FEMARA
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dlk617...so sorry you are having such a difficult time on Femera. Hopefully you can work with your MO to find a solution. However if you do decide its not for you please feel free to visit the alternative thread. We need to speak up for better treatment options!
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Hello ladies, I’ve just been on letrezole for just under a month. So far i haven’t had anything to complain about apart from the hot flashes that are so frustrating - is there any way to lessen their frequency?. I just find it a little daunting that I have to be on these meds for 10 years.
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Indigo--With my MO's approval, I take iCool. I find it reduces the frequency and the severity of my hot flashes. And you can buy it most anywhere.
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Hello ladies, I am switching over to this forum from the Radiation forum since I just finished my 4 weeks of rads on Dec 14th and will be beginning the hormone blocking treatment in January.
Honestly I am very hesitant about this Letrozole (Famara) pill as I have heard far more negative than I have positive. I had major muscle and joint pain while doing the Herceptin infusions that will continue until June 2018 and to add this pill onto that freaks me out. I am afraid of additional joint and muscle pain. I have finally given in and told my OD and will try it for one month and see how I tolerate it while I am on a months disability recovering from all the treatments I have been on this year. Would love to walk this journey with someone who is on Herceptin and Famara.
Angelsgal57
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Thank you lala1, I will give that a go
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marijen, I read that article here....somewhere!
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So the last time I posted this I got flack because it's from a body builder source. Although bodybuilders use anti-hormonals to lower estrogen in their bodies.
http://www.musclechemistry.com/upload/bodybuilding...
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Hi Angelsgal57 - that would be me, although I only have two more infusions to go. Femora is my second AI. So far, so good. MO switched me because I was complaining of headaches. I was on Chrondoidum and Glouscomine (not spelling either right) and Calcium with Vitamin D before BC and have continued it. Also take claretin (generic). I'm guessing I'm older than you and generally feel that some joint pain is part of aging. I had achilles and carpel tunnel surgeries several years ago. I take extra strength tylonel as needed. I also know that I feel better if I get some exercise, even if it's only walking the dog. I will also tell you that my first month on AI's was the worse so try to give it more than a month. We each have to decide what the trade-offs are in terms of quality of life but don't psych yourself into SE's before you start. Good luck and keep hanging around.
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Hi Ladies,
I've been on Letrozole for about 2.5 months. Main side effects - joint pain (fingers, wrists, shoulders, hips and legs, except for my hands its a pulsing pain that comes and goes), overall stiffness, and some (but not that bad) hot flashes. I take Claratin at night but I'm not seeing a big payoff. When I started Letrozole, I was taking pills made by one mfr'r, then moved the Rx and the pills now come from a different mft'r. Does anyone know or have y'all discussed which brands cause less discomfort? Any ideas on which fillers cause more problems? I had no problems with my first set of pills but may not have been on them long enough (30 days) for the SEs to kick in.
Also #1 - I have neuropathy in my feet from the chemo (which when added to the joint paid has me hobbling around alot!) and it is getting worse - anyone else experiencing this and think it might be the Letrozole?
Also #2 - I'm scheduled for a Zometa infustion in late January to combat bone loss and my Dr. has 6 infusions planned over the next 3 yrs. Anyone else gone thrugh that? thoughts?
Thanks, Lanne
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Angelsgal57 I am also having the same dilema, I finish my Herceptin in March and am also having joint and muscke pain. My oncologist rang to tell me that I am officially in the menopause and that I can start with the Femara asap. She was shocked when I said I wasn't planning on taking them. I was supposed to start Tamoxifen for 5 years but demanded blood screening first...... oeps ovaries not producing anymore perhaps you need something else! If I hadn't have stood my ground I would now be on Tamoxifen being none the wiser. This makes me feela little shaky. I have to go in Thursday for my Herceptin and talk about the Femara, my whole system is screaming NO, i feel quality is maybe so much better than quantity. I feel scared, such a massive decision
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Angelsgal and Helen-Ruth - many of us do well on Femara, but don't post here because they are off living their lives. I expected the worst when I started, based on stories I read on this thread, but have not had any significant SEs. My hair is thinning a bit and I am a little more forgetful than I used to be, but not much else to complain about. Best wishes on your journey!
