FEMARA
Comments
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Yes Bosum, I realize some just can't do it and am not ignoring their pain and problems on it. Mine are bad but I'm not as young as most and so will just live with it. If I were younger and married (I'm widowed), the hair thinning and lack of energy and painwould be a game changer for me too.
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Gracie- I believe the AI becomes a must do for stage IV but for us lower stages it's not like that so we have a little more leeway in doing something or not.
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Arista - that's exactly the case.
However, I don't think that A/I's are presented that way to people in earlier stages ... there is really only a small marginal benefit to A/I's in early stage. It's important to weigh the effect of the SE's carefully for people in early stages and doctors don't seem to help women with that process. I am glad to see we have people here really thinking about the benefits vs negative effect on health of these things. The effect of not exercising, depression and pain are much greater than the marginal benefit of A/I's in early stages. So if those S/E's can't be managed, I don't see the point.
I am also learning that the standard dose 2.5mg, may not be written in stone, even for stage IV. I'll be staying at 2.5mg, but pulling the string on dosage over the next year to see if a lower dose will get the job done..
>Z<
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I stopped taking Femara for awhile and have decided to restart by taking it evert other day. I'm hoping that will make the pain/fatigue/brain fog more tolerable. I have struggled over and over with these decisions, its just not easy. I'm taking generic Claritin and upping calcium and D in hopes that will help too.
I have bad knees too, need a replacement but recent job loss means insurance is gone. I am convinced the Femara made my knees worse.
There are so many more things I could add but it has all been said before. Im trying again for my family. My 7 year old woke up from a nightmare, she said I had died. This really shook me up....so giving it another go.
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Hi everyone- I have a few questions about generic Femara - I am on Accord . I started it in October after taking myself off of Arimedex(Generic) because I could not tolerate the leg and foot swelling and foot pain and finally when I could not get out of the bath tub I decided enough. I went off for two months and started Femara in October. I do have some joint pain and from reading this forum I will start Clariton to see if that helps.But it is minimal compared to the generic Arimedex. A bit over 2 months ago I started having ear ringing and it just will not go away. Anyone else have this? My GP is sending me to an EMT on April 18th, but if it is a side effect of Femara it will do no good to go see him. I noticed a lot of Dr's do not seem to understand the side effects of these meds. In July my ring finger went numb from a massage but it was also during the peak of all the side effects I was having from Arimedex which I had been on 3 months at that point. My new MO said that there is some evidence now that Al's can contribute to Carpel Tunnel symptoms- I had surgery for carpel tunnel on that hand in Dec- and having major trouble as it seems to have gotten worse- My surgeon did endoscopic surgery but did not stitch so it took a very long time- he said longer than normal for me to heal- the outside is now healed but 2 weeks ago I had infection and now swelling in that hand.. Never seems to end... Anyone else have carpel tunnel symptoms on these meds? Do you notice it takes longer to heal on these meds? I see my MO in April and will be e-mailing her as well, Also has anyone noticed an increase in anxiety on these meds and forgetful ness? I am 48 but feel 98 as I seem to forget where I put things all the time lately, which increases my anxiety like crazy,
Thanks everyone
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I have started ALL of my cancer treatments every other day. I wound up in the ER the first time I took Femara, after 4 straight days. I didn't feel like living, I felt so depressed. It was too much for my system, Lupron and Femara. I'm menopausal now, so no Lupron. I had have had good results taking Tamoxifen and Femara every other day. At different times of course. I have tried upping the dose to daily and side effects are awful. Right now I'm 2 days on/1 day off Femara. I also tried that with Aromasin. I could handle every other day, but any attempt to increase dose made me feel unbearable bad.
We are all different but it's clear there are people who simply can't tolerate daily Femara. If every other day Femara helps keeps my tumors stable, then why not let women taking it as a preventive do the same, if a full dose is intolerable?
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Is there anything out there that 1/2 a dose works, if it does at all that is. I'm told you need the full dose for effectiveness, not this 1/2 stuff.
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Artista - if you scroll up a bit, someone has posted some data that is responsive to your question. I went to look for the source of that exact info. I could not find it, but if you look in section 14 of the Femara Package Insert, it does review some clinical trial data that looks at dosing. The only trial data they present that looks at different dosing schemes is for advanced MBC in section 14.5. They look at .5 and 2.5mg. There is a difference in efficacy between those two doses, but it's surprisingly little. They don't have data for 1.25mg, but it looks to me like a reasonable thing to try ... it's almost 3X the low dose in that trial and .5mg was reasonably effective. Either cutting the pills or taking it every other day could get you there.
Certainly anything that prevented you from exercising, eating well and avoiding depression will have a stronger negative impact on outcomes than the difference between .5mg and 2.5mg shown in that trial. Or at least that is what I took away.
Personally, I am getting along well enough on 2.5mg and I will continue even with the data, but it isn't easy. Anything worse would have a serious effect on my overall wellness and I would be looking at cutting my dose.
