FEMARA
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I have been reading thread as I will likely be starting on Letrozole after rads in June. I am only 3%ER+ and PR-. I am really on the fence as to whether to take AIS as the SEs sound horrible. What will I gain if I'm only a very weak positive? When I mentioned this to MO last week, He said that anything over 1 is positive and I should definitely do HRT! When I suggested that feeling awful for a small if any benefit, was appealing. He told me that the SEs weren't bad and that most people who complained of them had pre existing conditions or would have developed them anyways. Not sure I agree with this!! We didn't discuss long but it will be discussed in detail when we meet again pots rads. Comments?
Gail
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bravepoint...I've been on Letrozole for over 2 years will no SE's to speak of. Yes I do get tired but feel much better when I exercise regularly...same as before taking Letrolzole. I've had some hair thinning at my hairline...but so does my sister who doesn't have BC. So it is hard to say what is attributable to the drug and what is the natural aging process....I was 59 when DX'd. Some people do have terrible side effects. I say give it a try and then decide if it's for you or not. If my SE's were bad I'd probably stop.
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Thanks, Nash54! I was thinking along the same lines. I hate to not do something that might prevent recurrence so I am willing to try it for 6 months or so.
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bravepoint - I think trying it is a good idea since many people have no side effects. Personally, I find it a tough drug. If I were early stage, I would not take it given the symptoms I have and I would focus on wellness - low stress, eat well, regular exercise. Being happy and not fatigued is going to be a much more powerful defense against recurrence. There is actually far more data to support the benefits of exercise then there is to support any benefit from letrozol and the benefits are much better. Just no pill to prescribe and pay for, so the doctors don't seem to get the information.
>Z<
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Thanks, Zarovka. I am focussing on wellness already not that I led an unhealthy lifestyle before my Dx. We'll see what happens.... My stage is relatively low but grade 3 with a lymph node involved.
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bravepoint- I don't have answers for you, but just noticed that we had the same surgery date, sister. How are you feeling
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Falconer - I'm feeling pretty good. Hope you are too! I still have 2 more weekly chemo treatments to go then radiation.
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Hi April,
Reading your post just now has been very helpful. I told my MO's office today of my Femara symptoms (very similar to yours), and they said they see many women on this AI and that my symptoms are unusual and they want to see me Thursday. I have joint and muscle pain, frailty, and some balance problems of I bend over. Their response scared me a little, but I know everything is AI related. I'm 65 and had always been active, taking ballroom lessons, swimming, senior Zumba, and walking my dogs--now I'm not doing much at all. I omitted two Femara pills this weekend and felt better, but I took one this morning and felt worse.
So I get at least a few days off and see the nurse practitioner on Thursday. I will be glad when I can play on the floor with my dogs and take them for walks. I hope you are feeling well and enjoying your grandkids. I'm Stage I and was in a Chemo trial, but so far the AIs are extra hard because they are prescribed for so long.
Feel free to PM me if you like . . I'd love to hear how you're doing.
Susan
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thinking positive - I did not have any scans either. My onc days I am low risk. I am not sure I believe him, so I monitor myself very carefully. They may not be willing to do scans, but I go to my GP to check everything. Went for a pap last week due to spotting, and she did see some internal bleeding. She is sending me for an ultrasound. We have to be much more vigilant now and be strong advocates for ourselves. My onc sees me as an older woman, maybe, but I have a lot of living yet to do.
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thinking positive - I did not have any scans either. My onc days I am low risk. I am not sure I believe him, so I monitor myself very carefully. They may not be willing to do scans, but I go to my GP to check everything. Went for a pap last week due to spotting, and she did see some internal bleeding. She is sending me for an ultrasound. We have to be much more vigilant now and be strong advocates for ourselves. My onc sees me as an older woman, maybe, but I have a lot of living yet to do.
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thinking positive - I did not have any scans either. My onc days I am low risk. I am not sure I believe him, so I monitor myself very carefully. They may not be willing to do scans, but I go to my GP to check everything. Went for a pap last week due to spotting, and she did see some internal bleeding. She is sending me for an ultrasound. We have to be much more vigilant now and be strong advocates for ourselves. My onc sees me as an older woman, maybe, but I have a lot of living yet to do.
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bravepoint, we have similar DX. I am low ER+ and PR-. I am on AI for 5 years, 14 months in. No joint issues, and I have RA. I am also in Canada (BC). I was not given chemo, and had a mx, so no rads either. I decided to give the AI and Prolia my best shot, since that tx was my only option. I am 65. Good luck
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Stellamaris...How are you doing with the Prolia? My insurance company won't pay for it. So I am taking Actonel. They hardly pay for that either!!
