FEMARA
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Letrozole by Roxane Laboratories - so it seems Roxane Labs has been taken over by Westward Pharmaceuticals and they are no longer making generic femara (letrozole). Did anyone know that? Also I have wondered if the reason Roxane letrozole didn't cause much SE's for me was because the active ingredient wasn't that strong? Anybody?
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Bareclaws, I was really concerned about side effects after reading this site also. I've been on letrozole for about two months and no side effects at all. I already have osteopenia in my spine, so my awesome MO started me on Xometa at the same time as the letrozole. The Xometa made me feel pretty lousy for a day, but apparently that is a known, common side effect the first time you get it and much less common with subsequent doses, which are only every six months.
I am super active and saw when I came here that almost everyone here was having a rough go of it with the med. I think that is because if someone is having a lot of side effects, they are more likely to come to a site like this looking for answers and support. Same with why so many talk about their terrible doctors. It isn't that all doctors are terrible, it's that if a doctor is good, explains things well, listens, and gives accurate information, their patients are less likely to feel the need to come here and less likely to stay if they do wander though.
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SusanRachel, good points! I am going to try it and see what happens. Still a ways from having to start on it but I've been reading all the comments and thinking no way, but thoughtI'd ask about the fitness angle. As miserable as I've been, I'm sure that being physically fit has saved me from much more severe SE's.
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Bareclaws, sent you a PM.
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Don’t want to jinx it, but I seem to be doing OK on the Accord generic thus far. Haven’t noticed much difference in symptoms between it and the Teva.
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hi everyone many of us are doing well on femara whether for bc or mbc .for me in australia i have tried 3 brands no difference but will continue with femara. What i have noticed is a correlation with hot flushes when weathe r temp is higher than 27 it gives me prickly heat now cooler no problems
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SusanRachel and Bareclaws - I've been on Femara for 13 months and no SEs other than a bit of brain fog once in a while. That seems to be getting better. Some people don't have SEs at all while others don't have any until a year or 2 in. I keep active, take D3 and calcium, Magnesium and vitamin K2 for my bones and glucosamine sulphate for my joints. I don't know if any of these are helping - check with your doctor of course before taking anything.
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I take Lovaza (Omega 3 and esters), and it has made my nails much stronger. Added benefit is that it lowers triglycerides. I have been off Femara for 6 weeks and have just started Tamoxifen—feeling much better, although I still have neuropathy, weak legs, and nerve-damage symptoms of urinary urgency and constipation. But my nails are fab with the Lovaza, and I highly recommend it, but it's prescription.
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Bareclaws, I was put on Prolia (shot every six months). I will be tested for osteoporosis in a few months, but I do feel like my bones are weaker in my hips and femur. I was doing ballroom dancing, swimming, and Zumba, but after the AIs, I have cut down activities. I am in the process of ramping up, but who knows how much strength I'll get back.
Plus, you may do great. There are many women with few SEs. I already had osteopenia, so that's why I was put on Prolia.
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I have been n Letrozole for about a mt now and so far no issues. I hope it stays that way as I was more scared of taking this then I was of chemo .
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Bareclaws, I have been on the stuff 5 years, and I have had some bone loss. Nothing dramatic however. My spine started out weak, and is now borderline osteoporotic. However, my doc takes a holistic view of the matter, meaning that he doesn't consider me at risk of fracture. This because I am physically active, good balance, good diet etc. I read a bit obsessively about bone loss for a while, and the freaky thing is that something like half of hip fractures occur in women who are not considered to have osteoporosis. In other words, there is more to the matter than just the number. Yoga is your friend. Strengthens bone, improves posture, and maintains good balance.
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Thank you ALL for your comments and stories about Femara. I will have a go at it and try to have a good attitude, until and unless there's a reason not to. Right now I still need to finish chemo and do radiation and my long slog with Herceptin, but I'm trying to figure out what comes next, how this is going to impact the next few years.
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Ugg... today I've been on Femara about two weeks... ache all over and exhausted... don't know if it is Femara, radiation, or fibromyalgia... plus got my first Prolia shot today for osteoporosis. Just grumpy today!
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Well great. I was just called and told to stop the Ibrance. WBC 1.8. Was 3.3 to 2.3 for five months. Now this and stopped. And then I see the Femara which I am also on can lower WBC too.
Am due to begin Xeloda in a week or so WBC willing. But if the Femara is the culprit, then what to do. I am writing the nurse navigator to see.
Also read that the low WBC can make you feel like crup and I have been for months. Great.
Finished last radz today so progress is being made. I can breathe again and right lung is not collapsed on upper lobe.
