FEMARA
Comments
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Thank you honeybair. I am on my 10th month of letrozole and I can say I am feeling better than couple months ago. I checked my medication and it is made in India. I wonder if there is any difference on where meds are made.
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Lillyishere: I had a lumpectomy followed by radiation for a very small area of IDC.
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quinnie, why were you recommended AI? My MO told me if I was node negative, I woudn't be recommended letrozole.
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The standard of care for ER/PR + breast cancer is an AL or Tamaxofin. I'm not sure why your MO would say that. If you look at the history on this thread, many of us are node negative and on AL's. Believe me I wish that were the case. I'm not fond of taking this.
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quinne, my previous MO told me that with my case of small cancer (3mm) in the breast, if I didn't have positive nodes, I could have skipped anti-hormonal treatments. Or I would have benefited less than 2%. Since I am node positive she recommended letrozole that got carried to other MO. I guess depends what is the recurrence rate for each individual. If your read Femara's disclosure, other than the usual side effects, can cause another type of cancer so I guess each of us weights the risks. https://www.femara.com/
The most serious side effects seen with FEMARA are bone effects (fractures, decreased bone density and osteoporosis) and increases in cholesterol. Other common side effects seen with FEMARA include joint pain, nausea, weight decrease, vaginal irritation, and pain in the extremities. Other important less commonly reported side effects include blood clots, other cancers, stroke, heart attack and endometrial cancer.
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My tumor was near 1 cm so maybe that is why my MO recommended an AL. I am being monitored in my cholesterol and bone density throughout the treatment. So far so good. I do have osteopenia so have increased calcium, vit D and weight bearing exercise.
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Lilly, if I understand correctly, your MO was saying that with a 3mm tumor and no nodal involvement, no anti-hormone therapy would be necessary. That's reasonable because with that diagnosis, your risk from the cancer would be quite low. But that recommendation was specific to your situation; it wasn't a generalized recommendation for anyone who is node negative. Once it was discovered that you had a positive node, your MO's recommendation changed and he advised that you take Femara. I would expect that even if you had remained node negative, but if the tumor was just slightly larger, 5mm or 6mm, for example, Femara would have been recommended. So the original thought that you could skip anti-hormone therapy wasn't just because you were node negative, but was because your tumor was so small. Most women with tumors that are 5mm or larger do go onto either Tamoxifen or an AI, even if node negative.
As an FYI, here are the NCCN treatment guidelines for node negative, ER+, HER2-:
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Thank you Beesie. I was talking about my case only. In case someone else has a very small tumor and node negative and is having hard time with AI, maybe can ask their MO.
quinne, I am on my 10th month of letrozole and I didn't have my cholesterol checked since last summer before my diagnose. I did insist to check my bones before starting letrozole and they were normal but I assume they may have problems during letrozole. Who knows! My PCP or MO don't like to do any scans and they get even bothered when I ask questions.
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Ive only been on this medication a little over a month..and I AM MISERABLE....I have gained about 10 lbs., I am tired all the time and have to nap quite often and the first time I took it during the day...I had horrible mood swings during the day...I thought I needed to go be commited...ugh...
And I have horrible memory problems....I CRS...(cant remember S H I---).....and I looked at the side effects of this med and it can increase cholesterol levels...and I already have calcifications of a main artery...I am getting off this med and going back to Aramidex.....what was my oncologist thinking...OMG...I am miserable!
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mircann, why were you switched from Arimidex? We're you having bad side effects? I'm losing function of my arms and feet. And insomnia.
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Hi! I’ve been on Femara for 11 months now. Aside from a lot of stiffness , has anyone experienced tailbone pain? I’ve been been having on and off pain in the tail bone and left butt area which sometimes radiates down my thigh.
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Francesca30...I am not sure about your tailbone, but the pain that runs from your butt to your thigh sounds like sciatica. Look it up and see if that sounds like what you are experiencing. I have developed it since being on Letrozole, but have found moving and not sitting too long helps.
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JRNJ- I got off Aramidex due to joint pain....but after all these side effects, Im gonna ask my onc to put me back on Aramidex...
At least with the Aramidex..I didnt gain weight and was tired all the time..and these hot flashes with Femara last alot longer then when I was on Aramidex...ugh😖
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Happy Monday Ladies! Barely woke up this morning from a cricket who made it inside the house last night and has been non-stop until 2 am. LOL!
I feel that taking the letrozole at night is working better for me. In 3 hours I feel some hot flashes. A nurse told me between 2-4 hours after taking the medication most people feel hot flashes. The rest of them may be milder and I don't feel since I am asleep.
Mircann, how many years have you been in AI? From your signature, it seems that you had surgery 5 years ago.
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I saw my PCP about the ringing in my ears. He also has cancer - Multiple Myeloma - and has ringing in his ears. No sign of anything wrong with my ears and I am to discuss this with my MO. PCP said many drugs to treat cancer can cause tinnitus. Hopefully, if it is from letrozole, it will go away like the joint pain and stiffness did. I only have occasional hotflashes - they are very intense, but don't last long. I am handling letrozole - I cannot take anastrozole - I had such dizziness that I could not move off the bed. The only one left is exemestane.
Right now I am using masking when the ringing becomes unbearable. Always seems to be something!
Annie
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Annie60....In reading your issues with tinnitus it makes me wonder about vertigo. I have noticed over the last week or so that sometimes I just get dizzy for apparently no reason. The first time it happened it was very bad and I had to stay in bed. Since then it has happened for just brief moments (less than 3 min) and isn't as bad. I never thought to relate it to letrozole, but I wonder. The stiffness and pain went away after about a month (yoga helps so much) so if this is related to letrozole I hope it goes away too. I will just monitor and mention it to my MO when I see her in about a month.
