FEMARA
Comments
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Peregrinelady - I have muscle pain from letrozole, mostly in my hands and fingers. I’ve developed trigger finger (which I’ll probably get injected if Volteren Gel doesn’t help) and wear wrist braces on both wrists at night. I also have a stiff neck in the morning. Nothing debilitating, just annoying at times. Staying active helps
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Nsbrown, it is interesting to me how the 3 AI’s affect people differently. The muscle pain was more than annoying for me and quite painful at times, especially when I reached for something. One time I tripped and the pain in my arm made me gasp. It has not happened at all since I switched back to Anastrozole. I hope your wrist issues resolve. Sometimes side effects will go away after a while on the drugs.0
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Nsbrown5, about the stiff neck, try online stretches from Sarah Beth (10 minute MOBILITY Yoga for Neck & Shoulder Relief | Sarah Beth Yoga). It helps a lot.
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Thanks LilyIsHere! I’ll check it out.
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Peregrinelady: I have so much pain in my arms and legs since starting AIs in June, I often don't know if it is muscle, joint or bone. I thnk it is mostly join pain from inflammation, I feel swollen and my arms go numb at night. I've been on 4 AIs now, including name brand Arimidex. But it appears to me I experienced bad muscle pain in my arms below the elbows a week after getting my ovaries out, while on Arimidex, but on a 2 week break from it. I couldn't even pick up the water pitcher with one hand. My arms just got worse as I continued the Arimidex. Now on letrozole for 4 weeks. My pains are getting a little worse each day, but so far not as bad as the Arimidex, especially in my arms. I wish I could talk to a Dr. who actually cared and wanted to discuss all the weird variables. I wonder if it is the loss of testosterone after getting my ovaries out.
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JRNJ - From what I’ve read, the lack of estrogen can cause joint pain. I think this is true for most of the AIs. I’ve been seeing my orthopedic doctor to help come up with solutions to deal with some of my pain in my hands and hip. Tylenol and staying active seems to help me. I hope you’re abl to get some relief.
https://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/femara
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Love Sarah Beth yoga on youtube!!! Something for everybody. Really helps to stretch daily.
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Nash54, I got Sarah Beth's name from you
. Thank you! My neck feels so much better.Ladies, do you know what are the long-term side effects of letrozole and other AI? Under the Femara website, it says it causes secondary cancer. What else? Alzheimer?
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LillyIsHere - Yikes! I wonder what they consider long term use that can cause these adverse side effects? I’m already experiencing irritating side effects and I’ve only been on letrozole since early December.
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Nsbrown54, not to scare you but honestly, I am nervous about this myself. If we survived breast cancer, are we opening the door to another one? On the other hand, as SE of letrozole go, it gets worst before it gets better. At least this is my experience. Hang in there, after 7 months you'll start having more good days than bad days.
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Thanks LillyIsHere. Right now, I hate letrozole, but anticipate my SE will improve. I have an aunt who is a 2x BC survivor. She took Femara at least 15 years ago and has had no reoccurrence of BC
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Hello to all, I never heard from you all about other SE's. My cholesterol, lipids etc have increased significantly since adding Letrozole. Now my BP is way too high. These were never a problem post letrozole. Anyone else experienced this?
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Nsbrown5, so good to hear about your aunt. Any success story from another member of BC club makes me happy and gives us hope.
Quinnie, cholesterol, BP, lipids, etc are on the top list of SE of letrozole. So far I have been spared from these SE but I still have pains and stiffness on tendons and ligaments.
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Good morning All,
How long do you all usually break between changing AIs? I will be going back to Arimidex. The oncologist says I don't have to wait. That has always seemed odd to me, so the least amount of time I have waited was seven days before starting a different AI.
The dizziness from Arimidex was not completely resolved, but did lessen. However, the SEs from Letrozole are more than annoying. This week joint, bone, and muscle pain went crazy in my body. Not so dizzy.... but I need to walk LOL 😂BTW I'm so grateful for all of you.
Humblepeace
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Humblepeace, I haven't changed AI but last year at this time, I had enough of letrozole and I asked my MO if I can change it. He said I need a break of 6 weeks to get it letrozole out of my system before starting a new one. I decided not to change it. I am still in letrozole. Someone else who has gone through this path can give you more info. I wonder why different MO have different standards when it comes to some basic advises like this one. Good luck!
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Hi, all, bonniecna here, newly diagnosed with invasive (6 mm) dcis after my surg onc did a lumpectomy, (she never checked my lymph nodes).I started taking Letrozole on January 29, followed by radiation treatments from March 1 thru March31. 2 weeks after radiation started, I started getting crazy mood swings, insomnia, and depression, crying over everything and nothing!. My primary care doctor prescribed Xanax, and Zoloft. I don't know if my symptoms were from the Letrozole or the radiation (or both!). I continued going to work in the Majestic Athletic Warehouse as I have every day for the last 21 years because I truly needed that distraction. I am feeling a bit better now that I'm done with radiation. Another thing I'm concerned about that I haven't found in this thread, is that I have pre-existing degenerative disc disease, fibromyalgia and osteoarthritis(I'm a pretty young 71 yr old). I take tramadol, 100 mg 3XDay, as well as diclofenac (anti-inflammatory)twice a day, along with nightly muscle relaxer and blood pressure meds.I'm really concerned about my pain increasing even more as a side effect of the Letrozole. I'll be discussing all of this with my medical oncologist and hope for more guidance. Now that the weather is warming up here in Northeast Pa, I hope to get more outdoor exercise. Thanks for letting me share. God bless you all.
