FEMARA

ok cool. That is what i was wondering is if it were accurate. There was also no place for multifocality which I have. Good point about it only talking about survival and not reccurrence. I also would like to still be alive in 10 years without mets or recurrence.

gkbuser, I have similar stats as you, except I had grade 2 and an oncotyping score of 14.

The last time I looked for the Predict site, I used Google and I found a site that had numerous predictors and a plethora of information. I don't remember if I bookmarked it or not. I'm not on my computer now.

Anyway, I talked to my oncologist about it and he emphasized that it predicts survival, but not necessarily no recurrence of breast cancer. But even so, my numbers also come out to a 1% increase of survival at 10 years. It comes down to quality vs quantity. Do I want to live 10 years in pain and with other side effects, including brittle bones that increase risk of breaking if I fall, or do I want to live 10 years pain free and able to enjoy life. I'm 66, so my perspective may be different than others.

Right now I'm on Femara for the second time. But I've only been back on it a2 weeks. The pain is back, but I'm managing it so far with essential oils and nightly ibuprofen so I can sleep. As long as I can function, sleep and manage pain, I'll continue to take the Femara. But if my quality of life deteriorates again, I'm going to go without.

the difference on the intrarosa vs say Premarin is that the action of the medication is localized to the vaginal tissues. It is not systemic. Blood levels in the clinical trials were not above the normal range for a post menopausal woman and the blood levels did not rise significantly either. Your GYN would not have written it if they hadn’t already been educated on it from an in service or CME class. And they certainly aren’t going to give you something that they know will hurt you. The medical advisor has to be very careful on what he says and how he says it for legal reasons.

Lula, I'm not exactly sure what you mean when you said "Your GYN would not have written it if they hadn’t already been educated on it from an in service or CME class".  My thoughts are that he had no idea that this product wasn't good for ER+ girls like me.  I may be missing your point...you know the chemo fog still hits me at times!  Thanks. 

TaKane - I take my femara in the morning but I don't think it matters - just that you be consistent with the timing. I have minimal SE's and feel much better now that I am getting more exercise. If you have trouble with it, talk to your MO. I didn't do as well on arimidex and made the switch about 7 months ago. But don't get ahead of yourself in anticipating problems. My reading suggests that AI's are easier than tamoxifin.

I had both an achilles heel repair and carpet tunnel surgery before BC. Arthritis in a variety of places but my bone density is very good. I've taken glucosimin and chrondium and calcium with Vitamin D for several years and think it continues to help my joints. Many of my friends are on their second hip and knee and I still have the original set of both.

As I was typing this, I realized that I have "one year down" with the AI's.

moody- the company that makes intrarosa has been very thorough in getting the GYNs educated on this option through inservices and educational meetings. It works different than the estrogen creams/pills and has different labeling than the creams/.pills because of the findings in clinical trials (i.e. no blood clot boxed warnings etc). It's really a novel medication for vaginal atrophy. If your GyN had not been inserviced or attended an educational meeting on it, the odds are that they wouldn't have heard of it yet much less prescribed it. Since they don't have long term studies in women with BC yet the fda requires them to put the statement about BC patients in the prescribing information as is. But when you understand the detailed science behind how intrarosa actually works, the extent of the localization (meaning yourenot getting clinically significant increases of DHEA, E1 or E2 in the bloodstream that can be detected by standard laboratory testing), and the processes involved in vaginal atrophy occurring, you begin to understand why GYNs who don't write estrogen creams/pills for ER+ BC patients are willing to write intrarosa. It's not a guarantee, but I'm betting we will see the BC precaution/warning removed at some point from intrarosa.

moody- No problem! I feel your pain on the brain fog. It’s like my brain doesn’t process things the same way anymore and i have a hard time finding my words and losing my train of thought mid-sentence. Regardless of brain fog, alot of this can be so confusing especially if you don't have a background in pharmacy or healthcare. That's part of the beauty of these forums - we can ask, comment, share and help each other on this journey. The fda dictates that the medication manufacturers word things in I swear the worst possible way for a non-medical person to understand. For instance, they will dictate that a medication has to have something along the lines of, '...the human relevance of xyz condition seen in rodents cannot be ruled out in humans and the relevance of these results as it applies to humans is unknown. It is unknown if humans will develop xyz condition, and patients should be counseled to be vigilant in identifying the following symptoms and report them to their dr' (inevitably, common things like headache, sore throat, hoarseness, etc are on the list; all of which occur during cold/flu season in fall/winter and during pollen season in spring/fall.

