FEMARA
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New to this forum, as of today! I too am getting really bad hot flashes at night. (I'm on exemestane) I know I need to take this drug, but the hot flashes are getting worse and worse. I was on letrazole for a short while, but changed to exemestane as I was getting so nauseated on letrazole(or it could have been a side effect of a breast infection that I had) anyway I'm very interested to read that there is a drug called Neurontin. This gives me hope currently I wake about 6 times every night due to sweats, thirst, headache it’s awful.
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CandadianKate: Talk with your doctor about some of the anti-depressants. They can stop hot flashes as well. I'm on Celexa and it got rid of over 75% of my hot flashes. Good luck with the letrozole. I'm on my third and final AI and my main side effect is the joint pain.
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My onc told me that for the first 5 years is recommended and the next 5 years are to prevent recurrence as the trials showed those individuals who stopped at the 5 year mark, some encountered a recurrence of the cancer so the protocol is to be on it for 10 years and at that point we would discuss the next course of action.
I first developed osteopenia on my first dexa scan, the next scan showed it had progressed to osteoporosis at which time I began taking the PROLIA shot. Now a year later, I am feeling knee pain and stiffness around front of left knee. Anyone have any remedies for this?
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kickin-cancersbutt, have you had your knee imaged? Could be degenerative disease unrelated to femara. You need a diagnosis. If it's osteoarthritis, diclofenac cream can help (it's a topical nsaid)
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kickin-cancersbutt-2014, I developed right knee pain, swelling and I ended up with Baker's cyst. I was told to wait until it goes away in a couple of months but has been 6 months and I scheduled to have it drained. It bothers me to exercise, yoga, etc. I have a feeling that tenders and ligaments get stiff and painful from low estrogen. I don't know how this can be solved since we are taking a medication that kills estrogen.
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I now have letrozole to try. I've been on a roller coaster of pain and misery, on and off since June. Lupron, Aromasin, anastrozole, ovaries out, anastrozole again, arimidex with breaks in between. When I stopped aromasin, I felt better within 48 hours. I stopped anastrozole for ovary removal, and felt better pretty quick, but was only on it about 2 weeks every other day and my ovaries were probably producing some estrogen right before surgery. My arm pain did not start until after surgery, and before I re-started anastrozole. So I don't know if it's from the surgery or the drugs or both or from chemo. My arms started going numb at night in March, 3 weeks after stopping chemo. Got a little better, than worse again on the drugs. Exactly 1 week after ovary removal my arms hurt really bad from my fingers to my elbow and it felt like muscle and joint pain. It really freaked me out and hasn't gone away. I was supposed to have surgery (DIEP) this week, so stopped celebrex first, was in severe pain, stopped the arimidex, then they rescheduled my surgery to 1/29. So I am struggling with the decision to go back on for one week, or just stay off until after surgery. It might be stupid to be on a new drug for one week and I would like to be pain free before starting another new drug. I'm so miserable with pain from anastrozole and arimidex. Aromasin gave me leg pain, headaches and severe insomnia even with my sleeping pills. I'm afraid letrozole will make my hair fall out and also give me the same arm and leg pain. I'm not that hopeful it will be better, but I'll give it a try.
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JRNJ, what does MO say? Do they recommend anything to help you with SE? I do have SE too but not as severe as yours and they are tampering down or I am getting used to having them. For sure my quality of life is worst since starting this medication.
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JRNJ - do you have a port or are you getting chemo through veins in your arm? I have some general aches and pains, but am trying to keep as active as reasonably possible.
