Letrozole 2.5mg

pippy1963

I'm on day 20 of taking Letrozole 2.5 mg. I am having heartburn all of a sudden just wondering what other people are having. Thank in advance

pip

Idkidk

hi pippy,

Yes i get heartburn on letrozole and use Pepcid when it gets really bad. Stay away from greasy fatty fried foods.

Best if luck

CA1943

Well I have been on this med for one year now, and I have had nothing but serious issues for the past month. I lost my voice, sound like I have laryngitis all the time now, real bad, and my bones hurt a lot, whether spine, shoulders, wrists, fingers, lumbar, you name it!!! Fatigue, dry mouth, sleepiness,  can be added to these side effects.  I do not know if I will be able to continue this drug.  At first last year it was tolerable, now especially with the loss of my voice, it is REALLY an issue trying to handle business on the phone and so forth...  I wonder IF ANYONE ELSE has experienced voice changes like me while taking Letrozole 2.5mg?  

CA1943

If anyone could tell me if they too have lost their voice while on Letrozole 2.5mg, but were able to regain it, and how they did it, I would be very appreciate of their help.  I am a caregiver for my son, a cancer survivor, so I cannot have no voice!  I might put up with my bones' pain, but I do need my voice back!  I saw an ENT, and he could not see anything wrong with my throat or vocal cords; thus, I can only blame this drug intake! I am not sick, and I do not have laryngitis because of a back cold or sore throat... Is this a typical side effects of this med? Thanks  

CA1943

Has anyone had serious issues with Letrozole 2.5mg, stopped it and did not have any re-occurrence of cancer?  

stexas

The side effects of these drugs SUCK.

I was on another one before the Letrozole drawing a blank on the name but the side effects were much worse.

Letrozole has caused me bone pain, hand pain really bad, foot pain in my left foot, headaches, cramps like charlie horses, Tiredness, weight gain and the list goes on and on.

I have been on a break from this drug for 3 weeks I will start back up again on Wednesday it is the only way I can function on it.

If my chances were not 40% chance of getting it again I might quit it all together.

I try to stay on it for 4 - 5 months then break a few weeks. I see the Oncologist next month.

sbelizabeth

CA1943, has your voice issue been checked out by a doctor? There are lots of things that can cause a hoarse voice, but perhaps one of the more serious ones is an undiagnosed aortic aneurysm. Letrozole's effects suck, but I've never heard of a hoarse voice as a side effect.

Beesie

stexas, you said you have a 40% chance of getting it again... looking at your diagnosis info on your signature line, that's a very high figure. May I ask, what was your Oncotype score

dtad

stexas...I agree! What makes you think your recurrence rate is 40 percent? That seems really high!

Prairietwin2

I have been on Letrozole for almost two years. Lately I have a raspy voice. I have not checked it out yet.

presley0923

I have been on letrozole for 5 yrs early stage estrogen receptive bc. gained 20 lbs the first month. feb. 4 was 5 years and onc said I could stop it cold turkey. side effects of stopping have been rough. NOW my hair thinning, bone and joint pain. don't understand why I have side effects NOW. lumpectomy and radiation only.

TJinNC

The side effects you describe are what I experience now, nearly 2.5 years in! No words really. I thought most of the SE would go away. Giant sigh.

63yearsyoung

I have been on Letrozole for about six months. Just lately, I have had terrible pain and stiffness in my hands. I also have body aches, especially at night. My hips have been bothering me at times as well. A little history of my meds post mastectomy: after going off of Tamoxifen (took for 3 years) due to uterine fibroids and a D&C, I took Anastrozole (Arimidex) for 3 months. I was having what seemed to be muscle and joint pain so my oncologist told me to stop the drug for one month. After doing so I felt much better. Then last November she changed my med to Letrozole. Since I have been having such pain as described above, I decided to go to my GP for an eval. She ordered a blood test for rheumatoid arthritis. She said she didn't think it could be a result of a medicine. Anyone else having such pain and discomfort?

Betrayal

I have been on Letrozole for just over 2 years after an unsuccessful attempt at Arimidex for 10 months. The side effects of Arimidex were so awful I had to stop it and my Dexa Scan after 10 months on Arimidex showed significant bone loss but it was still read as "normal". The one from 2 years previous was normal with no bone loss.

While the side effects on Letrozole are less, I am still having significant joint pain in my back, hands, hips, feet and knees and left achilles tendonitis. I have fine hair but it has always been thick until the AI's. Since I went on Letrozole I have significant hair loss which is distressing because my MO makes light of it and fails to recognize the importance to me. She told me I could get a wig! I don't think I qualify for financial assistance for a wig because I did not have chemo. I am taking Biotin to try to stop the hair loss but can honestly say I have not noted any decrease. I have gained weight which I cannot get off. I had a recurrence of bilateral carpal tunnel symptoms which woke me at night and despite having corrective surgery previously on both hands. The EMG on my hands demonstrated return of the carpal tunnel in my right hand and 3 fingers were literally nonfunctional. The function was so poor I could no longer grasp a pen or other items so my penmanship has deteriorated to the point my signature looked like that of someone else. It got so bad my rheumatologist finally injected my palm and I am now able to write but not as well as before. I have been offered a switch to Tamoxifen and exemestane but declined due to the fact that my experience so far has been a living Murphy's law. If it can go wrong, I have been privileged to have the experience. I am concerned about the side effects of these drugs so I will suffer through. I was asked if I wanted a month reprieve from the Letrozole but I told the MO if I stop, I most likely will not resume it.

