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Old 12-22-2015, 07:30 PM   #1
Pat94
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Join Date: Jul 2013
Posts: 100
AI and Hair Loss

I have read between 10% and 32.4% of women on an AI will experience hair loss of some type. Mine is awful. It appears to be male pattern baldness. There are bald patches in areas around the crown continuing to get worse and severe thinning around the fringe (I think of it as a monk's hair style.) I was on Femara for 3 weeks and had terrible SEs so was taken off of it. A month later I was started on Aromasin and have been on it for a month. The hair loss is from both. My onc has referred me to a dermatologist whom I see in mid-January. Who else has experienced it? Are there any successful options for putting hair back on my head? Or do I break down and finally buy a wig? I just wore toboggan caps for chemo. For some reason this bothers me so much more than the chemo complete baldness. Any advice is greatly appreciated. By the way, I am only 5% ER positive and 0% PR. I did not expect so severe a response to taking an AI.
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Old 12-23-2015, 02:35 AM   #2
michka
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Posts: 858
Re: AI and Hair Loss

I understand that this can make you upset! I was on AI and did not experience that SE but it can happen from what I know. But being only 5% ER+ I would stop. The benefits for a 5% ER+ are so small compared to the SEs of AIs. But it is only my opinion.
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 12-23-2015, 03:50 AM   #3
Juls
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Re: AI and Hair Loss

I am on Femara and hair was slow to grow at forehead - like male pattern baldness. I was told this was a common side effect. At one point I considered getting hairdresser to put weave/extensions in fringe! It eventually thickened up and now not obvious.
I am strongly ER+, as well as PR+ , so worth staying on Femara.
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Old 12-23-2015, 06:49 AM   #4
agness
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Re: AI and Hair Loss

Wow. I am in agreement. Hormonal therapy for you seems like overkill and your body is reactive really negatively. Try other methods of improving your health and liver function so that you take care of the imbalances with your body and not these drugs.

Have you had your blood labs tested for these things yet?

Serum zinc
Serum copper
Serum ferritin
Serum Vit D
Serum magnesium

If not then you should demand they get tested at your next draw by whomever will listen to you. The results will help you figure out how to restore and rebalance.

Let's fix you and not hurt you with poorly thought out therapies of limited value and much harm.

Hugs

Ann
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 12-23-2015, 09:23 AM   #5
donocco
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Join Date: Oct 2013
Posts: 474
Re: AI and Hair Loss

I dont know if there is much you can really do except hair transplantation like in men. Women of course carry the baldness gene but the estrogen proponderence protects them from the balding effects of Dihyhdrotestosterone or DHT. When you go on an estrogen blocker the baldness gene will be manifest if you carry it.

Propecia (Finasteride ) blocks the formation of DHT from testosterone. Its an option but I dongt know its effect on breast cancer. As Propecia is an anti-androgen of sorts it may well have a positive action. Not sure. Speak with the oncologist.

Paul
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Old 12-23-2015, 12:11 PM   #6
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: AI and Hair Loss

Here's a link for you that I found that if you are willing to put the work in would take the place of tamoxifen:

http://elynjacobs.com/2012/01/15/nat...-to-tamoxifen/
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 12-23-2015, 08:19 PM   #7
Lucy
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Re: AI and Hair Loss

Hi Pat,

This is one of those hard questions because at the end of the day, you have to decide what works best for you. If it were me, I would see the dermatologist before I made any changes in anything - see what they could offer.

My estrogen level was only slightly higher than yours and I made the decision to discontinue all hormone therapies after being on anastrozole and having to go off of it due to increasing liver enzyme numbers. It scares me a little to have made that decision but what helps me with the decision is, according to my oncologist, that as recently as 2 years ago they wouldn't have recommended hormone therapy for someone with as low of an estrogen level as we have. Guidelines were changed about 2 years ago to prescribe hormone therapy to anyone who had any level of estrogen in their tumors. Not because there was evidence that it was beneficial to those of us with low levels, but to be consistent with estrogen positive tumors. At least that's my understanding. So as of now, I'm not taking anything. That may change when I see my oncologist in March but I think that's unlikely.

Also, I read the article posted by Agnes. It's an interesting article and one I would discuss with my oncologist if considering following its suggestions. The only comment beyond that that I have is that it references taking milk thistle to help with your liver and I've been told by several different medical professionals that milk thistle either produces or mimics estrogen so estrogen positive cancer patients should avoid it.

