FEMARA
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Zarovka, how true! Thanks why where here with people who understand
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mammaray, tamoxifen is used for premenopausal women but also postmenopausal women too. AI drugs are for postmenopausal women. Hormone therapy can be tamoxifen alone, tamoxifen and AI, or AI alone. My onco says no more than 5 years on AI, you can change to tamoxifen for an extra 5 years.
Each situation is considered before automatically taking either one. Tamoxifen has a risk of blood clots, possible strokes and in rare cases cancer. AI also have risks of bone loss and other problems.
What was intriguing to me was being er+ and pr- AI drugs are more effective than tamoxifen.
This stuff may be good at fighting cancer but otherwise not too great on your health.
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I've been on Femara for 20 monthd. I have severe arthritis in my feet and knees, so I can't tell if the pain is just arthritis or a SE. It's rainy and foggy here and my knees are killing me.
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What was intriguing to me was being er+ and pr- AI drugs are more effective than Tamoxifen. -
Meow- I thought this intriguing too, so I was wondering why I am being put on it post Femara??. Perhaps the risks of staying on it beyond 5 years are too great? But having said that Tamoxifen also brings problems, which look just as great as some have mentioned on here. My BS just told me when I asked if i would stay on Letrozole for 10 years - that it was not indicated for me. I will ask more when i see her next.
BosumBlues, it's interesting that you had a very strong reaction to Tamox, it sounds really frightening, Does that mean once you finish up with Femara (5 years) that you will not go on anything else? You will not get an extension of Femara for a further 5 years?.
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BB,
Well I will move onto Tamoxifen once my 5 years is up on Letrozole. As that's what she told me was next. I think my next visit to my breast surgeon is May. Not sure who an MO is? She said in my case I had no further need to continue Fem.
I know there has been some studies that were indicating that it might be better for some women to stay on Femera for 10 years, but I think recent research is suggesting it not to be beneficial. Perhaps there hasn't been a consensus on this yet? .
I am a little worried that I might go a bit bonkers too on Tamox as I am prone to depression. I am going back to the GP as I have felt really bad this Xmas.
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BB
I'm so glad you shared your experience with Tamoxifen. I too had a very adverse emotional reaction to it and ended up switching MO'S because of her refusal to see it was the meds and not just me.
I was very depressed on it, dark and hopeless thoughts and not wanting to go on. I knew it was the tamoxifen and I quit taking it. I even tried one more time and same thing within a few days of starting again.
I have always struggled with anything changes to my hormones. :
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doctor old me that tamox is used premenopausal, then can switch to AIs later. I started on anasriozole as I was post menoupausla. Tried all 3 AIs but letrozole had the least side effects. Hair was thick and beautiful for the first year. It got thin and fine just in the last 6 months. If this one is the best for hair I'd hate to see my self with the worst. Would need a wig if it was any thinner
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sorry to hear Chloesmom, my hair didn't thin at all but I got other side effects joint pain, arthritis, ringing ear, and very dry eye. I am much better since I stopped. I noticed my hair and skin are not as dry. Hair is shinnier. My onco offered tamoxifen since I did 4 years AI. I didn't think I'd get that much benefit and he said ok. He thought I had enough treatment too. My stats are similar er+, pr- I had 2 tumors IDC and ILC, also my oncodx was 34 but I chose no chemo.
It is hard to believe the different reactions people have to these meds. Scary really.
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BosomBlues....so sorry you had to suffer. What happened to you infuriates me! Why why why do these docs continue to negate the SEs of these anti hormones. They are very powerful drugs and absolutely can affect our mental status. It can be very dangerous when docs deny our SEs. I'm happy for anyone who does well on anti hormone therapy, but the fact remains that only 50 percent of us complete the recommended 5 years. Thats just not good enough! We need to speak up so that better treatment options are available in the future.
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I think the 10 years vs 5 years debate is still very much up in the air. However, what the most recent study did find was that 10 years of AI drugs significantly reduced the number of distant metastases by 28%. With women taking the AI Drugs only 5 years having 28% more chance of distant metastases according to this study, I would think we would need to wait for 15 year out studies to see if that changes the overall survival statistics.