A non medical person would read it and freak out and likely never take the med and complain to their friends that their dr was trying to kill them because the drug company couldn't even rule the risk out in humans!

A medical person would read it and say, 'of course developing xyz condition couldn't be completely ruled out in humans - you can't make everyone on the planet take the medication. The xyz condition developed in some of the rodents (usually 5-maybe 200 rodents total are used in rodent trials) but 0 humans have developed xyz condition out of the 1,000s of who took it for X number of months/years in clinical trials and post marketing timeframes. No problem!'

Anyway, I hope the intrarosa works for you. Let know how it goes. I heard it may even have an extra benefit that would make it the equivalent of a female viagra. Now wouldn't that be something!

lesagesj - I started letrozole at the same time you did. I won't be tested until July so don't know if my liver enzymes have been affected or not. But I have not had bad side effects that I know of except achy hands. I am coping with that but liver changes would get my attention like it has yours. Sometimes apparently it makes a difference who the manufacturer of the generic is. Mine is made by Neva. Maybe if you continue to have weight gain and other SE's that bother you, your MO would change your prescription to specify another generic manufacturer or the brand name med Femara. Just a thought. Polly

Hello ladies, I just started taking letrozole (generic) a little over a month ago (5 weeks).

If you have joint or bone pain as your main SE can you tell me when it started? Just this week I started experiencing a good deal of it, and I thought it would take a while before it would show up.

I was premenopausal before chemo, but chemo put me in chemopause. After that we decided to keep me there with Lupron shots and start with AI. My main symptoms of menopause were hot flashes, but bone and joint pain just started a week or two ago, and it's getting worse.

Elevated liver enzymes- very common with anti-hormonals. All the anti hormonals can cause liver toxicity so it’s important to make sure you’re staying hydrated and drinking 6-8 glasses of water a day.

Joint pain- yes the symptoms can show up even within the first few doses. Curcumin supplements and using/exercising the joints can help tremendously. They are a result of no/very little estrogen for the most part but can also be caused by the fillers used in different manufacturers pills. If curcumin and exercising the joints doesn’t get the pain to a bearable level you might want to ask yo switch manufacturers (you may have to get your prescription filled at a different pharmacy). If that doesn’t help then perhaps switching brands would help.

Thanks, gkbuser, Lula and mom-mom. So, nothing out of the ordinary. My MO told me that this joint, bone and muscle pain will get worse but then it will get better. She says she usually sees improvement in SE around 9 - 10 months in. I didn't ask her why it works this way, but I hope she is right.

gkbuser, for me, I didn't see any difference between my chemopause symptoms and what I've experienced after I started Lupron but before I started letrozole. It's the letrozole that's supposed to take our estradiol levels really low, which starts affecting the joints. Until I started it, I had hot flashes and absence of periods, but that was pretty much it.

Last week I hit one year on AI's. Started with arimedex but was having headaches and have been taking femara for about 7 months. I had arthritis before BC and had been taking chondrodium and glocosin (spell check does't know either of those words) as well as Calcium with Vitamin D. I added generic claritin during chemo and have continued it. I agree with Mom-Mom, exercise has provided the biggest relief for the aching joints. I fired up my fitbit. My goal is 50,000 steps a week and I try to play nine holes of golf and go to stretch and flex class at least twice a week. I also try to remind myself that I am 18 months older than I was at diagnosis. Many of my friends have had hips and knees replaced and I'm still on my original set of each. My hot flashes are manageable but I thought I left them behind 30 years ago!

If you are having trouble with the drug, please talk to your MO. Some of us do better on arimedex and others on femara and I certainly can't see a pattern. What's in the generic (the so-called fillers) also seems to make a difference so when you find a manufacturer that works for you, make certain your pharmacist respects that even if you need your MO to add that to your prescription or to change pharmacies.

Nancy, I feel for you. I am on a break from my second AI, After the first break from the first AI my symptoms improved significantly after 2 weeks off, and after 3 weeks I felt like myself. I have been off AI #2 now for 2 weeks and I still am having tons of SEs. I see MO in 2 weeks. I am having a hard time working as I need to do PT with developmentally disabled children, run, jump play on the floor and transfer kids in and out of their wheelchairs all day. I have one AI left to try....

BTW Nancy, I am originally from WI too! DS just finihed his first year at MU, and he comes home today!

GK, I too am concerned about the effects of too little estrogen, especially regarding an increased risk of heart disease. When I raised my concern with my MO and my PCP, their response was to consider statin therapy. Really?!? Another medication?!? So frustrating and disappointing.