I've been on letrozole since early January, have started HP,and although I'm having some SE, hair loss isn't one of them. I'm post menopausal so the lack of estrogen is making me pretty miserable, but I'm trying different things and working with my GYN and MO to combat SE.Take care
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Lily, I feel like I am following you from thread to thread, lol. My MO says very little. I go to him with what I read on this site and he is usually agreeable. He told me to try every other day. He said not to take flaxseed oil because it could turn into estrogen. And he recommended CBD oil, lol. I tried everything I read about, and most didn't help. I dropped most of them and am taking Celebrex, CALM (magnesium), calcium, multivitamin, prescription vit D, C and lunesta for sleep. I was tested for RA, and he said I don't have it. I have an appointment with a Rheumatologist in April and DIEP surgery 1/29. In my dreams the surgery will help, but it will probably make things worse. My blood pressure has also risen, but not raising any red flags to anyone because I started out so low. I think it is a red flag from 100/70 pre BC treatments to130/80 last week.
NSbrown54, No port and chemo is over. I had CMF chemo from 12/2019 to 3/2020 via IV. It's not as toxic as taxol so Dr. didn't think I needed one. I wasn't supposed to lose all my hair, but I lost about 90%. I was born with very very thick wavy hair. I've been getting Keratin treatments for 12 years. The last few years my hair really thinned and I lost a lot of it and the treatments made it totally straight, I think because the LCIS was so large it was taking blood supply. It has grown back super thick and super curly and I'm not losing any of it. I'm just waiting for the other shoe to drop and for it to start falling out, but for now it is too thick and curly, grass always greener...... I went to the salon last week for the first time in almost 2 years. Got a keratin treatment, but it didn't work much, still super curly and frizzy. However, I know I am lucky to have hair. My chronic pain is main issue here. Maybe psychologically deep down I think if I look like I used to look, maybe I'll feel normal.
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Hi Ladies-
Jumping in, haven't been on the BC boards in a while! I started having joint pain on Anastrozole and had a trigger thumb going. Went to PT and my MO stopped the drug for about a month and it resolved. On and off knee pain as well. Switched to Letrozole. Seems like SE's kick in about 9 months later with both drugs. This time the knees were slightly swollen and painful. Asked for PT and that did seem to help. The nurse practioner at my MO's office suggested I try Move Free. So I've been taking that and I went a couple of months and was doing well and last week -I guess i did too much walking?? Back to an issue. I also know I need to stretch more! My hips, hip flexors and my whole hamstring will just stay tight. I can feel all of them aching as I sit and type. I definitely notice some of the SE's increase and decrease randomly. More hot flashes lately. I'll see my MO next week- I don't feel like she can do anything for it - definitely a PAIN!
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ajbclan: I'm with you on the SE's change randomly. Around Christmas my hands hurt so bad I could hardly make cookies!! Hot flashes were awful. I knew my appt with my MO was in Jan so I thought I would wait it out. Well the pain went away and the hot flashes were tolerable. I hate to change meds because I feel all the meds have side effects and why bother. She did mention a low dose of ditropan (used for frequent urination) helps with hot flashes, In the middle of the winter I just stick my head outside but if they continue like this in the summer I may try ditropan. I am already on a low dose antidepressant and don't want to change to effexor. I have been on lexapro for over 15 years and it works for me. But all this being said, I still feel very lucky that my 2 cancers were minor compared to all of you who have suffered much more. Happy super bowl day!!
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I've just completed 8 years on Femara. My oncologist said I'll be on it for 10 years since recent studies showed that taking it for 10 years rather than 5 years was particularly important for women with ILC. She explained that the risk of recurrence with ILC doesn't go down as much over time as the risk of recurrence with IDC does.
Like others who have posted here, I have had roving joint paint ever since I began Femara. Within 2 days of starting Femara, I developed carpal tunnel in both hands. I got carpal tunnel wrist supports and within a couple of months, the carpal tunnel was gone. I'll have one hip that aches for a month, then the pain abates. That will be followed by pain in a shoulder that will last a month or so and then go away. On and on.
I take NSAIDs as needed for the pain. I get outside every day to exercise, no matter what the weather. I've also been on a low dose of clonazepam for over 20 years that I take before bed due to entrenched insomnia. It calms my mind and makes it easier to fall asleep. I've found that listening to a podcast as I try to fall asleep is very helpful too. I play the podcast on my laptop and close the laptop cover when I feel I'm about to fall asleep. The podcast stills my racing thoughts.
