FEMARA
Comments
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Lillian - you've been through a lot in a year. It may not be the AI's but just all the emotional and physical stress. Be gentle with yourself. But...you might try switching the time you are taking the meds. It doesn't seem to matter the time but being consistent does. I take mine first thing in the morning with my thyroid meds but others have reported feeling better with a little food in the tank. Have you tried taking a short walk when you feel most drowsy? Good luck.
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When I started Letrozole my onco looked at my hands and said" I see you have some arthritis, this will make it worse!
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Joining in & have lots of questions. MO has been trying to get me to switch from Tamoxifen for more than a year now. Had to go off Tamox for 6 weeks due to last surgery but am hesitant to start Femara immediately. I am exhausted already from working 11-12 hour days since returning to work and can't afford additional side effects right now.
Also can't eat much since before last surgery. Guessing stress but don't want to regain the 10 lbs I lost.
Work will ease the end of September and that would be the best time to start. What side effects can I except?
Thanks
Scottie
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Scottiemom,We all feel for you. Below is the published list they admit to, but probably others could add to it. I think I have experienced most of them, but not at the same time. Everyone will have different experiences. On the upside, it does seem to be very effective at keeping HR+ under control. Hope it works out for you.
- hot flashes,
- warmth in your face or chest,
- hair loss,
- joint/bone/muscle pain,
- tiredness,
- unusual sweating or night sweats,
- nausea,
- diarrhea,
- dizziness,
- trouble sleeping,
- drowsiness,
- weight gain,
- weakness,
- flushing (warmth, redness, or tingly feeling),
- headache,
- constipation,
- numbness/tingling/weakness/stiffness in your hand or fingers, or
- pain in your hand that spreads to your arm, wrist, forearm, or shoulder.
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I've been on letrozole for 1.5 years. Two years ago, I had my first bone density test: normal, healthy bones. Just had my first bone scan since starting letrozole: I now have osteopenia. I am active, eat a calcium rich diet, and have been taking Vitamin D but not calcium supplements (why my onc never suggested them, I can't guess). So now they want to put me on a drug to stop bone loss. Great, one more drug.
I'm not trying to scare anyone. But I wish someone had talked to me about how quickly bone loss can happen, and told me that maybe diet wasn't enough. Supposedly drugs can stop and even reverse some of the bone loss, so it's not all doom and gloom. I'm an active person, though, and this SE has scared me.
I have a total of 3 years hormonal treatment, tamoxifen and letrozole combined. This may do it for me. Up to now I've been scared enough of recurrence to try and stick with hormonal therapy, but at what cost to other aspects of my health? Weary of it all.
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I was diagnosed last year and am now on Letrozole (for a little over a year so far). It'll be part of my life for another 4-9 years. I'll share my bone-info just for general information, knowing that each of us is totally unique. When my MO prescribed the Letrozole, he ran a number of tests including a current DEXA Scan. I'd previously had "osteopenia" but the scan showed that I had osteoporosis - damn. Anyway, he was entirely up front about all the possible side effects (which are similar to to the other AI side effects as I understand it) including bone loss. My MO took the proactive steps of putting me on a twice-a-year Prolia shot and increased my dosage of calcium and vitamin D. He and his nutritionist/dietician and I discussed and fine-tuned my eating plan. (I was already largely plant-based but am now ENTIRELY whole-foods-plant-based.) We also discussed at length my physical training - I do something every day and am religious about that because resistance/weight-bearing exercise can rebuilt bone.
Side note: I had battled pre-diabetes and high cholesterol previous to the cancer diagnosis and switching to a largely plant-based diet had REVERSED both; my A1C and my cholesterol - both normal!
Fast forward to this year and my labs and bone scan following 12 months on Letrozole which can raise A1C (diabetes), raise cholesterol, increase weight AND destroy bone density. EVERYTHING held steady or improved over the course of the year and my T-scores on my DEXA Scan were IMPROVED. Also my weight - which had dropped after I initially went partially-plant-based, has stayed down and I'm at a very normal weight and BMI.
My doctors and I attribute this holding-steady/improvement-in-spite-of-Letrozole to 3 things: my truly plant-based way of life (I get PLENTY of calcium and protein plus everything else from the plant-based foods I eat); my regular and varied exercise; the Prolia shots.
Long story short: we have to be so proactive and if all it nets is "holding steady" that's a positive when our life-saving medication is working against us. Honestly, changing my eating - in conjunction with a dietician/nutritionist and lots of good research (science/medicine-based, not fad based) is the BEST thing to happen to me. I've never felt better.
See if your MO has a dietician/nutritionist or a "lifestyle medicine" specialist well-versed in the advantages of plant-based eating or at least eating for health on staff or maybe he/she can recommend one.
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Kiki13 - p.s. I will say that I count myself fortunate in that the Prolia has not caused me any perceptible side effects.
