps was a Washington Nationals cap with a pink ribbon it - I actually got a lot of support and "attagirls" from survivors who saw me wearing it, so that was a nice bonus having these fabulous energetic and vital women who were 5, 10, 15, etc. year survivors come up to me and tell they'd been there and gotten through it, and I could do it, too.  

Also, in a weird way, it was actually rather nice not having to deal with hair - I just got out of the shower, towel dried the scalp, and I was ready for work.  None of that fussing with gel, blow drying etc. I was so wiped out from chemo (I worked full time during chemo) that I was grateful for one less thing to fuss with.  And I didn't have to shave my legs/pits for a year, no eyebrow plucking, and those nasty little chin hairs you can spend hours plucking?  Gone!!  No worries about them at all for a year!  

Everyone is different - some people wouldn't go out to get the paper in the driveway without their wig, and some people get to the point where they actually go commando with no wig, scarf, or anything. Most fall somewhere in-between.  You'll find what's right for you, and you will get through it.  

Mary

Dx 12/31/2007, IDC, 2cm, Stage IIb, Grade 3, 1/15 nodes, ER+/PR+, HER2-Surgery 01/30/2008 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/04/2008 Adriamycin, Cytoxan, TaxotereHormonal Therapy 07/01/2008 FemaraSurgery 10/09/2008 Reconstruction: DIEP flap (Both)
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Nov 23, 2009 06:02PM PatMom wrote:

CoolBreeze wrote:

Ladies, she's HER2+.  She has to have chemo, even with no nodes and a small tumor.  And, she'll have herceptin.

No one "has to have chemo".  No adult can be forced to do chemo. 

I'm sure that 4lumps and her medical team will make the decision that is right for her.  Not everyone who is HER2+ chooses chemo.  Her tumor is listed as grade 1, which is very unusual for an HER2+ tumor since they are frequently aggressive.  Chemo is less effective against grade 1 tumors than against the more aggressive ones usually associated with HER2+. 

Every treatment has risks, and some benefits.  We each need to weigh our personal risks and our tolerance level for those risks against the potential benefits and come up with the treatment plan that works for us. 

For me, in spite of having had a large, grade 3, HER2+ tumor, the risks associated with chemotherapy outweighed the possible benefits.  I am a year and a half into taking Tamoxifen, and a number of women who had similar initial stats at about the same time who did chemo are currently dealing with recurrences, ongoing effects from the chemo, or are no longer with us.  Chemo is not a guaranty of success, and neither is Herceptin. 

Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive.

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Nov 23, 2009 08:31PM CoolBreeze wrote:

Chemo is not a guaranty of success, and neither is Herceptin.

No, but but chemo and herceptin greatly increase the chances of her survival.  Her team of doctors have already said unanimously that she needs chemo. 

HER2/NEU-overexpression is a very negative prognostic factor. As a result, current treatment guidelines classify all HER2+ breast cancer patients at high risk of relapse, and recommend herceptin and chemotherapy - no matter the tumor grade or node status.  The four year disease free survival rate of HER2+ cancer with chemo alone is only 67%, with herceptin it jumps to 85%.  I do not know what it would be with no chemo at all. Perhaps you do?  I googled and couldn't find that information.

The risks of today's chemo are minimal although the side effects are unpleasant.  I don't want to lose my hair either but six months of wearing wigs is nothing compared to getting to live long enought to see my grandchildren and have many more Thanskgivings and  Christmas's.  I have never been a gambler and this isn't where I want to start.    I would not encourage this woman to do that either.  However, she should do her own research in conjuction with what her doctors recommend.

I wish you long-lasting good health and that you dance with NED forever. :)

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Nov 23, 2009 09:49PM makingway wrote:

I don't know which to repond to first...The comment:

Ladies, she's HER2+. She has to have chemo, even with no nodes and a small tumor. And, she'll have herceptin.

No one "has to have chemo". No adult can be forced to do chemo.

OR

You almost certainly will lose your hair although I suppose you can get lucky.

It's true, no one is forced to do chemo. But, they look at you as if you had grown two heads when you question the validity of it. The more I read, the less value it appeared to me. But that's me. Everyone has to read and make their own decisions. Chemo was found to be more effective for triple negatives from what I recall.

