FEMARA
Comments
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HapB, the reason it feels as if we are guinea pigs, is that breast cancer is not just one disease, but many. There isn't one size fits all as there is in many other cancers. AIs have been used for many years now, and while a lot of oncs refuse to acknowledge that some ses aren't from the AI, the majority of women do not have significant ses from the drug. Many also find switching to one of the other AIs help as does changing brands. There are lots of opportunities to try to stay on an AI. Most of the women who do not have adverse reactions wont be posting on these boards, they are out enjoying life and not thinking about the pill they take every day.
If your stats show that you only get a 1% benefit from taking Femara - and you absolutely believe those stats, then your decisions on whether to take it or not should be relatively easy. No-one will tell you what to do though - it has to be your decision and you have to be comfortable with it. You seem to be looking for someone to say to you - yes! those stats are great and this drug is terrible and causes too many problems to be on. No-one is going to do that.
But you need to understand that there are many, many women (and men) who have to take an AI (or have chemo or herceptin) and have no choice, and their stats are pretty terrible if they forego any of these treatments. Continually saying that this drug or that is no good and there is no evidence that it helps will scare the new women and men looking for answers. If you really want to stop taking Femara and are worried about the ses - maybe have a look at the alternative and complementary threads and see what you can do instead of the drug. It might make you feel happier in yourself.
I'm not trying to be confrontational, and truly understand your fear - we've all been there. Some of us are still there. Sometimes we have to make a decision and then move on with our lives.
I truly hope you find a peace with whatever decision you make.
Trishxoxo
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With my stats, there is NO choice but to do a hormonal. With Tamox I'm still 20% risk. Without it, well do the math. Would you honestly say I have a choice? I don't think so when playing the game of odds. But I guess I have a choice. Take meds or go with increasing my chances to get cancer back significantly.
People need to note the hormonals advice given from Stage I vs Stage III members and their risk factors. Just coming in and saying no way for me, new people don't connect the dots like we who have been here for a long while do. Some people don't even fill out their profile. Not sure why. Giving advice without showing your profile is wrong imo. Diet and exercise with no meds doesn't make sense for those of us at such a high risk, and not just the stage. I'm only 52. If I were way older then who knows what I would decide. But to dis meds and scare people who haven't even thought much through it off the bat is wrong esp if someone like me were reading the advice not realizing oh, this person is DCIS or stage I.. Most don't even know what goes into the decision making (age is one) and just get scared and say no off the bat. That's where I have a problem with people just dispensing advice, and not the possible se's which as noted, some people have no real se's. I have 0 on Tamox. Some people have horrid debilitating ones on Tamox. People need to carefully study their profile with the MO to decide the % of possible benefit vs possible se's.
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HapB
maybe I am missing something. Is there any evidence that staying on an AI Letrozole, for more than 5 years increases the rate of disease free survival?
No. I don't think you are missing anything at all. I have been told that the evidence is just not there at present; but i believe there are oncs who prefer women to extend AI's beyond 5 years. I have been advised a switch to tamoxifen, firstly because of the risk to bones and secondly because of the possibility of developing resistance by continuing with Letrozole.
My onc (professor) is will support me in whatever decision I make and I have decided to continue with Letrozole. I am a month out now from 5yrs NED.
I do not know if this is the right decision.
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HapB, sure, we always have a "choice" of sorts. I was DXed stage 3B. At the time most stats gave the 5-year survival for 3B as 50/50 (even if that may not have been entirely accurate). After surgery, chemo and rads, I was left with a large risk of recurrence. I DID change my lifestyle. However, the AI is a statistically proven remedy to reduce recurrence. The benefit you get from the drug is directly related to your risk. The greater the risk, the greater the benefit.
So, if your risk of recurrence is small, 1-10% let's say, whether you take an AI or not, you have a really good chance of living to ripe old age and dying of something else.
Age also plays a role. If you are 70 at DX, and have a small risk of recurrence, then being able to walk comfortably may be a heck more important than the risk of a BC recurrence 10 or 15 years down the line.
I was 48 at DX. Let's just say that I am willing to put up with achy feet for a chance to live something close to a normal lifespan.
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Therd are studies that show increasing Tamoxifen beyond 5 years has survival benefit, and it is assumed that AIs will do the same. I believe those studies are ongoing.
I had a recurrence within 14 months of starting Tamoxifen. I have 50-50 chance of it coming back. To skip AI would likely be a death sentence. Not everyone has a choice. I am grateful these drugs exist.