From the BCO website:
The results showed that an additional 5 years of Femara reduced the risk of:
- breast cancer recurrence
- contralateral breast cancer
- a new cancer somewhere else in the body (non-breast malignancy)
Still, these differences weren't statistically significant. This means they could have been due to chance and not because of the difference in treatment.
Taking Femara for 5 more years also didn't improve overall survival. Overall survival is how long a woman lives, whether or not the cancer comes back or grows.
But taking Femara for 5 more years did reduce the risk of distant recurrence -- the breast cancer coming back in a part of the body away from the breast -- by 28%. This difference was statistically significant, which means that it was likely because of the treatment and not just due to chance.
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My plan as well!
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Cheryl
Like all oncologists, that is a lie. If you read the drug insert that comes with the medication you will see that 94.4% of people taking the drug experience side effects. It is a horrid drug that if they tried to give it to men, they would never tolerate it or its poisonous side effects. Oncologists are the slowest doctors to advance in any degree. They will not even engage you in an educated debate because they have no answers. I have no faith in their "lack of care". I am stopping the drug myself as the rate of improvement or lack of recurrance is only around 1.6% and their is absolutely no difference in overall mortality. 5 years and all these horrid side effects are a tremendous amount to give up or endure for 1.6%
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The ONLY reason to take Femara is for recurrance in the opposite breast, It has no effect on distant metastisis.
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Cocktails - where did you get this idea? There's a lady over at liver mets who says her liver mets cleared up with Femara.
"The ONLY reason to take Femara is for recurrance in the opposite breast, It has no effect on distant metastisis."
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Femera like other hormone therapy is a systemic therapy. Cocktails it does protect the other breast but it works everywhere knocking cancer out.
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Took arimidex a month and got horrific arthritis. Knuckles deformed and fingers crooked.
Took aromasin less than weeks. Entire body ached like having the flu.
Taking Femara 18 months. Have fibromyalgia symptoms, trigger fingers, hair loss, look 10 years older.
BUT. Dad and older brother died of mets in 2013 and 2015. Younger brother has grade 4 cancer in lings, bones, liver. He is in a lot of pain. For me it's a gamble i won't take. Bring on the hat
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My side effects seem to build up over months. It takes a while for them to go away. I have been off a year and still feel the effects although significantly reduced. Trigger finger is gone but some mild arthritis left in my leg and back area. I think my hormones are changing too, dryness going away. Weight is coming off too.
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bosum, I took anastrozole and exemestane but never femera. I don't know why my onco didn't suggest it. I hear femera has fewer side effects but some beg to differ. My menopausal hair shed happened years before cancer. It has improved quite a bit, I didn't experience hair loss on AI drugs but my skin and hair was dry. It is getting shinier since I've been off. I think my hormone production is making a bit of a come back. I hope it doesn't cause any problems for me. I have been off for a year now. Still have the ear ringing. Joints much better, no more trigger finger my dry eye is better. Almost there, weight is much better.
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Wear my laser hat every other day
Crossing my fingers it works! Will keep you posted
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Which Breast cancer benefits most an extended time on Femara? Has there been any research? I am highly oestrogen + 8/8.
But my breast surgeon said it would not benefit me beyond 5 years. Perhaps it's more indicated in other dx's that 10 - years is the way to go?
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The plan has been 5 years on AI, I did almost 4 years. The eye problem was severe enough for my doctor and I to agree no more. He did ask if I want to try tamoxifen I said no. He said ok.
Thank God my eye is almost completely better now.
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I was on Tamoxifin for a year and have now been on Letrazole for 13 months. My SEs have gotten unbearable in the past month. Severe joint pain with numbness and tingling in my arms, mostly my right arm. I had 2 sentinel nodes removed in my right arm and wonder if that is why my right arm is affected more. My right hand hurts so bad that I can barely write. I also am struggling with walking because of pain in my feet and legs. I stopped taking the Letrazole a week ago and see my Oncologist at the end of this week. I am so torn!!! I'm concerned about blood clots with Tamoxifen.
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Been lurking for a while. I am supposed to be changing from Tamoxifen to an AI in February but it sounds like everyone here is having a horrible time with the AIs. Is that just selection bias (people having problems with AIs are more likely to come here to seek support) or are they really awful for everyone? I ask because my doc also offered for me to stay on Tamoxifen which I am tolerating with no difficulty. I am concerned because I have an extremely active job that requires ongoing fitness and also requires me to stay below a certain weight. Is there anyone out there who has been on an AI for a significant period of time and is doing fine?