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I have a question for those of you suffering from horrible bone and joint pain from the Letrozole. Has anyone asked their oncologist to be tested/checked for rheumatoid arthritis?
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Hi Patsy, good to see you! Thanks for your posts - many good takeaways for me. I've calmed down about the bone scan results and am ready to tackle it, like everything else we do. You know, this just shows me you can't take your eye off the ball with ANY aspect of your health while on these drugs. I've been so focused on managing joint pain and hot flashes as naturally as possible, and because my bone density wasn't an issue before, it wasn't something I thought about.
It sounds like I will have to try Fosamax first. If I don't tolerate it well, then insurance will approve Prolia (thank you, insurance companies, for not letting us have the best option right out of the gate).
I am glad to hear you are doing so well, Patsy! The numbers do tell the story. I had a naturopathic doctor when I was first diagnosed, who worked in conjunction with my onc. She was wonderful on the lifestyle and diet issues, but is no longer in the area. Your suggestion for a dietician or lifestyle doc is a good one. We can only figure out so much on our own!
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I have been on Femara for 2 months after having an allergic reaction to Arimidex and thrombophelbitis with Tamoxifen. Fatigue and joint pain have begun. Does this improve with time? 5 years of this seems impossible. I experienced hair loss with Tamoxifen. Biotin helped with this but now I am concerned it is beginning again on Femara. I know I am fortunate that I am Stage 1 and others have much more serious problems than I.
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It seems everyone experiences different side effects. I tolerated Tamoxifen-generic well for 5 years. Oncologist switched me (1 year ago 5/18) to Arimidex-generic which I am supposed to take for 5 years. I immediately became severely fatigued and suffered joint pain, knees and hands.
She switched me to Femura- generic in 8/18. Recently my cholesterol sky rocketed to 340. That's 140 points over my cholesterol level the previous year. Yes, a side effect of Femura, but neither Onc or PCP think Femura is the reason??? Now I'm on a statin. 😕
My current issue is a cyst on the base of my thumb causing “trigger" thumb and a lot of pain. Another known side effect of Femura. 🙁 I'm am seeing a hand specialist in 2 weeks. He was booked for 3 weeks.
I'm beginning to wonder if it's not worth the side effects.
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I too wonder if it's worth it
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PatsyKB ~ Did your dr prescribe a calcium supplement or are taking one on your own? If so, would you share what it is? Osteoporosis is a great concern of mine as a side effect of Femura
Thank you!
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MAM56, thanks for asking your question. First, I’d strongly suggest talking to your oncologist or primary care physician about how to reduce the risk of osteoporosis and further bone loss - I’m very happy with my course of treatment but I didn’t make these choices all alone.
I was already taking a calcium supplement and vitamin D but when I went on Letrozole (generic Femara), my MO raised my dosages: Calcium 1500 mg (not all at once of course) and Vitamin D3 5000IU (again, not all at once). I take NatureMade Calcium with Vitamin D3 (600mg calcium/400IU Vit D3) twice a day. I take Kirkland Vitamin D3 2000IU (50mcg) twice a day. Those supplements in combination with the multivitamin I take (Centrum Silver for Women) PLUS my honestly excellent diet supply me with more than what I need in the way of calcium and D3.
Remember that I also have osteoporosis (newly diagnosed a year ago, before ever starting Letrozole) and that I am also on twice a year Prolia shots to counteract/reverse/stop that.
I work out daily, including weight training, yoga, flexibility, cardio, weight-bearing. And I eat a whole food plant based diet - I’ve transitioned over the past 3 years (before breast cancer) from MOSTLY plant-based to ALL plant based (no animal food or products).
My MO didn’t recommend any brand of supplement over any other and it’s not a prescription supplement and, to be honest, I try not to overthink things like that.
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HI 1stronglady - I can only speak for myself, but in my book, taking Letrozole - which is the only choice I have - is definitely worth the risks of side effects. I will admit to being fortunate so far but I am also taking every precaution: whole food plant based diet, rigorous and regular working out, increased calcium/vitamin D, Prolia shots for the bone loss, the whole shooting match.
If I didn’t have Letrozole (or any of the other AIs) to inhibit the estrogen in my body, I’d be screwed.
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PatsyKB~ Thank you so much for sharing your information with me. It certainly appears you are doing everything possible to combat the osteoporosis. You have a great attitude and I’m sure that also helps!
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If there is a pharmacy/pharmacist associated with your treatment center or MO, you can ask to speak directly with the pharmacist on questions about supplements, dosages, etc. They can also help with drug and supplement interaction info, and may know a bit more on these subjects than our MOs.
Lanne
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I have been on letrozole for a year and a half and have recently started having side effects in the last three months - thinning hair, lack of energy, and achy bones (which mat actually be arthritis). Also an occasional UTI. My MO also recommended vitamin D and calcium as he discovered osteoporosis from my bone density scan when I started taking letrozole. Also getting prolix infusions for bone loss every six months.
