HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   AI and Hair Loss (https://her2support.org/vbulletin/showthread.php?t=64317)

Pat94 12-22-2015 07:30 PM

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.

michka 12-23-2015 02:35 AM

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.

Juls 12-23-2015 03:50 AM

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.

agness 12-23-2015 06:49 AM

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

donocco 12-23-2015 09:23 AM

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

agness 12-23-2015 12:11 PM

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/

Lucy 12-23-2015 08:19 PM

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.

Pat94 12-23-2015 08:37 PM

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.

Donna H 12-28-2015 09:49 AM

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.

Pat94 01-19-2016 06:46 PM

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.

Donna H 01-20-2016 09:38 AM

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.

Pray 01-20-2016 02:01 PM

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. :)

Donna H 01-20-2016 02:23 PM

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.

Pray 01-20-2016 04:30 PM

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. :( :)

Donna H 02-24-2016 02:29 PM

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.

Pray 02-24-2016 03:06 PM

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 :)

Pray 05-11-2016 11:24 PM

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. :)

Donna H 05-12-2016 12:54 PM

Re: AI and Hair Loss
 
Are you using men's or women's rogaine?


All times are GMT -7. The time now is 05:42 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021