I asked a very senior research doctor about cutting my letrozol dose early on and was completely stonewalled. She said that you can't measure estrogen well enough to determine whether the lower dose is really reducing estrogen levels as well as 2.5mg. She said that letrozol has anti-cancer properties beyond estrogen reduction that just testing for estrogen levels do not measure. I don't see that playing out significantly in these studies, but be prepared for a push back. Reducing your letrozol dose is not typically done. I don't feel that MO's, in general, have considered the question seriously. They are pretty obtuse as a group about the effects of the side effects on healing. It's easier to just say no to patients and follow what is generally done. How hard you want to push your MO to reconsider the standard model is a personal decision. We each have our own way to get through this ... minefield.
>Z<
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Hi NDGRRL- I have had tinnitus or ringing in the ears for years. I sincerely doubt that the femara caused your tinnitus. I am not sure what caused mine. I had lots of fluid in one of my ears when it started. In some people it is caused by loud sounds, and some people have tinnitus and TMJ together. I do. What works for one person when they are treating tinnitus, may not work for others. At a tinnitus support group I attended once, there was a guy there who had dealt with it for 23 years. He had recently had some work done at the dentist, and his tinnitus went away for the first time for a few hours. The only thing that helped me at all was cranial sacral therapy. When I did some muscle trigger point work, I also found the tinnitus got worse when the therapist pressed on the serratus anterior muscle. BTW- The myotherapist/trigger point therapist that I have gone to in Chicago, has successfully treated a ton of people with carpal tunnel. She has helped a lot of musicians that have had it. She claims that surgery does not work that well.
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Yes, agree on the stages...I took Arimidex for the full five years after my first diagnosis but didn't have nearly the se's I have had with Femera. So it wasn't an issue for me then either, but I do realize that everyone is different. When I make a statement like that, I am not ever speaking generally for anyone else but only for myself, which I thought and I hope came across like that
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Right on Z!!!
Reducing your letrozol dose is not typically done. I don't feel that MO's, in general, have considered the question seriously. They are pretty obtuse as a group about the effects of the side effects on healing. It's easier to just say no to patients and follow what is generally done. How hard you want to push your MO to reconsider the standard model is a personal decision. We each have our own way to get through this ... minefield.
My guess is, many of you who are reading this discussion, are doing so because you're miserable. Please don't be afraid to push back if you are suffering. Yes, we all have our different ways of handling cancer. And some of us handle Femara just fine.
I have no problem pushing hard, respectfully after a PET scan was not read correctly and a local oncologist (not my MO at MSKCC) told me I had cancer in my liver and needed to start chemo immediately. If I hadn't pushed, hadn't said "That doesn't sound right," -- I don't know if I'd be dead but I definitely wouldn't be in better health for having unnecessary chemo.
Wishing a healthy Monday to all.
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Michelle - Sounds like you are a pain in the ass kind of a patient, just like me. Looking forward to challenging lazy doctors and comparing notes on treatment strategies with you for many many years.
>Z<
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I assume this pill cutting is for Femara and not Letro? I did purposely skip a day here and there on Letro but no relief.
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Artista - Femara is the name brand, letrozol the generic. As far as dosage modification, there should be no difference. You could cut either.
We are just speculating here that lowering the dose will help side effects. If the side effects are from lack of estrogen and the lower dose is pretty much as effective at lowering estrogen, it won't effect side effects.
If the experiment in lowering the dose didn't help ... you need another plan. Unfortunately we're all different and there are no recipes. But you need to solve the pain issue as that alone will do you in.
>Z<
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Femara is the brand name developed by Novartis. As it was the patented formula of letrozole, it was 'owned' by Novartis and the only manufacturer of the drug letrozole until the patent ran out (think it was May 2011 but could be a bit off on exact date). When I started Femara in 2/10, it was only available as Femara. I have been on letrozole since the patent ran out and other manufacturers could produce it.
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You know, people always talk about that "cancer battle" we all must bravely fight. It's not only the cancer but the doctors and the weakness of the medical system and the funding for research that addresses the needs of the pharmaceutical companies and not their patients. And anything else you want to add here. Some might say it's exhausting, but you inspire me with your energy to keep coming back and not just take what they give you. Amazing women, y'all are.0
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I've moved from Femara to Aromasin due to significant hair loss -among other side effects, but wanted to share this on this thread as well. Hand Yoga!! Namaste, my friends.
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I had to call my MO office to let her know I did an abdominal u/s and mentioned Aromasin and how it works differently than Femara and Arimidex. I'm osteopenic so not sure if AI is even an option anymore. Told her that hairloss is big concern. Maybe try it if she feels worth it and stop immediately if hair starts pouring out again. We'll see. Appt 5/4 so on Tamox until at least then, and am doing well on it so difficult decision. The effects of letro are all gone except knees are a bit worse from what they were pre-letro.