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I haven't had any side effects from Letrozole, but I have only been on it for four months. While I am very thankful that I don't have any side effects, at least none that I am aware of, it does make me skeptical that the drug is even working at all. Maybe "working" isn't the right term, perhaps more to the point is that I am obese and therefore have a whole lot more fat cells making estrogen than a normal weight woman. I don't care what anyone claims, one size fits all medications do not work the same on everyone. No medication does. Will it give a satisfactory result? Maybe, maybe not.
I take 600mg of calcium with Vitamin D twice a day with breakfast and dinner. Calcium is a fat soluble vitamin. Taking more than that at one time is a waste of time because the body can't absorb that much at one time.
I have no idea if Letrozole is hurting my bones, my next dexa scan isn't for another two years. I assume I would feel bone pain if it was hurting my bones.
I will only stay on it for 5 years. Given my age and normal life expectancy, I don't feel the point in taking it longer than that. It is possible that I will get side effects but they just haven't started yet. If that happens, I will go off it immediately. I am not changing from drug to drug. Again, for me it isn't worth it.
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Morning all! A couple of questions....I have been on Femara for 4.5 years. I think (?) I am experiencing some hair loss over the last few months...would it take that long tho? Perhaps just increasing as a combo of age (62) and no estrogen? Also I am planning on stopping Femara at 5 years, I figure the onco will try to get me to extend and I cannot see myself agreeing. How are you all handling this decision? My cancer was 1A, surgery and radiation, 11 nodes out all clear. My osteopenia which already existed has increased so I am on Prolia for the last 2 years, can this perhaps increase hair loss as well?
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I was supposed to swap from Tamoxifen to an AI when I had my hysterectomy but my BS suggested I stay on T because I was doing really well on it. He felt that the SEs from an AI outweighed the benefits which would have been a percentage point or two. So I stayed on T for my 5 years then was lucky enough to be able to stop it due to my BCI results. I'd say if you do well on T and your doc lets you stay on it, why not? My cancer was never really pinpointed as to stage. One doctor said 1B and one said 2A because my tumor was 2.0cm but only on one measurement. The rest were lower. I didn't have node involvement nor chemo or rads. So I'm considered "lower risk" for recurrence. Maybe that's why everyone was ok with my sticking with Tamoxifen. My BS said he loses more patients when swapping cause they quit meds altogether.
And as to calcium, I find it interesting the different ideas from doctors. All of mine asked that I not take it as a supplement because it tends to end up sticking to your arteries and actually causing heart problems. So I get mine from food and milk. Wonder if I should ask another doctor......
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cbaird99 - When I got to the 5 year mark my onco wanted me to go another 5. Did the BCI test and results said high risk and high likelihood of benefit. So I reluctantly agreed to stay on while I made my decision. After 6 1/2 years side effects were debilitating, took a month break then switched to anastrozole, with no improvement. I stopped at 7 years because my QOL was nil and the ASCO guidelines included 2 studies that showed 2 years extended treatment was just as good 5 years. One of those included those with high risk/benefit and no difference for them as well. So in my case (I'm not recommending this course of action for others) I felt comfortable stopping. I've been off now almost 3 months and side effects have improved a little, but I think it takes a while. The inflammation and swelling it causes in the sheath of the tendons has been there 7 years, so it makes sense it takes time to go away. (I hope it does). So maybe just take it a month at time past the 5 years and see what happens. See how you're doing and if more studies come out. By the way, I did not have hair loss.
edited to add: my bone density stayed the same.
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kiki13, besides talking to a nutritionist/dietician, do your own research using any of the outstanding books, websites, podcasts available - check credentials and stay away from anything fad-diet-ish or not supported by science and medicine. I'm constantly learning (vegan/plant-based podcasts are my current "ear-crack") . I strongly believe in traditional western medicine/science especially when it is augmented by the important lifestyle choices like plant-based diet (or at least MOSTLY, with no meat or poultry), reduction of stress, increased exercise, and strong social/friendship ties. Stay strong. Stay in touch!
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Lala1 and GrandmaV and anyone else,
Is the BCI -Breast Cancer Index test the same as the Oncotype test?
Did you have the test at the 5 year mark or when first diagnosed?
After 5 years of Tomoxifen (with no issues) and 1 year of letrozole (with many issues) I am contemplating stopping the meds. My oncologist has never mentioned the BCI when I ask about stopping.
GrandmaV- great news that your bone density stayed the same! 😊 Osteoporosis is one of my biggest concerns.
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MAM56 - I had the BCI test after 5 years. It's the main reason I continued 2 more years. The original tumor, or at least some of it, is sent to and tested by Biotheranostics. It is a different test from oncotype test.