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Hi ladies,
I'm trying to educate myself before making a big medication change decision. I'd love to hear what you all think.
I'm 45. It's been a year since I finished treatment and started tamoxifen. Before starting tamoxifen, I took Wellbutrin (anti-depressant) for 3 years, which also helped me lose weight. I took the wellbutrin all through treatment, it works really well for me and I was able to maintain a healthy weight all throughout treatment. Well, you can't take Wellbutrin with tamoxifen - it prevents the tamoxifen from working. As a result, my oncologist switched me to Effexor when I started the tamoxifen.
Fast forward and a year later, I've gained 35 lbs. on my 5'3" frame and I'm very upset about the weight gain - I've learned that the weight gain has caused my liver enzymes to elevate and I'm also having more problems with my knees. I've been working at trying to take the weight off and am having zero luck (I'm working with a personal trainer and managing my diet). Add the fact that I really haven't felt much mood benefit from the Effexor....so my GP suggested that I come off of the Effexor, that it might be causing the weight gain. She wanted to see if it was easier for me to lose weight if I was off of it.
One thing no one told me is that getting off of Effexor is the absolute WORST. I tried to taper off for months and could not get off of it. Withdrawal symptoms of dizziness, GI trouble, nausea and headaches made normal life impossible. I reached my breaking point and my GP said change of plans - forget tapering off and suggested I try switching to Fetzima - a new SNRI that acts differently than the Effexor and is a bit more activating like the Wellbutrin.
I started taking the Fetzima 2 weeks ago, the withdrawal symptoms are finally gone and I'm generally feeling good mood-wise. I haven't lost any weight yet, but I've only been on the medication 2 weeks.
Today, I went in for my 6 month oncologist visit and we were talking about my concerns about my weight gain (higher BC recurrence, elevated liver enzymes which causes liver damage/liver disease and joint strain). She said that she thinks the tamoxifen is causing the weight gain, that she sees this in many of her patients.
Her recommendation is that I could switch to Femara with a monthly shot to fully suppress estrogen, then I could go back on the Wellbutrin. Then she started describing the Femara side effects - likely also causes weight gain, more hot flashes/night sweats, the express train to arthritis, likely my knee issues will also get worse from the medication, arthritis in my hands since that runs in my family, etc. Now I'm really scared that if I switch things will likely be worse side-effect-wise.
I've been tolerating the tamoxifen decently well, I have some hot flashes/night sweats but it's not horrific. I'm new to this antidepressant (Fetzima) - which costs like $165/month with a coupon because there is no generic yet. If I switch to the Femara/monthly shot/Wellbutrin combination (which likely also will cost me out-of-pocket), I potentially open myself up to a lot of side effects that I haven't been plagued with yet, plus the inconvenience of having to go once a month for the shot...with no guarantee that I'll be able to lose weight, reduce my liver enzymes, prevent future liver damage and hopefully a reduced chance at recurrence (maybe).
Now that I'm processing this, would I be crazy to do this? I'm squeezed uncomfortably into a size 14 now. I'm 45 years old, work full-time, with a kid in preschool. I'd like to have some quality of life to enjoy things and enjoy keeping up with my child. I don't want to be shot right into feeling like an elderly person.
What would you do?
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Personally I do not think hormone suppression makes sense for stage I or II patients when the side effects are significant. The difference in the rate of recurrence is something like 18% v 20%. However, weight gain and depression have a much stronger (negative) effect on outcomes.
I would study the data and get a second opinion. If you could get off all these drugs and get more energy to focus on wellness ... diet, stress reduction and exercise, you will do much better.
Keep in mind that some women have no side effects on these drugs. For them the small improvement in recurrence rate is probably worth it. However, it is beyond me why Stage I/II women with significant symptoms are on this drug. I know what the symptoms can be because I am on hormone suppression. For me, the hormone suppression symptoms are a bear. It is a full time job to stay active and well on this stuff. But I am stage IV and it's killing my cancer so I deal.
>Z<
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I agree with zarovka. I am struggling with a 20-pound weight gain with Femara. It happened mere days after starting Femara. Nothing helps. Iam not sure why your doc is recommending Femara when weight gain is sooo common. Nobody needs that extra weight. You are a clear example of how damaging the extra weight can be to your health. Stop the madness. You can take those drugs if you need them later, and I hope you don't. You deserve to enjoy your life. (I have NO regrets about not taking Tamoxifen after my early stage bc. I spent time with my son and moved to NYC.)
