FEMARA
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jt0703 I have been on femara now going on my 6th year. My onc was going to stop it at 5 until we discussed the number of nodes involved in my dx (14/32). She decided that she wanted me to continue. I guess the research has been completed for the five years but not for longer (I would guess that should be coming soon). My SEs have changed since the 5 year mark, especially my feet feeling like egg shells when I first get up. When I did the elyptical at the gym my feet would go numb. The more I do that, the better it gets. The egg shells go away very shortly after I move around. Other than that, had sx on trigger fingers several years ago I believe was SE from the femara. I believe it has helped me the way it is supposed to and my bone scans show good as I am on Boniva I believe. Hope this helps.
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Hello ladies,
Was just wondering......have any of you ladies had any hair loss since been on femara. Have been on since beginning of May and each week for about the last month my hair has become thinner and thinner. Especially along the hair line around my face seems to be moving back further and further. So sucks.....was so happy when my hair came back after chemo, full and curly now this. Sigh!!!!! Any suggestions?
Stage 1, grade 2/3, 0 nodes, HER2+.
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My hair is very fine and straight now that I've been on Femara. I started Femara in November and when I got my hair cut in Dec. my hair stylist noticed and asked what was going on. She knew about the BC but didn't realize about the Femara. She said it actually felt nicer that it was before when I actually had some curliness and thicker hair. When I went to visit family in Jan., my mother asked if I was losing my hair, so I guess it can have that appearance, although, I do have a lot of hair in the shower and sink!
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Chico - thinning hair is a possible SE of Femara. I started Femara only 6 weeks after my last chemo in July 2008. So, coupled with the chemo hair loss, my hair regrowth was very slow and is very thin, especially on the crown, compared to what is was before BC. Fortunately, it has retained its wave (was straight before BC) so that helps! But I have to wear it short now. I only wash it once a week, and then use Moroccan Oil styling cream.
As for how long to stay on an AI -- my onc told me it may well be for the rest of my life, or until research says otherwise or something better is developed. It's really the only arrow oncs have in their quiver (since they must follow standard of care) in helping us protect ourselves against recurrence. Although it would naturally be beneficial if oncologists as a group would look "outside the box" for other means.....
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Has anyone tried the Femara Cares Program? It's a prescription discount card. Femara cost is $10.00 for 1 month supply. 866-280-7727. Call this number for more info on it. Onc doctor gave me mine. Hope this helps
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wldflwr, yes, I've been using that for months now. My presrciption is for 90 days and I get 90 days worth for $10.00. I just have to remind the pharmacist when I get it filled.
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I'm counting the months until I'm off Femara. I had just started getting eyebrows and eyelashes but the Femara brought that to a halt. I'm getting eyebrow tattoos next week because I can't stand looking in the mirror and still seeing a cancer patient. My hair is also thinner and drier, and my skin is also much drier. I'm much more comfortable with the mechanism of action for Tamoxifen, and at least one study shows that AI/Tamoxifen combo over 5 years is just as effective as 5 years of Tamoxifen.
I tried using the card but the pharmacy only gave me the discount that first time.
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Jane59, perhaps you could take a break for a couple of weeks from the Femara to see if the cardiac and respiratory side effects subside? If they do, then you'll know it was from the femara. In your shoes, this is what I would do. Seems like a simpler way to find out than going through all kinds of testing and having to deal with more treatments and possibly cardiac meds as well.
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rgiuff, Hi Rose thanks for the reply I had considered doing that but I think I want to have all the tests that way I will have an idea of my overall health & if it turns out it is the Femara I can say "I told you so"
Honestly I'm not sure which way I want to go, with Tamoxifen I had hot flushes, leg cramps & the risk of blood clots slightly higher was a worry, but it was good for protecting bone density & cholesterol. With Femara the flushes are worse and possibly the cause of the tachycardia but I'm of the belief that it's more effective re: the breast cancer.I saw the specialist today and I really liked him (I've been very lucky I like all my docs) When I was in the ED they did a lot of the tests already. Because of my high blood pressure & the fact that it's taking 3 drugs to control & I'm only 51 he wants to make sure there is nothing else going on. Tomorrow I'm having more blood tests & for the next 4 days I have to collect my urine for testing, then a few days before he gets the results. Depending on what they show he'll either call me or send a letter with the next step
The new bp med has given me more fatigue but I don't mind that because I no longer have those horrible anxious feelings. Also there is a possibility that I might be able to go on a larger dose of this new med & drop one of the others which would be good because it's a quarter of the price.
