FEMARA
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Femara. I have been on since Feb of 2022. Herceptin and Perjeta infusions started April 1st every 3 weeks. 2 weeks ago started on lynparza. A chemo drug. I do not think I have been on any of your side effects. Except, lynparza was with me this time with H&P and nausea.....just feeling it. Nausea is no fun. With infusions I used my Zofran 3 days each week of infusions of chemo. Now taking one at least 2 times a week. Must remember my laxative as well. I was told to take more if need be. Manage symptoms I was told. A day at a time.
Drink water!! Half your body weight.!!
Oh yes, twomonths, almost 3 into blood clot with Eloquis pills. Better?
Just told by PA yesterday that my arm pain is lymphadema. Really????
Trying to manage all. If I need a nap, take one.
My journey started June of 2021. One year.
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I had stage one breast cancer, small tumor, so lumpectomy and 19 high dose radiation treatments. Tumor was estrogen receptor positive, so have been on Letrozole for 4.5 years and the joint pain is nearing unbearable. My oncologist is now recommending 5 more years. About two months ago, I took a three week break from Letrozole and within a few days, my pain was minimal. When I started it again, my pain returned. Saw my oncologist again and got results of Breast Cancer Index which said I would benefit from 5 additional years also, but my chances of a reoccurence would be 3.2% if I did not take an additional 5 years and 1% if I did. (I had to email BCI to get this information as my oncologist did not explain the statistics to me at all.) I teared up in the office and I guess that's when she finally realized how bad my pain was so...she told me to stop Letrozole for 3 weeks and the start on Anastrozole and maybe it will be less. On this break right now, and my pain is worse than it has ever been now. I don't understand why??? My first break was nearly pain free. I know I need knee replacements. Steroid/gel shots no longer work, but I am afraid to have knee replacement while taking an aromatase inhibitor. I read one post on here that said her knee replacement was not good and her surgeon agreed that it was because of Letrozole. I would like to hear from others that had knee replacement while taking an AI.
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Rock and a hard place. Working hard at PT for hip replacement which was 6 weeks ago. Takes much time with all the exercises. But my dilemma , since hip on xray is well placed and fine except for a small amount of "heterotopic ossification(who knew such words?), which leads to stiffness and some inflammation. I need to resume taking Arimidex after a 4 month break. Am afraid of the inflammation and stiffness it will cause and not knowing whether the joint pain is from the hip or the pill. Had been on the pill for 3 years and must continue for 2 more. Worried about it's possible interaction with hip. Certain MO will say to resume. PT says wait 6 weeks to see if she can get stiffness and inflammation down with hip Surgeon advises anti inflammatory which I can't take due to low platelets..Guess I'll consult PCP and worry about it all.
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keywestfan: Sometimes the benefits of trying to prevent a recurrence are outweighed by other factors. Getting mobile again seems like a much more immediate concern. If you want you can resume the Arimidex in the future when the pain and inflammation subside. In any event, while AIs statistically help prevent recurrence there is no guarantee of that. Best wishes making your decision.
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Thank you, maggie 15. This is what I’ve been thinking, but am confused about what decision to make. Forgot to mention, though maybe not relevant, that I’m 88
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Hi keywestfan, At your age I would worry more about QOL than a recurrence. I'm 70 and decided to "roll the dice" (increasing my odds by 8%) and not take AIs to prevent aggravating my arthritis and osteoporosis. I told my MO I would take them if the cancer returned. My late mother and four siblings have 11 hip replacements between them so I am aware of the PT work and time it takes to get back to regular walking. You seem to be doing well for your age; I have a grandmother who lived to 103 as well as an uncle who is 97 and an aunt who is 93. That aunt had her second hip replacement at 89. It took her longer to recover from that than the one she had at 78 but she is doing fine now. I hope your recovery goes well and you have many more years to enjoy.
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Gardengurl, I just started too. I have a schedule to start slowly. Once a week for two weeks, twice a week for two weeks and so on. So I have just had the one dose so am starting around the same time as you. I took Arimidex for 5 years after my first BC 18 years ago. It was tough but did get easier after the first year.
I already take GERD medication so not sure if I would pick up that side affect. I'd like to keep up with you since we started so close. Thinking of you!