Lanne- I had my first Zometa infusion in August. I took Tylenol before and after the infusion for 24 hours and drank as much water as I could hold, also before and after the infusion. I did not have any problems or side effects. Be sure to have your blood work done about a week before the infusion. I think they need to check your BUN and creatinine levels to make sure your kidneys are ok, as well as calcium. I go for my next infusion in Feb.
Happy holidays everyone!0 -
Helen-Ruth,
I am right there with you. It would be like going on chemo every day for 5 years. My mind is screaming NO as well. I am a woman of faith who just turned 60 last week but I look 50. I also have breathing issues some times when I take my Herceptin infusion and it triggers an asthmatic response and I have to use my inhaler. Once they did my infusion too quickly and I suffered horrible muscle and joint pain for nearly a month & having to use my inhaler 6 -7 times a day keeping one by my bed and in the car and in my purse. That was scary.
I am praying for peace because I want to scream at my doctor that this is a quality of life issue and my quality of life is not going to be like that of a 100 year old women with a walker or a wheelchair who cant sleep or be without pain just because MAYBE the cancer will come back. It is necessary for me to work and if I cant it will impact our entire family.
Sometimes I think they use the "Cancer may come back" card as a fear tactic to get us to do what they want. I would sure like to hear from those who have gone the 5 year route and are now thriving and living a cancer free lift as well as those who did the 5 year route and are struggling. I trust this more than I would a Doctor who hasn't walked in our shoes.
Can anyone here give me some insight. I have heard it called "The NEW Normal" by quite a few people. What is that like for you.
Angelsgal57
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I think doctors go into medicine to help people, not hurt them. The doctors tell you the possibility the cancer may come back because they know that statistically, your chance of it coming backis doubled if you do not do anti-hormonals. It is their responsibility to warn you of this. The doctors are not the ones who developed these drugs, but they're all we've got; it's not like they are hiding something better in the closet to deprive you of it. We all hope that better treatments...improved effectiveness with decreased side effects...come out in the future. That being said, a lot of doctors need to do a better job of helping to manage the side effects of these medications, and respecting people's decisions. My former MO did not. He told me to suck it up and be glad I was still able to walk when I did not tolerate Tamoxifen. That's one of the many reasons he's my former MO. My current MO actively seeks out ways (including a clinical trial I am now on) to find things to reduce the side effects. Find an MO who will work with you to find out what works best for you. Everyone responds differently. Some people have very few side effects. Other people have horrible side effects and literally have no choice but to stop taking it. For those debating trying it, if it were me, I would try it and see how you do (but I am in my 40s with 3 kids at home). BUT it is an individual decision, and completely dependent on your individual age, health status, etc.
As far as what it's like for me, I am very active. I run or walk many miles each day. I do have joint pain, which may be from the Letrozole, or may be from my activity level. Probably both. I cannot be a couch potato though, so I take ibuprofen and it makes it very tolerable. I do not think my joint pain is as bad as others experience. I also have some brain fog and sexual side effects. For me, that's it. I work a very active job as a firefighter/paramedic, and I'm still able to do my job. Since I have already had a recurrence, and cancer is rampant in my family, I never miss a dose, and just deal with what comes my way. But as I said, everyone tolerates drugs differently.
Best wishes for everyone deciding on what to do. These are not easy decisions. Make the best decision you can, for you. Then move forward.
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I was premenopausal when diagnosed and put on Tamoxifen. After 2 years I had a total hysterectomy including ovaries and had the option of going on an AI. After much discussion with my doctors, we agreed I'd stay on Tamoxifen. I tolerate it pretty well. It's now been 3 years since hysterectomy and as of Jan 31st, I'll complete my 5 years. My BCI test showed zero benefit for continuing, so I won't. Just because you're post menopausal, it doesn't mean you can try Tamoxifen. For women with severe SEs from an AI, Tamoxifen might be an option that they do well on.