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I am in my 8th year on Femara/Letrozole. Although I'd continued taking it after my 5th year, last year I decided I wanted to stop taking any meds I didn't really need. To see if this med fit in that group, my MO suggested I take the Prosigna assay. It is performed on preserved tissue that was removed during the original biopsy or surgery and looks at the activity of 58 genes (called the PAM50 gene signature) to estimate the risk of distant recurrence of hormone-receptor-positive breast cancer from 5 to 10 years after diagnosis after 5 years of hormonal therapy treatment in postmenopausal women. Based on these activity levels, Prosigna assay results are reported as a risk of recurrence (ROR) score from 0 to 100 in two ways:
- node-negative cancers are classified as low (0-40), intermediate (41-60), or high (61-100) risk
- node-positive cancers are classified as low (0-40) or high (41-100) risk
My test showed a score of 67 out of 100 which placed me in the high risk category with an estimated 16% (range 11-22%) 10 year risk of distant recurrence outside of the breast and/or armpit area (eg lung, liver, bone etc). This estimate is different from that of the Oncotype DX score (7%) because the test's characteristics (it tests 50 genes) and the validation population are quite different. The Prosigna essay evaluates outcomes of endocrine therapy whereas the Oncotype DX tests the utility of chemotherapy (which I'd not had to have). Since I seemed to be tolerating letrozole well, and given these results, my doctor suggested that I remain on letrozole for 10 years. He also recommended continuing calcium and vitamin D supplements and that we monitor my bone density closely.
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Hey Mavericksmom,
I have been on Femara for 1 1/2 years. I felt so fortunate not to have side effects that I too wondered if it was working. In fact, I asked my Oncologist if he had given me a placebo.
About two months ago, I noticed my hair thinning, a lack of energy, occasional UTIs, and what feels like arthritis. I can only attribute this to the letrozole.
I have an appointment coming with my oncologist coming up. Guess we’ll have to talk
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Help. I have been on letrozole for 8 months. My hot flashes and sweats have worsened over time. I think I can count on having at least 6 hot flashes and sweats per day, starting by noon, and always at bedtime. Does this ever go away? Or does it continue as long as I am on femara?
Treatment: Letrozole and Zometa (now have osteopenia)
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kkayet:
I took Tamoxifen for 5 years and suffered terrible hot flashes, but overall, felt pretty food. 2 years ago, my Oncologist switched me over to Letrozole. The first year and a half wasn't too bad, though I was more tired than normal. Not exhausted, but where I felt I could sit and rest for a bit.
The past year I've developed joint/bone pains in fingers, wrists, knees, ankles, feet, etc. ,which my Oncologist said was typical of this drug. I try to manage with exercise and Advil, but it feels so difficult to move at times and she said most of the AI's have the same SE's.
The past week I started having discomfort in my right hip and lower back. Not pain, but tightness, aches. Thought it could be from lifting a few heavy items. I find it feels better when im walking, sitting/lying down seems worse. I slipped and fell on my backside 1.5 mons ago and havent had any pain in my back from that fall. Dont know if that can show up later or not.
I'm scheduled for my annual follow up with my Oncologist next month, so will ask her about it. It's so difficult to know what is normal to hurt and what isn't and when you should worry and when not to. I have aches all over, it's so hard to tell.
I'm trying to not let my mind freak out that its cancer, or anything serious.
I hope you are doing well!!
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Hello all I have a few questions I hope you might be able to answer, I just started taking femera 2 and a 1/2 weeks ago and the SE ,I think are definitely rearing their ugly heads. first some background.
diagnosed in feb 2019 ,was finanly able to get a double mastectomy done the end of may, prior to all of this my normally, very good blood pressure ( usually 114 ish over 70 my whole life) started to go wildly out of control 170 over 100 , i was placed on micardis bp meds and even with that it only dropped to about 140 over 80 .
then i had the surgery and my BP went really low. then stabilized to my former GOOD BP ,no medication needed.it just stayed normal.
now 2 and a half weeks into taking femera and I am getting headaches..so I started watching my BP again.. its reading 190 0ver 99, sat still for 5 minutes it only dropped to 149 over 89, this was just todays readings , ive been monitoring it for a few days now. anyone else had issues with BP while taking the drug?
also my last REAL period was in august of 2018.. then I had a very light one in feb 2019. am I even supposed to be taking femera? am I not premenopausal? I started spotting last week since I started taking the femera. I had a uterine ablation a few years back, but I still have my ovaries. Im afraid I am taking the wrong medication and also afraid I will stroke out. I also feel like Ive been hit by a mack truck, muscle aches and bone aches.I feel 90 not 53.Im tired all the time too.
sorry for running on, just wanted to put it all out there and hope that I can get some answers. I dont want to take a pill that might be harming me more than helping me. Thanks for your input!
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