AIs are being used neoadjuvant in some cases now, and many women are seeing great tumor shrinkage. They do work. Do they work for everyone and on every tumor? No.
Everyone has to make their own decisions.
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I wish I could explain things l learn as clearly as you Momine. For us stage III folks with high risk of cancer coming back, or just a high risk, we should at least give it a shot. And if AIs don't work, Tamoxifen. I'm menopausal and take Tamoxifen. I may try Aromasin but since I have 0 se with T, I'm putting off changing this kind med on me.
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Well said KBeee.
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Does anyone here have fibromyalgia or chronic fatigue syndrome? If so, how have the AIs affected you?
I have been on Femara for five months. Suddenly I don't know if my excessive sleepiness is a flare or a SE!!
Love the discussion on choices. When I started I didn't know there were calculators. I gain a few months by being on letrozole, however this is my second breast cancer and I'm working to make sure there isn't a third.
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HapByour first SE is you've lost track of time! You started Sept 17, about 11 days!
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marijen, Not necessarily. It seems you are looking for things to get people concerned. I lose track of time is what many say, meds or not. Doesn't always mean it's the med. Educating folks on POSSIBLE se's is one thing but flat out stating hey you do have a se is not being responsible..
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It was a joke Artista
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6cats - I have autoimmune issues like lupus, scleroderma and hypothyroid. I became confused with what was an se of lupus and what of one of the prescriptions. I was able with lupus, to realize a flare when it hit. But the general fatigue and pain was a hard call. Take better care than usual to get the extra sleep for healing, it will help.
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HapB, I am sorry about your loss
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6cats...I have multiple autoimmune disease. The worst being an autoimmune peripheral neuropathy which affects my whole body and is very painful. I have chosen not to take an anti hormone for many reasons, however this being the most important one. I would be happy to discuss this in the alternative forum. Good luck to all.
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Hi HapB...have you had recent bone density scan and bone scan .to determine ares of arthritis...or fine fractures
mine is minor and i have excellent bone density ..but i do have some lower back pain ..have had recent bone scan all ok
**Increase calcium and vitamin D is a must
It seems that if you have had chemo and raduation treatment AI can cause more joint pain
All best B
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I have an autoimmune disease and neuropathy and don't find that Femara worsens them at all. In fact, I may have some improvement in that regard.
As for spinal pain, yes, I believe Femara worsens it. Many of us find that we have to keep moving. When I first walk, my spine hurts horribly and I can barely continue but I feel better after 20 minutes or so. A full 45 minute walk ends up making me feel better, usually- at least if the cause is a Femara side effect.
I also do Tai Chi for my neck and back. Slow flowing movements are good, holding postures as in yoga hurts.
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HapB- Have your tried Tamoxifen? I couldn't live with the se's on Letrozole so I'm back on Tamoxifen with 0 se's even though I'm menopausal. I may try Aromasin which works via a different pathway/mechanism and so many find this AI the gentlist one.
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Well yeah if you are at risk for blood clots to begin with then no. I'm at a small risk with keeping my port but I take a baby aspirin a day, ok'd by my docs. I don't have hair loss with Tamox. I don't believe people who say if you aren't experiencing se's that means it's not working. That's silly to me. Meds doesn't = se's for everyone and certainly those who don't have se's do benefit from meds. The problem I see is there is so much fear put out there at the start where people are still trying to wrap their mind around having bc. For many the reflex is not to do more research but to forget it all together, tell MO no don't want to hear it. People like my profile need to be on some kind of med as we are very high risk. So diet, exercise, med and live. Stress can increase your chances too. That's why I don't like how some people do nothing but find studies that show AIs/Tamox have horrible se's all the dang time. The best thing we can do imo is to share our individual experiences (good/bad/ugly) AND our profile so we can match up with someone who is closest to our profile. Just linking negative studies with a oh look!! scares people. Give the se's fine, but the way it's being done by one person is unethical and could be endangering lives. If this person was on the board before me I would be scared to even discuss/research and with my profile, my risk would go up as the calculators show.
Hope you find something. At least you are stage I which is what most if not all people saying no to AIs are. Just don't the higher stages/higher risks to freeze in fear and not even want to discuss meds to maybe up their chances of not recurring/mets.
