Anyone stopped after 2 years?

Lilly, yes I did quit tamoxifen before 2 years and I never took an AI, but I was stage 1 and the risks are much greater for you. My older sister had IDC stage 1 several years before I did and refused tamoxifen and did not do an AI, either, and that cancer never returned. However, since that time she has had IBC. IBC is a high-risk diganosis. She is on Femara and is NED, but she suffers joint pain and uses a cane because of it. What problems do you have from the use of the AI that you believe are causing the depression?

Lily55 - just wanted you to know you are not alone.  I am only stage I, but am BRCA + and grade three.  I have made it approximately 20 months.  I have an appointment in two weeks with my MO.  She will not be happy with me.  I just don't think I can do this anymore.  Many many symptoms, same as you.  NO quality of life.  It has been debilitating.  I am so glad that most women can take these drugs with minimal side effects, but I am not one of them.  I think my ooph and forced menopause, on top of degerative disc disease and mild arthritis, has done me in.  I have aged considerably during this time and have constant pain somewhere.  Fatigue is doing me in - not sure if it is from the meds or from always being in pain.  This sucks.  I stopped in at my MO's office two weeks ago asking for a Femara prescription.  I was willing to give that one more go until the SE got unbearable, hoping to at least make it to my 2 year mark, figuring this was better than nothing.  I was refused the prescription until I scheduled an appointment, during which MO wants to discuss aromasin.  I have been off the tamoxifen now for one month.  Time for my head to clear, for the pain to lessen a bit, and to finally get some sleep and a hint of libido stirring.  I think I am done.  The thought of going back to how I felt before (even though I still have many issues remaining), is just to much to even consider.  I have no more stamina left.  I need a semblance of my old life if I can find remnants somewhere.  I am exhausted and frustrated.  I need quality of life.  (((Hugs))) as we face the wrath of the medical profession.  I am sure they will think I am feeble minded and couldn't have possibly thought this through.  I say, who in their right mind would stop these drugs unless they have tried everything to make it work.  This was no easy decision.  MO - please do not poopoo me at my appointment.

Yes.  On my second MO.  Every one just wants to pile more drugs into the mix.  My body has never tolerated medications well.  Wish with all my heart that it did.  Like Lily55, I just don't know what else to do.  Disheartening.

I pasted the link and read up about Aromasin side effects from patients, then I read the comments on Femara and Arimidex.... well, at least I know Im not alone having these side effects!  Not much choice, is there. I guess am sticking with Femara for now, for as long as I can.  Hugs everyone.

BosomBlues, that has been my question all along and I never seem to be able to get an answer. Only that it would decrease my risk of another recurrence, but by how much no one seems to know. If it was a significant percentage of reduction I would be more likely to want to stick with it, but if it is only a couple percentage points, for me it is not worth all the SE's.

I started on tamoxifen but had to be switched off of it and had to have an oopherectomy because of it.  I was then put on Arimidex followed by Aromasin followed by Femara.  I experienced severe joint pain especially in my knees to the point that I have a very hard time getting around that finally I was taken off of AIs two months ago.  I should have gone one more year on the AI to reach my 5 year mark, including the time on tamoxifen. I can't tell you the long term effects of not taking the AI to the 5 year mark...I really don't know how anyone knows for sure but my MO said at this point with my current condition that the QOL outweighed the benefit of staying on the AI one more year would give me.  I do know that someone who took Arimidex and had very little side effects for the whole 5 years was diagnosed not long after her 5 year cancer free mark with breast cancer again.  I guess there are no guarantees and we just do the best we can.

Bosumblues - I would soooooooooooooo like to see a holistic doctor, but where I live, there are none!!! I agree with you that the cost is a bit prohibitive, but I would try to manage somehow considering the alternative (if there was one where I live!) ... One of my oncologists was actually trained as a naturapathic dr. before she entered into oncology and she always gives me great advice. She is one of the ones who told me about diet and exercise and also cutting my hair during the full moon (one of my lovely one zillion side effects was hairloss!). Too bad the cancer hospital where I am treated is so far away from where I live - 5 hour flight and I only go there every 6 months ... Any suggestions?

One of the things we have to remember is that not long ago, these drugs didn't even exist for us. For many women - including those with MBC - the drugs are prolonging their lives, giving them precious time with loved ones.

At first I resisted taking Arimidex - I was post-menopausal and post hysterectomy. I KNEW there was no estrogen in my body. Then my MO kindly pointed out that estrogen is produced in belly fat, of which I had plenty. I lost 60 pounds; she still gave me the drug.

The first six months weren't too bad, but by the end of one year I had more than a dozen side effects, some of which were very serious. I was crippled by joint pain and was using a walker, my cholesterol levels had tripled, my hair was falling out, the vaginal pain and bleeding were terrible, I had bladder pain and incontinence, and depression kept me in bed most days. My hands were useless claws, trigger fingers made everything harder.

I finally saw my MO who was horrified that I hadn't come to her sooner. I told her I didn't want to be a big weenie. She said I wasn't a weenie, we KNEW it was the drugs.

She gave me a two-month drug holiday. ALL the SEs disappeared. Then she told me to pick up my Rx for Femara. DRAT!

