FEMARA

MuddlingThrough

calee, I take mine in the morning, not for any particular reason except that's when I was used to taking my daily vitamins and supplements, and Ibrance, nowadays.

Nancy618

I have been doing yoga and it has made a big difference in my pain and stiffness. There are lots of YouTube videos that can get you started.

Be careful with the use of essential oils. Oil and water doesn't mix, so putting it in bath water can be dangerous unless you emulsify it first. This is a great article explaining it. https://wholenewmom.com/health-concerns/essential-...

Wow Brenda that organization sounds amazing. If there was something like that in my area, I sure would take advantage.

Gkbuser I hope your back is better and your trip wasn't painful.

It's 6 weeks today since I stopped the Femara. I can say that my pain is pretty much gone. Still bothers me a bit at night, but I continue the naproxen and magnesium lotion before bed. I was supposed to get a call back from the MO nurse about starting tamoxifen, but didn't. I feel so much better, I hate to start the cycle again.

Hope everyone has a great weekend!

gkbuser

so I'm happy to report that I had my second acupuncture last Friday. Pain in my right shoulder is gone, back pain is down to about a three. Started out as a 7. My foot pain is also significantly better probably down to around a 2 and it was up to an eight at one point. So far I'm very encouraged with the acupuncture.

2FUN

gk, that's great news!!!

Nancy618

I need to find a topic specific to post-menopausal women taking tamoxifen. I haven't been successful yet.

I started the tamoxifen last Wednesday. All seemed to be going well.

This evening, I went to the bathroom, and I had a discharge stain in my panties...dark yellow. And when I wiped also. Don't know if it's my imagination, but I feel like I have menstrual cramps (mild) now.

We're due to go to our cottage early tomorrow morning...guess I'll give the MO office a call on our way.

I was so hoping this was going to be the rx that worked!

mudd

I've been taking Letrozole since February and I'm starting to get an achy feeling in my fingers, elbow and knee all on the same side. Everything I've read seems to say that the side effects are on both sides, not one. I do have a bad elbow on the painful side to start with. Could this be made worse by letrozole or is one sided achyness not a true symptom. I don't want to start switching around meds yets. Thanks

Nancy618

I have had the one sided aches and pains. I think if you already have issues, like I have arthritis and sciatica, that it will make that ache more.

FWIW, 6 months is about the time period where the SEs of any of the AIs really got to be bothersome.

Nancy618

Update on my pain on tamoxifen. It kept getting worse. I've been told to stop using it and have been scheduled for a pelvic and vaginal ultrasound when I get home. And that started only 4 days after starting tamoxifen. Maybe it's not related, but I haven't taken it in 2 days and the pain is half of what it was.

Depending on the US, I will probably go back to letrozole and increase yoga sessions and walking and riding a stationary bike. I'm determined to make a go of this stuff, but if it's going to cause more problems and pain than I'm willing to sacrifice lifestyle for, then all bets are off.

PatsyKB

A 3-month+ report - I've been on Letrozole since mid-June and, knock on wood, so far have not had any adverse side effects. Because I've been having localized discomfort/ache/pain in my left hip/flank area for a few weeks, I reported it to my Medical Oncologist in order to be prudent. He wanted to see me just in case in order to determine whether or not this was caused by the AI or if it's something else. As a result of our meeting and his examination, he determined that it is NOT caused by the Letrozole (yay!) and he ordered an X-Ray which will be sent to my orthopedist.

Looking back, I'm glad I reported it - ruling it out as a side effect( instead of my worrying or assuming that it was a side effect) has eased stress a great deal. Now I'll talk with my ortho and move forward with physical therapy and/or acupuncture or whatever she determines is appropriate.

Whew.

GrandmaV

Hi everyone,

I've been on letrozole 6 1/2 years.  From my experience the side effects get worse for a while and if you can hang in there 2 to 3 months later they're better again.  9 months in I was barely able to walk from the knees hurting, my onco said to give it some time and it may get better and he was right   The pains in joints for me, are definitely made worse by inactivity and weight gain.  Activity, especially in water, is very helpful.   Before my second surgery I had lost 50 pounds and was feeling much better.  My bilateral mastectomies took me a lot longer to recover (had complications) then I thought it would and the 3 months of very little activity  took a toll then depression set in.  I also have gained back 20  pounds in the last year since surgery and am again feeling very bad.  My hands and legs.  But I did it before, so I'm beginning again to loose that weight and get more active.  I take mine at bedtime because the fatigue seems worse when I take it in the morning, but not everyone has that. My hot flashes have gotten better.  The first year they were nuclear flashes, with sweating.  Now they're less frequent and I just get warm.  I have a battery powered hand held fan with me at all times and lots of paper and  cloth fans throughout the house, and in the car.  So it's not easy at times but if you push through and work at staying active it's doable.  I never agreed to do 10 years when I started on letrozole 5 years was the recommended time, then someone moved the finish line.  So when onco said 10 years was now recommended I said I would do another year and then re-evaluate.  He said the longer the better.  So I'm working to get to year 7 and then we'll see.  

Lanne2389

GrandmaV, thanks for sharing your story. It gives me hope and determination to stay on Letrozole. As I told my GP yesterday while asking to increase my cymbalta, it's hard to have a happy outlook when you have better days but not good days. This whole side of BC has been an unfortunate surprise.

ktab96

Grandma V - I am also on 10 year treatment. I took Letrozole (Femara) for the first three years with no problems. Then year 4 kicked in severe inflammation in my joints. I was switched to anastrozole for the next couple of years. After that my Onc switched me to Tamoxifin for the next 5 yrs. I was told I could not be on letrozol/anastrzole for no more than 5 years because it depletes bone mass. Before BC I had an excellent bone density. Now I am osteopenia in my lower back.