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Yes on knowing the good and bad. There are facts on possible se's and there are facts on the benefits. All I'm saying is for someone with a high profile risk to not be scared to see that many do benefit and not just that some are debilitated. I've been debilitated. I'm not on Letrozole anymore. So I'm not a med seller for all but I'd hate for new people who are just starting the journey to be frozen scared. Not just with these meds, but chemo, rads---all of it has possible se's which are horrible for some while bearable for others. That's why I think people need to fill out their profile so we can match up who is similar to ourselves to see how they decided what they did. These folks who don't put their profile for us to see well it's hard to align with when you don't know if they are similar to your profile or not. I've never said just go with the doc. I'm all for digging. But to do nothing but dig up studies about nothing but horrible se's is giving 1/2 the facts by leaving out the other side of the coin of folks doing well and not recurring. It would be grand if there were a way to tell if stuff is working or not. I'm not a pill popper and would stop Tamox even though I have 0 se's if someone said it's not working on me. I didn't take Norco after my surgeries. I was able to get through the pain which wasn't too bad with otc stuff for the first couple days. So yeah, I hate meds and only pop what I need to in order to live my life as fully as I can.
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Giving our individual experience with what ever we are given is always good whether it's good bad or ugly. I never said not to. Fill out your profile and share away so the newbies can go oh this person has a similar profile to mine, and it may spark a convo or pm on what they did or didn't do and why. Gain more knowledge to take to that person's MO to apply it to that person's particular profile. I think my point may be getting missing. We all need to share our experiences. That's more important imo than throwing all these research studies one after another like bombs in the air all of which are negative. And I hate to say it and don't aim this at anyone here, but not everyone is as intelligent as we'd like. My friend is one. She shuts down so easily no matter what you say to her. One thing wrong and it's over. So there are all kinds of people out there we need to consider as well, especially when dealing with a life threatening disease which has no cure.
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Nothing wrong with reading studies, good and bad. I think you're missing my point. Also I know my pcp is interested in this site to educate herself. She doesn't know who Artista928 is. I could make it more vague by leaving out my location. I don't see how making up some word for your user name and not filling out where you are how someone can tell it's you. But like for me and some others, we don't see a profile and we don't really read what that person is saying. We want to read about people's experiences close to our own profiles. I don't read triple negative or trip positive posts, etc. Most of us are interested in making decisions about our own situation looking at those who have similar profiles as ourselves. I have bookmarked some folks close to mine and check their profile when I'm on here to see what new posts they've made. Also VERY important to know people's age at diagnosis. Age plays a huge role in such decisions.
Good luck to you and to all navigating this dreadful disease.
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BB with all due respect it's a bit different not wanting to tell my fam other than my bro because they would drive me insane vs sharing on this board one's experiences in hopes of maybe helping someone. I can see if you are afraid someone will steal your laptop, phone or something like that where you have this site linked on it. No one has access to my phone or laptop so I have no worries about anyone finding me on this site. As a matter of fact, my mom was DCIS at age 72 1.5 years after my dx. I gave this board's link to my bro to give to her (saying his friend has bc) so she can find people similar to her profile and age to see what they are doing or not doing. The only thing I did to ensure she wouldn't find me is to change my photo. I used to have my guinea pig Mooshy as my photo and that would be a dead on busted. I didn't change my name despite 928 is my birth date. She's been on this site. Have no idea as who and was very please to hear from my bro that she got some perspective to bring to her MO. She doesn't visit anymore since she's doing well on an AI, not sure which one, and finds these boards depressing, which is true because most folks doing well with minimal to no issues are not here anymore. So it kind of gives a false representation that man, so many people are struggling. That's what I thought when I came on. The folks who helped me are long gone doing well. I wish everyone well of course.
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HapB- Thankfully my mom and dad live far away. Extended fam don't insist that I go visit so I don't. They think differently than me which causes me much distress. Bro and I are very similar so that's why he was clued in and was great all throughout. No lectures, no advice esp on something he has no clue about- just much love, peace, and I can talk to him any time I needed to just to vent. No way that would fly with my fam. So I was lucky that way with the kind of fam I have. Should they find out some day then so be it, but right now time is passing since dx and so the terror of it all would be felt less the further out I am. I do keep tabs on my mom via my bro (she didn't want me to know) so I do some digging on the DCIS ER+ front at times to try to give her info to take to her MO on follow up visits. She's not very good at digging at all. Her english is ok is another problem so she gets frustrated and with bc being depressing, she tends to chose to shut down at times. So I'm careful with pointing out the scares for her since she is high risk, and she's doing well on an AI. She may suddenly come up with a se that wasn't there and really isn't there. She's that way. That's why I say use caution with studies and people take it as gold, like my mom would. She looks for the bad before the good unfortunately so her mind is pretty set beforehand. Tough thing for us kids to deal with for sure, and with this disease. ugh
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I agree with you Artista that profile info is essential. That's what I'm always looking for when I'm on here seeking information. Who is like me? Age, stage and comorbidity do matter when making decisions. I can understand someone who is at Stage 0 or 1 deciding not to take an AI, but for us who are Stage 3 or 4, it's a very different consideration. Everyone is different and that must always be mentioned so newbies aren't immediately terrified by bad SEs some, but not all, experience. For instance, I was on Herceptin for 18 mos. and the only SE I experienced was a drippy nose that I was happy to take, and now it's gone. I think it's very possible to hide one's presence here and be anonymous to the outside world even with a stated profile.