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Kampiecutie, I ended up switching to Aromasin but currently on break because of multitude of side effects. If I resume these meds, I’ll start slowly. Thank you you for the tip. I’m sorry your going through this again. Hugs
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Gardengurl, Let me know how it goes. My MO said it should be easier this time with femera. Honestly I am so thankful I had 18 years without BC! My youngest was 8 last time and is now grown and happily married! Of course there are challenges now with BC and I have my stresses but it was much harder last time. I had chemo and mastectomy then. Now, because I was watched closely (I have the BRCA2 gene mutation) it was caught so early I just needed surgery…oh and femera. I have thoughts all over the place about taking an AI. I feel fine now…but once taking it I will be achy…possibly have bone density issues and raises cholesterol. I am in the low high range now and take atorvastin 10mg. At bedtime. So we’ll see! Arimidex helped last time so I will give it a go…for now. Just sharing some thoughts.
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I went back on Letrozole a week ago after meeting with my new MO. The past three nights I have woken up with severe knee pain in my right knee. I have osteoarthritis in that knee, had cortisone injection a year and a half ago, then a series of three injections of a jell, exactly one year ago. The jell injections really helped my knee. Last spring I experienced subluxation in that knee (a different issue than osteoarthritis) and did 8 weeks of PT. All was well until I went back on Letrozole.
The pain at night is excruciating and I can hardly bend my knee. I get out of bed walk around a bit and it gets better. I got up about an hour ago from the pain, about 3:00 AM, and it is still sore, but not excruciating.
I don't know if this is coincidence or due to the Letrozole! Ugh! Not sure who to call about this, my MO's office, or my orthopedic doctor. Or, do I just wait and see how if this is a permanent trend? I will most likely wait a bit, but I have a feeling it is from the Letrozole. As if having breast cancer wasn't enough! sheeeeesh!!!
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Mavericksmom, I think because you were stable but then when you started Letrozole it worsened…I would call MO. And it wouldn’t hurt to let ortho know if MO doesn’t think its from med. It sounds awful! Please know I am thinking of you and I hope you have less pain really soon
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The knee pain lessened, but now I find myself increasingly depressed. I was so happy and upbeat and positive before I had surgery in October. I have been on Letrozole about 3 weeks and my mood has changed noticeably.
Of course, I have ups and downs like everyone else, but this is different. Fall and everything leading up to Christmas is my favorite time of the year, but not this year. It is a challenge to even start putting up Christmas decorations, my heart just isn't into it!
Anyone else feel depressed on Letrozole/Femara? I am guessing it is not the actual drug, but from the altering of hormones. I have an appointment on Tues with my PCP, so I will tell her about it. If she thinks it could be from the Letrozole, I will call my medical oncologist to see what I should do.
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mavericksmom - Yes, I think I know what you mean about Letrozole and depression. Like you I've always had my ups and downs, "but this is different." I started on Letrozole in Jan 2020 and my mood went down fast. I agree with you that it is from the low estrogen levels, and I don't really have a solution. I find that taking a walk several times a week can help, and just talking to other people about anything and everything - even the grocery store clerk type exchanges make me feel better(!). I've been pretty isolated since Covid and really do miss the contact with other people. I also use a "happy light" every morning while I web surf and read the news, etc., but I've done that for years and years, and while I know it still helps, it too is different since the letrozole. I know it still helps, because on the few days that I have not used the light for various reasons, within a couple of days I really notice the difference and it is much worse than before letrozole.
The other thing I've done for years, even before cancer, is to take SAM-e. It helps lift the mood a bit, but also helps with joint aches, etc., so I have continued it since cancer treatments. It too is now different since Letrozole, and I'm sure it helps, but the letrozole makes my mood "darker and different" than before, even with the SAM-e. There's also the joint aches that come with Letrozole and that I think the SAM-e continues to help even though they are far worse than before letrozole. Interesting, I have read since starting all the cancer treatments (in fall of 2018), SAM-e actually appears capable of slowing the spread of breast cancer, at least in rodents, so it's one more reason that I keep taking it.
I've also read that they have done studies that show benefit with the "happy light" for both lower mood and fatigue that comes with cancer treatments, so I just trudge on with my old "tried and true" helpers of walking, happy light, and SAM-e, but all three of those things that I've employed for decades of help with mood are noticeably less effective since Letrozole, and as you said, the down mood of Letrozole is different than the usual down of general ups and downs. The letrozole down is truly unique.
So far though, I have declined to get into prescription anti-depressants and am content to keep doing the non drug things that I do. I don't think pills on pills and side effects on side effects is the answer. Finding an alternative to these AI's is what will be the answer.
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threetree, thank you for sharing! I completely agree with you!
I have said for years we need something different than AI's! I feel when they discovered the connection between estrogen and breast cancer they just made different versions, easier than looking for something new that DOES NOT MESS WITH HORMONES!!!!
