Intervals for AIs

Hi Sueinfl: I have been on Letrozole, then Anastrazole and now back on Letrozole since October, 2012. I have been on at least one break every year, at the oncologist's suggestion, to rule out the AI's as the culprit in side effects that had sprung up. For example, after 8 months on Letrozole I started experiencing daily episodes of dizziness which escalated to 8-10 hour vertigo episodes. He sent me to an ENT who ruled out sinus/inner ear and suggested a hiatus from the drug to rule it out as the source. After 30 days off, during which the dizziness and vertigo disappeared, both docs agreed it was Letrozole and I started taking it at night to minimize dizziness. After 2 years I switched to Anastrazole, had little dizziness but started having much worse insomnia due to multiple wakings with hot flashes, accompanied by memory problems, fatigue and finally this year I was diagnosed with Episcleritis in both eyes, which a Rheumatologist I was referred to by the Opthalmalogist who diagnosed the eye disease said was likely linked to Anastrazole according to research she read up on. I went off Anastrazole for a month, again with the MO's permission, and am now back on Letrozole but had a recurrence of Epislceritis earlier this month. The Opthalmalogist says if it starts recurring more frequently it could lead to vision problems or loss. He also said the problems will not go away when I stop AI's, the damage has been done. My MO said breaks here and there are not a concern as long as I resume taking the drug and finish the 5 year high risk period. He hasn't mentioned any research to back that up but he's considered a breast cancer expert at Cedars-Sinai so I assume he knows what he's doing.

I am watching and waiting for results of a study that is testing 3 months off/9 months on of letrozole in postmenopausal women who have already taken hormonal therapy for about 6 years. I myself have taken two breaks from hormonal therapy - each of them 6 weeks. It seemed to do me good. But I am on the 10 year track per my MO and would really like to do the 3on/9off route. Here's the link to some info on the study. http://www.isrctn.com/ISRCTN43286545

I completely agree - you are not grumpy, and I think part of all of us having to be defensive is these ridiculous studies that come out with people having little or no side effects. I think about my own experience with my oncologist frequently saying, "you're doing great!" when for 4 years I've had serious side effects that have impacted my daily life. In his view, I'm doing great because I haven't had a recurrence and I'm still upright. I think that's his standard. These oncologists have no idea what it's like to live without a key hormone involved in dozens of non-reproductive functions, as was accurately described in one of the research papers on the NIH website. Even now after having been diagnosed with an eye disease that is in all likelihood resulting from estrogen deprivation, my oncologist had nothing to say. I believe it's because all of them really have just one goal, to prevent recurrence, and everything else is meaningless to them. I can see why so many people stop reporting SE's when their doctor doesn't listen or tries to imply the cause is not the drug. Based on comments I've seen here and elsewhere, I believe there are more people stopping the drug but not reporting it to their doctors. I've seen European research that says there is about a 50% drop out rate before the 5 years is up. That is more realistic to me.

I am grateful for my MO who is a b/c survivor. She "gets" the seriousness of the QOL issues with AIs since she's on them herself. And yep, she takes "vacations" from AIs now and then when the s/e get too bad.

We need more survivors who are oncology medical professionals and are living with s/e day to day the way we patients are. I think that would do a lot to help balance out that all too common attitude we hear of "silly emotional female - it's all in your head." Margo - I think you've hit the nail on the head that many MOs think all is well if the patient is NED and upright. My first MO was exactly like that - I kept asking for help and tips to deal with s/e and got nowhere - he'd literally be standing there with one hand on the door knob trying to get out of the exam room while I was asking for help. I finally got so disgusted one day that I asked for copies of all my records and walked out, never to return.

I asked my new Naturopath/Oncologist whether it was okay to take breaks from Letrozole & she said it's not good to do that. It causes disruptions in our hormones & can cause the cancer cells to grow. Since our AI's only "pause" the cancer from being fed estrogen, any break gives those cells fuel.

It's quite depressing to know we have to take this drug the rest of our lives. I am grateful to be alive but the side effects suck

I forgot how good I used to feel until I was off exemestane for 6 months. I dont want to go back to feeling crudy, tired pain etc.. But I do believe it helps keeping cancer away.

My onc said 5 more years & 2x prolia injections per year. He provided results of a study. I'll try to find it & post.

My new Dr. who is a naturopath/onc said most likely they will keep telling us 5 more years...unless something else comes along to "cure" it not just pause it. She's working with me to help manage side effects

It is depressing to think of all the side effects we feel & the potential for cardiovascular problems, bone loss & permanent tendon & joint deterioration. It's hard to know what to do. I'm trying to do all that is recommended but am tired of being in so much pain & unable to do the things I should be able to do at age 59. I'm in. Better bones & balance class & am struggling. I'm so sore after class & an barely keep up. I've always been physically fit but have deteriorated immensely over the past few years. 😢