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Well said Bismiller. I have no idea how people think they will be found out by filling out their profiles with a user name of "fish" for example leaving out location. So that doesn't fly with me. They are being disingenuous and if giving advice, unethical. Newbies do not know age matter, stage matters, ER, Her 2, etc. I know I didn't. But someone here told me to look at profile when taking in any advice. It sounds so logical but when you are a newbie, you are reading typically the negative posts like se's and not paying attention to any of us who didn't have such a bad time whether on chemo, rads or meds.
I would love for someone who refuses to put their profile up to explain to me how they may be found out if they post like what I said above. I'm waiting......
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I respectfully disagree. As a newbie we are all looking for people who have a similar profile to our own to see what they do or don't do. As a newbie, you have no clue like I said. Just talking about se's of something isn't the complete story on why you aren't on something. Maybe you are stage 0, 1. Ok, makes sense now. But we don't know that when 0 profile filled out. Many of us jump ahead and not just read where we are at, to learn more. There is nothing better than learning from someone in your shoes or close to it which how would you know if no profile or close to your shoes. Newbies do not know this. They are going through threads quickly to see what to expect. Why not make it easier for them to spot someone similar to themselves as well. I don't get this. And I'm still waiting for the answer for those who are worried about being found out irl by using a random word or made up name and if still worried, eliminate the location.
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MO gave me a choice on Arimidex or Femara to be added to Xeloda. I did pretty well on Arimidex and horrible on Femara, so no question. I am still looking at options besides these, incl complementary. But am wondering if the Femara is more tolerable without the Ibrance. Will be reading pages for info.
Read the discussion on dx listing or not listed. I spent three yrs I think w/o my tx listed.
As far as studies and reports. To be considered is reports are doctors who have a patient or a few patients with sthe same results or issues ---- and rthey the doctors eport the experience of that patient because the doctor deems it valuable to the progression of the understanding of the drug or drug combination being used. It may not be a personal experience from a patient like we do when w share, but it is an experience of a patient and the report gives details that we usually do not even know how to explain, at least most of us. Most reports are not negative to the drug, they are quite often information on the patient say... becoming toxic for physiological reason that few patients have to deal with. But the help this gives us as patients is so needed! We might find that tidbit that doctors overlook or are too busy to consider. And we can bring it to their attention. It is after all team work. Studies are much of the same though these are usually based on many patients. Such as trial studies, I suppose. I read reports and studies like they are a fiction novel, in that I devour the information needed. But that is me. Some people don't know they exist or don't know how to take them. Ours is the responsibility to share what we know, in my opinion. So that people make more fact based and knowledge based decision and not decisions based on a television commercial.
Overall, our personal experiences as BCO members are the most informative and easiest to comprehend. But what we can share of what we learn, I feel it is our responsibility to share and hopefully in a personal context.
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hapB to be honest there are times when I have trouble getting up or walking...in the last few months. I do understand. But I do wonder if the Herceptin contributed or is contributing to your situation and it is not all the AI.
I don't know anything about your cancer and assume you didn't have an Oncotype. Do you know your risk with and without an AI?
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That's a good point about newbies, so I wanted to chime in and remind them that not everyone gets SEs. I have been on Femara for about 18 months with no significant SEs. My cholesterol is good, bone density still in the normal range, and my aching joints are no worse than they were before starting Femara. I do have a little hair thinning and a bit of mind fog (searching for words) but not nearly enough to think about stopping. It's true that many women do have significant SEs on this drug, but the point is that you won't know until you try them, and even then they may not show up for a while. I'm >95% ER positive, so even if I get SEs at some later point, I figure the few years of medication will benefit me.
Have a great day everyone!0 -
Hi everyone...also want to remind newbies there is a thread titled doing well on anti hormones. Good luck to all.
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