FEMARA
Comments
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Hugs to you Mielli.
I have had wonderful care since being diagnosed 15 months ago. The nurse navigator was outstanding... She made most of my initial appointments and followed up with me frequently. Everyone I've had contact with has been outstanding.
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Nancy, that must be very reassuring! I had great initial medical care, but no nurse navigator available and no one with whom to address concerns on a consistent basis. I'm thankful for this site and for my ability to do independent research on questions which concern me, but it's certainly not the same as having a personal guide.
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Mielli - can you switch MOs? Is it him or the way all the MOs there operate? I saw my MO before each chemo treatment (16), every month through surgery and radiation, and now every 3 months for this first year, then it will be twice a year for years 2 and 3 but I can make an appt any time I want. I’m also getting twice yearly (for 3years) Zometa infusions to counteract potential bone loss issues with Letrozole, and Zometa apparently also helps fight against cancer recurrences. I had the impression the Zometa infusions were a standard thing given the latest research? (Anybody else?) I get blood work done then as well so we’re keeping tabs on how my bod is handling everything every 6 months. You deserve better!!
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lane - my MO also started me on Zometa every 6 months. He said it was up to me if I wanted to do this as the research was not clear that it would help with early stage BC and my bone density is still in the normal range
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I am so sorry to read about people's access to their physicians. I saw MO at least every other visit when I was getting weekly taxol and almost always during the every 3 week herceptin. I've seen her twice since I finished herceptin in Jan and have an appointment with her for Sept. when I also get a one breast mammogram and see my BS. I like her more every time I see her and I trust her PA.
My dex scan was very good and no discussion of my taking anything more for bone strength. I'm 72 and was taking glososcime/chodrotin and calcium with Vitamin D which I've continued with MO's sign-off. Had surgery for an achilles tendon and carpel tunnel 5 and 3 years ago so the joint discomfort isn't new. No question that increased activity has helped.
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mielli, can you tell me more about why the calcium is harmful? I guess I hadn't heard that. I'm also in healthcare and agree with you about trying to prevent problems. I had a Baseline bone scan prior to starting my letrozole a little over a year ago. I was told it was in the normal range. Which is true. But what I didn't realize is I was very borderline in my left hip. If I go down by 2 more points I'll be in the osteopenia category.. I have started doing jumping jacks to get more lateral movement in addition to the walking that I do daily.. but I am interested in any information I can be given about the calcium being harmful.
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Mielli - me too (about calcium). When I went for my first zometa infusion, the pharmacy tech stopped by to review my meds and recommended C+D3. Lanne
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Okay ladies, I am OVER it with the Letrozole, the emotional toll is crazy. I handled menopause fairly well and am so surprised at the emotional rollercoaster that I am on. I was on HRT before the BC (lowest dose of combi patch 0.05 - 0.14) because of some of the same feelings. Anger, depression, tears, short fuse- a pot continually threatening to boil over...that I am. The first two months of Letrozole I was fine and now 4 months later I am ready to blow. Any advice? I am anxious all of the time.
Any tips?
I do know that my manufacturer has changed a while back, could this possibly be the cause or is it truly just the lack of estrogen in my body? I am cross posting to my Triple Positive as well to try and get as much input as possible.
The vaginal dryness is a small bit better because I use Replens every other night (terribly messy, but it is working). I have not as of yet tried the Luvena as I wanted to compare a month of Replens to a month of Luvena. I will then (with my ONCO's approval) try the Intrarosa for a month to see which is the magic bullet.
On the bright side my last Herceptin is in 2 days! I may kill someone before then .....lol. just kidding. Please send cigarettes to the prison even though I don't smoke....I may just start.
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moody blues-are you taking any anti-anxiety or anti depressant meds? Just the stress alone of BC can cause changes in the serotonin, dopamine and/or norepinephrine levels in our brains causing that pot about to blow feeling, little to no patience, snippiness.
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Lula, I am not. Elaine on the Triple Positive thread mentioned that as well.
Goodness this BC is a bite in the behind!
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you got that right! 🐊
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moody, I didn't know how depressed I was until I stopped taking femara. I was on about 9 months and I got to the point I couldn't bring myself to shower and barely get to work. Then id come home and sleep until bedtime, then sleep. I am trying different AIS and am still waiting to.find the silver bullet.
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2fun. I hate to hear that, I hope that you can. I've heard a few people mention CBD oil, maybe that would help?
(edited to correct typo)
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I was VERY angry today. Small things set me off. But I was chalking it up to lack of sleep as I'm still having issues. Overall, I'm having the fewest side effects from Femara. I've also tried Arimidex and Aromasin.
I couldn't use Replens. It burned and gave me a gross smelly discharge. Used Premeno Duo which was ok, but had to come from Germany and was expensive. What has worked better for me is a Probiotics called Fem-dophilus. It was recommended by my pcp. I have also tried vit E suppositories which weren't messy and didn't burn
My MO hasn't mentioned any infusions. My bone scan was borderline as it has been in the past. I take 3000iu Vit D. Along with a bunch of other stuff listed in my bio. The stiffness today is bad but I also wasn't very active. I should have gone for a walk this afternoon. I have to talk myself into it because our subdivision has HUGE hills no matter what direction you go.