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Stellamaris - Thanks for the info. I hadn't heard of Prolia before. Does that help maintain bone strength while on Femara?
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Hi all...I believe in making informed decisions about our treatments. I'm not against anti hormone treatment and I'm very happy for those who do well on it. However I do think its important to know that some SEs from the A's may be permanent. Once well informed I support all decisions made. Good luck to all navigating this disease.
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I've never used Prolia but have been on Fosamax for yrs. I was Osteopenia long before IBC raised it's head. I have a HUGE family HX of osteoporosis on both sides of my family so it was a forgone conclusion that I would eventually develope into Osteoporosis.
I did go from Osteopenia to Osteoporosis in the first year post IBC DX and TX - can never be sure rather or not the TXs had anything to do with that - it might have just been the time 'it' decided to progress. I've been on Femara/letrozole for 7 yrs and been taking Fosamax with no further progression while on Fosamax.
I have been told that the reason for x-raying the hips in DEXA tests is that hips are the area that first shows the loss of density.
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my MO did a bone can and it showed osteoporosis in the spine and osteopenia in the hips. I have had only one Prolia injection so far, in November. Next one is in May. So far no issues. I was lucky to have it covered through my employee insurance plan, but I did have to write the insurer and get special authorization. It is $400 a shot in Canada. I would have paid for it anyway, as I already have RA as well.
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Bravepoint yes, it supposedly offsets the bone loss from femara. My MO doesn't think it improves the chances against recurrence, but my bone doctor said there has been research that says it may. She wrote that on my authorization form as well.
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Well, the pharmosphere giveth and the pharmosphere taketh away. Had my Prolia shot today—Medicare & BCBS issued new eligibility guidelines for Prolia: patients with bc dx, on an AI and who were either osteopenic or osteoporotic at start of AI therapy. So I went from “either suck it up and endure Zometa or pony up $5K a shot" to no co-pay at all. Hence the “giveth."
The “taketh away?" Picked up my refill of letrozole tonight and it was Accord. My little pharmacy/kosher deli, who'd been able to get me Teva or Roxane when the big chains refused, said its supplier couldn't this time. (Drowned my sorrows in matzo ball soup). Hoping my SEs don't worsen—if they do, I will dip into my stash of real Femara until the shortage eases. (And since I'll be in London next month, Bob is considering referring me to a colleague over there to write me a scrip for Femara if it's appreciably cheaper than the $588 I paid Canadadrugs.com for a 3-month supply).
BTW, research is increasingly showing (according to my primary, who attends the AAFP conferences each year) that bisphosphonates—whether oral or intravenous—are inferior to Prolia in protecting against both fractures of hips & long bones and preventing or delaying onset & progression of bone mets. I have GERD severe enough to show up on upper GI endoscopy, so Fosamax, Boniva, Actonel and their generics are off-limits. I had one Zometa infusion—even with the AccuVein IR lamp it took five tries to find a usable vein and for four weeks my arm looked like I’d been beaten—which left me with a high fever, neuropathy and flu-ey symptoms for days.
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Hi Stellamaris - - I have been on Letrozole since last April and osteopenia showed up on my DEXA. I have had 2 Prolia shots so far - - no SE from either. Unlike your MO, mine believes that Prolia DOES strengthen bones and reduces chances of mets to bones. I liken it to adding a protective coating on my bones to keep nasty cells out. I am getting the prolia shot every 6 months. I think she said I would get it for 2 years but I recall reading that others have gone beyond 2 years. I plan to ask her about that at my next visit. I'm eager to see if my next dexa improves or at least does not show further decline.
To all -- I logged in today to get some advice on the rapid hair loss I have experienced in the last month.(I will post this on the hair thread, too). I have had hair thinning over the past year but serious shedding this past month (very depressing). I can see pink scalp through the top of my hair. I just requested a blood check to rule out thyroid (I read that someone else had issues) and asked my trusted MO for other suggestions. Here is what she advised: 1. add 500 mg of vitamin C to my supplement regime (apparently new info came out that this may help prevent recurrence and aid in hair issues, 2. go ahead with the thyroid check, and 3. stop taking Letrozole for 2 weeks. If the thyroid is fine and If the hair loss improves without the letrozole, we will assume it is the cause and she will switch me to a different AI, It seems that the other AIs cause hair issues, too but I guess it is worth a try. I think she will put me on Aromasin. Does anyone know if there is a better manufacturer for that med? I have been getting Teva for my Letrozole.
