FEMARA
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This is the second therapy I have been on and both have given me sever reaction. This time I have lost 12% bone density in 8 months plus the pain and a lot of other things. I hadn't been happy with what it is doing to my body long term and now I know somewhat.
If it returns I will deal with it. As I said to todays onc If it was for a year I would stick it out but this for 5 years no.
KarenAus
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I had a 12% chance of developing bc, yet here we all are. I had no more than a 20% chance of getting cording & lymphedema, yet I got both (albeit mild). With letrozole (not chemo), my recurrence chance is about 8-10%. Scary enough. Without it? Well, 30% higher than that is not a trivial increase. (Might even be higher than 30% increase—where did that figure come from anyway? I’ve heard that skipping endocrine therapy might even double the risk of recurrence—an unacceptable chance to take, IMHO). I’d rather ache, have trigger thumbs & night sweats and gain weight than undergo a painful death. If I have to have pain, I’d rather be in pain and alive than in pain en route to a rendezvous with the Reaper.
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I found great relief from muscle and joint pain with turmeric. Everyone should research it and then talk with their doctor. I take Gaia turmeric, which has the black pepper already in it, along with magnesium glycinate and found my SEs reduced to tolerable level. I also try to exercise, even if just taking a walk, every day and I do gentle stretches every day.
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My point is that consistent moderate exercise, a good diet and a positive outlook have also been shown to improve outcomes by ~30% in many many studies. If the letrozol has you up against the wall so you can't live well, it's counter productive. Even if it provides some protection against cancer, that is offset by the damage to your lifestyle and the direct consequences that has promoting cancer.
I am fighting hard to stay on letrozol and live well. I am mostly succeeding. But MOs underestimate the side effects and their ability to PROMOTE cancer. We are right to weigh, for ourselves and our health, whether it makes sense to soldier through. For those who are early stage with serious side effects are right to consider stopping letrozol.
>Z<
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The first time I was on letrozole, I had terrrible SE's so when I was told that I would have to go back on it I declined. But because I'm on a trial, it was take it or leave the trial. But my MO was very conscious of patients having bad reactions & she specified the brand name. I also had the same trouble when I took tamoxifen, I had to try several different brands til I found one that my body didn't react to the fillers. Those who are having severe SE's may want to try this before giving up on them completely. It took a long time for me to figure this out, but now I barely have any issues.
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KarenAus, sorry you are suffering so much. I hope your MO can offer other options for you
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I was just re-reading the study used to support keeping women on Letrozol for 10 years rather than 5. The study says that 95% of the women who took letrozol didn't have a recurrence while 91% of the women who took the placebo didn't have a recurrence. The difference is 4%. Letrozol made a statistically meaningful effect on lowering the recurrence rate.
But 4%? If you are suffering on letrozol, you might consider rolling the dice.
I find that when you dig into the clinical studies that are the basis for these recommendations, the statistical basis, which valid, is still very small.
>Z<
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kath1228 thanks for the suggestions. I do take magnesium which helped with muscle cramps but hasn't done much for the joint pain which continues to get worse. I'm starting acupuncture on Tuesday. If that doesn't work, plan to talk to onco and explore other options or stop all together.
Prior to my oopherectomy I was on tomoxifen and had no side effects. Is there any benefit to tomoxifen for post-menopausal women instead of an AI? I know AI is preferable, but would Tomoxifen be better than nothing?
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Yes, Poodlelover. If you tolerated tamoxifen well, definitely ask your onc about using it now. The aromatase inhibitors are somewhat more effective, statistically speaking, but that does not mean tamoxifen is not an effective drug, especially for ER+ PR+ IDC. And in postmenopausal women it actually can improve bone density.
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Poodlelover---I am postmenopausal since a hysterectomy in Jan 2015 and am still on Tamoxifen. Both my BS and MO are quite comfortable with this saying the AI would give me just a 2-3% reduction in risk of BC over the Tamoxifen. Both felt that since I do pretty well on Tamoxifen that the increased SEs of an AI like worse joint pain weren't really worth the swap. Next fall I will be at 5 years NED and my MO is going to do the Breast Cancer Index test which measures the efficacy of Tamoxifen for years 5-10. Depending on those results, he will then either keep me on Tamoxfien, swap me to an AI or take me off hormone therapy all together. The oncotype test is good for years 1-5 and the BCI test for years 5-10. You definitely could go back on Tamoxifen. Most MOs feel that something is better than nothing.
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I've been on Femara for 8 months. Most SE's (wrist pain, minor hot flashes) have subsided. One thing I DO notice is that the hair on my legs has virtually stopped growing. And I no longer see any hair growth under my arms. Granted I'm 13 years post menopausal but before Femara, I was doing a heck of a lot more shaving than I do now. (Not complaining, of course!)
