FEMARA
Comments
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Ok......I'm 6 years into femara............the side effects at first were awful & I didn't really see how I could do 5 years...........joint pain........dizzy.......felt drunk (without the pleasure).............
But it did pass.........so much so that I actually asked my onc if I could do another 5 years..........it's my comfort blanket..............
I'm now over 6 years out and have been taking femara for 6 years (just another 4 years to go)........my friend was only grade 1, no nodes etc etc.......so no chemo.............now after 11 years, it's back in her bones (badly)..........& guess what she's been prescribed?..........Femara/letrozole....
It works!! Side effects can be brutal at first but do improve..........I still have some minor side effects.......but given the alternative..........I'll stick with the femara..........
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happygran...how long did you have to endure the side effects before they passed?
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....I think there is no way I could do them a minute over 5 years. Unless I stopped and became stage four, and they still worked on me.
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Thanks, Tammy. Arthritis is the family disease of choice.
I"m not knobby yet, but won't be surprised if I get there. It's just odd how transient it is. But happy that it's only my thumb that's super sore these days and that everything else is just achy. I would concur that the Femara likely just makes what we already have a bit worse, at least for a period of time.0 -
kathec, my sentiments EXACTLY!
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hi ladies , has anyone noticed an increase in vaginal dryness with Femara/letrazole? If so, how did you treat it?!
Thank you!! Dventi
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dventi,
I was just at the gynae yesterday for a check and i mentioned this too him. I also had adhesions following surgery that had too be cut away.He explained that the adhesions had developed cos I have Femara and the lack of oestrogen causes amongst other things vaginal dryness.
For this he said I need Vagifem which is a cream I think (the script is going to my GP, so I do not have it yet) It contains a small amount of Oestrogen that will help with the dryness.
I looked at him aghast as I am highly oestrogen++ He told me the amount that would get into my system was really negligible and would not affect the breast ca. He said he had ran it by the consultant and they agreed it was ok to prescribe...
I am sure you must have the same or equivalent in the US.
p.s I loved New York when I was there maybe 8 years ago now....
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The support women Doctor recommend the following. There is no estrogen in it it. I'm giving it a try. It freaking sucks being 37 with no sex drive and feeling like the Sahara desert. I feel sorry for my DH.
Luvena Prebiotic Vaginal Moisturizer and Lubricant - 6 Count, Pack of 2
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@wintersocks- thanks for prescrip info - and the sanity check ! Ps glad you had fun in NY. I visited the Uk around 15 years ago- enjoyed your country!
@fairydogmot- you made me laugh - Sahara desert! I like that there is no estrogen in the vaginal moisturizer! Thnx for your input!
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hi dventi - some oncologists (like mine) are okay with the use of vaginal estrogen. I told him when I first saw him after a lumpectomy that was Stage 1, grade 3 and 96% estrogen positive that I'd been using Vagifem (tablets) for several years. He said there was no indication that significant amounts of estrogen leave the vaginal area and enter the system. I've noticed since going on aromatase inhibitors (I was on Arimidex first, but went off after one month of severe insomnia) that they intensify the dryness and I have to use more Vagifem than is normally prescribed. My gyn gave me an additional prescription that I get from Canada. It's basically what was approved by the FDA originally before they reduced the dosage from 25 to 10 mcg and from 3 times a week to twice. Right now I've been off Letrozole for a month with the MO's permission because of severe joint pain. He wants me to try Exemestane/Aromasin but to first get the Letrozole out of my system. I'm sure once I get back on an AI, I will need to up the Vagifem again. But if you can't or don't want to do vaginal estrogen there are several OTC lubricants like Replens and something I've read about called "scream cream" which is supposed to help with dryness during sex. I haven't tried that - I have no sex drive
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Nash54 - what you'll find is that femara affects people differently. Many people have no side effects at all (though they tend not to post here, as they don't have the reason to), some have side-effects and then they pass, some (such as myself) have side effects that change from time to time - sometimes for no apparent reason, and sometimes because of a change in prescription (i.e. the drugstore changes providers - therefore a slight difference in the fillers/prescription).It looks like you weren't Dx'd all that long ago. So, you are in the early throes of this roller-coaster. I wish you all the luck in the world.
The one single thing that has helped the most in handling the aching/painful side effects of this drug is moderating my diet. I now eat no grains, no dairy, no processed sugar and very little red meat. Mostly vegetables, fruit and fish and make sure I get enough oil in my diet, mostly olive oil, as flax is a heavy phyto-estrogen, so I avoid it. I drink a LOT of water. Still, though, I have other side effects, such as dizziness and occasional insomnia - interspersed with fatigue. My libido has taken a permanent vacation and I can totally relate to the woman above who mentioned the Sahara. I wouldn't, however, have the guts to take a vaginal estrogen (that's just me - even if my MO said I could - I'm just too chicken), but there are some over the counter lubrications that we do use.
