Oh Trisha, I'm so sorry. I'd like you to feel 15 years younger, skipping down the street! LOL!

I'm sure you have discussed with the doctor. Are there other meds which could be helpful? I think it was Tamoxifen my mom took, but of course that doesn't mean it would be right for you.

There are other aromatase inhibitors that you might want to try. I know that Aromasin works somewhat differently chemically than Femara. The side effects may or may not be the same for you between the two drugs. It's unfortunate that the side effects are so debilitating. If you are taking a bisphosphonate to help offset bone loss, that can also cause bone and joint pain.

Here is a link that might be useful: AIs

I've been taking Femara for a year now .. and oh, how it wears me down. Like you, it's a five-year stint.

My ankles, knees, hips are just terrible. When I first stand up, I stand there for a few seconds before I can start walking. And then it's a hobble for a bit. I wear out so easily, and can't remember a blasted thing .... it's just terribly frustraitng.

I'm taking it as a cancer inhibitor, and altho my "odds" of recurrance are very slim so far I'm just not willing to not take the pills. My oncologist did say that a couple times a year, if it gets too bad, that I could hold back for 7 days. I did that a couple weeks ago before the Susan G Komen Walk for the Cure, so I could get through the walk. What a difference! It was literally, like night and day.

I'm sticking with it at least until my next oncologist visit in October. Hoping there's something new available by then, that won't be so terrible.

Trisha, I've been thinking about you all this time. I do hope you didn't quit taking Femara without starting a different inhibitor. It's just too frightening.

My Oncology appointment was this afternoon, and my doc submitted a prescription for Aromasin to see if I can tolerate that better. He told me that one study shows that only 40% of patients continue Femara the full five years. I'm still afraid of Tamoxifin, so will give the Aromasin a try and see if it's any easier on my body. Keeping my fingers crossed! It'll be a week before I get the shipment.

I started out with Aromasin,think i only lasted 3 or 4 mos on that.So onc took me off,gave me a 10 day break then put me on Femera.My feet were already hurting from the SE'S of chemo,and now they hurt even more as do my ankles,legs ,arms and hands,and the hot flashes are a royal PIA.

He then tried me on lyrica for the pain,that caused more problems,switched me to gaboplatin/neurotin,couldn't take that either.That last one made me lose my balance,and within the first few days i fell flat on my face out on the patio.It also made my sight blurry,tired,back hurt,weight gain etc,etc.I stopped that one as well and just take vicodin,which barely takes the edge off the pain.I also go back to see the oncologist next month,so he said he may try tomoxafin.

I think in this fight for life,we're damned if we do and damned if we don't,so we have to weigh it all out very carefully.

I can no longer cross stitch,or do any hand sewing and that sort of stuff.What a bummer,BUT i'm alive and that's the important thing,at least for me.
Kathi

Kathy, it sounds like you're having a rough time too, I hate to hear that. What a journey this is, eh?

I take aspirin daily to take the edge off the pain & stiffness, and that does help. It doesn't make me able to walk any better, but at least I can get through the day. I do a lot of computer work, and when I get up in the morning, my right hand frequently is clutched in a fist and doesn't want to open up.

My mom had problems with blood clots, and tamoxifin can cause those ... plus it has a minute chance of causing a uterine cancer. Both of those scare me enough that I'm really trying NOT to take it.

Even tho I chose double mastectomy and sentinal nodes were clean, I'm not willing to assume that I'm safe. So I'll continue to take something ... and work my way through it, day by day. ... only 3 years, 8 months to go!

All aromatase inhibitors do the same thing....they inhibit your body's fat from producing any estrogen....any at all! Zilch. And if you are post meno you lose bone like mad....that's why the aches.
I took tamoxofen for 5 years...with no ill effects, in fact Tamoxofen mimics estrogen in some of it's actions, like in preventing bone loss.
Then my doc put me on Arimidex....supposedly for 5 years....supposed to cut the recurrence of BC by 20%.
I ached and felt awful....so at the year's appointment, I told him and he said..."stop taking it". And he explained that after chemo and radiation and a mastectomy the recurrence of BC after 5 years was something like 5%....and when you decrease that by 20%....you are left with very very small difference....and if it really negatively affects your life...don't take it!!
It was about 2 weeks or less and I began to feel better....but I still have bone loss!!
Linda C

I had to quit the AIs because of severe side effects.

