FEMARA
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You're welcome LIndaK09. Yes, I take turmeric capsules (Oregon Wild Harvest brand), SAM-E (Nature Made brand), and I also take some frankincense/boswellia capsules (Himalaya brand). I do all of that every day and while I still have aches and pains, I do notice that when I drop one of those supplements for awhile, I start aching even more, so I think they do help. The SAM-E also can offer a little energy to combat the fatigue and provides a bit of a mood boost too.
Additionally, I use a "happy light" in the mornings (year 'round, not just in the winter) and that too, helps combat some of the fatigue and gives me a bit more energy. Even with all of this stuff, I can still feel pretty bad a good deal of the time, but I have learned that I feel even worse if I don't do these things.
Oh and also, a good walk every day can really help with the fatigue and aches and pains. Again, none of this "cures" the problems, but these things do seem to ease a lot of the symptoms for me. I've been doing this like you, for almost 2.5 years now.
(As an aside, there is some small emerging research that suggests that SAM-E, or s-adenosylmethionine as it's known scientifically, might slow the progression of breast cancer. If you google, "s-adenoslymethionine and breast cancer" or just "s-adenosylmethionine and cancer", there are some research studies that come up. As with most of these studies, it's usually just test tube and animal studies, but those do look promising. There is a little bit out there about human studies too. It also seems to work even better at slowing breast cancer cells down if you also take Vitamin D. The two substances seem to work synergistically together.
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Thanks all and welcome to Lindak09.
racheldog- I had my Feb 9th left side mastectomy and ovaries and fallopian tubes removed. Also, the expander put in my now vacant breast. I am not sure why i did not get a blood thinner after the surgery since i am at one of the best cancer hospitals. My sister is at a cancer hospital in western NY and they gave her 30 days of shots for preventing a blood clot.
I just think as i walk through this cancer diagnosis that something new can pot up, and we just need to go with the flow. If we have dreadful ide affects, please share with your team.
I am 3 months in with Femara, and i suppose in the future i will be able to report what i have and if i know what it is. Brca2 brought me 3 chemos, one chemo pill, many tests, surgery, and now letrozole daily for 5 years, Perjeta and Herceptin every 3 weeks. I think checking in on this thread will keep me looking at how i feel.
We do learn from each other.
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Lindak09, I have no faith in any of my drs. No one helps me or cares. Of course it's the letrozole. I've been in misery for almost 2 years, tried all of them and have taken many breaks. In combination with my statins they're realing killing me. I'm in so much pain. Nothing helps I've tried everything. Celebrex a little. Letrozole also increases cholesterol. My cardiologist says I don know anything about that drug.
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Thank you for your input girls. Like I said I am just glad to have found this site. I will be trying some of your recommendations and hopefully they give me some relief. I will keep in touch.
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I was on Letrozole for 2 years with the same SE described by many. Dr changed me to Anastrozole. I thought I was tolerating that better but recently am overwhelmed by sadness. I cry at the drop of a hat for seemingly no reason. I had covid the beginning of this month and feel tired and wiped out from that. Also, my SIL memorial is coming up next month and I am involved in planning that. She died of covid in Dec and honestly I am still in denial, I think what hurts the worst is we did not get to say goodbye. Anyways back to the damn AI"s, I am wondering if taking Anastrozole isn't making me more depressed.
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Hi, bonniecna here. After suffering for many months,my med onc finally convinced me to take a Letrozole vacation (1 month!). I was afraid to stop it for fear of more cancer.
I'm actually feeling better, although I still have severe L 4-5 and sciatic pain.
I'm taking other pain meds with the help of my pain Management specialist. And there will be procedures (facet injection) followed by a procedure called Rhizotomy. That won't be done until we're back in Florida (2 weeks)
Well, thanks for listening.
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Bonniecna-----did you have back pain and sciatic issues before you went on Letrozole?