Good luck. Let us know what you decide.
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Old 12-23-2015, 08:37 PM   #8
Pat94
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Re: AI and Hair Loss

I agree with your advice to see the dermatologist in mid-January. I meet with my med onc shortly before that to discuss my side effects from the Aromasin. I was very depressed when I was on Femara but thought it was just my personal response to this not very pleasant never-ending merry-go-round. About 10 days after going off it I suddenly had the cloud lift and realized it was drug induced. Once again I am down in the dumps - whether it is because I really, really hate looking like my uncle used to look or, more likely, it is drug-induced again. I will definitely mention it to him when I next see him.
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Old 12-28-2015, 09:49 AM   #9
Donna H
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Re: AI and Hair Loss

I saw an endocrinologist last month and asked about hair loss while on AI and she agreed completely. My onc dismissed my hair loss being a result of AI. I agree that hair thinning/loss/male pattern baldness is worse than chemo induced baldness - at least I thought my hair would grow back fine once I was done with chemo. I feel like so many side effects were not disclosed or even mentioned before this crazy journey...at least for me. I haven't worn my hair short since the early 70s so seeing the short and thin hair is a constant reminder of having had cancer. I am very glad to be NED but feel like I can't completely move forward until I look more like myself. Worrying about hair is so shallow, but there it is. The truth aint always pretty. But I am thankful for the hair I have.
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Old 01-19-2016, 06:46 PM   #10
Pat94
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Re: AI and Hair Loss

I saw the dermatologist last week. She calls it female pattern baldness. Some hair didn't come back after chemo but she agrees the major culprit is the Aromatase Inhibitor. She said it will continue to get worse as time passes. She recommended I start Rogaine - the 5% male one instead of the weaker female. In addition I am supposed to get an ultraviolet brush and use it 3 times a week. I am to return in 6 months to see if any of it is working. If it isn't working by then, I guess I can go with a wig.
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Old 01-20-2016, 09:38 AM   #11
Donna H
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Re: AI and Hair Loss

Hi Pat -
Let us know if you decide to use Rogaine. I have wondered if I should try it as well. I have tried specialty shampoo - I dont think that worked at all. I hate that my uber short and thin hair bothers me so much, but it does.
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Old 01-20-2016, 02:01 PM   #12
Pray
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Re: AI and Hair Loss

Ugh I too thought my hair loss was from the aromasin, so I had a biopsy done to make sure and dag nab it he said female (male) pattern baldness. Hello Rogaine. If anyone else has any suggetions I would like to hear them.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 01-20-2016, 02:23 PM   #13
Donna H
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Re: AI and Hair Loss

Pray - Who did the biopsy? A dermatologist or someone else? I didnt know there was an actual test for male or female pattern baldness! I hate side effects.
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Old 01-20-2016, 04:30 PM   #14
Pray
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Re: AI and Hair Loss

I saw a dermatologist. H cut a piece from the top of the front of my head. I went with the belief that it was from aromasin. He told me if it was from that it would show "scars" like when chemo made the hair fall out or meds.. also it would have fallen out in clumps pretty quickly not over months. Glad I went though, the sooner you start any kind of treatment the more hair you retain (I hope) Hope this helps.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 02-24-2016, 02:29 PM   #15
Donna H
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Re: AI and Hair Loss

Hi Pray-
Have you been using Rogaine? Any results to report? My gp suggested I give it a try, after I get the ok from my oncologist.
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Old 02-24-2016, 03:06 PM   #16
Pray
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Join Date: Apr 2011
Location: Michigan
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Re: AI and Hair Loss

Hi, No, nothing happening yet. The dermo. said at least 3 months so I'm still very hopeful It is hard to tell because my hair "under my color" is pretty white. I'll keep you posted
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-11-2016, 11:24 PM   #17
Pray
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Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: AI and Hair Loss

Quick update: I've been on the Rogaine for almost 4 months now. Its working! My hair is noticeably thicker. It stills grows slow but I am content. It doesn't even take two minutes to put it on and it helps to style my hair. I'm very glad I started it.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-12-2016, 12:54 PM   #18
Donna H
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Join Date: May 2014
Posts: 307
Re: AI and Hair Loss

Are you using men's or women's rogaine?
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