FEMARA
Comments
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I didn’t even mention it to my oncologist, because I went to see my dermatologist the same day and she went ahead and changed my allergy medicine to 2x a day plus a Benadryl at night. If that didn’t work to help clear them up, she would take a skin sample. I really think the steroid helped with the swelling and little itching that I had. When I go back in August I’ll ask the oncologist about the letrazole and hives
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So I am confused ...is letrozole the BRAND name or is Femera???
I also have hives on my outsides of thighs !!!!!! I emailed my MO the other night because I thought it was the Ibrance since I take that at dinner and it itches a few hours after but now...I am thinking it is the Letrozole. I have Letrozole so is that the brand or generic??
I am going to a dermatologist next week I will ask about getting a steroid.. I have been taking Hydroxyzine 20 mg at bed time and I take Claritan D during the day (for post nasal drip)... I used to have Xyzal that stuff is great..however I think the Hydroxyzine might be stronger...I will have to ask the dermatologist about that.
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Femara is the brand name. Letrozole is the name of the drug itself, so it's the generic name. There are multiple brands of generic Letrozole available.
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I have been on Letrozole since June 1st, not even month, and I have developed hip and lower back pain and my hair is thinning. I already have really thin hair, so that has distressed me. I am doing yoga and walking to try to minimize the joint pain. I started taking glucosamine chondroitin about 2 weeks before starting the Letrozole, but that doesn't seem to be helping so far. Do the SEs level off after a while? If so what is everyone's personal experience.
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kkayet - some of my SE's got better and others got worse. Definite hair thinning although my stylist says the texture is getting better. Try adding Calcium with Vitiam D and claritin for the joint pain. Walking helps and I play 27 holes of golf most weeks. Be certain to keep hydrated. I also take over the counter pain medications on a fairly regular basis but I also have worsening arthritis which I blame on age and not AI's.
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I did hear back from my Oncologist and she said the SE's from Letrozole should stop or start lessening 4-6 weeks after you stop taking it. So, I am hopeful this will be the case and I am counting down the days until I can be off these anti-hormone drugs! :-)
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Hey there y'all! I'm just stopping through to say hi. I've been on letrozole for 2.5 years and things are generally going well. My endurance isn't what it used to be and I have to write more stuff down, but no joint pain, no rashes, no hair issues, preexisting osteopenia hasn't worsened, none of the things I was so worried about.
I realized that I should stop back by here because the people who come here a lot are more likely to be people looking for answers because they are having side effects. People like me who are doing great just go on with our lives and forget to check in. Anyhow, for those of you contemplating an AI or newly started and wondering if you will get side effects, I would say that many people either don't or their SEs are manageable.
Best to all of you!
SR
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SusanRachel Glad to hear you are doing good on Letrozole. I have been on it for 2 months and have had no SE. Hoping to keep it that way.
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SusanRachel and RRshannon, I'm glad to hear you have both been virtually SE free. That's fantastic!
I would caution those reading, however, that the conclusion that few people get side effects may be largely based on your uneventful SE personal experience. ("I would say that many people either don't or their SEs are manageable")
AI's were like poison to me so I quit them... EXTREMELY bad. I have read hundreds of comments about horrible SE's since joining BC.org. In fact, I have read very few comments about no SE at all. Some people say they have been able to manage them - great! I could not and I know of many others who simply could not take it any longer.
I've also read several studies, reputable articles and blogs about AI's and their SE's and have found that SE's are very common. Even Komen admits AI SE are very real and common: https://ww5.komen.org/BreastCancer/SideEffectsofAromataseInhibitors.html
Again, I think it is fantastic that you have had such a symptom-free journey - I really do wish it was the case for each and every one of us. Yet I would consider you both two of the extremely lucky ones. I wish I could proclaim the same, for my inability to endure the SE's leaves me with the fear of recurrence. I was extremely positive in the beginning and I denied it was going to happen to me, but it did and I simply could not go on. It is scary, but I chose to live the life I have without the painful SE's. I simply don't want to put unrealistic expectations in the discussion for those who have yet to start.
Thank you for understanding why I felt compelled to speak up.
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I thought I was going to be immune to the horrible joint pain and aches from Letrozole, but remained cautiously optimistic. While taking Tamoxifen for 5 years, I had read numerous women who said they felt like 80 yr old women, hurt getting up from a chair, etc., and wondered what would be in store for me when I started the Letrozole. Then I started taking the Letrozole for about 1 year and the SE's slowly started after the first year. At first I thought they were just tired feet/knees/hips from being on my feet working around the house, workouts, etc. Then my fingers and wrists started hurting and I started connecting the dots. Now I understand what those women were talking about.
2 years into Letrozole, with 3 more to go. My Oncologist told me the SE's should start to taper off 4-6 weeks after I stop taking the medication. 3 more years to go.
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I think it is important for both 'sides' to be aired about side effects on AIs. One must consider that each individual handles medications differently, emotionally, physically, and ideologically. One should also consider that those who are suffering side effects are more likely to post on these sites, looking for answers. Those who are managing well, tend to not post since they are not looking for solutions.