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I don't take loratidine but rather cetirizine (generic Zyrtec) as my antihistamine (maintenance meds for perennial allergic rhinitis & asthma). But I do switch to loratidine for the week before and after a bone-drug treatment (Zometa first, switched to Prolia). No bone pain!
But for joint pain, I take two arthritis-formula 8-hr (650 mg. ea.) acetaminophen at bedtime and 200 mg. celecoxib (generic Celebrex) in the morning. That, and the facts that my artificial knees have plastic instead of cartilage, I have no PCLs or ACLs, and I'm 11 yrs. post-menopausal, probably accounts for lessened joint pain & startup stiffness, mostly in my L foot (old metatarsal stress fx & cuboid syndrome).
AIs have been shown to be more effective in fully postmenopausal women—regardless of stage. However, in pre-and-perimenopausal women who have functioning (or any) ovaries and do not take ovarian-suppression shots or pills, they are counterproductive. Interfering with aromatase's action as a catalyst in the process of converting androgens (androstenedione & testosterone) produced elsewhere in the body into estrogens (estrone & estradiol) causes the ovaries to secrete gonadotropin, which in turn causes them to release more estrogen. For these younger (chronologically or gynecologically) women, Tamoxifen is the anti-hormonal of choice because it blocks the tumor cells' estrogen receptors to keep estrogen (wherever it's produced in the body) from being taken up by and fueling the tumor cells.
In postmenopausal women, the ovaries are dead—they can make neither gonadotropin nor estrogen—so getting rid of estrogen by keeping aromatase from being the catalyst in its conversion from androgens is more effective than gumming up the receptors. Think of estrogen as being a donut in your fridge; Tamoxifen as your jaw wired shut so you can't eat it; menopause or ovarian suppression/removal as the bulldozer that demolished the donut shop so you can't buy more donuts; your fat cells and adrenal glands and fat cells as the raw ingredients in your kitchen so you can make your own donuts; aromatase as the hot oil that fries the batter so that it becomes donuts; and an AI a carb-blocker that keeps your body from absorbing the donuts if you eat them—but if you take it before menopause, force-feeds you more contraband donuts and lets your body absorb most of them.
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Chi- You're a brilliant metaphorist, if that's a word.
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ChiSandy - your donut analogy is brilliant!!!
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Oh I love a good donut metaphor, even more than donuts. Which makes a donut metaphor, kinda like a SERD?
>Z<
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Hello ladies my name is Aga. I too am taking this medication. I have been on it for about 2to 3 weeks . I hate it!!! My bones ache. And lately I've been wondering why am I so sad and down. Well I guess it's from this med. I'm also so tired all I want to do is sleep.
Anyone thinking of doing anything naturally? Any herbal suplaments ? Is there anything else to take?
I too am 43 and feel like 93!!
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Try taking Claritin (not D) for the bone pain. Works for so many. Talk to your MO about the mood stuff. They have meds for that too that many of us are on. You can go natural but nothing is scientifically proven to help like the Tamox and AIs so there's that risk. I had multiple issues that were actually debilitating so I went back on Tamox. You could try another AI or go on Tamox. Better than nothing.
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Hi all, like you Aga, I have been on it about as long as you and I am so TOUCHY! I am taking joint pills so hoping that will help, but this irritability, is it from the Femara? I'm so glad I found this board, I have only read this page, #285. Looking forward to gleaning some good info from you all.
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Any of you taking the generic? I am very sensitive to medications & found letrozole was horrible. My MO changed me over to brand name Femera this time around & it is a world of difference to me. I had terrible joint pain, painful leg cramps & extreme dry mouth, none of these with brand name.
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Aga - At Stage I, you have the option of not taking femara. When the side effects are severe, it does more harm then good in my opinion. You will get a lot of good advice on how to manage the side effects here. It's worth trying them all. But if everything fails, consider just not doing it.
>Z<
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GG27, my Onc gave me Femara this first month, but every month after I will have the generic Letrozole. Gosh, I hope I don't have the same issues.
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I don't want anyone to reduce their dose of Femara because of a post I made awhile back. Things may be more complicated than just estrogen levels, as others have pointed out. I posted the text from the drug insert above. Another version of the drug insert for Femara has a different study.
Today what concerns me is that Femara has much less effect on distant recurrence/mets. I had a double mastectomy so recurring breast cancer or contralateral breast cancer is not a concern. The stats were affected by placebo folks being switched over to Femara early in the study, but still, the overall reduction in risk for distant recurrence is relatively small. More questions for my oncologist, who already told me that after 5 years, with no breasts, Femara reduces risk by only 1.5% (as I remember, don't rely on that!).
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It seems logical to me that what my MO says, AI's if they work provide roughly 3% risk reduction. So if you cut the dose in 1/2 each day you'd get half. I told her what I read here about really no diff and she's doesn't quite buy it. I looked at generic Aromisin prices with insurance and with goodrx.com and holy. So that's out. She told me that since I'm tolerating Tamox pretty well that for me that's the best route considering how horrid Letro was for me.
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