FEMARA

ThinkingPositive

going in for surgery on Monday. It seems that my implant in my good boob moved off to the side and ps is going to fix it. I had my blood work done for Preadmission testing and came back with elevated AST and AL T levels. Now I'm concerned, can this be A side effect of Letrozole? has anyone experienced higher levels of ALT and AST.

Chloesmom

MO at Hopkins said it was all ornine with pills regardless of my size or SEs have lost 1/2 my hair in last year on this stuff.

Gettinga Capillus laser cap next week to try to save my hair. Bald stillbeats the bine mets my dad and brother endured

KarenAus

Anyone had this problem? Been on femara3-4 months after changing from arimedex and now aving problems with my hands. I can't make a fist with either hand in the mornings mostly but last couple of day it is during the day as well. When I mentioned it to my MO he said carple tunnel but I have had that before and I don't believe I have that. I am worried that I won't have use of my hands if this continues and as a horse rider i need flexible hands to keep my horse happy.

KarenAus.

marijen

Why can you not close your hands - because of joint pain? I take Innovix magnesium quick absorb at Amzn and my finger joint pain is gone. One in the morning, one at night.

Jerseygirl927

i have noticed a bit of stiffness too in my hands, i keep rubbing, massaging, that seems to help. Hair is thinning, not liking this at all. Body odor still worst thing, i have tried almost everying, hand sanitizer, double scrubs, maybe alcohol next. Hating this, cause I got to do this for a long time.

KarenAus

Pain and also they just don't want to. I also have a trigger finger. My hands are so important to me as they are to everyone and I don't see this as a good thing to have for 5-10 years or whatever they want us to take this poison for.

I am actually seriously thinking of giving this up. The side effects for me take up a page.

KarenAus

Nash54

KarenAus....have you tried taking fish oil (Omega-3)? I had some stiffness and started taking fish oil and it has helped alot. I take 1000mg a day with a meal.

fightergirl711

ThinkingPositive have you asked the doc? Elevations can double and not cause alarm, from what I understand (I could be wrong here, I just vaguely remember this during chemo.)

ShetlandPony

Karen, also make sure your vitamin D level is good, as that can affect the severity of hand pain and stiffness.

Redheaded1

Karen Ai's causing hand and foot problems is common.. Mine had me take a month break and they went away so we knew it was the drug. We are now playing with the dose to see if I can stay on for another 2.5 years or if I need to give the Tamoxefin a try

I thought our fat cells stored estrogen and that was why we needed to keep our weight down.

KarenAus

That is what I thought, don't put on weight.

I am taking everything possible for SEs. This looks like going the same as Arimidex which I had to come off. I can't tak temoxifen due to having a blood clot in my heart.

Had blood tests a few weeks ago and all is good except my liver ensymes.

Karen Aus

Redheaded1

Karen-I went back on Arimidex after four days on Femara. I am now going to try Arimidex every other day (my oncologist's recommendation) to see if I can tolerate that. I found the armidex easier to tolerate. There is one other drug, Aromasin that is more of a permanent estrogen blocker. In America, the FDA has only approved it for use after 3 years of Tamoxifen, but docs are prescribing it without. My liver enzymes were elevated a little for two tests when I was being seen every 3 months, then they went back normal. An other thing is that sometimes it is a filler in your drug and not the drug. I switched from the generic made by Sun and Accord to the one made by TEVA and it made a huge difference. TEVA brand generics are typically easier to tolerate because of th filler. They are made in Israel instead of India.

ThinkingPositive

fightergirl...haven't asked MO yet. My PS and hospital didn't mention anything. I had my revision surgery to put new implant in and make the pocket smaller. This seems th hurt more than the original surgery did. I will ask ask my follow up appts I have in dec. it's either the Letrozole causing the increase or the fact that I was away all week and had a maybe two drinks a day ??? Thanks for responding!

Chloesmom

For my hair im getting a Capillus laser ballcap. It is suppossed to be 90% effective. If not you get 75 % refunded

My hairdresser said the $900 ones aren't as effective as the ones with more diodes. I'm springing for the top model $3000. You wear it 30 min every other day. Will see how it goes

Poodlelover

I continue to have significant joint pain/stiffness the longer I am on Femara (so far only 2.5 months). Has anyone who has taken Femara longer term found that this side effect gets better or worse with time? Thanks

zarovka

The joint pain hit me around 6-8 months. Got to the point I could barely walk. I did a full court press of alternative treatments - massage, acupuncture, energy work, lymphatic drainage IR sauna, magnesium - and I successfully committed to daily moderate exercise. Now 10 months out I am running again (a little). I also changed to the TEVA brand generic based on the conversations on this thread. The pain is not gone but I am not on the verge of flushing the bottle of pills down the toilet, which is where I was a few months ago. I'll be on letrozol for a while.