Honestly, I don't know how long I will stay on Letrozole. My mood seems better today, but not like before Letrozole. I am going to talk to my MO about it. I actually feel that regardless of side effects, messing with the hormones is bad! I am angry that doctors make us feel if we don't take them, we will get breast cancer again. They are all suckered into pushing these IA's and to be fair, most of the doctors have seen patients they came to know and like die from recurrences, so when AI's are the only available option to reduce that, they "throw us all under the bus" hoping it will actually safe us. But does it? We definitely need more research for different and better treatments!
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Mavericksmom - Yes, I absolutely agree: Don't mess with the hormones. They need to find something that just eliminates/kills all the cancer cells. All these other things just seem kind of band aid and are not designed to just plain old get rid of the cancer, and it does indeed seem to side track all the researchers from the actual task at hand.
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threetree and mavericksmom, I have tried all 3 AI's since 1/20. The latest one was Exemestane. I had less joint pain but holy cow! Mentally I felt very dark, was forgetting things and often couldn't keep my train of thought. I am coming to the conclusion that wiping out all of your remaining estrogen (I'm 65...can't believe I have much left anyway) is not good for other organs, like my brain! I've given these drugs 2 and a half years and unless the dr can convince me in Feb to start again I am done. I feel for all of us that are struggling to try and make the right decision when it seems there are no good choices. Best to you all.
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threetree and mavericksmom, I have tried all 3 AI's since 1/20. The latest one was Exemestane. I had less joint pain but holy cow! Mentally I felt very dark, was forgetting things and often couldn't keep my train of thought. I am coming to the conclusion that wiping out all of your remaining estrogen (I'm 65...can't believe I have much left anyway) is not good for other organs, like my brain! I've given these drugs 2 and a half years and unless the dr can convince me in Feb to start again I am done. I feel for all of us that are struggling to try and make the right decision when it seems there are no good choices. Best to you all.
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Ladies I have been on Letrozole for two years. I had some hair thinning - not bad. I have some sore hands, but Asperecreme helps I have taken it at bedtime and that helps. Let me tell you a secret though. I had my lumpectomy in 2011 and I did a course of radiation. I did however not take an AI. Eleven years later just when I thought breast cancer was in the past, I began having rib pain after moving a piece of furniture. After a month of complaining, my husband who is an MD arranged for a CT scan. To my horror it turned out I had extensive bone Mets. I have been on Letrozole for two years. It is no longer working so well, so I move on to the next line of treatment. That is going to be much more harsh than the Letrozole. My advice is take the AI and try to put the side effects into perspective. We all go from being normal to one thing after another. I hope you keep the sneaky breast cancer cells at bay and do not have to deal with Stage IV. Be well. love, GiG
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Ladies I have been on Letrozole for two years. I had some hair thinning - not bad. I have some sore hands, but Asperecreme helps I have taken it at bedtime and that helps. Let me tell you a secret though. I had my lumpectomy in 2011 and I did a course of radiation. I did however not take an AI. Eleven years later just when I thought breast cancer was in the past, I began having rib pain after moving a piece of furniture. After a month of complaining, my husband who is an MD arranged for a CT scan. To my horror it turned out I had extensive bone Mets. I have been on Letrozole for two years. It is no longer working so well, so I move on to the next line of treatment. That is going to be much more harsh than the Letrozole. My advice is take the AI and try to put the side effects into perspective. We all go from being normal to one thing after another. I hope you keep the sneaky breast cancer cells at bay and do not have to deal with Stage IV. Be well. love, GiG
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Gigil - Thanks very much for your input and so very sorry to hear what has happened in your case. I wish you the absolute best of luck with your new treatment regimen.
This is just a no win for all of us in this situation. I get lots of chest and rib pain ever since surgery in 2019, and have had scans last spring and just a couple of weeks ago - they always determine that it is muscle and joint related (myalgia and arthralgia) from the mastectomy, radiation, and letrozole. I'm actually coughing a lot this morning from post nasal drip and it's really causing a lot of chest pain, but I'm pretty sure if I go see anyone, they will tell me it's my muscles again. I hate that you have to go get a scan to figure it out! As much as I hate this AI and it's side effects, I just trudge on, because of stories like yours and the statistics, etc. My tumor was pretty large, stage 3B, and I am super ER/PR positive - the ideal candidate for an AI, unfortunately. The problem is that people who take it faithfully recur and progress too, so even when it comes back, there's no way to know if the continued AI would have helped or not. It could have been "destined" by genetics, or whatever to come back anyway. This really is all just a crapshoot, until they can find some way to just plain kill all those cancer cells outright.