And the HAIR issue! Why this is even an issue at all makes me go postal. The Penguin Cold Caps work. I have seen them work on 2 woman who did 4 and 6 treatments of TC. Every oncologist should have the caps available for 'their' patients. I believe that ethically, any way to minimize the effects we suffer from a breast cancer diagnosis should be made by the 'Medical Establishment'. Unfortunately it's a just that, a for-profit establishment.

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help

Dx 3/2/2009, ILC, 4cm, Stage IIb, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Nov 23, 2009 10:03PM CoolBreeze wrote:

Honestly, I don't believe you have done legitimate research.  Are you hanging out in the alternative forums or something?

Triple neg breast cancer is one of the most aggressive forms and only responds to chemotherapy, which is a far cry from being more efffective for those woman.  Triple negs don't respond to the normal receptors known to be involved with breast cancer, such as hormone status and HER status.  The only choice they have is chemo, not that it is more effective.

Nobody said the OP is "FORCED" to have anything.   I said she had to have it because people were questioning why a node negative patient was being offered chemo.  The standard of care for all HER2+ patients is chemo/herceptin.  If she wants to give herself the best shot at living a full life based on all statistics, than she has to have it. 

If she wants to gamble and eat grape seeds - well, then she doesn't have to have it.  She's an adult, she can choose her path.

Nobody puts a gun to anybody elses head.  All we have is research and medical statistics to rely on. I know the alternative gals believe what they believe but I belive in the medical community and clinical trials to get my data.   Those who make a choice to ignore them do so at their own risk, in my humble opinion.  However, I would never deny you that right. 

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Nov 23, 2009 10:27PM, edited Nov 23, 2009 10:59PM by swimangel72

Hi 4lumps - I'm sorry you have to get chemo. You have almost the same pathology as I did - and I had my breast removed as well for a tumor that was very small, just .9cm - in just one place. At first my oncologist said I didn't need chemo because my Oncotype DX score was "low". But then he finally got the results of my FISH test faxed to him (the delay was caused by my breast cancer surgeon who dropped the ball.) Five minutes later, he opened the door to the waiting room and had the saddest expression on his face - saying, "I'm sorry you WILL need chemo after all!" My Oncotype DX score was a 22 - which is really "low-intermediate".........but still because the tumor was a Stage 1 Grade 1 and ER/PR+ he felt very comfortable at first saying chemo was unnecessary..................UNTIL he found out that the tumor was highly Her2+ (over 4.5) However - the chemo he gave me did NOT cause me to lose any hair. He put me on an unconventional treatment plan............I was given Navelbine in an IV drip every two weeks with Herceptin for four months.............then I continued on Herceptin every two weeks for the rest of the year. My hair did get thinner, due to the Navelbine, and my fingernails were chipped away (due to the Herceptin) and the night after my infusions I'd get a bit of diarrhea...........but that was all the SEs I can remember having. My  heart was monitored 3 times that year with muga scans and it never changed. I chose to see a cardiologist after I was done with treatment and I passed all his tests with flying colors.

So.........I want to reassure you that with a Stage 1, Grade 1 triple positive tumor you can get chemo with Herceptin that won't cause a lot of SEs............depending of course on what your oncologist decides. My oncologist met with a tumor board and they all agreed (I also had 3 separate opinions from three different oncologists and they all agreed that Navelbine was a good choice for me) All these oncologists referenced a study done in Finland that proved Herceptin works well with ANY chemo regime..........so perhaps your onc will let you use Navelbine too.

I hope my story helps you get through the difficult decisions...........but I want to emphasize that since your tumor was Her2+  - it doesn't matter how small it was - it's a nasty, aggressive cancer but Herceptin is like a miracle drug that will reduce your risk for recurrence or mets by a large percentage (ask your onc for all the numbers.) Good luck to you and let us know what you decide to do!

P.S. Edited to add:  4lumps - for more information and support about Her2+ breast cancer, visit www.her2support.org.........the women there are very well informed about Herceptin and are very supportive.

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Nov 23, 2009 10:39PM gfbaker wrote:

I don't know the age of anyone else, but I was 38 when diagnosed, and was told that pretty much anyone under the age of 40 is at a high risk for reoccurance and so therefore should do chemo. I was also told that while oncotype dx is great for women over 40, those in 20's and 30's don't have enough of a track record to make it a good test to assess your reoccurance.

I can tell you that I found chemo easier than I thought it would be. I did adriamycin/cytoxin and then taxol, and my hair started growing in during my taxol treatments. If you are worried about your appearance, get a wig before your hair goes (yes, right around 2nd treatment is average time to fall out), and I started wearing mine before the hair went so I got used to it as my new look that I picked, not one that chemo made me do.