Personally, I was prescribed anastrozole initially in 2012. My SEs were-evident within a few weeks. My joints did not respond well and it became difficult to manage. Since I am stage 3 and was terrified of a re-occurrence, I was ready to soldier through the 5 years. After two years of difficulty, my MO was not willing to continue and she switched my prescription to letrozole. I was thrilled to see the extreme SEs slowly go away. While I am in menopause (no hormones) and feeling the effects of having no hormones, I can easily manage the new 10 year plan. Yes, sometimes my joints ache, but they feel much better the more I move. Other old age issues are present such as thinning hair. bone loss, and skin changes. Considering my age (63), these issues were expected at some point anyway.
For many, AIs are the only option for treatment after surgery, chemo, and radiation. If a friend were to ask my my opinion, I would suggest a trial prescription of one or all three AIs. In my opinion, it is preferable to at least try each to see if there is a marked difference in how a body responds. Apparently, any SE due to treatment will go away once the treatment is stopped. I would hate to have regrets if a re-occurrence were to happen and I didn't try everything available to stop cancer.
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SusanRachel, I really appreciate you posting about your experience taking Letrozole. I've been taking Letrozole for 2 months and have had several small side effects that come and go. I "penguin" walk for a couple of steps in the morning before the ankle starts to move. I had an arthritic feeling toe last night and within an hour the pain was gone......weird stuff. There is no denying many ladies are truly suffering with awful side effects from this drug and it may happen to me as well......I am only just beginning. Some of us have no choice but to take the hormone therapy so I'm hoping to find the one that works best for me so I like to hear experiences from all sides.
I was told by a moderator that many ladies with few side effects just stop posting and are getting on with their lives away from cancer. So....thank you SusanRachel. and RR Shannon.
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If someone stops posting how does anyone know why? Do they do an exit poll? I don’t think so.
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You're right marijen. The moderator comment about "many ladies with few side effects just stop posting and are getting on with their lives away from cancer" feels rather insulting. It suggests that if we do post we are "not getting on with our lives" and that we are somehow "stuck" here because we have problems.
Wow, that's not the case at all. I have come to trust several members of specific forums for their knowledge, insight and pragmatic analysis of any given question or topic. I choose to participate and my recent comment was simply to let two people know they are extremely fortunate, while I was not. Isn't that why we are part of a discussion group?
We all "get on with our lives," and our lives may get busy, we may get involved in other things, perhaps a specific topic is not what participants are coping with, we may have a million different reasons for not posting, but our cancer experience is now part of who we are. Why do some people stop posting? Perhaps comments like this one from "the moderator."
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I think the advice given to Sketcher1 by the moderator was not meant to be insulting or dismissive in any way. It is what it is. People come to this site, while in treatment, to find support and answers to their questions and concerns. Those that have few or no SEs tend to 'move on'. It isn't a judgement or condemnation of those that are still dealing with the effects of treatment. In fact, I think some SE-free folks avoid posting in threads like this out of respect since they have nothing to add to the discussion.
Many of the women that posted in threads I frequented while in active treatment no longer participate in these threads. It is common to 'move on' after a while. My sister, who joined in 2008 no longer visits this site as she is finished treatment and has put cancer behind her. I only visit occasionally to check on new treatments and information that might be discussed here. So in that sense the moderator is correct - those that are SE-free probably won't be visiting a thread discussing SE. This should be considered when reading each contribution and making decisions for one's own treatment choices.
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I agree that many move on. I know I read the message board more when I have an issue or want to get information.
What I really want to add here is that I am still not having any side effects from the Letrozole. I saw my MO, the doctor I have most confidence in, and asked her about my theory that being obese is causing me to lack SEs because I still have a lot of estrogen in my system. She said no, that there is no reason to believe it isn't working just because of the lack of SEs. She said in fact most of her patients have none or very slight side effects from the Letrozole. I know this doesn't mean I won't eventually get SE's, but I am going to take what I have now and be thankful that I don't have any.
As for my family history of BC, I am going to do the Risk Assessment to see if I have any gene defects other than BRCA 1 and 2 (I am neg for them). My MO also works in Risk Assessment and said that it would help identify risks for other cancers as well. She made sense to me, so I am moving forward with this. She said it most likely won't make a difference in my care for BC but that if I got one of the other cancers, it could change how it would be treated. The biggest reason for doing this is for my children and grandchildren.
((((hugs to everyone here))))
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All I was saying is it’s an assumption as to why they move on. I believe a lot left when they realized our posts are showing up on the Internet searches. I had a bad experience with Letrozole but I’m still here. 50% don’t make it to 5 years on Letrozole. Maybe if they let us have the brand Femara for a fair price that would be different. Anyways there are plenty that quit and are still here. I’m not interested in arguing about something that can’t be proved, I was just pointing it out.
Found this yesterday, here’s an excerpt:
“Aromatase inhibitors are usually given to post-menopausal women, and prevent oestrogen from being produced in other tissues. Although the women's ovaries have stopped producing oestrogen, some of the hormone is still made in several other tissues by an enzyme called aromatase. The medication prevents this enzyme making oestrogen.