I stayed on the Femara for six months. At first I had high hopes. I exercised regularly, took supplements, did everything right. But then the SEs stared in again. I had to make a choice.

My DH has incurable kidney disease (according to the specialist; we are praying for a miracle) and there is a chance he may need dialysis in the future. By the time  I finished my five years on Femara, the possibility remained that HE would be too sick to travel. (We are both retired; traveling across the country in our RV has been our dream.)

If I had kids, or had a more advanced dx, I would still be on Femara, doing whatever I could to mitigate SEs. (I was even getting Acupuncture, which did help with joint pain!)

But in light of 1) my age and life circumstances, 2) my extremely early/small dx, and 3) the blessing of my MO, I  made the decision to quit. 

From the very beginning, she told me that if I were one of the women who could not tolerate any of the drugs, she would have no problem taking me off them. This wasn't a decision I made lightly, alone, or without a very LONG time of trying to live with the side effects.

If you are new to the drugs and having SEs, tell your MO. Please give it your best effort. Joints hurt? Exercise! Water aerobics is awesome. There are numerous threads on BCO dealing with SEs, and the reality is that many women have few or manageable SEs. They're not posting because they are out enjoying their lives.

But if you have given it all you have, please have that conversation with your MO. You might do better with a different drug, something to offset the SE, or - like me - be given the o.k. to quit.

(Just keep in mind that even though I was 100% ER+, my IDC tumors were one and a half MILLIMETERS, and HALF A MILLIMETER. Nothing was found in final pathology report, and I had no chemo and no rads.)

BAYOUBABE - no, with tumors that tiny, clean margins, and no node involvement, I guess they figured I didn't need the Oncotype test.

I know I had the maximum surgery for the tiniest cancer, but being Multifocal (with lots of DCIS), that ruled out a lumpectomy. Since Mom had BC, and the Original Girls were huge, I opted for BMX. I know that has no bearing on recurrence or survival rates.

Oh BosumBlues - it certainly is discouraging.  If it isn't one thing, it's another ...  Watch out for signs of deep vein thrombosis on tamoxifen! I am a survivor of a very bad pulmonary embolism which happened shortly after my last chemo.  Since I only just went off warfarin, I am watching my diet verrrrry carefully and eating a lot of garlic and ginger, curcumin, mangos, etc.  And, of course, drinking litres and litres of water!  When my cholesterol went off the charts, it happened very quickly and I tried a couple of statins - one of them turned my eyes lemon yellow on one half and pure blood red on the bottom half.  I looked like something from a terror film!  And the other 2 I tried made me so stiff I could only get out of bed with help.  I figured it was better to give up on the statins!!!  Tried ezetrol, which works in a different way than the statins, but it only reduced my cholesterol by 10% and the heart specialist told me to use a combination of sinvastatin (the lowest dosage of 5mg) and ezetrol.  Still had a terrible effect on my body ...  I am really, really, really hoping that going off AIs will bring my cholesterol down again.  In March, the oncs. are going to give me a ton of different blood tests to see what (if any) difference going off Letrozole has.  I plan to continue exercising around 40 minutes every day and eating a "stellar" diet.  And my sister-in-law has been sending me a lot of information on how to learn to meditate :-).  I wish you all the best BosumBlues! 

Hi BosumBlues - I was a "comfort" eater for most of my life until the Big C hit ...  Now, if I feel the need, at least I eat something healthy like fruit instead ... and try not to overdo that! But, I do allow myself dark chocolate ...  I want to feel as good as possible about not being on AIs and not be afraid or too afraid  ...  From what I have read over the past couple of years, AIs really only help a small percentage of people.  I thought I would take one for 5 years whatever it cost me, but I have also been in a lot of pain for a long time and haven't been enjoying life very much because of that - and when all the heart and cholesterol stuff started, it is all just too much!  I am a pretty tough old bird and have been through a lot of pain in my life, but this is ridiculous.  Almost had to have a crane erected beside my bed to winch myself out of it every morning :-)   Last night, I actually had a great night's sleep for the first time in 3 years and 3 months on AIs.   I don't have any family other than that of my husband and SILs, but they are all firmly behind me about not suffering any longer on AIs ...  I wish you the best of luck on Tamoxifen!!!  Please let me know how that is for you, and I will let you know how my cholesterol results are in March.  All the best and big hugs!

BosumBlues - oh, you made me laugh - thanks for that :-)!  Yes, the black hair thing - it is special, isn't it?!  Children are so honest ...  Don't shave it though - try an Egyptian string removal - it is fast and doesn't hurt too much and after a few times, doesn't return as quickly or as thick ...  Now, tell me - why can't my eyelashes grow back like that?

Lily55 - comforting to read that at least I apparently made it through the most critical time ...  And I have to say I am thrilled to be able to sleep again!!!!!!!!!!!!!!!!!!!!!  Still having the hot flashes, but they are different and my heart is not threatening to explode in the middle of the night ...  I am, however, having migraines again and hoping they will wear off soon ...  I also just stopped taking Warfarin, so am hoping that in another couple of weeks I will be feeling even better ...