FEMARA
Comments
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Hi Michele - I was under the impression that Femara was only for post-menopausal women - You may want to double-check with your onc. Good luck - D0
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Hi All -This is my first posting. I got through surgery, chemo and rad pretty well but the Arimidex and now Femara seem to be the most difficult part to deal with. The side effects- arthritis, joint pain, mood disturbances (anxiety), vaginal dryness and irritation,loss of libido, night sweats and hot flashes also make me feel like I am another person- an 80 year old. But I don't know what to do because I want to do everything possible to prevent a recurrance. Did anyone switch from an AI to Tamoxifen ? Does anyone know what the difference in effectiveness is? I hesitate to take Effexor-does it really work? Any other ideas or suggestions-boy would I appreciate it. Has anyone tried an Estrogen ring? It's great to have someone to talk with about how to deal with this. Thanks
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Hi Hockeynut,
Femara can be given to pre-menopausal women as long as they don't have their periods. I haven't had one since June and I am getting Lupron shots every 3 months to ensure that I don't. There's also a good possibility that chemo put me into permanent menopause.
Thanks Kerry for the suggestion on taking it in 2 smaller doses. I'm going to call my onc tomorrow to ask if this is okay
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OK... just had my ovaries and tubes out on Tuesday. Having my breast surgery next Friday. Supposed to go by and get samples of Femara and start them soon. After reading this thread about the SEs, I'm scared to death!
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Mom, don't be scared..this is nothing compared to all that came before it! I am DETERMINED to get on top of this femara debacle, if only to help other women. I am winning at the moment. I just need definitive info from a super-specialist regarding splitting the dose between morning and evening. I should have this in the next few days so stay posted! Also, I have been craving bananas (which are really cheap here atm) so I have been taking the tablets (femara, glucosamine and livatone) with a banana. Voila! No funny tummy. The joint pain is directly proportional to the amount of exercise I do: Harder walks, less pain. We can help each other here! Anyone else got some tips?
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I agree that for the joint pain, exercise is the key. Once I work through the first few minutes of discomfort, my knees and ankles feel much better.
I'd like to know if anyone else has been having frequent headaches and if they resolved.
Also any problems with vision changes?
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Thank you kerry_lamb!
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Mom, my pleasure! I am sure that every single one of us has bigger fish to fry than the fecker Cancer!! So let's get on with it. Yellow, interestingly I have woken up with some cracker head-aches..more the dehydration kind, like with a hangover. I am thinking that maybe the hot-flashes (and associated sweating, although I don't feel sweaty) is causing actual dehydration and hence the headaches. I drink water during the night now, and that means I'm up for a pee every 1.5 hrs! Is there no end to this??
I am going to get one of those 'chillows'. Good reports everywhere about those. Vision changes, Yellow? I'm 50 and just got specs for driving. Everything past the end of my outstretched arm is super-sharp! Are you worried that yours are femara-related? I think mine are age-related...sigh 1 -
kerry-lamb ~ GOOD TIP on the Chillow! It's the best investment I've made since starting treatment. I'm thinking about getting a second one to cover my shoulders. Glucosamine and L-glutamine have helped a lot with joint and neuropathy issues and extra hydration has really helped the headaches. I'm so grateful to have this forum! None of this info has been given by my onc or case manager. Eagerly awaiting word on the dose splitting, it seems to help reduce the hot flashes, just wondering if effectiveness is the same.
Nico
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My oncologist has perscribed Femara with any information on side effects, etc. How much is weight gain and joint pain a problem? When does it begin? Has anyone started on it gradually?
Jo Anne
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Thanks for the input on how you are handling the headaches. I've had migraines since my teens but these are different and I also wake up with headaches. I am hydrating well so not sure that the nocturnal headaches are night sweat-related.
I'm pretty sure the eye changes are FEMARA related. This isn't normal age-related change. I went to see my eye doctor about the vision changes. Unexpected bouts of blurriness and one instance of temporary partial loss of vision in one eye. After several tests that show all was normal, the eye doctor has referred me back to my PCM. Awaiting an appt. in a couple to weeks.
As far as weight gain, I am actually working on losing weight. It is harder but not sure if it is due to the FEMARA or the hysterectomy I had last year. The weight is coming off, though very slowly.
The joint pain on the other hand is intrusive. After sitting for long periods, I struggle to get up. I dislike getting down on the floor unless I have something nearby for leverage. Exercise does alleviate the joint pain. I use a stepper for 30-40 minutes everyday. A very good non-impact cardiac workout.
All I've been able to find on the FEMARA site is that there are post-market reports of "vision disturbances" and vision blurring. Can't find anyone to tell me what that means.