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Yes, I was diagnosed with fibromyalgia many years ago. I also have lumbar spinal stenosis, degenerative disc disease, radiculopathy just to name a few problems.But the pain was never as severe as it's been lately.
I'm grateful for the brief reprieve of my 1 month "vacation" from Letrozole.
Can anyone suggest a different medication that doesn't cause as much discomfort?
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This is for Threetree: cannot find the post you commented on about the "percentage" you found of women who chose to not take these drugs anymore. I think I had found 11-30% but you had a higher percentage? Curious where you found that? I assume that can be true and many women probably do not tell their oncs they have stopped. I just went back on after a break and of all my journey this is the most depressing time I have had of making myself go back on these.
Of course, there are NO studies no matter what percentage who have stopped about their outcomes. I am back on Letrozole every other day and that may be the best I will do.
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Wow, Racheldog - I just finished popping my every other evening Letrozole pill and then I saw this.
You know, I'm sorry, but I don't have a citation for that statistic I gave. I think it was 30-50% at least. I only remember reading that number in an article, probably a couple of years ago. I don't remember the article specifically, only that it would have been some sort of professional type thing; not necessarily a study, but something written by a credible medical person.
I've actually seen where some say that no one really knows how many quit taking them, because the reporting is so sketchy; so many don't tell their doctors, the doctors don't report it either, etc. Also, there are no real studies either, of course, so it is probably anybody's guess as to just how many quit.
I might look around a little and if I find anything, I will be sure to let you know.
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I, too, am having eye problems with Letrozole. It's the only current new medication I'm on. One eye started with a floater and some blurriness a month ago. Now my right eye has a larger floater and blurred vision. My eye doctor checked my retinas and they are fine, thank goodness. It's causing me much anxiety. I am nearsighted and know floaters can occur, but to have both eyes affected in a short period of time causes me to think it the letrozole. My oncologist said eye problems are not a side effect, but not from what I've read. I have appt with a top eye doctor end of July, but will call every once in a while for cancellations to get in earlier.
I will probably stop the med and see what happens. I'd like to hear from other members of this group. Thank you.
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Roro123 this just drives me crazy when oncologists brush off the side effects of these drugs! Both the AI drugs and tamoxifen can cause retinal traction. Tamoxifen worse. I have been so stressing about stopping these completely. See a retina specialist not a general opthalmologist or optometrist.
Three tree, thanks for answering. I would bet that the stats are near 50% or even higher and many women probably just stop and do not tell their oncs. It is bad enough to have stress over taking these drugs and then on top of that are made to feel guilty that we are not going to stay on them or would consider altering the dose.
I went to a Functional/Integrative Medicine class yesterday on video to hear about their take on alternative meds for cancer patients and natural aromatase inhibitors. I may start a thread on that to see what everyone's take is.
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I have been on fermra, letrozole, since early Feb 2022. I also had my mastectomy and ovaries and fallopian tubes removed in early feb. I have bone pain shoulder down my whole arm on my surgury side. Crazy. I stretch and massage my arm and it helps. But it still of course hurts in the am, etc.
For me, is it the letrozole, surgery effect, perjeta or herceptin? I will again start a chemo pill this week.
I will tell my medical team if all goes haywire. Seems I will likely face nausea again. Hello Zofran and senns laxatives.
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I made appointment with retina specialist. Thanks.
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Racheldog - I looked around briefly online and can't find anything that captures the rate of "quit" for AI's, simply due to side effects. Now that I think about it more, I think the article I did read a couple of years back might have even said that some accounts go as high as 85%. I think the 50% that you suggest is probably a good bet.
I too hate the way the doctors dismiss the seriousness of AI side effects and make you feel guilty or like a "weirdo" if you complain or want to alter the dose, etc. On the other hand the statistics that are out there say these drugs do make some sort of difference, so I persevere, but with the every other day dose, thinking that maybe I'm meeting the doctors half way or something.