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SusanRachel, the only way you are going to know is to take the drug yourself.
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SusanRachel- I have been on Femara for 10 months. I haven't had any significant problems. I take vitamin D, calcium, magnesium, vitamin K, glucosamine sulphate and turmeric. I don't know if they are helping, but have heard that they may alleviate the joint pain. I also walk at least 30 minutes every day. Claritin is supposed to help as well, but I have not needed to take it. Please talk to your doctor before taking any of these supplements or meds. My hair is not thinning either. I take biotin for my nails, which have been terrible since going through menopause, so this may be helping me keep my hair so far. I think the most annoying thing that could be attributed to the drug is some forgetfulness. I will need to talk to my MO about this next time to see if there is a way to measure cognitive loss.
My advice is to try the drug and see how it affects you. I'll stay on Femara for as long as my MO allows. Mets from ILC can be awful so the SEs from Femara would need to be pretty bad to make me quit.0 -
I switched from Tamoxifen to Letrozole 3 months ago. So far, things aren't too bad. I will say for me the SEs on Letrozole are a bit more pronounced than the SEs I had on Tamoxifen. Those include a bit more joint discomfort, dry eyes and vaginal dryness. But certainly nothing so far that keeps me from working out, going contradancing and generally staying active. I also notice more hair in the shower drain on the Letrozole, but haven't noticed any real thinning so far. I'll definitely keep monitoring that.
My hot flashes have actually improved on the Letrozole, so at least there is one improvement! I've also been working hard at losing the 14 pounds I gained after diagnosis and during chemo and radiation. It's slow going, but I have had success, so weight gain on these drugs is not a given. There are many women who tolerate the AI's without too many QoL SEs. As Meow13 stated, you won't know how it will effect you individually until you take it yourself. The great thing about the AIs is that there are three you can try. And if all else fails, you can always go back on tamoxifen.
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I will be starting femara on Monday along with ibrance and a trial gedatolisib. I have lost 20lbs since 11/22. I have cut out all meat, sugar, dairy and breads. I have cheated a few times. I'm hoping I can still continue to lose even after being on these! I had an oophorectomy last week also. I know all these things are not helpful when trying to lose. I just know I need to lose to help with fighting this cancer too.
Hope everyone is doing well!
Misty
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Happy new year everyone. I hope for the best AI benefit. May it keep the cancer away wiith few Se's.
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SusanRachel....I've been on Letrozole for just over 2 years. No major SE's for me. My hair is thinning a bit at the hairline but so is my sister's and she doesn't have BC...so it could be aging or just hereditary for me. I do exercise regularly and get monthly massages. I also take Fish Oil, Vit D, turmeric and magnesium. I do believe the majority of people who don't experience problems don't come here to post.
All you can do is try the drug....and if you have SE's try to manage them (but don't expect to have them) just be aware of the possible side effects.
Also, for me I had already been thru natural menopause so maybe that's why my SE's weren't as severe.
FYI
Fish Oil and Tumeric help with joint issues
Magnesium helps with hot flashes
and we all need Vit D
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thanks JFL and zerovka, and probably a few others, who mentioned Cymbalta as a possible help for Femara joint pain.
I saw my oncologist today. She said, yes, the Cymbalta study showed some women reported less pain, but not a WHOLE LOT less, and, the placebo pill showed almost the same results as Cymbalta. But, damn it, Femara has held the cancer back. I have had 5 weeks off, 5 glorious weeks!! So, I'm feeling strong enough to say, I'm going to give it one more shot.
I was only taking Femara every other day, and still had bad joint pain. But seeing the scan results today, seeing how much more active my tumors were after just 5 weeks off ... will try to get a little more time on Femara.
My MO also outlined my next options -- faslodex with Ibrance, a drug trial that affects androgen, and an older drug she described as a relative of Tamoxifen.
I know some women have no options, or nothing besides chemo. So I'm grateful for what I have. And I'm really glad to have had the Femara break. Wish the treatment that keeps my cancer from growing didn't make me feel so bad.
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