Has anyone quit or reduced dosage of the hormonal therapy?

Changing the medication is very helpful to most of us. I was in letrozole for over 2 years and SE were getting worst by the day. It was like a poison, drop-drop every day and my body and mind couldn't take it anymore. I turned yellowish even though the liver tests were fine. I finally told my MO in February and he gave me a break for 6 weeks and started on Aromasin. What a big difference! It is been 5 months in Aromasin and I feel so much better.

For us users of AI, we have 3 options: letrozole, anastrozole and aromasin (exemestane). While the first 2 are the same family, Aromasin works differently and can be a better replacement if letrozole or anastrozole doesn't work for you. My MO told me I needed a break for 6 weeks for the body to clear letrozole SE and reset before going to the next medication.

On the other hand, we need to be realistic that these anti-cancer medications are strong and have SE but hopefully, they are keeping cancer under control. I imagine that removing our most important hormone, estrogen, is not easy in our bodies.

Dani44, I can see that you have ILC like me. I thought tamoxifen is not the best for ILC.

mom2bill- uggg I am sorry you didn’t have relief after stopping tam. I really hate the way it makes me feel and I totally understand the desperation for a reprieve. On a side note, I use a magnesium lotion on my calves before bed and it really seems to help my leg cramps. All the best as you start back up on tamoxifen.

Old lady blue- I hope you have the best party ever for that birthday, you absolutely deserve it!!

Molliefish- I am sorry you are dealing with a new primary. Cancer is such a sneaky little jerk. I so agree about QOL, mentally and physically. It has to matter. I get so tired mentally when thinking how much my body has changed. If stopping or altering the dose of tamoxifen can bring back a little piece of the old me I am willing to take the risk. I hope your upcoming surgery goes well.

Yes, I cut the dose in half after 6 months (Arimidex, also tried Exemestane). And in consult with the oncologist , I will stop altogether in a few more months (total of 13 months of what I call "the evil pill"). I have Rheumatoid Arthritis and I understand it's just a bad combination. I believe I have now had every side effect except bone loss (i negotiated a good rate so I could have the bone density test more frequently).

1. We all know the AI's are amazingly effective - cutting the risk in half of metastases.

2. BUT I am not sure we all know that the benefit is not spread evenly over the 5 years - it is "front end loaded" so that much of it is in year one, then diminishing returns. So depending on your risk profile from Oncotype or something else, 5 years may not make a lot of sense (or it might). (this distribution of benefit was told to me first by Duke Univ oncologist and then confirmed - albeit reluctantly it seemed - by my local MD)

3. My side effects have not 'evened out' - they've continued to worsen. So in addition to my afternoon "fatigue wall" and "extra" joint pain, my list includes severe dry eye that may risk damage to eyes after 2 years on AI, bizarre tendinitis I have never had, elevated BP, "trigger finger", various muscle issues and so on.

Finally , what is so frustrating to me is that while you can find dozens of studies being done to LENGTHEN the time women take this, "they" have not even tried to find the lowest effective dose - and as one MD put it, whatever that is will surely be less than what I have been taking. I believe in my heart it will be like birth control pills - it took so long to lower the doses that women for decades took 20-30 times higher doses than needed. I think that will be the AI story ---

but I am unlucky in that I have Rheumatoid but very very lucky with the type of cancer I got (mucinous) and a very favorable risk profile. But 13 months will be it for me and the AI.

Wishing you all the best

beachnc, Wow, I never knew that about the AI's, meaning you get the most benefit in year 1! How come they don't tell us that! Sheesh! I managed 3 years on letrozole, and that is it. I just can't do it anymore. Mavericksmom, I am so sorry you must face this again. Thank goodness, it was found. Best of luck.

Mavericksmom, so sorry to hear you are going to be doing the cancer battle again. It's hard to know when the cancer actually started in your other breast. Is it "new", was it there and just undetected, etc? I've had 3 different doctors tell me 3 different ideas on when my tumor actually started. I wonder if doctors are daily taking their "best guess" in trying to help their patients?

Edwards750, thank you for your post earlier when I was trying to decide to stop my AI or not. I appreciated very much your comment: "Good luck in your decision. Do what's best for you and your husband. Life is too short to do otherwise."

I too am confused the they AI’s are most beneficial in the first year. I was told that the radiation as well as the chemo hangs around for quite some time and I would think that would stretch out the chances of early reoccurrence.

I take a half of a letrozole Monday/Wed/Fri. That’s all I can handle and have any quality of life. Some weeks I try for a 4th dose on Saturday or Sunday night but the side effects are awful and i have very painful arthritis in my shoulder.

I am also concerned about my eye sight. Has anyone experienced a sharp decline in their eye sight

trippositive, Oncotype Dx is a test on a cancerous tumor which gives an indication as to whether or not chemotherapy would be beneficial. It also gives scores for recurrence when using an AI or Tamoxifen. Oncologists go over the results in detail with their patients. You can get more information simply by Googling Oncotype Dx.

Hope this helps.