LillyIsHere, I'm wondering if you have a cartilage tear, maybe a meniscus tear, that is causing your Baker's cyst. My friend has had two occurrences of a Baker's cyst behind her right knee due to a meniscus tear. Her orthopedic surgeon will do arthroscopic surgery on her knee when Covid has calmed some.
I have had substantial bone density loss since starting Femara, but I am osteopenic, not osteoporotic. Despite all the joint side effects, the hope that Femara will prevent a breast cancer recurrence makes it worthwhile to me.
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while on femara,anyone had aches on off around lower pelvic bone or muscle? I cannot tel it is the bone aching or the muscle at my upper thigh-pelvic bone area. I have on off join bone aches in my knee food hand but this one worries me because is close to ovaries
Some of besides foot hand pain mentioned body aches. I am wondering if this on and offupper thigh- pelvic bone cake is one of the common thing.
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I've only been on Letrozole since Dec but I have ongoing joint, bone & muscle pain from chemo and immunotherapy. I re-injured a hip flexor recently doing Zumba and spent some time focusing on hip mobility and strength. I really liked this slow flow hatha yoga for hip class from Do Yoga With Me. They have tons of free videos (or you can buy a membership for others or for permanent download of a class). https://www.doyogawithme.com/content/slow-flow-foc...
He also has a slow flow for knees too which I will try this week. I'm very stiff when I get up from sitting and one of my knees likes to pretend it's giving away under me so I want to focus a bit on that area as well.
I think continued strengthening, stretching and maintaining range of motion are key in managing the side effects.
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Thank you for all your tips and suggestions Ladies. I have been doing yoga for a long time now, years before BC but I never had these aches and pains like during letrozole time. My case is strange because half my body, cancer side, feels normal and athletic and my non-cancer side has aches and pains: foot, knee, hip, shoulder, neck, and head. It sounds strange and feels strange.
choochoobella, thank you for your suggestion. I had an x-ray and MRI of the knee and it seems fine. Last month, I had the aspiration of the cyst that costed me out of pocket $250+insurance for a 5 min procedure, and this month the cyst came back! I am also worried about my right side hip and flank pain and can't wait for the appointment with MO next week.
Thank you for your suggestions Nash. I will add these yoga stretches to my routine.
Sometimes I think certain food interact with letrozole and make me more sensitive towards pain. I wonder if others have any similar experiences.
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I am on letrozole for more than 1 year but it is a month i have dry throat feeling to clear it by coughing once a while. I am drinking water in good quantities. It is a common se? Anyone has this
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No I don't have that SE. Just the usual hot flashes. Mild joint pain. Lets see what others say.
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quinnie - I've been in letrozole since early December. I get the occasional headache, joint pain, and stomachache and it's made my vaginal dryness worse. OTC remedies seem to help.
Margun - I have dry mouth that predates my BC diagnosis. Have you tried Biotene Dry Mouth Rinse or other OTC mouthwash for dry mouth? I drink water all day long and stay away from caffeine and carbonated beverages. This seems to help alleviate my dry mouth feeling.
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Just putting this out there. I have been on Letrozole for about 10 months. No issues with joint pain just hot flashes. Recently I had my yearly blood work and my lipids, cholesterol etc have went south. I never had issues prior. My PCP put me on a statin which I really hated to do. Now my blood pressure is doing up to the point that I may need meds for that. I am healthy, exercise and eat pretty good (not perfect) so I am assuming it is due to the letrozole. Any of you have this problem?? Thanks in advance.
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Have been taking letrozole for a month and really suffering from insomnia. Haven’t noticed many side effects except can’t fall asleep and when I eventually do I wake up within the hour and it continues this way all night. Waking constantly. Feel like a complete zombie during the day and just can’t sleep at night. I am taking melatonin and cbd oil at night, hasn’t really helped.
