I Need Advice About AI's

Cee67 · March 2015

Hi Ladies!

First, I know you aren't doctors, but I don't need a doctor - I need your experience on AI's and anything else.

I have quite a few medication sensitivities which cause me lots of stress when faced with trying something new.

I am premenopausal, but likely in my last couple years of having a period. My oncologist prescribed Tamoxifen, which I didn't want. So we decided to try Arimidex, but I needed Lupron to shut down my ovaries and make the Ax work as it should. I was too nervous to take the Lupron. It's injected and if I react badly there's nothing to be done til it wears off.

Onc suggested I try Ax first without Lupron, just to see how I felt. I had SE's within 3 hrs of my first dose. After my 2nd dose the next day I was in so much pain in my lower back (met there) that I could not get out of bed. My hands were not swollen but felt that way. They were both completely frozen!

The dizziness set in and it was so bad my husband had to help me bathe, and on and off the toilet for two days.

This was over a month ago and I still have stiffness in one hand I am hoping isn't permanent but am beginning to think it is

My oncologist told me to go home and let nature take its course, and that I probably had "a long while yet." I asked to try a different AI and she replied and I quote: They are all the same.

I know they're similar, but these forums are filled with women who go from one to another if there are SE's or it stops working. I think she's afraid I will react the same way again.

Are AI's really "all the same" ?

Some ladies here say Femara is more gentle, but then I see that it can be just as bad for some.

What is Faslodex? Is it an AI too? I know about bazedoxifene (BZA) which is a pill unavailable here, but I've read that people had less SE's on that? Faslodex is BZA if I'm not mistaken.

I'm leery of injections, but do you think Faslodex could be gentler? Is there *any* AI that is known for not causing as many SE's?

Hubby and I discussed me taking a lower dose in an AI - like cutting the pills in half, but, I'm pretty sure these meds are cumulative. If I am going to have bad SE's, would taking smaller doses stop them, or just delay them?

It's a cruel joke of nature to give me a disease that I am unable to fight. It's like I can't take anything. Even my supplements make me sick. I am so lost

In appreciation,

Cee

debiann · March 2015

So sorry for you Cee. I too have a history of having adverse reactions to drugs, even anxiety pills made me break out in a rash, which doesn't help the anxiety much. I truly hate taking medication. But cancer is a game changer, you're now fighting for your life. Drugs may cause side effects, but the effect from not taking the drugs is worse. So I told my body be prepared, I'm going to bombard you with all kinds of toxic stuff to rid you of cancer. I endured 6 harsh rounds of chemo with steroids plus neulasta shots. Yes I had plently of side effects, but I'm still here. There is certainly a mind over matter element involved, you CAN try to will yourself to get through it. Another strategy I used was to intentionally NOT read about the side effects so I wouldn't give myself any bad thoughts. I decided this was a journey of faith. My body had betrayed me and I needed to regain control of it so I would just have to trust that in the long run the drugs would help more than hurt.

Hormonal therapy can be a very important part of our treatment and can stop progression even in those with mets. All drugs are not the same, even the same drug made by two different companies can have different fillers and you may react to one and not the other. For this reason I am on the TEVA brand of arimidex, because others report the least SE's from this brand.

I think the Falsodex sounds like a good option since its not a daily reminder like a pill. Have you been offered ovary removal instead of lupron?

Good luck to you and I pray you find a treatment you can tolerate.

Cee67 · March 2015

Hi Debiann!

I was offered uterus removal so I could take Tamoxifen without worry, but I don't do anything GYN related, and after talking to some people in the family who work in different areas of the medical field I decided that isn't for me.

I should mention I'm here from the Alt forum and I don't have the survive at all costs no matter the SE, reasoning, BUT, if I could find something to slow down progression for a while I'd go for it...as long as I could tolerate it.

I hear what you're saying about SE's but, for me, I prefer to know what to expect. Surprises are too frightening and I am not a person of faith by any means. I want to know in advance what to expect and since I most always get the rarer SE's, I actually do have to know in advance what to look for when taking meds.

The SE's I had - they were not psychosomatic - I did not get them from reading anything - I didn't know much about AI's at the time as I was premeno and never thought I'd be offered one. And, there was no waiting these SE's out. The handout even says if personal care becomes an issue to discontinue. I was lucky it happened over a weekend when Ray was home. He's a trucker and, though home each night, is gone 12-14 hrs per day. I couldn't wait out SE's that were causing this many serious problems no matter how much I want to live. If one is stuck in bed in agonizing pain with frozen hands and dizzy to the point of collapse...there's just no waiting that out.

I was disappointed my onc didn't suggest anything else.

It's why I'm seeking something safer/gentler, if there is such a thing. My NP (naturopath) has me on Myomin which is supposed to be an herbal form of Arimidex. I've taken it for 2 days and so far no issues. (I wish I could say the same of the fish oil - makes me sick as anything bah!)

Cheers!

I Need Advice About AI's

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