I had read about the possibility of heart trouble developing from these back when I started it 2.5 years ago, expressed concern, and the oncologist brushed it all off and gave me the "what on earth are you talking about?!" reaction. Lo and behold earlier this year, I read again about a talk that some well respected researcher gave at a breast cancer research event about how there are heart effects (and overall premature aging problems) associated with these drugs. In that talk, the researcher made a plea to the membership to take these side effects more seriously.
I think the below is the article I read about the premature aging issues. Even in this case, older women didn't seem to matter so much.
file:///C:/Users/sacos/OneDrive/Documents/Breast%20Cancer%20-%20AI's%20Putting%20Women%20at%20Risk%20Dr.%20Ganz%20M%20ASCO%20Presentation%202019.pdf
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Not sure that link I gave works. This might be a better one:
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Threetree, recently I found some stats on how long women stay on these before quitting. It averaged 1 year to 1.8 years for those having bad side effects before throwing in the towel. I plan to stay on these every other day but with an upcoming knee surgery I definitely plan to stop taking these. I need all the strength I can to go through a knee rehab and I do not want to feel so tired or have brain fog while going to PT.
I absolutely believe these can cause cardiac issues as well. The heart and brain both need estrogen. I started a thread on Functional Medicine because I went to a lecture last weekend to see what foods or supplements are aromatase inhibitors. In the end it comes to choice of how we want to feel for 5-10 years with all these side effects.
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I guess I'm doing better than most with bad side effects, then. I've made it 2.5 years. I give quitting serious consideration every day. There are foods that lower estrogen, but from what I've read none of them, alone at least, lower it to the levels that those supposedly in the know think is effective enough. Apparently keeping your weight in the normal range and getting daily exercise can also lower estrogen levels.
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I just told my husband today I'm thinking about stopping Letrozole. I started taking it November 2018 and it just seems in the last couple of months my side effects have increased. I did a little reading and saw where some had taken a "vacation" but I hadn't read about taking the pills every other day until I saw this thread. Hubby just asked that I talk to my oncologist before making a decision. We are getting ready to head out on two month camping (travel trailer) trip from North Carolina to Newfoundland, Canada and I want to hike and enjoy without my legs aching and sudden sweating. I have an appointment in two weeks and I've decided to stop taking the pills so I will know if that's what's causing my issues before I see the doctor. I'm open to options.
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I spoke to soon after saying I was doing better on Anastrozole than Letrozole. The pain in my feet and legs is back, keeping me awake at night especially. I am going to try it every other day and see what happens. I have been taking an AI since 2/20. I did take a month break between changing meds and I did feel a lot better when not taking an AI. Like some I'm afraid to quit all together. Best of luck ladies
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Hi all. I've been on Anastrozole for just 5 wks. Last wk was absolutely horrible. I cried every day, was mad every day, bit people's heads off for nothing. So for me affects mood!! It was menopause all over again 16 yrs later!! I like most don't want to stop taking, but if this is a preview of what is to come..... I didn't take it today and just that quick, I feel so much better. I'm trying to decide if I'm gonna not take until I see my dr 7/12. And like some here mentioned, I really didn't much get sympathy from my dr on side effects. It was just be compliant and talk of other drugs!! So when I see her in July I'm gonna mention the every other day dose. And in addition, I've had 2 calcium labs come back over 10, which is considered high. Looked up parathyroid and I have all those symptoms even b4 starting the AI. Insomnia, irritability, high blood pressure, osteoporosis and a ton more. Going to keep investigating hyperparathyroid too. I know 5 weeks is probably not long enough, but I really scared myself about how bad I felt. Anyway thanks for listening and if anyone has any advice or words of wisdom, it would be much appreciated
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Hi 5kmc ... I started with Anaztrazole but the insomnia was way too bad. I changed to Letrozole but I've decided to take a break from leg cramps and sweating. About 10 years ago, way before breast cancer, I had the parathyroid problem diagnosed by high calcium levels. The overactive gland caused the others to shut down. Outpatient surgery removed the overactive gland and with a little time the other glands "woke up" and started doing their job ... no prescriptions, just the surgery and the problem was solved. Good luck and keep advocating for yourself.