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Today is my onc. appointment to decide what to do now... I have pulled my 5 years with Femara. I have actually been off it now for a few weeks as I took all my pills and decided to hold off on getting any more (have to get 90 at a time due to insurance) hoping I am done with it. We shall see. I am a three time survivor, but all three were Stage 1, no positve nodes (DCIS, ILC and final one was DCIS with IDC). I have started to notice some subtle changes since being off the Femara- eyesight is improving which is weird.
Hang in there everyone.
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Aspen, I hope this concludes your Femara! I can't imagine hurting as much as I do now for another four years. I've been on Femara since July 2009. Last night, I went to reach for something on my nightstand and had to turn my entire body because the pain in my arm and shoulder was too great. I can't even take off a tee shirt anymore. This has all happened in the last couple of months. My next oncologist visit isn't until next month. I'm hanging on by my fingernails.
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Just back in from the onc. visit. I am officially done with Femara. Because I had neg. nodes, he said that he recommended stopping it. If I had had positive nodes, I would have continued for another 5 years. I still have the shoulder pain at night too with stiff fingers and feet in the mornings. Hopefully, the SE's will diminish with time. I can honestly say I feel better with more energy since stopping the Femara 3 1/2 wks ago when the pills ran out. Hang in there if you can. My SE's eventually got a lot better the longer I was on Femara. Physical activity helps with the soreness, stiffness even though it may be tough at first.
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Congratulations Aspen!! Be healthy!
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Thanks everyone for the congrats. Hugs and blessings to all. Headed to the gym.
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Hi Texas: Understand completely with problems in hands and wrists.
Please hang in there.
Hugs,
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I read about so many terrible side effects for Femara. It made me afraid to even start it but the doctor insisted. But.......I am on my 20th day of Femera and NO side effects. I must tell you that every day before I take the medication I hold the bottle of pills in my hand and I pray over it and ask God that there will be no side effects. So far it is working. So, if you must start on Femara, please don't be fearful. You need not have any side effects. Ask God to help you.
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I didn't start getting SEs until a year after starting Femara. I feel blessed for having one really good year finished anyway.
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I started Femara about a month ago. I already have osteoarthritis so I'm not sure I'd know the difference between a Femara SE and what I'm already experiencing. I am a candidate for knee replacement, so I'm already in a bit of pain. Arthritis-strength acetaminophen helps a lot.
Michelle
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I'm glad Texas 357 didn't have any SE for a year but there will always be those who do not honor and trust God and prayer. I know she is saying for me to just wait. My SE will start. I do not believe so. I will continue to pray and ask God to protect me from all SE and He will. I encourage all of you to do the same. Even if your SE have started. Start praying now and watch them stop. God is able. He is much bigger than cancer or medications.
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Maranatha, how dare you be so presumptuous! Do not put words into my mouth or chastise me about my spirituality. Your last post is completely out of line.
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Marantha wrote "Even if your SE have started. Start praying now and watch them stop. God is able. He is much bigger than cancer or medications."
If all it takes is spirituality or praying to get rid of side effects or even the cancer, why did we bother with surgery, chemo, radiation and drugs?! I think your solution is lovely for you Marantha, but most of the rest of us are happy to trust science and our doctors to guide our recovery. And most of us do get some side effects from Femara - praying or not.
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I have to agree with the other ladies, Marantha!
