Are you taking Tamoxifen or an AI? Or none?

In my limited knowledge you stick with one unless you can't tolerate the side effects or it has shown itself not to be effective. I'll be starting an AI as soon as radiation is done. I'll be interested is seeing what others have experienced.

I've been on Femara/letrozole for almost 4 yrs.  I can't really say 'I chose' - Dr T said he wanted me on Femara unless there were 'problems'.  I'm Stage IIIc IBC and am still (as far as I know at this minute) NED.  He has said as long as all goes as it has so far, I'll be on it 'forever'.

Just a note- AI's are most effective for those who are post-menopausal.  While I was pre-meno, I could not take tamoxifen due to an earlier blood clot... so I was on lupron/Femara.  Stopped the lupron about 3 years in because I figured I was at menopause--- will take femara until June when the 5 years are up... I tolerated femara reaonably well.... so I just stayed on it, but cannot wait to get off it.

i was on arimidex for six months, and seriously could not tolerate the pain. so onc put me on tamox in june?july? have to look at my papers. but. i have been having rib pain since surgury, and boom now i have been able to feel alump, and yesterday, they finally looked at it, and now i have to do a biopsy. they said, could be enlarged lymphnode, fat necrosis, or cancer. fine do a biopsy, but. i want them to do a fullbody ct/pet just to find out extent of disease, cause even tho i dont have a crystal ball, i do have a good sense of my body, and great intuition. so we will see.

Kiss77:  Why does your onc say that Tamoxifen fails after 2 years?  Just curious as my onc would prefer me to be on it past 5 years, maybe even 10 years.  She said studies show that keeping on it is best even after 5 years and maybe forever, if we can tolerate it.  Luckily, the only real problem I don't like is the leg and foot cramps from taking it.  I've heard before that Tamoxifen is only beneficial to those women who are not er/pr positive and that studies proved that.  I'll ask my onc at the next checkup about all this...

Shelly

My mom was diagnosed with Stage IIIb IDC in January 2011 and underwent a unilateral mastectomy in April.  She opted not to have chemo and radiation following surgery, and to do only the AIs.  She has been on various AIs including Anastrozole (Arimidex), then Letrozole (Femara), then Exemestane (Aromasin) -- all with major side effects.  She has stopped taking them completely January 2012.

Full body scan and bone scans have shown no cancer.  Followup blood tests every 3 months also have shown nothing.  She's now 3 years out from diagnosis and 2 years out without any AIs.  I know it sounds risky given that she did not do chemo or radiation, but her quality of life has been the most important factor.

Hi peacestrength,

My mom did not have any node involvement, but she did have focal dermal lymphatic involvement -- that's why she was classified as stage IIIc instead of b.  She also had a high oncotype and high Ki67 score, so that is why they recommended both chemo and radiation.  The decision to go off the AIs completely was due to SEs of all of them -- most severely hand pain and some other gastro issues.

I am stageiii,grade3,ER+PR+9/11nodes positive. I was diagnosed 18 months ago; I had surgeryx3 Lumpectomy, SNB, Full Ancillary dissection. However I cannot tolerate any meds to prevent recurrence. I am 55 so started on Femara could not tolerate, Arimidex the same 2 other AI's then as a last resort Tamoxifen. All of these drugs made me violently ill, during chemo Imwas put on a. Permanent dose of steroids to handle it as I was neutropenic twice and as yo all now FEC-T is brutal but I wanted to see it through, kill the beast and I had 20 rounds of radiation including supraclavicle. Prior to my diagnosis I had beenprofoundly sick with ME/fibromyalga and struggled tolerating meds. I am scared my Oncologist said if I couldn't tolrate Tamoxifen she would have to re-stage m

Kim40, as unpleasant as it is, the latest research is going toward recommending an AI for 10 years.  My femara gives me pain and stiffness in my hands and knees, but I can tolerate it if the drug will help prevent recurrence.  Is your onc firm on the "5 years and that's it," or are you having issues with side effects?

I was 47 at diagnosis and was premeno.  After chemo I was thrown into menopause.  I did tamoxifen for ten months, until we were sure the menopause was permanent, then I switched to Arimidex for a year or so.  Then I switched to Femara and have been taking anti-hormonals for almost ten years. 

Shelly, I am meeting with my onc next month.  Our plan is to continue with the AI's for as long as my bone density holds up.  So far, so good.  I am too afraid to not do anything.

As far as hair loss, I haven't had any.  I don't remember if I did or not on the Tamoxifen, but the AI's don't seem to be a problem.

sbelizabeth. I have no se's whatsoever. He is firm with just 5 years. Im starting to get nervous about losing my security blanket.

Kim: Did you get Herceptin as part of your treatment at first? I see you are Her2 positive.

Fizzdon52: I can relate - but just never had this much hair fall-out ever in 5 years. Now just wonder is it something else?? Is it because I quit taking folic acid?