Prior to my BC diagnosis I was on 3 meds: a PPI , a statin and allegra. Now due to the side effects of Letrozole I take Calcium with Vitamin D and supplemental Vitamin D for bone health, Pentoxifylline and vitamin E for side effects from Radiation, Biotin, Vitamin B 12, Prazosin for treatment related nightmares and a stool softener because all these meds cause constipation. I will have a Dexa Scan this month and am dreading what this has done to my bones in the last 2 years. I hate this disease. It was not only destructive of my breast but also took its toll on other body systems.

dtad

63yearsyoung...IMO aromatase inhibitors can definitely cause your symptoms. Joint pain and joint damage are a fairly common side effect. Maybe switching to another aromatase inhibitor would help. Good luck and keep us posted.

Fairchild

I've been very fortunate. I have virtually no side effects at all from taking letrozole. I'm just glad this medicine can reduce the changes of the cancer coming back.

CRuthD2018

I am 1 year using Letrozole 2.5> For the past month my finger joints have begun locking. I have to manually open them up. Now they are becoming painful. My oncologist said it is a side effect of the drug. My question to all of you sharing people is, does this symptom go away in time or does it progressively get worse? 

Thanks for your input.

Artista964

From day 1 letrozole 2.5 affected me from head to toe. The aches, pains, fuzzy foggy head. Mo convinced me to give it a chance, maybe ses will become bearable. After 5 miserable weeks in feb 2017, I quit. Since I'm high risk, I went back on Tamoxifen. Mo said AIs give like 2 to 4 % more protection IF it works. Letrozole (femara) and arimidix (sp?) are similar so the 3rd one anestr (forget the name) would be the other one to try when I asked about the other 2.

I do well on Tamoxifen. Not the ideal for post menopause but it's something.

Artista964

My finger joints was stiff and painful. Since I quit after 5 weeks I sometimes experience it. Hard to say if when you stop it all goes away. Maybe with time but logically I would guess less of a chance the longer it goes. Everyone is different. Some recover fully some not.

truedukeblue

I've been on letrozole for a year now. I've noticed some pain in my right leg and recently started having some coccyx pain. I imagine it's from the medication. However, it isn't too bad, just annoying. I try and get out and walk when I can -- when it isn't too hot and humid -- and that seems to help. Also, I try to limit gluten in my diet -- that seems to help improve the joint pain. I even wear one of those knee braces and that seems to to support my leg and help with the pain. My calcium and vitamin D levels are good. I have an appointment with my docs in a couple of months and will talk to them at that time about the pain, sooner if worse, although it doesn't seem to be getting worse at this point. Other than that, I'm doing pretty well and feel grateful this is the only issues I'm having so far!

wintersocks

I have been on Letrozole nearly 7 years, my only real side effect is thinning hair.

Moderators

Welcome, truedukeblue! We're so glad you've joined us here, and hope you find this community to be a source of support as you continue with your treatment!

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1stronglady

Betrayal I have the same side effects! I could have written your post! My oncologist also offered for me to take a break but I also refused for the same reason! If I felt better I most certainly would not get back on it! My hands hurt so bad they wake me up at night. Pain and tingling. Actually every joint in my body hurts! I feel like I'm 100 years old!!! I am going to ask to be tested for rheumatoid arthritis.

Betrayal

1stronglady:

Thanks for your response. As much as I hate to hear that we share the same side effects, it is nice to know that, "misery loves company" as they say. I am right hand dominant and have limited hand movement now. I can barely hold a utensil and cannot make a fist. Some alien is now writing my signature since it bears no resemblance to it from a year ago; holding a pen is a challenge.

I have osteoarthritis and was worked up for rheumatoid arthritis but the tests were negative. However, I have a family hx of psoriatic arthritis and recently tested positive for this. This is all after BC dx. I should explore if there is a relationship between this and femara. I will ask my rheumatologist when I see her this week.

I was initially on arimidex but had to quit after 10 months due to unbearable pain, depression, anger, etc. and changes in dexascan; bone loss was appreciable but still considered "normal" since it was less than 10%! Dexascan this year again shows bone loss but still within "normal limits (3%)" and I have not discussed this one with MO yet.

I am not up to trying another AI or Tamoxifen and I am just trying to make the 5 years. Data on these drugs on ILC is not conclusive and MO thinks if I have a recurrence, it will be ILC not IDC. So I am counting down the days and it is still over 2 years to go.

