Bracing Myself For A Swift Kick Into Menopause
 

So my docs removed Tamoxifen from my drug line up because, well, I got the entire list of side effects known... Including uterine polyps and blood clots. I'm currently on Xaralto to help with the clot and am recovering from yet another D&C + ablation. The plan is to wait until I'm theraputic on the blood thinner and by the end of January I will undergo a hysterectomy and oopherectomy. I'm scared because my FHA levels are only 13 so my body is in for a rude menopausal wake up call. And to top it off they will be putting me on Arimidex. Here are my concerns, weight gain (I'm already up 15 lbs from all the crap they've already thrown at me), hair loss and joint pain. When they tried to shut me down with Zoladex my body sad F you and basically retaliated. I gained 20 lbs in 3 weeks, lost 50% of my hair, developed menopausal acne and had chronic fatigue.
I've heard maintaining a healthy magnesium level can help with AI side effects. Thoughts? For those who have had their uterus and ovaries confiscated, and forced to take this seemingly awful drug, do the side effects plateau? Or is it a landslide into obesity, baldness and stiffness?

Re: Bracing Myself For A Swift Kick Into Menopause
 

Except for my breasts, I have all my original equipment so I'm just here to address the arimidex side effects. Of course they can be different for you but my worst issue was that it elevated my liver enzymes to the extent that I had to be taken off of it to avoid permanent liver damage. I did have some stiffness of the joints in the morning. Few, if any, hot flashes. I didn't gain any weight, but I couldn't lose any weight regardless of what I did or tried while on it.

While on chemo I had extreme muscle weakness to the point it was difficult to stand and walk unassisted. There was mental confusion and extreme fatigue. I'd had about a 3 month break between ending chemo and when I started the arimidex so I saw a significant improvement in things before I started taking the arimidex. Unfortunately I went back to work less than a week after starting the drug so when I started having the symptoms again, I assumed it was because I was getting back into the routine of working and my body was adjusting (I had been off work for 10 months by that time). I only worked a short time and saw some improvement when I stopped working. A few months after I stopped taking it I saw significant improvement, followed by another (recent) decline (which may just be related to my protein intake). Having said that, the muscle weakness in my legs has only gotten better over time, with only mild periodic "hiccups" in how they work now.

My point in mentioning all that is that I believe the arimidex may have contributed to the existing issues but that it didn't necessarily cause them, if that makes sense. I didn't experience hair loss and I finished herceptin around the same time I stopped taking the drug so the growth I believe was slowed (because it grew like a weed once I was off all drugs!), but it did grow.

I don't know if that helps but that's been my personal experience with arimidex.

Good luck.

Re: Bracing Myself For A Swift Kick Into Menopause
 

So glad you are off Tamoxifen. Some people have fewer side effects on one of the AIs than another. Certainly true for me. I have had some responses concerning my hair loss but don't know if the hair will ever grow back. Anyway, good luck to you.

Re: Bracing Myself For A Swift Kick Into Menopause
 

I had an ooph back in 2006 and have had no major side effects from that or taking Arimidex either, there can be some joint stiffness at times but this is helped by exercise which will also help you avoid any weight gain. I took arimidex for eight years, a daily supplement of Glucosamine/chondroitin can help the stiffness too.

Re: Bracing Myself For A Swift Kick Into Menopause
 

I have been doing some research on trials looking into hormonal therapy for women with low ER+ status. Looks like the higher the % of ER the more effective hormonal therapy is. The tipping point looks like 10%, which is what I am. Anything under that shows no real benefit to doing hormonal treatment. And with PR status it looks like again, 10% is the tipping point. Does anyone know of any studies supporting this or not. Trying to prepare myself when I meet with onc. I am planninga full hysterectomy/oophorectomy and I feel like killing off that much estrogen production should be enough. An AI may not be worth the crappy side effects with my ER being 10% and PR 5%. I think it may be overkill. Any thoughts?

Re: Bracing Myself For A Swift Kick Into Menopause
 

I can't speak to the "instant" menopause you are facing (and I'm really sorry but glad you are off the tamoxifen poison). I was post-menopausal for both breast cancers, on tamox for 4.5 years and then Femara for 5 years (the first BC).

HATED tamoxifen - gained weight, retained fluid, legs were sore and swollen all the time but there was no real alternative because the study comparing tamox with AI's hadn't been finalized yet. Went given the option for the AI - I jumped and didn't then and haven't this time around found the side effects to be anything other than stiff joints, especially in the morning. But I am also way older than you so who is to say what is the natural aging process. I work out daily - weights and walking, which definitely helps.