Anybody else notice this?
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Sunnyone, I am a Letrozole drop out (went back to armidex after 4 days on Letrozole) but yes, I am shaving less also. I hate to suggest that it might just be a function of our age.....but maybe.
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Definitely less hairy everywhere for me. The pain has just started to multiply and I am in month 11. For a while, it was much better than the aromasin (exemestane) and now, it hurts just as much but in different ways and the hot flashes and urinary incontinence are driving me NUTS! Without the pads they sell, I would be in big trouble, especially since I work full time!
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Is anyone taking Roxane and unable to get it right now due to the manufacturer back order? At least that's what I'm being told by CVS. Or are you still able to get it? As far as generics go that's what I would like to try. I'm currently on Femara but come January 1, not only will I pay a $50 copay but I will also have to pay the difference in cost between the brand name Femara and the generic if I want to continue on Femara. Grrr. Any other generics I should consider? Thank you for any help
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I tried Teva brand letrozol based on the recommendations on this thread. Although my symptoms did not disappear, I am doing better ... a little less spacy, a little more energy, a little less pain.
Teva is worth a try.
>Z<
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Amy, I'm taking Teva and my pharmacy said there are "allotments" so sometimes it takes a week until their turn for an allotment comes up. My insurance lets me order refills when 80% of my prescription is gone so I always order on the first day possible just in case it takes a while to come in. As a plus I'm now about 30 pills ahead so I never have to worry about running ou
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Thank you for your responses! Lucky, thanks for letting me know about the allotments. I actually emailed Roxane to inquire about production and believe it or not I received a reply. Not an answer but at least a reply. :-) If I can't get the Roxane I'll see if I can get Teva. I think CVS carries Accord but said they can order whatever I ask them to fill. Zarovka, I'm glad you're feeling better on Teva. I got almost three years out of tamoxifen and had to stop due to SEs and my MO wanted me to try the suppression and an AI. So, I find myself here. So far so good (only nasty hot flashes/sweats) but I'm only on week three. :-) Thanks again
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Hi- I have not posted on here for several months. I am finishing up radiation. I have 5 more sessions left. I had an appointment with the MO last week,, and he told me he was putting me on a new medication, but did not tell me what he was prescribing, He is kind of quiet the majority of the time, and so this is typical of him. He told me not to start taking it until I am done with radiation. While his nurse gave me a flu shot, I asked her what he was putting me on, and she told me letrozol. I asked her if he was also putting me on an osteoporosis medication too, and she said he was, but he generally likes to wait until three months after I start the letrozol before he starts me on the osteoporosis medication, and that he normally puts people on IV or injectible drugs, as opposed to oral medication. I told him that I had heard of people on medicare having problems getting part B to pay for the prolia, and she told me that he would never put me on a medication that did not get approved by medicare.
I have Humana Part D Walmart plan, and I finally went to Sam's Club to pick up my letrozol today, and I only had to pay $12 for a 90 day supply of generic Teva, and no I did not request that brand. I just got lucky. Maybe people that are looking for Teva brand can check out Sam's Club or Walmart. Now I just need to have my PCP order some blood work, so I can get my lipitor refilled. I have not had my cholesterol tested for 6 months. My PCP's practice just joined the Presence Medical Practice, which is a chain in the Chicago area, and they just had to switch over to their computer system. Apparently nobody in her practice has figured out yet how to make appointments using the new system, and so I call up and when I press 2 to make an appointment, the phone rings four times, and then an answering machine kicks in. I have been trying since last Wednesday. I finally got a hold of a really live person yesterday, and she took a message, and told me somebody would call me back to set up an appointment, which they never did. I called again this morning, and got the same person, and she apologized, but said they were having learning pains with the new computer system, and that somebody would call me back. She then asked me what I needed an appointment for, and I told her blood work so I could get my lipitor refilled. She replied that I did not need an appointment to have blood work done, and I could just show up. How are they going to do the blood work if my PCP does not order it? I am going to have to call them up again tomorrow, and stress the fact that I only have about a weeks worth of lipitor left, and I need the refill which my PCP will not give me until she sees the blood work. I also told her that I wanted my PCP to order a DEXA scan, and the woman asked me then if I needed to make an appointment for a physical, and I said no because I just had one 6 months ago, and Medicare would not pay for one this soon. My Sister the endocrinologist suggested when she called me up last night that I have a DEXA scan before I start the letrozol, and that I have it at the same hospital had my last one. Hopefully things will work out eventually. Thanks, Nancy
DX 5/13/16. lumpectomy 5/27/16, 2.3 CM lump, IDC stage IIA no node involvement, ER+, PR+, HER2-. Com,pleted 4 rounds of T/C chemo. Started radiation on 10/20/16. Will start on letrozol when I finish rads.