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Thanks gardengumby.....I've decided I'm not going to have any side effects....haha. Most of the ones mentioned I already have to some extent. Thanks for the diet input...I have been trying to go mostly wheat-free for some time now. I do need to add more fruits and veggies. I thought I ate pretty healthy but when I take a hard look at my diet it is lacking in the fruit and veggie dept.
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Just an update at almost the beginning on my 9th month of letrozole. Still no joint pain or stiffness that is not normal for my old bones, but having to wear my wig again when going out dressed nicely and baseball caps when running errands. Until the newest fashion fad becomes a lot of scalp showing on the top and front of the head I guess this is it. My hair just keeps getting thinner and thinner.
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Peaches, have you tried taking Biotin? I lost a fair amt of hair in the beginning with letrozole, but the biotin has helped a lot.
and Nash - good luck with that decision!!! Hope it works out for you.
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Garden-
How much Biotin do you take? I need to call my onc or her PA ga bout Biotin, but I have no idea how much to take when I see different strengths in the drugstore. Glad it has helped you
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so I have been off femara since July--sex drive has not returned and vaginal dryness continues--- to add insult to injury, my gyn told me my vagina was atrophying.... so I have been in vaginal physical therapy since September--it has been great--- we work with dialtors--- the tissue gets tight and dry from the drugs, intercourse hurts, so we don't want to do it- thus the vaginal shrinkage-- the old adage "use it or lose it really does apply here.
I use replens pretty regularly for general lubrication (I am on auto delivery with amazon!--it is never in the stores).... I do this therapy weekly, but have to use the dialtors daily in order to relax the tissues---- I think this is going to be a lifetime effort for me--- but I am glad that there is a solution......
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Hi ladies
Besides the joint pain on femara..has anyone had issues with their ligaments.? This is the second time I have had a pulled ligament .. Last year had a cat scan to confirm it wasn't something else
... I don't want to get cat scans for every ligament that is pulled .
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Momand2kids, great that this works for you. I really need to investigate further!!
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Has anyone experienced more joint pain since the weather has turned cold? I don't know if this is the case for me right now or SE's from letrozole. Up until recently my stiffness and achiness was doable and usually just upon awakening and starting the day. It was usually gone by the time I showered and started moving around. Now it seems to be worse in the morning but also when trying to sleep. Have an appt. with my orthopedist just to make sure it isn't from my hip replacement and that all is well there.
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Yes, for sure, I think we are like our elders were when we were younger, when they said they could feel a change in the weather coming, :in there bones. I think the a.I.'s do the same thing. at least, I feel it in my bones! But I never did before starting therapy.
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Yes, to stiffness more with colder weather. I really feel it more now than ever.
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2 weeks off Femara tomorrow & yes, cold is plaguing my bones, but it did that before Femara & it's not near as cold here as some of you experience. I haven't notice much difference yet, but I think it takes a bit of time to get out of the system completely.
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I have more 'aches and pains' during winter BUT that started LONG before IBC! It is brutally frigid here and I can't get out and do as much though go to the base gym often.
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I am sure it is in this wonderful thread somewhere but I don't have the attention span to sort thru it
so I was wondering if anyone has a certain manufacture of Letrozole that they prefer? I know the side effects can vary with each manufacture. I am currently using one that is manufactured by Sun. I am having some side effects and feeling like crap in general. I am taking a 10 day drug holiday to see if I notice any difference. Has anyone noticed a difference in generic versus non-generic brands also? Thanks!0 -
hi all i have been on Femara for about 4 years i take xgeva for the bone issues and effexor for the hot flashes and mood stability and a prenatal vitamin for my hair amd nails. I did have back pain and knee pain but once i lost some of my weight it left.
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tessy just looked i too am on the one made by sun its the only one i have ever taken so all the SE listed are from that manufacture
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hi Tessy..... I am getting generic letrozole and I feel strongly that for me, there is a difference between manufacturers and the side effects. I have been on it for about one year and getting Sun Pharma. Lots of joint pain and muscle aches. A couple of months ago, the pharmacy gave me Apotec and my side effects disappeared....then the next month, I got Sun and the SE are back. I visited the pharmacist and she sweetly put my name on the big bottle of Apotec so I will get it next time. Then I can be sure about the difference is my SE go away again.
All that said, a smart lady on this thread gove me a link that explained that the FDA allows generic pharmaceutical companies to vary the active ingredient in generics between 85 and 125 percent of the brand name....therefore I am concerned that when my SE go away, it may mean I am not getting the proper dosage. argh! It just never ends.
Best to you. MsP
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No idea which generic I was on - I'm three months out from taking it for five years and will say that it took over two months to notice improvements.
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Thanks lassie, that's good to know. I'm 2.5 weeks done & although I didn't have tons of SE I haven't really noticed any difference yet & I was sure I would.
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wait, MsP! She gave you a link that said the active ingredient could be up to 125% different?? Wouldn't that make it a different drug entirely? I hope that you are talking instead about the fillers, which I thought were the only thing that a generic drug maker could change. Can you post a link to that study?
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