That said, if I were stage I, I would review the studies that support the recommendation to take letrozol. I believe there is some improvement in outcomes, but as I recall it is not that big. I remember reading a review and thinking that I wouldn't stay on letrozol with these symptoms as a stage I patient. Does anyone have links to those studies?

stellamaris

i have been on femara for 12 monthsin December. Honestly, my worst se are the urinary incontinence, urgency and the hot pins and needles in the night that wake me up. Also hair thinning. That being said, I am on medication for rheumatoid arthritis, and that could be the reason I have not experienced any joint pain to date. I got my first shot of Prolia on Sunday, and so far so good. Hugs and best wishes to everyone.

april485

stella, I have to tell you that seeing you are also having that urinary incontinence makes me feel better (although I wish neither of us had to deal with it!) I thought it was only me but I see you and a few others also have this AWFUL side effect. It is the WORST! The urgency is terrible because I meet with clients all day. I wear one of those pads or sheesh, God only knows what puddle I would leave on my chair...YIKES...just the thought of that makes me nauseous!

tangandchris

I have urinary issues as well.....and wear a pad. I leak, not so much urgency issues as the leaking problems. How freaking embarressing

stellamaris

well, I did not make it home from the bus stop yesterday 😭..peed my pants like a 2 year old. Now I make a pit stop at the A&W before I get on the bus. Lol

stellamaris

ps, I did mention it to my MO and he does not believe it's the letrozole, but it is on the list of SEs. He told me to make an appt W/a urologist. Such a helpful guy!

ChiSandy

I’ve worn bladder pads since the last two weeks of pregnancy…32 years ago. I feel naked without them, and they are really valuable in heavy traffic.

It’s been 11 months now since I started letrozole. Roxane continues to be the easiest mfr. to tolerate, followed by Novartis’ Femara and Teva. I think one of the things that is keeping me from balding is that I have been taking biotin for years; another is that I did not have chemo. I notice that most of the women here who have had major hair loss on letrozole had chemo first.

KBeee

My MO has discussed making sure to do Kegels every day. That being said, it may not be enough if incontinence is a problem, in which case a urologist is a wise place to start. They are the experts in that and can offer the most solutions

ChiSandy

BTW, I need to correct a common misconception: fat cells store FAT, not estrogen. But they do make an androgen which the liver enzyme aromatase converts to a form of estrogen. And your adrenal glands (which also secrete adrenaline & cortisol) do the same thing, so simply losing weight (or even surgically removing fat cells) is not enough. The name of the game for postmenopausal ER+ patients is either keeping estrogen from getting to the tumor cells' hormone receptors (via SERMs like tamoxifen or raloxifene), or inactivating aromatase via AIs, thus keeping the body from converting androgens to estrogens.

KarenAus

Thats it I am giving up on the Femara. Need to talk to my Onc about what next but afteer spending more time in hospital I am over the whole thing.

This time I was being treated for the osteoporosis with and infusion and within 12 hours I was in pain and by 3am I was in such agony I was dripping sweat and panting. Ambulance called and off to hospital. 2 days on pain meds and a raised temp. I am now home, very tired and tight but ok except my emotional and mental well being. More mad than anything else.

Seems my body is a drama queen and not happy to be poisoned.

KarenAus.

Kath1228

poodlelover,

I have been on letrozole for just over two years. At first, the pain was really bad, then it got worse to the point I considered changing drugs. But I figured maybe it meant the drug was really working and doing its job. I decided to try and see what I could do to manage the joint pain/stiffness. I take two arthritis strength Tylenol each day. Sometimes I will add in one or two Advil if I feel I need it. But most days I just take the Tylenol. I have also recently started taking 300mg of magnesium each day - in addition to the 500mg of calcium and 1400IU of vitamin d3 i was already taking.

Adding in the magnesium seems to have made a huge difference in the pain level. I think it's because magnesium helps the body absorb calcium more effectiviely. If calcium is not being sufficiently absorbed by the body, The excess can end up in the joints and muscles causing pain. (As I understand it....)

I hope this helps.

Jenwith4kids

magnesium!! I take 400mg a day (200 at night and 200 in the am). helps with muscle/joint pain and I believe it helps with hot flashes too. I've been on Femara for just about two years. the SEs were definitely worse in the beginning . I don't feel like I have any real SEs anymore. I wear my hair short and it's always been very thick; I haven't noticed any hair loss. I did lose 11% bone density between my last tword dexa scans. comes with the territory I suppose.

I'm also a big believer/proponent of exercise!!

zarovka

For those of you who are stage I and struggling I strongly encourage you to ask your oncologist for the studies that support taking letrozol long term. It's not like everyone who takes letrozol is fine and everyone who doesn't sees their cancer recur. At most it is a 30% improvement in outcomes. It may be less. When you weigh a 100% chance of being miserable vs a 30% lower chance of recurrence it's obvious to me the answer is to stop taking letrozol.

I've fought hard deal with the side effects and stay on the letrozol and mostly succeeded. I will stay on it. If life on letrozol is fine, it's definitely worth the little bit of protection you get. But wellness including mental health, exercise and diet have an equal or greater impact on outcomes. I would think twice before I took a drug that undermined my basic wellness.

>Z<

KarenAus

This is the second therapy I have been on and both have given me sever reaction. This time I have lost 12% bone density in 8 months plus the pain and a lot of other things. I hadn't been happy with what it is doing to my body long term and now I know somewhat.

If it returns I will deal with it. As I said to todays onc If it was for a year I would stick it out but this for 5 years no.

KarenAus

ChiSandy

I had a 12% chance of developing bc, yet here we all are. I had no more than a 20% chance of getting cording & lymphedema, yet I got both (albeit mild). With letrozole (not chemo), my recurrence chance is about 8-10%. Scary enough. Without it? Well, 30% higher than that is not a trivial increase. (Might even be higher than 30% increase—where did that figure come from anyway? I’ve heard that skipping endocrine therapy might even double the risk of recurrence—an unacceptable chance to take, IMHO). I’d rather ache, have trigger thumbs & night sweats and gain weight than undergo a painful death. If I have to have pain, I’d rather be in pain and alive than in pain en route to a rendezvous with the Reaper.