Anyone quit ANY form of estrogen suppressor super early?

That's scary. All the Drs have told me that if anything gets unbearable, I can just quit taking it and the SEs will go away. Except something like osteoporosis.

Joint issues are the side effect that can be permanent on aromatase inhibitors. We all need to make informed decisions...

tly, your story sounds similar to mine. I was ok about the cancer, BMX, reconstruction and all that goes with it. I didn't need chemo or rad & oncodx is 7%. I've been on tamoxifen and it's as though my pms is back with a vengeance. I took birth control pills continuously to keep it under control. I stopped taking them this past April as soon as I was diagnosed. I also have hypothyroidism/Hasimoto's disease which is currently out of control and adds to my symptoms. I can't win for losing. My PCP did a blood test to check my hormones. This will tell her if she can petition my Onco to change my cancer med to see if I can get relief. I just know I can't live like this. I did it for over 30 years and it makes me feel bi-polar. With such a low chance of recurrence & be slow growing I think I will go off the med all together & just be monitored.

I pretty much gave the MO the screw you I'm not taking it and his response was essentially, then we're done here. I'm thinking, uh, follow up appts, talk about life after cancer? That's just doesn't seem right. I called the patient advocate to get a new oMs

Cocktails..Your comment about men has entered my mind many times. I'm happy for anyone who does well on anti hormone therapy. Unfortunately the fact remains that only 50 percent of us complete the 5 recommended years. Add those who stay on with substantial SEs and that's a big number. Also agree that the stats are very outdated. My dear cousin passed away from BC 25 years ago at the age of 38. When I got diagnosed I was shocked at how little has changed since then. I also agree that we need to speak up rather than suffer in silence. That's where I think things would be different if it was a male dominant disease. We need better screening, better treatment options and yes a cure!

Hi Tarhee:

Have you tried Reisha Mushroom? I took this along with Cytoxan and Taxotere. The oncologist said I could take it. I have tried all the AI's and Tamoxifen. I was on them all for two years, and I developed DeQuervains tendonitis taking them. They had me stop for a short peroid time Armidex thinking tendonitis would go away, but I think the damage was already done. Letrozole raised up liver enzymes and Tamoxifen made me bleed.

My oncologist said I could stop all estrogen blockers and Tamoxifen. I am allergic to yeast, but I take Grape Seed Extract to reduce my chances of cancer.

Maybe you can try some natural things to keep your tumors from spreading and growing. Since taking Reisha I am still in remission. This has been over two years now.

I hope this helps. I also am eating a more alkalaine diet. I have read cancer can exist in an acidic environment, but not alkalaine body environment.

The AI's were making me have a hard time walking ontop of my neuropathy. So I quit them all over two years ago.

My oncologist said you gave them all your best shot. This was my follow up oncologist, not the first oncologist that I saw at first. My first oncologist would not agree to this at all. So, thank God my follow up oncologist continues to follow up even though I refuse to take estrogen blocking drugs.

I hope you don't have to go back on AI,s. Curcumin also can help keep reduced.

Hope this offers some encouragement

Vix, I have been on both Tamoxifen (2 years) and letrozole (18 months). My physical side effects from Tamoxifen were ghastly (don't know how I lasted 2 years!). Letrozole is definitely tolerable for me, not great but nothing like what I endured with Tamoxifen. So for your oncologist to blithely state that AI side effects are categorically worse is odd because we are all different in how we react to these medications. Quite a lot of women on this site have had ovary removal as an alternative to Zoladex.

All these decisions are so hard, it's trying to choose the 'least worst' option in the end.