I do hope the tinnitus goes away! My gosh we deal with enough without adding additional nonsense to the pile. Also, what is masking that you are using to help the ringing? I feel like I should know but I have no clue (I may have missed a post if you mentioned it before, if so, i am sorry).
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I had dizziness - debilitating on anastrozole. It was the reason I switched to letrozole. I could not leave my bed. I had some dizziness on letrozole to begin with, but it has resolved.
For masking, I am using white noise, fans, and music. I love music,so that is helping a lot. I just bought a head band that has bluetooth to be use at night and a sound machine. The tinnitus is so loud at times, I can't hear the TV or sleep.
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Annie, have you tried acupuncture? It may help. It is important to find a good acupunturist.
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LillyisHere - I have not. I"ve thought about it but I am not sure how to tell if someone is good or not.
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Annie, most of the large hospitals have their Integrative Therapies. In case you don't go to one, I would start by asking a nurse for recommendations for an acupuncturist that is specialized in cancer patients. I hope you are feeling better these days.
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I'm not sure if this is the right place to ask this, but has anyone split their Femara tablet to be able to take a lower daily dose? Or do you just take it every other or every 3 rd day to lower dose? I told my MO that I want to start on a lower dose and ramp up if I tolerate it well. It seems like splitting is the easiest method but... not all meds work properly if they are split. Thanks for any info you ladies have.
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I just take my femara every other day. I think it would be too hard to split it.
I’d be interested to know if anyone is taking it every third day. I know it has a long half life but I’m wondering if any of your doctors have approved the every third day regiment. That would be even better for the side effects. Since I’m stage IV I’m a little hesitant to even ask my MO about it. Any thoughts?Faith (in the future).
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Under Femara website, it does say for people with liver issues can take Femara every other day but it doesn't say to cut in half. Here is what is on their website:
FEMARA is a once-daily, convenient prescription tablet. Your doctor may tell you to take FEMARA every other day if you have severe liver disease. Always take your medicine exactly as prescribed by your doctor.
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I'm not on Femara, I've tryed Aromasin and I'm on Arimidex every other day. I read on other threads not to split the dose for the AIs because it won't be as effective as full dose every other day. My Dr. also told me to try every other day, and I didn't ask why he chose that because I had already read about it.
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Does the every other day help with the side effects? I'm doing OK on it, but fatigue is a problem, depression and my hip really hurts most days.
That doesn't sound OK but it is so much better that I was on month 4-6.
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Thank you everyone, it sounds like I should try every other day. I said "I can split the pill" in front of my dr and he didn't say don't do that, but he also had that expression that said "oh no, another know it all patient who isn't going to follow directions" on his face. Don't get me wrong, he was very pleasant and willing to answer questions, but his expression said it all. I kind of got on a bandwagon about this whole one size fits all treatment dosage, everybody gets the same dose and how I think that is not good medicine so I may have offended him.
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I’m hoping to get more information from anyone with more experience with side effects. I’ve been on Femara for just over 2 weeks, I’ve been having low level nausea most of the day every day, about every third day I have diarrhea, today it has been particularly bad, and starting yesterday I have lower back pain. I have been back to work full time for about a month, and have fatigue, but I’m guessing I’m just building my strength back. I’m exercising for about an hour most days, and these symptoms haven’t stopped that...I had a single mastectomy with autologous reconstruction 2 1/2 months ago, no infusion chemo this time. 13 years ago I had lumpectomy, infusion chemo, rads then 7 years of Lupron and Arimidex.
I know I’m being a bit hyper vigilant about my body, but I’m wondering, have you experienced these kinds of side effects so soon after starting? I have a great relationship with my MO and her team, but getting info from others who have gone before me carries a bit more weight. If you had these early side effects, did some (or all) of them resolve over time or shift? Any information would be helpful0 -
I was told by my doctor that fatigue is a typical complaint from letrozole users. I do feel my energy goes up and down during the day and I am not exercising as much as before. I guess it is something we will live with.
Annie, my hip ( and neck, elbow, knee) hurts as well and I went for a massage to someone who is specialized with cancer patients. She checked my hip and neck and said there is no problem with the joints but the muscles. She was a magic masseuse. Also, she recommended using a tennis ball and to use it for a massage at home. Annie, give it a try with a massage and you may feel better. Once we have the breast surgery, our body posture changes and some muscles get more tension than others. For me is difficult to figure out if it is joint pain or muscles around it.
KaraInLa, what time of the day do you take letrozole? One of our sisters recommended to take it at night time before bed and that's what I have been doing. At least I don't feel most of the side effects that come within the first few hours because I am sleeping. Just a thought, if you can move it to bedtime and see if you won't feel nauseous. Others may have other ideas or similar experiences. My MO told me it takes 4-5 months for the body to get used to letrozole. I think it takes longer than that. Maybe your body is recovering and having an hour of exercise + work every day may be too much. I hope it will get better soon.
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Hi KarainLA. I was on Letrozole and experienced the same nausea until I diligently took it right after eating. That shift solved it for me. I wasn't happy with the weight gain and joint pain so I went off for a week or two and now have been on Arimidex for about six weeks. The main side effects seem worse, plus hair loss, on Arimidex. I'm now trying to figure out what to do next. I'm wondering half dose--one pill every other day--going back to Letrozole or on the third AI option, Exemestane (Aromasin).
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