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I started Femara almost 3 weeks ago. This past week while I am asleep I have woken up with the feeling that I am going to vomit. Acid is coming up. The past 3 days my acid reflux is horrible and I feel nauseated. Is this a side effect? I take Nexium for reflux already and it was fine until recently.
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I had reflux with femara. I really was good about eliminating coffe, carbonated water,spicy food etc and it was better. I found the best thing was a tsp of baking soda in water. Settled it right down.
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Hey everyone, after thinking and worrying and questioning myself since Wednesday's MO appointment, I am 99.9% certain I will forego chemo and start taking Letrozole (Femara). (My OncotypeDX was 24, which is why I've been dithering around. With chemo, 7% risk of recurrence; without chemo, 10% risk of recurrence - the risk:benefit ratio isn't that compelling and the TAILORx study puts me in the "can skip chemo" group, although near the top. Can you tell I'm still dithering?)
Question: Do any of you have an opinion on a "best" time of day to take this drug?
I confess I am of 2 minds: I want to start RIGHT AWAY to get things going. But at the same time I want to wait another week and, for peace of mind purposes, consult with my primary care doc (who probably won't want to give an opinion) and a second oncologist in town - both of these doctors are out of town til next week.
Can I wait? But should I? Am I just putting off the inevitable?
This is so freaking hard.
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Hi - I'm responding to a bunch of things ...
1. I've taken Femara/Letrozole am and pm and didn't feel any difference.
2. Am trying vit E suppositories. No mess, but I need to store them in the fridge bcs otherwise that little bugger slips right out before I can make a fast dash for bed. They start melting literally in seconds.
3. I've had good success with Tumeric as a pain reliever in lieu of gabapentin. It seems to take the top off, kind of like a low dose Oxy. (But obviously not as well). All over joint pain from Femara is still a problem.
4. I've been getting acid reflux but I thought it was from all my other pills (vitamins, glucosamine, Tumeric, etc,). Now I know! (WHY are vitamin pills so gd big??)
5. Today a friend gifted me a small bottle of CBD gummy bears. She takes them for arthritis in her hip. I'm going to give them a try. What the heck. There has to be more to life than hobbling around like a decrepit old woman, even after BC. Will report back.
6. I started on Cymbalta for help with anxiety. It also helps with my neuropathy (thanks chemo!!). Has also curbed my appetite and stress eating. Am going to ask my Dr to kick it up s notch. Ladies, don't shy away from these drugs - they can really improve your quality of life, Wish I'd started 10 yrs ago.
Lanne
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Patsy,
I started taking Femara in the mornings and felt very tired through the day. I now take it at night and find this much better. I still get hot flashes whether I take them am or pm but I have a lot more energy through the day
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Sherryc, I didn't have a problem with that, I take the generic- Letrozole
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Patsy-I also take mine at night with all my other meds right before bed.
Sherri-I don’t wake up nauseated but if I stay up a significant amount of time after taking the letrozole I do experience nausea. I also take nexium and I’ve noticed maybe a little breakthrough reflux but quite minor.
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Patsy...I also take mine first thing in the morning. I had a few side effects at first (stiffness mostly) until my body seemed to adjust. I chose mornings because it said not to take with alcohol. I'm not a big drinker but IF I have a drink it's in evenings.
I had oncotype score of 24....good to read the TaylorX report supports "no chemo" for my age group and diagnosis .
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Nancy, the Fem-dophilus, is it a pill?
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Lanne, let me know what you think of the CBD gummies after you have been on them awhile, I am curious if it will work.
Thanks!
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PatsyK, I take my Letrozole at night before I go to bed, usually an hour before I lay down. The RX said it may cause drowsiness so, I always take it at night.
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Okay ladies I'm needing some help/ dvice figuring things out. Anyone been on letrozole and zoladex? I've been having bone and joint pain so bad various areas of my body. I finally called and made an appointment with my oncologist yesterday. She wants me to trial off the letrozole and then see if things get better. But I can't help but think that it is the zoladex shot that's causing at all. She seems less willing to trial me off of that. She thinks it's more the letrozole that's the problem. The only reason I think it's the zoladex is I started the zoladex two months sooner than the pills and joint pain started with the shots.. I am going to be 53 in July so I'm thinking I'm probably a natural menopause. Anybody out there had this situation? Can you talk me through how the doctors decided when it was okay to trial off the zoladex and how you did that? What did that look like? timing of blood tests Etc? thank you all
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it may just be the lack of estrogen causing it, and not the drug, per se. It’s worth seeing if discontinuing the letrozole at least temporarily helps at all. If so, then you could maybe try one of the other AIs. Have you tried taking curcumin/turmeric for the pain?
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no havent tried tumeric. How much is recommended? I am willing to try anything.
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when I first started having joint /muscle pain on letrozole my octo told me to.take glucosamine and chondroiton and that helped for a while
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just wondering if anyone was on letrozole & zoladex and found that joint pain got better after finally getting off the zoladex and taking letrozole only. I just can't buy it that it's the lack of estrogen and menopausal symptoms. I know so many women that have been menopausal for years and they don't suffer like this. 101 year old lady that can get up and down, and rake leaves. Doesn't suffer near like I do.
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