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I started taking Femara in August. The bone/joint aches in my hand, wrist and elbows and of course the 100 year old feet, has continually gotten worse. I had been taking Fish Oil, Manesium and Vit D3, with no obvious results.
As of yesterday, I have decided to take 2200 mg of Glucosamine w/MSM. For those of you that may be also taking this, how long did it take to hopefully feel some relief? Boy for a gal who never took pills, I now have my "granny" pill case !!!
I as well, exercise, have a physical job and have been doing Yoga twice a week. I'm really trying to get over the achy hump without having to take Ibu's or Aleve !!!
I always try to remind myself that I am fortunate in the long run that I have an option to take a AI, while others without ER/PR+ tumors don't have.
Carol
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My pain has lessened when I changed magnesium brand. I tried Natural Factor, magnesium citrate, 3 times a day and it does make a difference, the other brands I had tried did not help as much.
I still have pain in one hell but the hip pain and leg pains that use to wake me up don't anymore. I also take 3 caps of omega 3 , and cal+D.
Hope this well help someone
Welga
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Is Biotin sold over the counter or do I need a perscription?
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HensonChi ~ Biotin is sold over the counter.
golfer779 ~ It took about 6 weeks of daily glucosamine before I noticed a signifigant difference.
kerry_lamb ~ Any word from your doc yet on wether or not Femara is OK in a split dose?
Nico
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Hey Nico! (and all you other femara-hostages!) No word yet, but he sent me a copy of the email he sent to the HT guru of the southern hemisphere..my hub is best mates with the guru's brother..phew...what an intimate connection I have! Will announce it as soon as I hear..you can depend on it. Nice to hear about the glucosamine too. Every little bit helps, doesn't it girls? I have been doing a 40 min walk DAILY (!) with two little downhill running sections. Can't tell whether or not the sweat is due to good old heart-pumping good health or an hour-long hot flash! And believe me, I have to be detonated off the couch normally!
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Hi girls! I received an email today re dividing the dose; it contains some interesting information, with more to come: "....A good question re division of tablets. I am not sure of the answer. I will contact the team at Novartis and at AstraZeneca and see what information they may have. I have had one pt who developed a severe psychological problem with swallowing tablets and so crushed her arimidex. My recollection was that this was thought not to be such a good idea. Nevertheless I will check up on this and let you know. I had another pt who took her tablet every 2nd day.
Your suggestion of checking oestrogen levels is a good one, especially if the local lab can do an ultra-sensitive level. Most commercial labs can only give you a figure such as <44 etc. Nevertheless, even if they cannot do an ultra-sensitve level, it may be worth checking the level as well as the FSH. If there was incomplete aromatase inhibition and so a rise in the E level, then one might also expect a fall in the FSH level....."Have a great (pain-free) day! XXX
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Nico, thanks for your input on glucosamine, keeping my fingers crossed for some relief in the near future.
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Hi Kerry_lamb. Thanks for the email info. I am assuming this email info is from your oncologist or one of your doctors? I am curious what her/his thoughts are about the patient who takes a pill every other day and which pill it is? I am also curious to hear what the drug companies say. I don't think they will divulge information that contradicts the "selling" or marketing of their products.
Thanks so much. E
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Hi Elizabeth, and everyone else! Sometimes I forget what I post where so....the email above (in italics) is from a HT specialist in Melbourne, advising my onc. He is a major trail-blazer in this area..gives symposiums all around the world etc etc. My husband is best mates with his brother, so I have been blessed to be on the 'bat-phone' to this guy through my diagnosis and treatment. I thought it was interesting that one of his patients takes a tablet every two days. He is VERY single minded about HT, so I can safely assume that literally halving the dose as she does mustn't affect the long-term efficacy of the drug. So my case..where I simply split the dose rather than halve it..it mustn't either. The concerns, pending advice from the manufacturing lab, is rather that tampering with the outer shell of the tablet means it may be destroyed by stomach acids too soon. The pharmacist at the cancer clinic I attend said, tablet-wise, no problem in simply halving it. I guess we just have to wait to hear from the big guns again. Have a great (pain-free) day! XX
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Hi Kerry_lamb. Thanks so much for emailing back. I actually take 1/2 every other day. I just can't take the full dose. My side effects are so bad and I feel so weird that I made the decision to dose the way I do. I am very small and if I am going to continue this at all I had to make this change. I see my onc next week and will tell him the truth. I'm wondering if you might ask this specialist why we have to poison ourselves for 5 years. If the AI's are supposedly more efficient than Tamox why 5 years? Also, being without any estrogen for any amount of time seems incredibly hard because of its effects on the joints, the heart, the spine, etc., etc. I'm not sure the trade is worth it. Does he have a web site or anything?