I will most likely have hand injected again so I can get some function back before I return to work but do not know how often hand can be injected. Do follow-up on diagnostic tests for rheumatoid arthritis. Hugs.

Prairietwin2

Mine was bad for a while. My right thumb locked and I have had quite a bit of bone Pain especially in the shoulders. After 2 1/2 years it is much better

Tewks

Good Morning everyone, I’m new to this group here and have been reading through all the comments about your various SEs with Femara but haven’t seen anything similar to what I’m going through In December 2019 I will reach 3 years on F and up until recently I have been very fortunate to have only occasional hip joint pain, which I can easily control with Motrin.
Over the past few months, however, I’m more sensitive to heat and cold and find myself wearing a sweatshirt or extra layer when everyone else around me is complaining about the heat. Another sensation is having a “chill flash,” meaning my skin is very tingly, especially on my back. My back feels sweaty and itchy but my skin is dry and there’s. O rash or redness of any kind, just an itchy/stinging feeling. Is this a hot flash? I never had a single menopause symptom so I have zero experience to draw on in that department...sounds like a dumb question, I know.
Bottom line: does Femara cause chills/itching/stinging like this for anyone else? And how could I have zero side effects for so long and then have this happen? Or maybe it’s something else?
Thanks Ladies!

1stronglady

Betrayal, In the mornings I have to use one hand to bend the fingers on the other hand. They are very painful. After a while they feel better but the pain never goes away. Did your oncologist refer you to a rheumatologist? My Dexa scan showed I am at moderate risk for fracture. Haven't spoken to my oncologist yet. Nurses at chemo told me to start taking a calcium vitamin D supplement. I am working full time and drag myself home every afternoon. I am exhausted.

Betrayal

1stronglady:

I saw a rheumatologist for over 10 years and loved her until she told me that I had "the best type of BC" and then proceeded to tell me a horror story about a family member who died from BC! She did not spare any details and failed to notice my horrified face. I was shocked into speechlessness and could not wait to leave the office. I was supposed to schedule a follow-up appointment but walked right out and never looked back. As far as I was concerned there is "no best type of BC" since none of us can predict what the final outcome will be. I think we all live on a wing and a prayer that it will not return.

The MO had nothing to offer but OTC NSAID's which I cannot take and would just shrug the shoulders while telling me it was a SE of the drug. Yes, I know that but what do you have to offer? Nada. Empathy doesn't cut it and when I called to tell them I had a recurrence of bilateral carpal tunnel after having bilateral surgical releases ages ago, the office nurse told me that "this could not be related to the Femara". I told her I had the documentation from EMG's and that she needed to brush up on the SE's. The wrists remain quiet for the moment.

My MO did offer a referral to a rheumatologist in network but it was 8 months to get an appointment for a new patient if I wanted that MD. If I would see a partner, it would be a 4 month wait. However, they had limited office hour availability for working patients so I asked my DO for a referral. She gave me a name and it was the same story: 6 months wait. So that's when I let my fingers do the walking and I had an appointment in less than 2 weeks and I really like the one I am seeing now.

On awakening, my right hand is essentially a claw and it takes a good 30 minutes or more to loosen it up using my left hand and stretches. I get some movement but no relief from the pain. I can no longer wear a ring on the right hand due to finger swelling and trigger fingers. I had one injection several months ago but do not know if I qualify for another yet. I will see the rheumatologist this week for answers. Hope she can give me a functional hand before I return to work in a few weeks.

See if you can get a referral from the MO or your PCP. Get someone to check your vitamin D levels as well. My RO never ordered it but my DO did and it was low. So then the RO got involved and set the lower limit for the Vitamin D level with my DO. So I take Calcium with D (Citracal) and additional Vitamin D daily. Need a repeat to check the levels in the fall.

1stronglady

betrayal, thank you so much for the info!! I get the same response from my oncologist when I complain about the pain. I have an appointment with my PCP on August 23. Hopefully he will point me in the right direction! I hope your rheumatologist can give you some relief! Take care!!!

Prairietwin2

I also have a raspy voice. Been on Letrozole 2 1/2 yrs.

twophillips

well, I’m new here. After reading many of the comments i to feel misery love company 😍. I’m fighting g horrid neuropathy. After reading many of your comments I feel I’m not Alone with all the hand pain. Evenings are the worst. I’m on letrozole 2.5 mg. Almost 5 yeas. I’m hoping I get off in June. My cancer was stage 3,lobular carcenoma. The side effects from the next is rough. I have gained back 30 of the 50 pounds I lost. My mid section looks like I’m 7 months pregnant. I exercise, eat very healthy and stay moving. I’m on 100 mg of Gabapentin. I was up to 1800 mg. I needed to get off of it. I’m managing my pain with CBD oil. While I’m not wishing this demon on anyone I’m also glad I’m not alone. Does anyone else have this horrid neuropathy