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After last week ending up in hospital with a bad reaction t the osteo meds I have had enough so today i went to see my MO. He was not at all surprised at my decision to come off the inhibitors. This was the straw that broke my back. He agreed that I had had a rough time with all my medical care. We will keep an eye on things and as I said I was willing to do any tests needed and if cancer comes back we will deal with it then.
I left feeling very emotional as I have had such a hard battle, not with the cancer but with the cures. I am no longer on any cancer treatment. Now to recover my health and get on with life.
KarenAus
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Karen - That sounds like a solid plan. Focus on your overall wellbeing. It is a powerful tool against cancer.
The book Anti-Cancer a New Way of Life is a great road map. But there are many.
>Z<
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The first three months or so, I had only slight joint pain on Anastrozole, but then it got progressively worse and after 6 months use, MO swtiched me to Letrozole. Now, after almost two months, I'm doing much better, hardly any joint pain and more energy because I'm sleeping better. So I'm curious if the low joint pain will continue or I'll progress to worsening pain like before. I am taking the Teva brand as suggested by others on this thread and I'm hoping this is the winner for me; so far so good.
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BJsmiller....for me it was worse in the beginning then tapered off. I have very low joint pain....mostly just my elbows. I've been on AI about 2 years. So for me it got better...not worse. Hope yours does the same.
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Hi everyone, I've been reading this thread on and off because I expect to be taking Femara (letrozole) soon. I read some women saying they had body odor side effects. I'm not sure if this well help, but I remember a mom describing extreme BO experienced by her son under his armpits. Another mom told her that the only thing that worked for her son was to immediately apply Listerine with cotton balls after drying off from the shower. This killed the bacteria under there before it had a chance to grow and start smelling. I think she said that he applied deodorant after that, but she emphasized that the Listerine had to be applied immediately after drying off or it wouldn't work. (One cotton ball per swipe - don't reuse the cotton ball.)
I have no idea if this will work for you, or if your body odor is even in the armpit area, but I thought I'd throw it out there just in case.
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Hello, I haven't posted much lately but I wanted to share my femara experiences. I was experiencing a lot of joint pain which would come and go. Despite all my efforts to change up my exercise routines, change the timing of taking the medication, I found myself in extreme pain, tingling in my lower extremities, couldn't get in or out of the car, limping, sleep problems....went to my Pcp and had a series of X-rays and MRI which showed arthritic changes. We ruled out cancer recurrence. I was referred to physical therapy and after three months of therapy, I feel great. I guess my message is don't give up or assume your symptoms are related to femara.
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I have now been off the Femara for nearly a week and thought I was imagining things but my Dr says no. I already feel better. Grumbling stomach has stopped and I can now make fists which i haven't been able to for months. I also feel far more awake than I have and although i am tired from trip to town and christmas shopping I don't feel like a rung out rag although feet hurt.
I am hoping that by Jan when I have my recon I will feel a new me and can get a bit of fitness before hand.
I didn't realise how yuk I have been feeling and I am so relieved I am off this poison.
KarenAus
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Congratulations Karen!
>Z<
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april485, I took Aromasin first, like you did, before letrozole, and it was my yardstick for grim side effects. I had to stop Aromasin because joint pain was so bad. I switched to an every other day regimen with letrozole, hoping to stay on, but I lasted less than 6 months.The joint pain was unbearable. I kept thinking it would level off but it kept getting worse and worse. I can't sleep on my side without pillows, my bones hurt from touching!
I have Stage IV, so unfortunately I have to find a new treatment. Those of you taking letrozole as a preventive, I strongly urge you to not allow any drug to ruin your QOL. You deserve to enjoy life without these miserable side effects. New treatments are coming
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Nash54, that's good to know and what I'm hoping will happen for me. I do have arthritis in my knees, and the only real joint pain I've had is in my knees, but it was just different on the Anastrozole and much better now that I'm on Letrozole. Funny how these drugs work so differently on each of us, depending on the type and generic brand or are just awful. Exercise helps too, but now I feel like I can and want to walk more.
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TarheelMichelle, I am so sorry you have to find another med after trying these two AI's which have proven to be quite painful for both of us. I am thinking of quitting altogether as I was DCIS and after 3 1/2 years of constant pain, I am just so tired of it. I miss being active and frankly, being happy. I am not either of those things these days and it is starting to disrupt my life way too much. I want to play with my grandkids on the floor and walk more than a few hundred yards before I need to sit (and I use a cane for stability) so this is not making sense for me any longer. My fear of recurrence is so great that I have given up a lot of QOL for this. I wish I was not so afraid to stop...
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april485....so sorry you have been suffering. I have refused anti hormone treatment for many reasons. Please feel free to PM if you would like to know what I'm doing to lower my estrogen naturally and reduce my recurrence rate. Good luck to all.
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