Anyone quit ANY form of estrogen suppressor super early?

ballyhoo - You didn't post your dx or stats, so I'm not sure what your situation is, but here's mine:

Had a BMX for multi-focal IDC. I dodged chemo and rads, but being 100% ER+, the MO put me on Arimidex for five years. I suffered with it for a year before telling her about the side effects I was having. I kept coming here to the forum and reading posts about how SEs were temporary, how it was possible to change from one drug to another, and to just hang in there. But after a year, a few of the SEs had become so serious, I had no quality of life. The joint pain was so severe I was using a walker. I lost my balance frequently. I was almost incontinent thanks to tissue atrophy. My blood pressure shot up. I was so depressed I couldn't get out of bed some days.

The MO was upset that I hadn't come to her earlier. I said I didn't want to be a wuss. She told me that of course I wasn't a wuss - everyone knew it was from the drugs. I had kept a detailed log of my SEs, and she agreed I needed a drug holiday. I went off the Arimidex completely for two months, and every single SE went away.

But then she said that I needed to try another AI, and put me on Femara. Within a few weeks, the SEs were back. I kept track of them, and at the six-month mark I saw the MO again. She reviewed my notes and told me that I was just one of those women who could not be on the drugs. She said that having a year and a half of AIs was better than nothing, and that she wouldn't even try to give me Tamoxifen, knowing how I'd react.

Of course, my risk of recurrence after surgery was something like less than 1 - 2%, so she said that of all her patients, she felt comfortable telling me that it was o.k. to stop completely.

Had my personal circumstances been different (higher stage, higher risk, kids to raise, etc.) I would gladly have struggled through the entire five years. But as it was, there was no real clinical evidence that the drugs would make any difference in my recurrence/survival rates.

There are MANY women who are on the AIs, with little or no SEs. They adjust their lives, take extra measures (exercise, etc.) to reduce the symptoms, and forge on.

I think it's important to say that I am NOT anti-AI... I don't think they're evil, but that they are an important part of the entire BC treatment spectrum.... and I would encourage anyone having difficulties to contact their MO to perhaps look for solutions to SEs, or try a different drug.

However, after a year and a half, I just couldn't stay on them, and I'm o.k. with that.

So sorry to hear you are having a rough time with the hormone suppressants. I too have developed se's shortly after starting Arimidex (1 month). Hot flashes, headaches, gi upset, insomnia. I stopped taking it this past week and plan to discuss with mo on Monday. Hoping I won't be so sensitive to the alternative im certain he will rx. Please will you keep us posted?Hoping you will find an effective resolution.

I don't know if it would be considered "super" early, but I was on AIs (on and off) for 3 years before I gave up. They all gave me horrible pain, and now I'm dealing with fast advancing osteoarthritis from them.

No, osteoarthritis is a degenerative disease (also called old-age disease). Degenerative diseases never "go away", they can only get worse with time, once they start that is it, you have them for the rest of your life. My spine and pain management dr. told me at our first appointment that he thought initially that I was in my 80s when looking at my XRays before meeting me in person, and that I was the worst case of AIs side effect that he had ever treated. All you can do is to slow down the rate in which your joints are degenerating. I managed to do that by losing weight, taking the appropriate supplements and exercising as much as I can - there has been no advancement for the past two years, and I hope to keep doing this for as long as I can.

Good topic Ballyhoo. I know you're not the only one experiencing the awful SE, as I am in your club. I was diagnosed May 2015 and started the hormone suppressants about a month later. The first I was prescribed was exemestane. I was fine with the diagnosis, fine with the mastectomy, fine with the reconstruction. What I was't fine with was the armatase meds. I didn't do chemo or radiation. I had severe pain, hot flashes, mood swings and insomnia. The doc changed the med to letrozole. The pain subsided but the hot flashes ramped up to every half hour and so severe I almost threw up. Plus I got insomnia, became very depressed and very exhausted. I am normally a very happy energetic person. I was put on two different antidepressants to combat the SE. The antidepressants made me more depressed and didn't help any of the SE. I quit all the drugs about 2 months ago. I slowly got some of my energy back (not back to normal yet) and the hot flashes are subsiding. I finally went to my GP and got sleeping pills. Thank goodness for those sleeping pills. I saw my oncologist two days ago and am now on arimidex. I don't know how this is going to go but I just want to be off these evil drugs. I feel for you and everyone else experiencing awful side effects from these drugs.

I just want to feel normal instead of AWFUL all the time.

Thank you so much for that article. I have been on letrozole and infusions of zometa since May and have decided to quit both. The side effects are just too much but one thing I'm curious about is a drug my MO prescribed for hot flashes called venlafaxine. According to the information from my pharmacist, it is an antidepressant and is also used to treat anxiety, panic attacks and social phobia none of which apply to me.

Has anyone else ever been prescribed this for hot flashes? I'm not going to take it until I know more because it has really scary side effects.

i didn't make 5 years more like 3.5. I felt like crap on anastrozole and exemestane.

Hi everyone. Just wanted to add that my doc at a major university hospital in NYC recently told me that only 50 percent of woman complete the 5 years due to SE. The above study was done in 2011 so wondering if that number is actually higher now as per my doc? I'm thrilled for anyone who is doing well on anti hormone therapy. However 50 percent is just not acceptable! We all need to speak up and demand better treatment options. Also IMO we all need our hormone levels checked before during and after anti hormone treatment. Good luck to all....

now that you mention it, I did have some dizziness after I stopped exemestane but ok now.

kayb, did your mo suggest taking paxil with your AI? I think it helps with hot flashes but does do anything for joint pain.

Hey to All of You!

I was on Anastrozole for 8 weeks. The first 5-6 weeks were manageable. Some hot flashes and soreness, but ok. That last 2 weeks, I became very moody, irritable, depressed. Even my sister witnessed my mood swings and agreed that my temperament had become "snippy!" I'm not usually like that I stopped the Anastrozole for 18 days and started on Letrozole 10 days ago. So far so good. A little soreness upon waking up , but that's it. I'm wondering if anyone knows if it takes another 6 weeks before the SEs kick in with a new AI, or is there enough cumulative AI still in there from the Anastrozole that my SEs would begin sooner because I was off for only 18 days. Does that make sense? I guess that everyday that I don't feel that SE of anxiety makes me think this one might be tolerable for me. I certainly hope so. I know it's one day at a time....I just don't want to be flooded with those terrible feelings again. So every day that I take this Letrozole I think "Is this going to be the day that puts me over the top emotionally?" I should be thinking "This is going to block that estrogen and reduce my likelihood of recurrence..." but, at this point, that's not where my mind goes when I take that little pill.

Reading all these posts makes me sad. Why are they working on better treatment options? Why are they ignoring all of our side effects? Most women want to be compliant to reduce the risk of recurrence. However QOL matters too!