FEMARA

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<

bravepoint- I don't have answers for you, but just noticed that we had the same surgery date, sister. How are you feeling

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

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.

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

Stellamaris - Thanks for the info. I hadn't heard of Prolia before. Does that help maintain bone strength while on Femara?

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.

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.

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

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

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

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<

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?

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.

I'm here to vent, and pass along a couple tips.

DAMN FEMARA!!

For 3 years, for the 2nd time in my life, I was a trim size 6. Ate whatever I wanted. Started Femara. Gained 15 POUNDS in two months. I used to run, but can't anymore. Upper spine radiation destroyed some nerve endings somewhere around my windpipe, and expelling air is hard. (Pulmonologists and ENTs tell me sorry, tough luck.) . Hard to catch my breath. Can't run. Can't lose weight.

HOWEVER ... I've been taking Femara off and on. And I've noticed something about my hair loss. If I start with a pill a day, my hair falls out fast and furious. If I start by taking a pill every other day, for a month, then two days on, one day off for a month, the hair loss is minimal. I still wear a halo hairpiece for my thinning hair, but I have more hair growing and less scalp tenderness.

I've also seen a MAJOR decrease in joint pain by taking a daily Claritin. I saw that tip somewhere on here. Thankful. It works for me. I'm still hurting when I "exercise" (Walking 3-4 miles.) But everyday walking around isn't as hurtful.

I also bought a body pillow. Rather than trying to prop my knees/ankles or other sore joints under pillows when I sleep, it's easier to lean onto one pillow. I keep the pillow on the other side from my husband, so he won't feel isolated. It looks like there are 3 people in the bed, haha.