I am sorry you have to deal with this!

Gayle

Dx 5/6/2008, IDC, 1cm, Stage IIa, Grade 3, 1/13 nodes, ER+/PR+, HER2-
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Nov 24, 2009 08:36AM OMAHAROSE wrote:

In 1991 I had a modified radical mastectomy, followed by chemo (I wasn't a candidate for radiation).  I did not lose my hair, but I no longer have underarm hair or leg and arm hair, which is a good thing in that I no longer have to use a razor.  So ... I'm living proof that not everyone loses hair on on their head.     

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Nov 24, 2009 12:42PM 4lumps wrote:

Thank You Everyone for ur comments. 

 I just came back from my appt w/the radiologist.  I have my appt. to meet the chemo dr tonight.  So far all I know is that following whatever chemo they give me, I'll have Radiation 5 days a week for 6 weeks. 

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Nov 24, 2009 03:16PM Mickey32 wrote:

4lumps, good luck to you at your appointment!  Yes, there is a lot of information to take in and process....it is overwhelming. You will make your decisions based on the recommendations of your health care practitioners and what is right for you.  I support you! 

If you have chemo and if you have hair loss, remember it is very temporary for most people.  When you see it growing back, you will be in awe of how your body repairs and rejuvenates itself. Wink

Dx 2/2/2011, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Nov 24, 2009 04:44PM PatMom wrote:

Coolbreeze, I would not normally respond to a PM in a public forum, but you spit out a message that tells me you misinterpreted my words, and then blocked messages from me, so I have no other option.  Please re-read that last paragraph of my PM to you.  I wrote about your need to focus on the task ahead of you without distractions right now.  That is the only thing that I meant in that comment, that you are facing a huge challenge, and need to focus all of your energy in that direction right now. I am very sorry if it came across in a different way.  That was never my intention.   

Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive.

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Nov 24, 2009 04:51PM momand2kids wrote:

4lumps

You can do this--- the hair part is hard, I will admit.  I found it easier to shave it off myself then wear the wig--so I shaved it at least 2 weeks before it started to fall out.  I had human hair wigs and no one could tell the difference.... there are lots of great options out there.  I know there are sometimes people who don't lose their hair--my hair shaved was still on my head at the end of treatment, but they just don't know if you might be the one in thousands who does not lose their hair.  I had A/C where hair loss was pretty much guranteed.

Like others, my eyelashes and eyebrows thinned about a month after treatment ended.... then came back in about 2 weeks.

I wore the wig from January to July--- and now have a mop of curly, thick hair that I love.  My hair was very thick and straight before.  

This is hard, but you will be amazed how quickly it passes.... I am sorry you are going through this--check in often-best of luck with your onc.... think of chemo as chasing down any potentially stray cells that snuck out!!!

Dx 10/29/2008, ILC, 2cm, Stage II, Grade 2, 0/1 nodes, ER+/PR+, HER2-Surgery 11/25/2008 Lumpectomy (Right)Chemotherapy 01/16/2009 AdriamycinRadiation Therapy 03/23/2009 ExternalHormonal Therapy 06/15/2009 Femara
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Nov 24, 2009 05:34PM, edited Nov 24, 2009 05:38PM by Hopbird

The decision to have chemo or not is between a woman and her doctors.  I don't know that others should try to second-guess it.  4lumps, if the doctors recommend it you should understand why, then trust their knowledge.  I was HER+ with a tiny microinvasion, node negative.  Quite a bit of DCIS.  I had a mastectomy, and several doctors agreed having chemotherapy was as risky as not having it, so I didn't.  A year later that same cancer showed up in the axillary nodes along that breast, and there was no doubt chemo was needed. 

While I may have made a different decision if I could see into the future, I'm comfortable that I made the best decision for the time.  You need to feel like you are making the best decision for you with the information your doctors provide.......then don't second-guess it.

On hair loss, it is probably the hardest part emotionally of the chemo experience.  But once we get past it a lot of women find fun ways to cover their heads, enjoy a different look with wigs, and even rock the bald with lots of makeup and big earrings.  Like the other women have said, you'll get through it. 

Original diagnosis May 12, 2008...Recurrence 2009, Mets 2010. Craniotomy #2 in August of 2011...I'm ready for a beak in 2012!