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Ladyc - I've been taking letrozole for about 14 mos now and I haven't had insomnia problems. I've got all the hot flashes and body aches and pains, digestive problems, and more, but what I don't have is a sleep problem. I think it is because for years now, I have used a "happy light" (bright light therapy for the "winter blues"). I've used the light since way before cancer and have continued throughout the cancer ordeal. The lights are recommended for SAD (the "winter blues"), but they are good for much more. It does help my mood, and it gives me energy to get out of bed, take a walk, etc.; but in re the sleep issue, it regulates your circadian rhythms - a real integral part of the sleep cycle. I truly believe that this is the reason I have no sleep problems, yet I read about so many on letrozole who do. I don't know if it actually affects melatonin levels (have not been able to locate any info online), but I assume that circadian rhythms also regulate melatonin (just speculation on my part). (I tried taking melatonin once and it made me feel weird, so stopped.) Some people only use the light during those dark winter months, but others like myself, use it all year around. I just don't leave it on as much in the spring and summer as I do in the fall and winter.
If you opt for one, do read up on them and use it properly. I have known people who will use things like sun lamps instead (not the same thing at all) or they just turn them on like a lamp and go about their business all over the house and are never actually near it, like you need to be. Those people conclude that light therapy doesn't work for them and it's because they didn't get the right light and/or use it properly. It needs to be used in the am when you first get up and you need to sit a certain distance to/from the light. I put mine on when I get up and then have coffee and read the news (or BCO) online while I bask in the light for approx half an hour. Again, I sleep well and am so glad for it and really believe the light has a lot to do with it. They are sold on Amazon; I use a "SunTouchPlus" by Nature Bright - have for years and years and have been very pleased. There are plenty online to choose from, but do research the whole thing and don't just go using one randomly or "whenever", etc. and don't use some sort of other type light as a substitute. All the different varieties on Amazon also have all those "answered question" sections and plenty of reviews that can give all kinds of additional info, instructions, etc. Hope this helps and best of luck to you. This letrozole business is awful!
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Good morning,
I started Letrozole about 5 weeks ago after being on Arimidex for 18 months. I noticed about one week ago I began to have tingling in my feet, legs, arms, and face even over my buttocks. I'm not diabetic. I have a lot going on this week and this does nothing for my peace of mind. Has anyone else had this experience from being a letrozole.
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Humblepeace - I have neuropathy from TCHP, not my letrozole use. I’ve been on it since early December. Have you discussed your side effects with your oncologist?
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Nsbrown54- Thanks for responding. I have been on Letrozole for such a short length of time I have not had an opportunity to talk with the oncologist about it. I will soon.
I also had some digestive issues, like Indigestion and nausea in the morning prior to eating. Once I had breakfast it got better until the next day. That all has improved greatly, not gone but better.
I was on Arimidex prior to this and though it had side effects which were bad these were not one of them. I’m sure each AI has similar or even different issues.
Thanks for responding.
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Humblepeace - I hope you find a resolution.
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Humblepeace - Just FYI, I responded to your post on the other thread where you posted about the tingling. Hope you get things resolved.
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Humblepeace, do you take it with food? Sometimes it helps. I take letrozole at night time before I go to bed and not in empty stomach even though directions say that would be OK without food.
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Thanks everyone. I also generally take the pill at dinner and my stomach is fine. I was having the discomfort in the morning, but it has improved. Now to get some resolution for the tingling that seems to be “all over “ my body
In addition, I’m waiting for biopsy results for what I’m praying is scar tissue from recent removal of fibroidadenomas.
Thanks again.
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I just wanted to mention that I switched from Anastrozole to letrozole last summer and experienced muscle pain in my arms and upper back. My hair also thinned and became brittle. I seemed to have more indigestion, as well. I recently switched back to Anastrozole and the muscle pain is gone, while joint pain and insomnia have increased. Each person responds differently, but for me the Anastrozole is more tolerable. I am curious if anyone else has muscle pain from Femara.0