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Can I ask you ladies a question? I just started letrozole 2 days ago. I was on tamoxifen for almost 3 years, but my paps have been coming back with atypical cells. Long story short I got switched to letrozole. For those of you with side effects how soon did you notice them?
thanks
Nancy
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thank you HapB. I knew I wasn't off the hook after just two days lol. Hopefully, if I do get side effects I can tolerate them. Had zero side effects on tamoxifen except the abnormal paps. Grrrr
Nancy
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For those that are interested, like KB said above, I take Tamoxifen and am doing exceptionally well on it. I have a few hot flashes, and minor joint pain every now and then. I would rate my life a 9.5 out of 10. Like another poster said above, these threads are scary to read prior to even taking the medication. The bottom line, and with all due respect, is that you have to at least try them to see how you do. I am very active, an executive, pharmacy educated, and still I was hesitant to take Tamoxifen. For new people that might read this thread, don't be scared to try something just because of someone's opinion. Rely upon your physician, nurse practitioner, pharmacist for advice and guidance.
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Hi KBeee.
I wish I were 40. I just turned 60 last week and hear what you are saying. I have been taking a lot of natural supplements that made managing chemo and working full time through that and surgery and 4 weeks of radiation manageable. I just cant help but feel like a test subject going through this. I don't understand how drugs with all these side effects can go on the market if they are that dangerous for people.
I am a very optimistic person and will be trying them out while on disability leave the month of January so will be posting a lot here on how I do. I will keep you in the loop and anyone else that may want to weigh in on this next step in my journey.
Thanks for your input.
Angelsgal57
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Nancy - I have a paper with a table showing side effects from Letrozole and whether they occur immediately, early, or later. It also shows the percent of patients that experience each side effect. I can't figure out how to post the paper but if you PM me I may be able to send you a copy.0
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lala, what is a BCI test and how did you get it?
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About 1 month for me but by 6 months the side effects got a little better.
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thank you ladies.
Nanc
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very well said Michelle and KB. My SE kicked in about month 5 and got significantly better by month 10. Ocassionally I get a week of flare up when I am eating sugar and not exercising 30 min daily.
My opinion, trying any med for a year is worth it. I am young and have an active job and family to support.I plan on taking some type of hormonal therapy for 10 years, or until there is a better alternative.
Happy holidays to all!
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gkbuser---
Breast Cancer Index | THE Endocrine Biomarker
I just asked my MO for it and results were back in 3-4 weeks.
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I’m also on Lupron with the letrozole. My understanding is that the lupron is needed for the femara to work. I’m now 47. I think my diet has staved away the flashes. But boy do I ache😞! My muscles n joints are so stiff. I ran 3 miles yesterday and in pain this minute. I’m hoping to resume all my supplements very soon. It’s eazy expensive. Anyone else aching like me?
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hi dlk617! I’m sorry you’re having a hard time. I’m now 47 and was dxd at 43 just before my 44th bday. I’m having a hard time too! I suspect chemo permanently killed my period too. If in menopause then why do we need to take hormonal therapy?? I’d think it would 100% make the Se even worse! I see onc today! I’m gonna ask her for a break. I was told by prior onc that they’ll take you off to see if you’re really in menopause in order to decide 10 or 5 years
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maryJC,
I am also on zoladex (same as lupron) and letrozole and yes aching badly. The reason for anti-hormone therapy even in menopausal women is that, even menopausal women produce estrogen but in a different way, which is by converting other hormones into estrogen. Letrozole blocks that process. Good luck with your appointment and let us know how it goes.
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gkbuser, I am only on letrozole, but I found Co-Q enzyme 10 and glucosamine-chondroitin daily really help. Or I finally accomodated to the SEs
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thanks 2fun. Was doing the glu/cond but wasnt doing the coq10. Will have to try that.
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