You have only been taking the meds for a short period of time, almost too short a time to be able to make such bold comments about your situation or anyone elses. I do hope that you continue to not suffer with any side effects, we are all individuals and we will all be affected differently by many things in life.
It is nice for you to have such a strong faith in God however I do not think that this forum is the place to push your religous beliefs upon others. There are many fellow BC sisters who are religious or that say prayers for our friends but this is the first time I have seen anyone admonish another for not having that same strength of faith.
Prayer can be a very powerful tool in helping us handle different situations throughout life however I wish that dealing with cancer was just that easy. I have friends who are very religious and I know that they pray for me constantly however they would never have suggested that I leave my treatment in God's hands alone. Lassie11 you are absolutely right when you say the rest of us trust in science and doctors to guide our recovery, and that's where my friends prayers come in for me, they pray that God will guide the scientists and medical professionals to care for us all in the best way possible.
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I am a firm believer in God and prayer but I do not think anyone has the right to get on here and say if you pray the pain will go away or no side effects. I was told by someone that I needed to take these pills as God must have given them to me to take, pain and all......I do pray everyday and I pray for people on here I have never talked to or met. I will say that if Maranatha is so strong in her believe then why is she taking these pills anyway?
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Just found out that my triglycerides were up to 591 and was put on something called trilipex. Also that tachycardia now is intermittant (only when upset or frustrated) so I made an appoitment with a cardiologist just to see if everything is okay. I read somewhere that femara raises cholesterol....for me it doesnt give me unbearable pain (most of it is restricted to the mid back and neck) but when I was on Osteoporosis medication like Boniva holy mother...I could barely move for a day or two after taking it. I do have cardiovascular issues that run huge on my mothers side (my uncle at age 37 got up to change the channel on the tv and fell over dead before he got a chance to do it) and my mother had a stroke at age 60 something (I'm 53) and a massive stroke at age 80. I had an abnormal electrocardiagram just before I started chemo and got the "red devil" stuff anyway.
Anyone else have cardiac issues with femara or a year or more out from chemo? How were you treated for it?
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This disease isn't like the common cold where people's experiences are virtually identical. Not only are there many variations in breast cancer, but we differ in our treatments and in the way our bodies respond to those treatments.
We come to this forum to learn from each other and to support one another. This is, above all, a place where we come for understanding and compassion.
Every second of every day is simply too precious to spend any more time focusing on someone who apparently doesn't get that.
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Marantha -- I can see telling people to pray for comfort in trying times but telling them that praying will cure cancer or its medicines side effects is just plain wrong and no better (at least in my book) than the people who tell us to drink "Holy Tea" or worse yet to just sit back and pray (and wait to die). If God is "much bigger than cancer or medications" then why did so many of us have to go through living hell to be treated? Didn't you also go through chemo and other treatments for your breast cancer?
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Pat634, it's got to be frustrating to need medication to treat the side effects of other medication. I haven't had heart issues but I do insist on having my cholesterol checked regularly as long as I'm taking Femara. Have you looked into using an aged garlic extract to supplement your cholesterol medication? I've seen studies indicating that it can help to lower total cholesterol.
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No never heard of that before but will try it. I had cholesterol levels in the 300's as early as age 21 so I think the femara is just adding to an already established cardiovascular problem. Does this taste like garlic? One of my issues during chemo is that all beef tasted like it had been drowned in garlic and made me very nauseated.
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No, there is a very faint garlic aroma when you open the bottle but there is little if any garlic taste.
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Re cholesterol levels and garlic: I was put on Crestor for off-the-charts cholesterol levels after chemo. Crestor bothered my digestive system so I purchased aged garlic extract in capsule form (my brand here in Canada is Kyolic). It also contains lecithin. I take two a day. While my HDL levels are still a little high, my LDL levels really dropped and the ratio is good. So I do believe aged garlic extract is a great alternative to statins.
Kyolic has absolutely no smell or taste. One time when I ran out, my DH picked up garlic capsules at Costco and I just couldn't get past the strong garlic odour (and I do love garlic!! -- but only in food, not pills....).
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