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Thanks grandmaadams for your reply. If you don't mind me asking, how high did your calcium go? Having a tough time convincing my dr that 10.5 is high when it is "in the range", and my PTH was not high. Did you see an endo for the surgery, etc? I've been on parathyroid.com, and it's really eye opening. I think I'm going to stay off the AI until I see dr on 7/12. Feel so much better being off now 5 days. I too have things I've got to go to in the next couple weeks and I need to be feeling good.
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5kmc I am sorry but the parathyroid gland issue was so long ago I really don't remember any numbers but I do know they were out of the normal range. I remember that my symptoms presented as fatigue and depression ... didn't want to do anything, didn't want to get out of my chair, get dressed or anything. I was self-emloyed and instead of being upset when a customer cancelled I was pleased. The eye opener came when my son walked through the den and said "You don't treat me the same anymore". I got to my doctor and he ran all sorts of bloodwork which showed a high calcium level. Then I had to collect urine, I think for 24 hours. That's the test that confirmed the issue, then an ultrasound, then surgery. Problem solved.
I've been off Letrozole for 10 days now. I am amazed at how much better I feel. I have an appointment with my oncologist soon to talk about my options.
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I've been on a Letrozole vacation for almost 5 weeks and I'm feeling pretty good (pain wise).
I put a call into my MO and will probably hear from her Tuesday (since tomorrow is a holiday).
I think she may tell me to start back on the Letrozole but I don't want to start hurting again.
I don't know what to do...is there ANY medicine that won't make me hurt? Please help me try to figure out my best alternative.
Thanks
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Hi! I’ve been on letrozole since Nov 2019. I kind of got used to the side effects early on - joint stiffness and pain. But lately I’ve been experiencing blurred vision ( I’m 42 and had my eyes lasered 20 years ago), hand numbness and on and off sciatica. I’m terrified of having to scan and so far the pain and numbness comes and goes. has anyone experienced numbness in hands and legs? is there anything to remedy
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Francesca30 - I've been on Letrozole since January of 2019 and I experience much of what you describe. All the stiffness, pain, blurred vision, etc. I get numb and tingly too; sometimes feel like muscles go weak. I used to run up to the ER when these things came on so strongly and suddenly, as I would get very scared. The diagnoses would always be muscle pain and/or dehydration with electrolyte imbalances. I got a handle on the dehydration and ever since then, I just chalk it all up to Letrozole and let it ride. I have not found any real remedies other than to make sure other things (like dehydration) are not part of it.
I just read a post on the Stage III, just a bit above your post, where a woman who is celebrating her stage III 13 years (great!) out anniversary said that she has learned that if all these weird feelings and things don't go away after 2 weeks she calls, otherwise she rides them out. I think that is really good advice and I've come to a similar conclusion. I get all these weird aches and pains, tingling, numbness, blurred vision, you name it, but I've also noticed that the symptoms come and go over a few days and then change or get milder, etc. I've come to just letting them go unless they are super bad, consistent, and persistent for a good week or more.
I've also realized that some of the blurred vision is computer eye strain in addition to the dry eye, etc. caused by the Letrozole. All these relatively minor things pile up on top of one another and make it seem like it's really, really bad - well, it is, but most often it's due to a combination of a lot of things that come and go and in and of themselves aren't serious, but they sure make your life hell. (Like you and the Stage III thread poster, I too am stage III.
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thank you @threetree ! i just realized that apart from Femara, my medications for postherpetic neuralgia brought about by shingles last march could also be one of the reasons. sig
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Started Femara 2 days ago. Flashes and sweating which I expected.Burning in my esophagus since last night. I have history of gerd and take protonix. I took Pepcid today with no relief. Is this common?
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Thanks grandmaadams for your reply. I've got to dig deeper and see if I can make all of this make since. I just feel this is my problem right now and want to resolve this and maybe the AI won't be so terrible.
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