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Gigil - Thanks very much for your input and so very sorry to hear what has happened in your case. I wish you the absolute best of luck with your new treatment regimen.
This is just a no win for all of us in this situation. I get lots of chest and rib pain ever since surgery in 2019, and have had scans last spring and just a couple of weeks ago - they always determine that it is muscle and joint related (myalgia and arthralgia) from the mastectomy, radiation, and letrozole. I'm actually coughing a lot this morning from post nasal drip and it's really causing a lot of chest pain, but I'm pretty sure if I go see anyone, they will tell me it's my muscles again. I hate that you have to go get a scan to figure it out! As much as I hate this AI and it's side effects, I just trudge on, because of stories like yours and the statistics, etc. My tumor was pretty large, stage 3B, and I am super ER/PR positive - the ideal candidate for an AI, unfortunately. The problem is that people who take it faithfully recur and progress too, so even when it comes back, there's no way to know if the continued AI would have helped or not. It could have been "destined" by genetics, or whatever to come back anyway. This really is all just a crapshoot, until they can find some way to just plain kill all those cancer cells outright.
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Gigil: I'm sorry that your cancer recurred and you have to deal with the "whack-a-mole" situation of navigating stage iv. I hope your next treatment stops progression for a long time.
Threetree is right when she says that whether or not AIs stop recurrence is all a crapshoot. The study of probability and statistics actually evolved from gambling and is based on large numbers of events, not just one. I taught math for 49 years and would be doing it still if I didn't have to retire for health reasons. This is how I would explain recurrence statistics to my students.
For example, your oncotype or MO tells you the risk of 9 year recurrence is 6% if you take AIs and 10% if you don't. This is like walking into an empty auditorium with 100 seats on the right where 6 have an invisible X under them and 100 seats on the left where 10 have the invisible X. If you take the AIs you choose a seat on the right, otherwise you pick one on the left. If your seat happens to have an invisible X your cancer recurs, otherwise you are in the clear. When you leave, the invisible Xs are randomly rearranged for the next person so it's no use telling them to avoid the seat by the aisle in the front row. The recurrence statistics change depending on the time frame and tumor characteristics so this example is only a snapshot in time. Unfortunately, when something happens to you it is 100%.
Depending on your age, other medical conditions, recurrence numbers and anxiety level it seems reasonable to me to skip the AIs in some situations. I was 69 at diagnosis and have several medical conditions AIs could make worse including osteoarthritis in my knee, hand and TMJ. At times I hobble around on a cane, can't sign my name and have to eat a soft diet so I chose not to take them. If I were younger and didn't have other issues I would have made a different decision. If the cancer comes back I will take AIs even if I end up in a wheelchair. My hope is that everyone makes the best possible decision for themselves and has luck on their side.
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Gigil: I'm sorry that your cancer recurred and you have to deal with the "whack-a-mole" situation of navigating stage iv. I hope your next treatment stops progression for a long time.
Threetree is right when she says that whether or not AIs stop recurrence is all a crapshoot. The study of probability and statistics actually evolved from gambling and is based on large numbers of events, not just one. I taught math for 49 years and would be doing it still if I didn't have to retire for health reasons. This is how I would explain recurrence statistics to my students.
For example, your oncotype or MO tells you the risk of 9 year recurrence is 6% if you take AIs and 10% if you don't. This is like walking into an empty auditorium with 100 seats on the right where 6 have an invisible X under them and 100 seats on the left where 10 have the invisible X. If you take the AIs you choose a seat on the right, otherwise you pick one on the left. If your seat happens to have an invisible X your cancer recurs, otherwise you are in the clear. When you leave, the invisible Xs are randomly rearranged for the next person so it's no use telling them to avoid the seat by the aisle in the front row. The recurrence statistics change depending on the time frame and tumor characteristics so this example is only a snapshot in time. Unfortunately, when something happens to you it is 100%.
Depending on your age, other medical conditions, recurrence numbers and anxiety level it seems reasonable to me to skip the AIs in some situations. I was 69 at diagnosis and have several medical conditions AIs could make worse including osteoarthritis in my knee, hand and TMJ. At times I hobble around on a cane, can't sign my name and have to eat a soft diet so I chose not to take them. If I were younger and didn't have other issues I would have made a different decision. If the cancer comes back I will take AIs even if I end up in a wheelchair. My hope is that everyone makes the best possible decision for themselves and has luck on their side.
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Maggie15 - Wow, to hear a "math person" say that I got anything right is mind blowing (smile); especially if it relates to probability and statistics. It was my worst subject ever, and I barely passed the minimum class requirement to get into college. All my other subjects were above average or tops, but math - yikes!