Hello Ladies (and Gents?)....I have not posted in a long while because I have been happily enjoying a holiday from breast cancer surgeries, treatments, drugs, hospitals and doctors! I left the office of my medical oncologist in May of 2016 and did NOT see another cancer doctor until yesterday. AND IT WAS LOVELY (overall)!!! FYI – I don't include my cancer information because frankly, I am far too sensitive to receive any insensitive commentary. It doesn't even matter if comments are unintentionally icky...for me, small (even teensy!!) things can trigger huge cry-baby moments for me!! lol So I post details as they are relevant to my writing. I'm writing today because I wanted to update you folks on my particular ordeal with estrogen blockers. Maybe it will help someone out there. I've done some "ground work" and these are my results (for whatever its worth). First of all, I was on Tamoxifen from May 2015 to January 2016....hated it!! I mean, SERIOUSLY hated it!! I ached, head to toe....I lost "me" entirely. I threatened to kill myself more than once.....just to end the tears, the pain and feeling of gloom and doom. Then I had a complete hysterectomy! NO MORE TAMOX!! Yippeeeeeeeee! For 2 weeks, I literally felt as though "clouds had parted" and I was me again!! Albeit, ashamed and guilt ridden for imposing so much pain upon my entire little family!!!! Saying "I'm sorry" only works for soooooooo long!!! My med onc recommended Arimidex and scared me into taking it.....advising that it would reduce my risk of recurrence by 50%. I took it for 3 months and GAVE UP because once again, I was a babbling, blubbering, CURSING!!!!-DID I MENTION CURSING????...HOT MESS OF A MOMMA!!! And physically? Don't even get me started on the pain and suffering and swelling and overall crap-of-a-life I was left to "enjoy"????? Seriously? Words like "enjoy" and "grateful" and "survivor" started to piss me off even if someone used them outside of bc context!!! Oh, the anger. I QUIT IT ALL and I walked away. And here is what happened......I continued to feel pain....head to toe and I continued to gain weight/swell/heat flash/sweat/nightmare. Although, emotionally, I felt MUCH, MUCH, MUCH calmer and more like myself again!! I joined a gym with my husband and my kids...sometimes I did participate and other times (if my body ached – which it STILL does, with or without the estrogen blockers!!), I just watched and smiled and LOVED to be there with them!! I went on a DIET – several diets – and failed miserably 3X!!! Then, I bit the bullet and purchased Jenny Craig – lost 20 pounds and I've managed to maintain the weight loss ever since!!! I will NEVER go back to the estrogen blockers because my quality of life SUCKS when I take them! Depression is an inadequate/insufficient word to describe the HELL that becomes my world, on ANY of those drugs. All of my aches, pains, etcetera are likely now due to the chemically induced menopause, followed by true menopause (surgical). I can handle the physical pain – I don't enjoy it – but I can tolerate it!! I'm in love with my family again and vice versa!! I am thin again and my hair is soooooo lovely - now that it has had a chance to grow!! My lymphadema is not nearly as noticeable with the weight gone either! I've signed up for blood work and scans to monitor/check for recurrence. I haven't actually completed a check yet....but soon!!! All in all, I'm hanging in there ladies (and gents) and I thought I should come online and tell it all!!! I care about all of my cancer sisters and brothers out there!!! If any part of this post helped even one of you – PERFECT!!! PM me if you need some one-on-one encouragement or support!!! And btw....I eat NO SUGAR, DRINK NO ALCOHOL, NO BREAD, NO SALT....lots of leafy greens and proteins!! Green tea helps loads, as well!!! These are the things that helped me.....again, for what it's worth!! Be well and I hope you find happy today - my wish is that you find a truckload of it....but even a smile would be a good start!!!

I am sorry to hear that you are facing an additional challenge - as if bc isn't enough!!! My heart is with you and sincere thanks for the tip on the Gabapentin - I was prescribed that drug for post mastectomy pain and didn't realize that it was also helpful for hot flashes!! Good to know!!! I have sent you a personal message as well! Better days ahead my friend!! Be strong!!!!

If my se's get so bad I'll probably on my own cut the dose in 1/2 even if MO says don't. I think MOs are afraid to say ok to downsizing the dose or frequency because of the fear if the person recurs so it's better to just stick it out. If you recur then you can't say it wasn't cuz you weren't taking the AI as directed. As I've stated somewhere before, there is no cure for cancer and due to the very nature of it, there never will be. So that being the case, move some of the funds from finding this elusive cure over to making the meds we need to be on more bearable. I'm 1 month into Letro and am thinking you have got to be kidding me... 10 years???? I'm 52 and not ready to feel like I'm 80. Hell my 78 year old pops is in much better shape than me before my cancer, now no way in hell I can keep up with him even walking! This is outrageous, and by hearing how we can go to the ER for our cancer needs downright pisses me off. 2018 and 2020 can't come fast enough, but that's another thread..

First, thank you to every one of you amazing women. I also did the mastectomy, chemo then radiation. I finished December 9th 2015. I have peripheral neuropathy from the chemo that is permanent. I have been taking Gabapentin since August 2015 and its no help. I have been told by 2 MO that there's nothing that can be done! So, my hands and especially my feet hurt, tingle all the time. My job requires me to be on my feet and that makes it worse. After a long day I have stepped out of my jeep at home and fallen out because of my feet.

January 2016 I started taking Anastrozole. It started with bone pain and I became a walking hot flash. But, the side effects didn't stop st that. Depression, thinning hair, weepy, anger issues. Let's not forget the neuropathy. So I do walk like a 90 yr old woman and I'm 54. 3 days ago I put myself on a drug holiday. I feel better, not great but better then I did. Emotionally I'm still a train wreck, but I do see a difference.

This is no way to live. I can understand wanting to stop the med. Here's my dilemma. I only have my insurance because I am being treated for BC, the Anastrozole. So I have to take the awful medicine in order to keep my insurance.

Ladies, I am so very unhappy and I am sick of "suck it up" "nothing we can do about it". Sick of feeling like crap.

Thanks for letting me whine.