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Hi everyone. I also agree. IMO the weight gain is just as significant in relation to recurrence. Not to mention liver issues! I'm happy for anyone who does well on anti hormone therapy. I also respect all informed decisions made on treatment options. However far too many women have QOL issues on it. I would love to see more research on better treatment options. My MO at a major NYC university teaching hospital told me 50 percent of us do not complete the 5 recommended years due to SEs. That's just not good enough! Good luck to all navigating this complicated disease.
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I've been reading your posts although I'm about to begin Arimidex next week. I know we are very fortunate that our ER+ cancer can be treated with hormone suppressants. But, I agree and what no one tells us is the potential debilitating side effects of these drugs. 50% of women not completing their 5 years is just not acceptable.
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It does speak volumes about how debilitating these AIs can be when a stage III person like myself, and I know of another one, stops taking it shortly after starting it. 5 weeks was my cap. Feel SO much better on Tamox. QOL is important. I'm 52 and not ready to feel like utter shit with head issues from now if I can help it.
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Arista - Even stage III, my choice would be to focus on wellness because I think you will do better.
I think the fact that 50% of women stay on hormonal treatment is crazy stupid. The number should be LOWER. Women get coerced into staying on them by poorly formulated and conceived guidelines that MO's follow blindly.
Lifestyle changes are the most effective way of preventing recurrence from early stage cancers, IMO. Most people should not be on hormone suppression.
>Z<
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Hi all, say my MO and have taken Letrozole for just over a year. Tried the other two AI's with no luck for about 6 months. It is impacting my ability to work and do things with grandchildren. So I have 2 options take tamoxifen ( even though I've had endometriosis most my life) or do 6 wks Letrozole with a six week break then repeat. My question is has anyone else tried or heard of the the 6 week rotation?
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Outsdorwoman....yes I have heard of the rotation method. I also believe in taking a lower dosage to reduce SEs. Most docs won't agree to this because there are no studies to back it up, and unfortunately probably never will be. Also would help if MOs tested hormone levels to see if a lower dose is working. Just too many of us are suffering on anti hormone therapy. We need to speak up for better treatment options!
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dtad:
You mentioned, "Just too many of us are suffering on anti hormone therapy" but your profile information does not mention endocrine therapy and some of your posts seem to indicate that you declined such treatment. Is that correct or are you currently on treatment and suffering on anti hormone therapy, or perhaps initiated and later discontinued treatment?
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Dtad is doing natural txs as I've seen posts in the alternative tx thread.
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I have noticed that some people who may post in the alternative forum are actually pursuing complementary therapy (i.e., in addition to standard treatment). Others have pursued such therapy after trying and discontinuing standard treatment(s). I reiterate my question.
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Hi everyone. Sorry for the confusion. I declined aromatase inhibitors from the start. There are several reasons why but the main reason is that I already have a debilitating autoimmune disease. I'm not willing to compromise my QOL any further. That being said I empathize with those suffering SEs. I also respect and support all informed decisions made about treatment options. Also I would love to see more research on better treatment options. My decision would most likely be different if SEs were less common. Good luck to all navigating this disease...
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Hi dtad:
Thank you for your reply. I agree that each must decide what is right for them personally, in light of their specific circumstances.
BarredOwl
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To my knowledge there haven't been studies on why some women experience debilitating SEs and some women very few while taking an AI. For example:
- Which fillers have the potential for more severe SEs?
- Are there more severe SEs for women who started on Tamoxifen then switched to an AI?
- Dx after menopause and effect on SEs?
- Late menopause vs early menopause a factor?
- Name brand vs generic brands?
- Chemotherapy vs no chemotherapy prior to starting AIs?
It's counterintuitive when so many women discontinue hormone suppressant therapy due to QOL why these issues and so many more have not been addressed by the medical community. Currently, it's all at hit and miss situation and that shouldn't be acceptable.
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hi there! My question that I would want to add to the list of why some people have more side effects is exercise and or general level of fitness. I took a tamoxifen for three months with a Lupron injection and just switched to femara. I have experienced dizziness, nausea, and a lot of fatigue and bone pain with both medications. My experience is that I felt better after becoming adjusted to the tamoxifen and so I am hopeful that will happen with Femara. What helps me with my side effects is to get moving even though I feel terrible. Even just going for a short walk clears my head and reduces the pain. I also try to work out with weights and High intensity cardio 3 to 4 times a week as well as stretching. I have added in yoga and meditation just in the past week and an effort to reduce insomnia.
I am on this for now looking to see if changing the time of day that I take the medication helps with side effects. When I took it in the morning I could barely get my day started and felt like I was in a huge fog. Now I'm taking it before bed but I can't fall asleep. That doesn't really make sense so I am looking for others experience.
I also wanted to add I have gained two or three pounds in the past couple weeks Of femara.
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