Quality of life. QUALITY.

I don't have any personal experience with Femara, but it got mostly poor reviews at the askapatient site. I like reading other patients drug experiences before I start taking something... it doesn't look like there are many choices of drugs for those of you needing hormonal response modifiers though.

Here is a link that might be useful: ask a patient

I was on Femara for two years. I felt like stoneybloney did but thought it was just me or old age. My insurance company raised the price of Femara from $60. for a 90 day supply to $906. for a 90 day supply. Yes, I typed right. Well it wouldn't take long before I would be in the poor house so my doctor put me on Arimidex. It is cheaper but I think I have more side effects with it. I'm going to see if I can change insurance so I can go back on Femara. I will not stop taking medication for BC even if I have side effects. The Oncotype DX test said I have a 31% chance of recurrence or 20% with Femara for 5 years.

Arimidex was AWFUL. The pain, not being able to walk, losing all function in my hands...

And this was after I got a blood clot from Tamoxifen.

The drug companies just get richer and richer from "treating" cancer, rather than allowing the cure to be available. There's no money in a cure, but there's a HUGE goldmine for treatment. :(

Jkayd ... I about fell over when I saw the cost. Femara and Aromasin run neck and neck for cost. $375 for a 30-day supply. If I get it at the pharmacy, my insurance covers all but $87.50 a month. The mail-order plan we have costs me $30 for a 90-day supply. HOLY COW! Im so grateful for our insurance.

This is a good reminder. Anytime a prescription medicine makes you feel bad, ask about a substitute.

I'm also not fond of the idea of taking Tamoxafin,as it gave my sister blood clots,and then she got pneumonia.That was 13 years ago and she is still ok.However she only had 1 breast removed and no lymph nodes at all.I had a double mastectomy,and 17 nodes removed in my right arm and 3 in my left.In my right side 4 of the 17 were positive,and the left side none were positive.I'll take what i need to take to keep this monster at bay,and guess i'll just have to suffer the consequences.

Can't take aspirin as i already take a blood thinner as i still have my port in,2 years out from surgery.

So far they say all my bone test are fine so far,and that's a good thing.

The femera also makes my hair continue to fall out,anyone else have that problem??
Kathi

The problem is that there are very few options for post-menopausal women when it comes to breast cancer inhibitors. And every single one of them have side effects that can adversely affect Quality of life. So you trade one thing, and accept another.

I'm only 56. Way too young to take nothing, and risk an escaped cancer cell growing in another part of my body. So I will continue taking SOMETHING that is proven to inhibit this Killer from coming back. I just want to be alive and well at the end of my 5-year stint.

I took Tamoxifen for 5 years and 5 years of Femara. The onc doc wants to keep me on Femara for as long as I can tolerate it as long as my bone density tests are okay. Sure I'm tired and I ache but I was connecting it more to the side effects of treatment, my weight and my age and my lack of real exercise. My back really hurts to stand for more than 5 minutes at a time and my knees and hips aren't what they used to be. I will stay on the Femara because I would rather be sore and alive rather than the other option.

I have nothing to add, but I just couldn't ignore your stories. I wish the drugs were easier on you.

I'm 43 and taking nothing. When I was on those god-awful drugs (have you REALLY researched them? Tamoxifen only adds an average of 7 months to life...) I felt like I was 80.

Cancer is a crap shoot, anyway. Bilateral mastectomies, no node involvement. No chemo, no radiation (contra-indicated - risks outweighed any possible benefit).

Well i'm 72 but i still want some more years of life,want to see my GGK'S grow up.I know none of us are going to live forever,but i want to live as long as the Good Lord allows.

After seeing what you all pay for these drugs,i'm even more glad we are retired military.I pay only 9.00 for a 90 day supply and have them delivered right to my door.Most all other meds i get on base,but that one they don't carry.
Kathi