I thought I was over the hair nightmare but here I go again. I am so miserable.
Thanks for sharing your experiences and wisdom!
Shelly
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Any suggestions for dealing with overwhelming fatigue
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Hi Ladies, we were just talking about hair thinning on the hair thread. I've had great luck with bone broth. Completely stopped the shedding.
Here's a link to the other thread.
https://community.breastcancer.org/forum/69/topics/707348?page=812#post_4918909
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Gracie - All I can offer you today is empathy. Overwhelming fatigue was the theme of the day. Out of nowhere. I mean I ran 4.5 miles yesterday. All I wanted to do today is lie down. I had a packed day and I could not rest. Rough day.
I hope this passes for both of us.
>Z<
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Z, big hugs !!!! I know, I could not function today. Too tired to even read, which for me is bad. Hope we both feel much better soon
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it's hard to make plans. Yesterday we rode bikes for a while. Later in the day we had to park in handicapped parking as it was hard to walk The day before I was too tired to read the paper Today I had trouble taking a shower. Tonite I felt good.Who knows what tomorrow will bring?
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Chloe - I think not knowing how I am going to feel is the hardest thing. I make a simple plan like driving 40 minutes to a town for shopping. All seems good and then I collapse and can barely make it home. Run 4 miles the next day. Quite the mental challenge to plan when your energy level is random.
Today I ahd an active morning of meetings and errands but by 5pm I was so tired I started crying at the prospect having to drive 10 minutes pick up my daughter. Got there okay. Then when I got home, I powered through a pile of dishes, picked up the whole downstairs. Exhausted again now, but I can rest.
Tomorrow I have an empty schedule. I need this.
>Z<
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Day 3 of the Accord version of letrozole…so far, so good. Had my personal-torture…er, training evaluation at the gym today. Was surprised to find that my two-month carb debauch put less weight on me than I’d thought, but still too much. With a BMI of 37.5, I have some serious work to do. I got through the evaluation exercises okay today and decided I would go for twice-weekly personal trainer sessions after all: I need the accountability to give me the discipline, as well as the guidance as to which exercises to do when, how hard, and how many reps. The trainer asked me if my right trapezius hurt—how did he know that shoulder’s been driving me nuts for weeks? He was able to detect my scoliosis without my telling him. We’re doing some posture-improvement exercises to un-hunch my shoulders and keep my kyphosis from becoming a full-on “dowager’s hump.” Whole bunch of other stuff too…but not cardio. My aerobic capacity turned out to be pretty good. My one-year goal is to get my BMI down to 30, lose 45 lbs of fat and gain 10 lbs. of muscle. And with my compression sleeve & gauntlet on, no LE flares at all. In between training sessions, he suggested I go to another branch of the chain a couple of miles away and use the pool to swim and do water aerobics classes. (I chose this more rudimentary branch as my “home” gym because I can walk to it).
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Yeah, Sandy! Those are some beautiful goals. I was never much of the cheerleader type, but if you join the exercise thread, if you aren't already there, you'll get some good encouragement! The personal trainer sounds like he knows what he's talking about. It was a he, right?0
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Go Sandy!
We love to cheerlead on the stage V fitness thread, if you are into that thing. I love your trainer. I love your plan.
This will make a world of difference in QOL and outcomes.
Z
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Oh, Lord, how I hurt! Every muscle I worked yesterday is screaming “HOW DARE YOU!” at me—quads, hamstrings, biceps, triceps, back, etc. Joints are fine, so I don’t think it’s the Accord letrozole. I seem to recall that the way strength training works—and why you are sore the next day or two—is that you are actually micro-injuring your muscles; and on days off, as they repair themselves, they build themselves a teeny bit more. Lather, rinse, repeat.
Bob, who didn’t bat an eyelash yesterday when I told him, is now angry that I signed up for 6 months of 8 sessions a month at $55 per. He insists I go in Monday and try to cut it back to once a week or only for 3 months. Wait till he hears how they first tried to get me to sign up for a year of 12 sessions per month! He says his patients complained that the trainer “works them too hard.” (A couple in their 70s, the wife gave up and her husband now uses all her sessions). He thinks that the way personal training works is that you just get some assigned exercises over a session or two and then you can do them yourself without supervision or feedback; or like a short course of physical therapy after which you’re sent on your merry way. He didn’t know that many people (including his colleagues and their wives) actually have trainers come to their homes or offices.
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