Artista...so happy you are doing well on anti hormone therapy. Yes, some do and some don't. Those who do well have a completely different perspective on it. I'm not disputing that it can lower your recurrence risk. However there are no guarantees. Many have recurred while on it. So its just not that black and white. Especially when it affects your QOL negatively. Good luck to all navigating this complicated disease.

Brutersmom thanks for the encouragement, maybe I'll get a blessing too instead of a guilt trip

Artista, yeah I know that it sounds like some of us are whining. I could continue to hack the joint pain, it's my eyes that I'm worried about. I don't know what my probability is like some. Had an occult primary and one node with 3mm of cancer found after surgery. Plus 35 radiation treatments. ER/PR 100/40 Her neg. grade 3, IIA. I see MO and Opthamologist in a week

Yeah I thought I was doing great too for two years almost.

I said "it sounds like" but you are right the sides can be very serious and then we get another medicine for the sides that has sides!

It's a very hard decision to make when you're in-between, but in my case I fear that if I go on my eyes will end up damaged and requiring surgery. And then it will be too late

And please don't underestimate the psychological effects of estrogen deprivation. Insomnia and depression often go hand in hand. It's difficult to "bounce back" when one is dealing with that on top of overall aches and pains.

I am wondering if anyone has noticed their scalp is cracked or dry as a result of AIs. My head has been so itchy and I even opened a bleeding sore on my head- sorry if I'm being gross. Any recommendations for how to relieve the dryness?

Yeah...Arimidex is definitely not a *happy* pill... I already have issues with anxiety and depression. But, staying on this for as long as MO wants or forever - if that's what it takes....

Edited to Add: if I wasn't so high risk for going to stage 4...not sure I would stay on this for the long term..

My MO seems to feel something better is coming down the pike so possibly those on the 10 year or more plan will be relieved with something that's not so riddled with se's.

Hi Falconer,

I woke up from surgery with the itchiest scalp. For 6 months I looked like a dog with fleas. Had sores that wouldn't heal (yuck). Finally went to the dr and she said I had cradle cap (ha, maybe surgery was a "rebirth"). Anyway, she said to use Selsum Blue with selenium sulfide. Worked like a charm

Artista...thats the best news I've heard in a long time! Any more information on new anti hormone treatments?

marjen and others: please discuss the vision issues with ophthalmologist; not just with MO. I am not sure what vision issues/problems you are referring to but if it is cataracts (known SE of some of the drugs) then the surgery is one of the easiest out there, with very, very low risks of complications, and the truth is: cataracts are common enough that you probably would need to have the surgery at some point regardless (though the anti estrogen drugs can make the cataracts worse or lead to earlier onset). And, almost always the surgery solves/cures the vision problems, so I am not sure how it could be 'too late' once that happens.

That's something I've never heard of, marijen. I'll read the article you posted. This disease and its treatments - it's like an octopus the way it touches so many seemingly unrelated parts of your body!

MJ

Here's a link for

Retinal Hemorrhages in Anastrozole Users

http://journals.lww.com/optvissci/pages/articlevie...

thanks for the link, marjen; I hadn't heard of this either but will also read it and discuss with ophthalmologist. I do get extensive vision testing fairly often as I have a retinal problem that pre-dates bc, so I imagine he will be interested in seeing this.

Octogirl

Here is an excerpt from the last link I posted. Who knew Letrozole was non-suicidal and it should be tapered off?

Estrogen rebound: This is one of the Letrozole side effects that are perhaps the worst out of the two non-suicidal aromatase inhibitors (the two being Letrozole itself and Arimidex). While Arimidex exhibits issues of Estrogen rebound, Letrozole has shown to exhibit far worse rebound upon discontinuation. This side effect is very important to understand. It is a side effect generally unique to both Arimidex as well as Letrozole (Femara). The third major aromatase inhibitor, Aromasin (Exemestane) does not exhibit Estrogen rebound. This is because Arimidex and Letrozole are what is known as non-suicidal aromatase inhibitors. Aromasein (Exemestane) is a suicidal aromatase inhibitor. A suicidal aromatase inhibitor (such as Aromasin) indicates that once it has bound to the aromatase enzyme (and thereby inhibiting it), the inhibited enzyme remains bound to aromatase permanently, rendering the enzyme inactive forever. The body will eventually manufacture more aromatase enzymes, but the current bound enzymes are bound indefinitely, eliminating any risk for Estrogen rebound.


Non-suicidal aromatase inhibitors such as Arimidex and Letro, however, are only bound to the aromatase enzyme for limited time periods before the aromatase inhibitors unbind either due to natural metabolism, or through competition with other substrates. If a non-suicidal aromatase inhibitor is halted too abruptly, the circulating inhibited aromatase enzymes that have not been metabolized out of the body will then become free again, and begin aromatizing androgens into Estrogens at an often rapid rate. This is why it is advised to slowly halt administration of Letrozole, and/or slowly reduce the dose and/or frequency of the dose when stopping. Often times the inclusion of a SERM such as Nolvadex starting several days prior to and following the cessation of Letrozole will be necessary so as to keep the breast tissue receptor sites blocked from any possible Estrogenic activity that results from the rebound, after which Nolvadex administration is halted as Estrogen levels slowly return to baseline.

marijen, thank you for all your informative articles. I had never heard about tapering off letrozole if discontinuing it, I will remember this when the time comes.