GrandmaV

ktab96 - did you feel any better on anastrazole?

Lanne2389

ktab96, to combat osteoporosis while on Letrozole, I get an infusion of Zometa, twice a year (for 3 years). The Zometa is also said to help against recurrence. Has your Dr suggested it?

PatsyKB

ktab96, like Lanne2389, my MO prescribed a twice per year osteoporosis medication, in my case, twice-yearly injections of Prolia which has been shown to be effective in limiting or even stopping bone loss and, in some patients, even building bone density back. Hoping that proves to be the case. I second Lanne's suggestion to discuss it with your doctor if your doc hasn't already mentioned it.

Prairietwin2

I am having the same kind of pain and thumb problem. Have not got a solution yet. Night time is the worst

ktab96

GrandmaV - my symptoms got better but they did not entirely go away. Once I switched to Tamoxifen all of my symptoms went away

Lanne2389 and PatsyKB I am osteopenia in two verabre. My Onc does not think an infusion is needed at this time. The tamoxifen has actually improved my bone density. My Onc also recommended for me to take Caltrate.

miranda2060

I was taking anastrazole for several months, minimal-seeming side effects, but I freaked out when I noticed how much my hair had thinned. (Hair loss is an emotional "trigger" for me, for various reasons.) Stopped taking it, and my MO said I could take a break until after my reconstruction revision surgery (early this month). Last week she proposed a switch to letrozole on a trial basis, and I am convinced that the side effects will be the same or worse. I am afraid to take it, and of course, afraid to NOT take it, given my hormone-positive cancer and family history (non-BRCA).

Anyone do better on letrozole than on anastrazole? Thanks.

ktab96

Everyone reacts differently to meds. I have a friend to tolerates letrozole very well with very little side effects She could not tolerate anastrazole. I was the opposite. I had a problem with letrozole after 3 years so I was switched to anastrazole. I tolerated that one better but I still had side effects.

I guess you won't know until you try it.

gkbuser

grandma, how has your bone density been?

Taco1946

Miranda - probably what you find is that the SE's are "different" on different AI's. I admit my hair seems to be thinning more on letrozole than it did arimidex but I feel so much better that I am willing to wear a hat. Just got put on something for the hot flashes. If I could control them, I could even wear a wig when I wanted to. I don't think anyone knows why one of us does better on one drug than the other. It's sort of trial and error. Please don't give up on the femora before you try it. Good luck with your surgery.

FarAwayToo

Can anyone filling their letrozole prescription at CVS tell me what brand of the generic you get?

Lanne2389

FarAwayToo - Teva

miranda2060

Taco, I have been taking the lerozole for less than a week -- slight pains in hands and feet, nothing really problematic yet. I was kind of hoping the hair thinning would be less for me on the letrozole than the anastrazole. I guess we'll wait and see. I have considered all kinds of solutions, including wigs (or halos, partial hairpieces), and even the iRestore laser helmet, very expensive but some ladies on the "Thinning Hair" thread have had success with it.

FarAwayToo -- I'm getting Accord at CVS.

Taco1946

Miranda - be certain you are exercising and drink plenty of water. Our dog gets me out and I play golf. Have strayed from my stretch and flex class but am trying to get back to it. Has not only helped the joints but I've managed to hold my weight. As I said, I resigned to the hair thinning if the hot flashes would go away so I could wear a wig. Bought a couple more cute hats yesterday too.

miranda2060

Thanks for the advice, Taco. I started yoga, walking and cycling when I started the AIs, and was doing well in that dept., but have been sidelined somewhat by revision surgery on October 1 (I'm only allowed walking as exercise, so try to do a lot of that). It definitely helps with emotional health, too, though is going to get more challenging as the weather gets colder.

We are always "bargaining" with the AIs! I have some finger joint discomfort from the letrozole, but not the dry eye I had on the anastrazole. Pick your poison, I guess! I don't believe I could ever resign to the hair thinning, but who knows? I'm interested in knowing more about partial hairpieces. I do wear hats most of the time anyway, pre-cancer (berets and such), but I seem to be very emotionally attached to my hair.

Polly413

Teva

sneezyhead

Hi there,

I have switched to letrozole after six weeks of anatrozole because of severe joint pain, specifically in my hands. I developed, very quickly, painful trigger finger in my pinky and thumb on my left hand. I'm taking a ten day break and will be getting PT. Have started wearing a thumb immobilizing splint and am feeling much better, and it's surprisingly comfy.

Advil has been helping, too. good luck,

Josie

FarAwayToo

Lanne, Miranda and Polly, thank you for replying about CVS brand. I want to try Teva - I've been getting Breckenridge at my grocery store pharmacy, and I read they manufacture it in India, while Teva is being manufactured in Israel. Supposedly better quality control etc.

I called my local CVS and they told me they stock Teva, but the brand can change any time. It depends on who they have contract with. Looks like Miranda has Accord, I didn't research that brand. I think I will transfer my prescription to CVS, and check one more time before filling.

Lula73

You can also request they get you a certain brand. They should put it in your file and always fill it with that brand (but double check when you order the refill and when you pick it up before leaving the pharmacy counter just to make sure). The pharmacy will order it from their 3rd party supplier vs ordering it from the pharmacy chain's central distribution center.