However, around 30 per cent of breast cancer patients taking aromatase inhibitors see their cancer eventually return. This returning cancer is usually metastatic, meaning it has spread around the body, and the tumours are often now resistant to aromatase inhibitors.
https://www.sciencedaily.com/releases/2019/05/1905...0 -
Thank you, Taco1946. I guess I'll just adjust to what comes at me.
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I respect anyone's decision to say that the SE's just aren't worth the QOF issues. I have certainly thought about it more than once. For me the worst was all day headaches for days on end. I switched from arimidex to femora and mood got much better although hair loss worse. I have also taken a couple one week vacations from my AI's. All three times there were no more headaches when I resumed.
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I recently started taking name-brand Femara in hopes that the red itchy bumps/raised blotches that have emerged, mostly on my hands, were caused by an allergy to fillers. They may actually be getting worse. Of course my oncologist "has never heard" of hives (or whatever these are) from AIs.
Has anyone had this experience and found relief from visiting a dermatologist or something else?
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Thanks for coming back on and saying that! I will be starting ibrance + femara soon and am very worried about SEs. Anyone have a comment on immune system issues? I am a preschool teacher and LOVE my job but am surrounded by germs. Will I be able to keep working if I am very careful?
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I am taking Letrazole (oct 2018)and ibrance (July 2018) and have had lower levels of white and red blood counts. They have never been low enough to stop taking the 125 mg of ibrance and I haven’t had any problems with working with kids (kindergarten teacher)
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I had 5 years of Tamoxifen therapy. Oncologist then switched me to letrozole a year ago. I am supposed to take it for the next four years for a total of 10 year of hormonal therapy.
My current issue is that my cholesterol level has Increase from 210 to 340 in the past year that I have been on the letrozole. Now, oncologist wants to add a statin for my cholesterol issue. I do not want to take another drug!
Oncologist said I have the option of going back on Tamoxifen for the next 4 years. It would increase my recurrence percent up to 3%. Her preference is to stay on the letrozole and add a statin
I don't know what to do??!!??Anyone else have a huge increase in cholesterol level from letrozole???
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MAM56 - I can only speak from my experience and perhaps it's not relevant. However, I fought high cholesterol for decades and in 2017 when it had gone above 240 for total cholesterol (and my LDL numbers were very high) plus I suddenly was prediabetic, I started overhauling how I ate (with the advice of a registered dietician/nutritionist). I did a lot of research - and my primary doc approved it all. A1C came down (no more prediabetes) as did my cholesterol (under 200 finally). With my cancer diagnosis (IDC) last year and having to go on Letrozole (I am waaayyy past menopause), I knew that the Letrozole would completely undo the good I had done with my changed eating which was sugar-free (except for naturally occurring within foods like fruits), LARGELY vegetarian with some fish/chicken/yogurt.
I did more research and for the past year have transitioned to just about 100% plant-based (lots of terms for it - Whole Food Plant Based, Plant Strong, some would consider it Vegan but that carries so many connotations). I eat no fish/poultry/meat/dairy and I use so little in the way of processed oil that it's just about zero. Continuing no added sugars (so no agave/honey/maple syrup/etc. I had my checkup with my MO last month and my blood tests prior to that - my lower cholesterol and my lower A1C numbers HELD and even came down a smidge, but I'd be happy to just hold steady. The oncologist and my primary doc both agree that it is because of my plant-based nutrition.
I realize that this may not be helpful for you or may seem like an onerous task to take on, but for those of us who have done it, it has been well worthwhile. My energy is way up; I'm stronger, leaner and I've learned so much about food and cooking and I look forward to every meal.
If your oncologist's office has a Registered Dietician/Nutritionist on staff or if they can refer you to one, that might be a good place to start.
I wish you well. Keep us posted here.
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Have you tried to lower your cholesterol with better food choices naturally?
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marijen, you read my mind...I was writing my response just as you were writing yours! great minds think alike.
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Yes, PatsyKB,I saw that! I was able to lower my cholesterol very easily once I put my mind to it. Foods that lower cholesterol can be found with a search. My cholesterol did not go up with being on letrozole for 28 months. My MO at the time said if it does go up it would be insignificant. I compare lowering cholesterol to my thyroid and losing weight. Tried to blame it on hypothyroid but in reality I just had to quit a few things like sugar and wheat, and not eating when I’m not hungry.
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Good to hear, marijen! I did not set out to go whole-hog (excuse the expression) plant-based, but the more I learned the more I was committed, not for any reason but my health and, honestly, my increasing love of what I was eating. I find myself fascinated but the whole subject, so I have lots of websites, blogs, podcasts, cookbooks. I do have a life outside eating and cancer, of course, but hey, a girl HAS to eat!
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Eating healthy and shopping healthy is a time consuming enterprise, I’ve found. But when my labs come back great I know it’s worth it plus I feel so much better. I wish I could find a good cooking class. One drawback is back pain that makes it hard to stand around watching food cook : )
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Hello,
I’ve been taking Femara for almost 3 months now. I’m incredibly drowsy during the day. Is this normal? Did you get used to it after time?
My only side effect so far, so....that’s good!
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