Anyway, thanks so much for posting the explanation that you did. I do find those "100 people in a room" explanations fairly palatable for my non-math brain. Beesie gave a couple of examples like that before too, and they do help with the understanding. You gave a real good picture of how this works. I had never thought though, about the idea of the seats with the X's then getting re-jumbled. It just makes making the big decision about whether to take these so hard. Talk about a rock and a hard place - ugh.
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Maggie15 - Wow, to hear a "math person" say that I got anything right is mind blowing (smile); especially if it relates to probability and statistics. It was my worst subject ever, and I barely passed the minimum class requirement to get into college. All my other subjects were above average or tops, but math - yikes!
Anyway, thanks so much for posting the explanation that you did. I do find those "100 people in a room" explanations fairly palatable for my non-math brain. Beesie gave a couple of examples like that before too, and they do help with the understanding. You gave a real good picture of how this works. I had never thought though, about the idea of the seats with the X's then getting re-jumbled. It just makes making the big decision about whether to take these so hard. Talk about a rock and a hard place - ugh.
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thank you everyone for thr kind words. The next conundrum I have is a Ibrance. From everything I read it average progression free time in the area of 4 months. It costs a small fortune. Maggie15 what does your mathematical analysis say about that? It just doesn’t make sense to me. I would appreciate your input
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thank you everyone for thr kind words. The next conundrum I have is a Ibrance. From everything I read it average progression free time in the area of 4 months. It costs a small fortune. Maggie15 what does your mathematical analysis say about that? It just doesn’t make sense to me. I would appreciate your input
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Hi Gigil: Accurate statistical analysis depends on having a large "unbiased" sample size. As an experiment in a class of 25, students would toss a coin 100 times and record their results. There was always someone who got 90 heads and 10 tails while another person would get about 10 H and 90 T. When all the data was put together, however, the experimental results would be extremely close to 1250 H and 1250 T, the theoretical probability of 50% for a "fair" coin.
Clinical trials are very picky about who they enroll so as not to influence the results by other medical issues people might have. I think the clinical trial results of Ibrance put disease free progression at about 24 months. In the real world, however, Ibrance is used on people with other comorbidities and those who are very sick, making it less effective. In fact, trials have been done which show Ibrance and AI/SERD is much more effective as an early line treatment rather than a later one. Also, Ibrance was not effective at preventing recurrence in earlier stage bc or progression in lung cancer. You are starting it early (second line) so your results are likely to be better. You might want to check out the Ibrance thread. I bet you'll find people for whom it has worked many years, some for whom it didn't work at all, and everything in between.
The astronomical costs of these new drugs for small patient subsets are allowed because they pay for all the research costs of the drug companies. Many potential treatments don't pan out so those that do pay for everything. Eventually generics are allowed which brings the cost down. For those not on Medicare there are charitable programs which help defray the cost for people who can't afford the copays. Medicare makes you ineligible for those programs. Even when you end up in catastrophic coverage paying only 5% it can be very expensive. Thanks to a bill recently passed by congress there will be a yearly maximum out of pocket limit for Medicare enrollees in 2025.
If H is progression free time I hope you are a person who tosses 90 H. Best wishes for success with Ibrance!
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anyone experienced shoulder pain during arm movements as well as arm movements limitations? This is 2 month I have it. I take letrozole for three years and I have early stage osteoporosis. My recent blood tests are good. Anyone had such experience and how long it took before going away.?
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I found this physician podcast really helpful in understanding my joint pain and where to look for treatment.The podcast indicated different possible treatment paths for AI related joint pain depending if you
1) just started having pain despite healthy joints, and
2) had pre-existing osteoarthrosis or other conditions whose conditions are exacerbated (by the drug)I'm a former runner with osteoarthritis. I stopped running over a decade ago due to pain and loss of mobility in my knees. After a gel injection (sodium hyaluronate), I have been mostly pain free and able to bike and lead an active life. At different times during my 13 months on Femera I had arthritis flares, shin aches, and nausea level joint pain. I was confused about whether to just treat the pain and try to live with the loss of mobility or treat it as arthritis and seek orthopedic interventions. I have been told based on my xrays I don't need knee replacements yet.
I called my MO this month and they took me off Femera for a three week break before switching to another AI, but didn't give me any direction on treatments beyond suggesting acupuncture.
After listening to the podcast, I believe I am in group #2 and am working with my orthopedist to get gel injections. If these aren't effective, I plan to pay for PRP (platelet rich plasma) treatments. I want my mobility and active lifestyle back.
Hope this is helpful.
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