Wanted to mention that I was on HRT for 5 wonderful years prior to my first BC diagnosis. Losing estrogen sucks but if it fuels the cancer, we have tools like tamox and AI's.

Everyone reacts differently to the AI's and lots of women here have tried multiple AI's to reduce the side effects which seems to work. I'm back on Femara and have found the side effects to be as benign as they were the first time. I was on Arimidex for 2 months and was miserable. Go figure

Best
Janis

P.S. Within a month of going off the tamoxifen, I felt 500% better. I'm sure some of that was mental but it helps when you drop 7 lbs in 2 weeks! :-)

Re: Bracing Myself For A Swift Kick Into Menopause
 

Re: Bracing Myself For A Swift Kick Into Menopause
 

When I got my ooph to go on Armidex, my onc made me wait 3 weeks so my estrogen could come down before we took it all the way down with the AI. He said it would be easier on me and the wait time is nothing as there is still estrogen in your body from the ovaries anyway and an AI doesn't do anything about what's already there. It was supposed to make It all a little easier. Since I did it that way, I have no idea if it was but his recommendation seemed logical to me. It was a bit rough but I got thru it within 2 months. UTIs were my biggest devil in the first 6 months or so. Just post if you have difficulties. We are here for you.

Re: Bracing Myself For A Swift Kick Into Menopause
 

Ladies, how much estrogen did your tumors have and how old were you when you went to an AI?
I have spent the better part of my day reading studies and trials and I keep seeing that trials dealing with hormone therapies say that the higher the ER levels the more beneficial the treatment will be. But one study stuck with me. It was a study showing the benefits of hormonal therapies in women of different ER %. They looked at women with ER at less than 1%, 1-9% and over 10%. Turns out women under 9% saw little to no benefit because the chemistry of their tumor was complete different of that of women with above 10%.
So I'm wondering what the benefit of hormone therapy or removing my ovaries will be since I am at 1% more of the group that saw no benefit. And I did 3.5 yrs of tamoxifen which has caused Hell. I'm struggling with this because my experience with Zoladex was horrific and if that's any indication of what my life will be without my ovaries, I rather take my chances without anything.
Also, at 41 I feel like I have ways to go before my body starts fluctuating hormonally as I enter menopause. And I know that that fluctuation can be a culprit in developing highly ER+ breast cancer. So couldn't I wait until I'm 46, closer to a natural age of menopause to take my ovaries out? Wouldn't that help my body naturally raise my FHA levels and reduce my estrogen swirling in my body?

Re: Bracing Myself For A Swift Kick Into Menopause
 

I was 46 when I got my ovaries removed. My tumor was 50 % ER but PR negative.

Re: Bracing Myself For A Swift Kick Into Menopause
 

I was forty six too, can't recall the numbers but was highly positive for both hormones.

Re: Bracing Myself For A Swift Kick Into Menopause
 

The hair loss points to high androgen levels. The estrogen positivity points to inadequate clearing of estrogens by the liver and gut. Progesterone metabolites being an issue is something Im still looking into.

Have you tried to work on these issues separately? Maybe some drastic dietary changes might make up for the differences in your metabolism? Have you had any testing done of your hormones or nutrition levels by someone who is certified in integrative oncology like a FABNO? I would try that before doing the oopherectomy. Also, keep in mind I do know a few gals from my chemo group who had their ovaries out and most tolerated it really well.

Ann

Re: Bracing Myself For A Swift Kick Into Menopause
 

Thank you ladies!
Agness, when I was diagnosed I was super unhealthy. I was overweight, was barely active, ate the worst things and had a glass of wine a day. Since being diagnosed I have been seeing a dietician and together we figured out (after testing) that my flora in my gut was extremely depleted and that the natural bacteria in my intestines was an issue too. So I now consume co enzymes and Swedish Bitters daily. I also try to eat liver friendly foods and try to do a liver cleanse once a month. I don't drink anymore because it turns out my body doesn't metabolize alcohol well and that has to do with my liver. So I have become very aware of what I put in my mouth and I monitor my liver functions, digestion and over all health. I have been doing research and it turns out one can actually eat foods that are natural SERM, like flax and mushrooms.
I'm going to go make an appointment at GW Hospital's wellness center and see if there is more I can do naturally to be able to keep my eggos in place until I'm 45ish. At that point I think I will be okay giving them up.
Thanks again for all of your responses.