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Hi bonniecna - keeping active definitely helps manage the aches and pains caused by letrozole. Have you seen an orthopedic surgeon for some of your aches and pains? I’ve had cortisone injects (before BC diagnosis) for lower back issues (caused by spinal stenosis and degenerative disc disease). I take hydroxychloroquinine (RX from my rheumatologist) for my autoimmune issues. It was helping my aches and pains prior to the starting letrozole. I’ve been seeing my orthopedic surgeon to help with pain in my hands and hip. I hope you feel better
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bonniecna- I’m sorry that you are having these issues. You have joined a forum where the members are supportive and very kind. The women here are also so full of knowledge, if one doesn’t have the answer or experience another will. However, at the forefront it is ALWAYS recommended that speak with our medical team.
So, from what I experienced when first started hormone therapy I did have increased anxiety which was very odd for me. Thank God, it did not continue for past a few weeks. Though I do have that same SE on Letrozole which I have been taking for almost two months....another reason I’m going back to Arimidex.
It’s good that you get daily exercise. Exercise tends to help many of these SE. I wish I could exercise more but dizziness and pain has kept me from feeling confident enough to be out too long on my own to walk my neighborhood. Most people do experience SE that will disappear after some time. So hopefully that will be your case.
Humblepeace
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Nsbrown and humblepeace, thank you for responding to my (quite lengthy) post.
It's 19 days since I finished my radiation treatment and my depression and anxiety seem to have lifted quite a bit. I'll be seeing my primary doc tomorrow after work. He's a great guy and it'll be easy to share with him. I've made a list of the SE of the Letrozole and will ask him how we're supposed to handle them. He's the main doc who's prescribed all my meds(pain, cholesterol, bp, thyroid, anxiety and depression) except the AI. I'd rather not have to deal with more specialists besides my Oncology docs.
I'll be seeing the surgeon and medical oncologist on Friday for my first follow-up. Lots of questions written down for them.
Results of my Dexa scan showed that I've lost some density (since 2017) but am still osteopenic so I praise God for that. All my CMP results are within normal limits, again thanks be to God.
I also thank God for you all. I'm so happy to have found you and although I won't be posting too often, you will not be out of my thoughts and prayers 🙏🙏. God Bless you.
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bonniecn, I am sorry you are in our group with SE from letrozole. I also had mood swings and still have insomnia from letrozole, not before letrozole era. One thing you can ask your doctor is Zometa, not only strengthens the bones but also has some small benefits to reduce recurrence risk. For the second reason, I am having Zometa infusions every 6 months. Let us know what does your doctor thinks.
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LillyisHere, thank you but I'm grateful that I found y'all.
I'll check with him about Zometa, but I have a feeling that my insurance may want me on something cheaper, than an infusion, to start with. I did take fosamax years ago but I would prefer am injection or infusion. We shall see what he thinks as well. Rest well tonight 😴😴😴
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I've been on letrozole since mid Dec and just in past few weeks have noticed more night sweats. Is it normal for it to take this long for side effects to appear?
I need to discuss with my MO whether these are hormonal night sweats or cancer mets night sweats.
Want to hear your experiences about duration of time before SEs of letrozole appeared.
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@moth....I was on Letrozole for months before the night sweats got unbearable. So your timeline sounds about right. Once mine kicked up they kept ramping up until I truly felt like a moldy loaf of bread by morning. They kept me up and became unbearable. My MO put me on Neurontin (300mg at bedtime...though I need to take it about 3 hours before bed for best results) for them. That has worked like a charm and I now stay dry while at night.
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@cm2020 - thank you for the reply. I'm sorry you suffered this too but actually relieved to hear your report. Last time I had such bad night sweats my cancer was not controlled & spreading like wildfire. I'm already on Neurontin for neuropathy pain since last summer. I might ask about a slight dose increase if these sweats continue to see if that controls it. If nothing else, the laundry gets annoying lol
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@moth....What time of day do you take your Neurontin? My MO specifically said to take it at bedtime. She said I am on a very low dose and may need to go up, but luckily this dose works well (of course now I have jinxed it!). Were I not on Letrozole I would be terrified that I had cancer (you know what I mean) because truly I could have easily squeezed sweat out of my pajamas and pillow case. It was disgusting. Do talk to your MO. There is no reason to be this miserable. Also, my MO offered several different drug options that work well for night hot flashes so a different drug may work better for you. Good Luck....you have more than enough going on without dealing with this sweaty mess.
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I have been taking Femara for 14 months now and while night sweats haven't been a huge problem for me, I have noticed lately that both the hot flashes and night sweats have increased in frequency and intensity, so I think it is possible for side effects to change or emerge over time. I also think my hair might be starting to thin. If this is true, that too is a later developing side effect.
Interesting to me though, is how all of these things came on shortly after my last (2nd) Covid shot. I can't help wondering if that had anything to do with it. They say the vaccine creates an inflammatory response in your body, and I've never been quite the same since that 2nd shot and it's been almost 3 weeks.
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cm2020 - I take 300mg twice a day so day & evening. I might need to increase my evening dose maybe...
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Moth, I started letrozole on Dec. 1, 2019, and in 6 months, May 2020 the side effects start kicking in. I remember I would go to bed dressing warm and I would wake up naked after removing layers throughout the night
. I have been doing acupuncture for a while now and I feel it is controlling hot flashes and I feel much better. I still believe that the peek of letrozole's SE is in 6 months or so. 0 -
LillyIsHere, thank you for your comment. That is super interesting. Makes sense as hormones do take a while to get themselves all sorted out. Ugh, I hope mine doesn't keep getting worse. It doesn't help that we have a weird warm spell right now but I can't open windows as I have horrible seasonal allergies (possibly exacerbated this year by the immunotherapy I'm on).
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