Thanks so much!!!!!!!!!!! e
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The 5 years must have something to do with the old saying...if you can make it 5 years without cancer coming back you're pretty much likely not to get it. Maybe they want to keep it at bay for 5 years with the AI's because you'll be out of the 'most likely to return zone'. That's my take on it... anyone else have a different theory?
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Yes, Artsee, I think that is pretty much it from what I can gather. This guru does not have a website..(I guess he would if he was in the USA!) He in fact works out of a VERY dingy office in one of our major hospitals. Luckily for me, and the world, he is so obsessed with this particular field of women's health that he cares not one tap for self-promotion or frills or gimmicks. He is a real scientist's scientist, and uses his extraordinary intellect and skill to help us to live 0
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Yes, thank goodness for our medical researchers. So many of the so-called "nerds" we knew in high school --you know, the ones who always aced physics and chemistry -- have turned out to be gods in the scientific world, for which I'm sure we're all exceedingly grateful.
A couple of weeks back, I posted that the middle fingers of both hands had become quite stiff. Well, that was the precursor to trigger finger! The Mayo Clinic site has a good description of this. Definitely another Femara s/e, but something I can get used to, i think.
Good wishes to you all on the Femara journey.
Linda
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A bit of an update on splitting the Femara tablet and taking half in the am and half in the pm: I have emailed Novartis and got a couple of emails back but of course they just say the same thing as what is in the product info in the box. Stock-standard computer generated response. So I have put my cousin on the job (she is a pharmacist) and she is confident of being able to get an answer. I will keep you posted. In the meantime, my joint paint has reduced so dramatically that I can hardly believe it. I am taking 1500mg of glucosamine morning and night, and the calcium tablet, and I am splitting the femara tablet still. It would be easy to conclude that the reduction in pain might be due to the fact that the split tablet is not adequately knocking out the aromatase. However, I'm hot flashing away like a row of woks in a Chinese kitchenso I'm guessing it's still working! I'm also walking a demanding walk for 40 mins a day. There is hope, girls! Anyone else using glucosamine? 0
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I started taking glucosamine and chondroitin for pain in my hands, but had to stop after a couple of weeks because it gave me severe heartburn. Talked to my pharmacist about using something else, and he told me that, actually, glucosamine is for osteoarthritis which is not what is causing my discomfort. OA pain comes from a reduction of synovial fluid in the joints, which causes destruction of cartilage, and bone to rub on bone. Estrogen depletion doesn't cause synovial reduction, apparently. My problems are with the muscles and tendons, not the cartilage.
So confusing, so frustrating! Kerry, I bet we're all really anxious to find out about the splitting of tablets. Let us know soonest, okay?
Linda
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Hi Linda! I'm a fan of the pharmacist when it comes to advice, but in this case I have to go with the big HT specialist in Melbourne. His group has published a glossy leaflet about AIs and managing the side effects, and he specifically recommends using glucosamine AND fishoil caps. And this is coming from someone we would not expect to support complementary therapies! To tell you the truth, I cant tell if my pain is coming from joints, muscles or the bones themselves, and I don't really care HOW these things work, as long as we get some relief. It has taken about 3 months for it all to 'kick in' which is what the leaflet says too. Re the heartburn: yes, I had plenty of tum-related stuff to start with and actually blamed the calcium..but who would know what was going on, really? LOL! I know ALL these tablets are best taken with food. I swallow mine while eating a banana every morning, and at night take them about an hour after my dinner. This is after much experimentation. (Gosh I'll be glad to get a life back!) How are you with bananas? I can't seem to get enough of them and they are cheap here atmStick with it girls! I want to be still discussing this shite with you in 19 years time! XXX PS can someone tell me if I am right in thinking that the SEs of AIs MIMIC the symptoms of osteoarthritis, rather than actually CAUSE it? I'm sure I remember my onc telling me this, but... you know..... 0
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Yep, I've also heard and read that AIs mimic the symptoms of OA. Well, if my hands get any worse, I'll try the glucosamine again. And yes, I love bananas -- have one every morning in my blueberry/strawberry/flaxseed/yogurt/lowfat milk smoothie. MMMmmm..dee-lish!
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Hi, I'll just jump in here with a various comments. My name is Mary. I will take Femara after a few extra rounds of chemo.
I almost wish I hadn't read about the side effects. shudder. I'm just going to totally pretend that joint pain does not exist, even tho I already have it, due to overuse. I am really glad to consider glucosamine again. I took Femara this last week, and notice morning pain particularly.
Glusosamine is a bit constipating btw .. it changes the character of one's bowels, not to go into any great detail .. I suppose everyone's 'details' will be different anyway, due to different diets.
It's nice to know about the Alka Seltzer. What does it do to your digestive track?
edit: btw, after 10 days of Femara I noticed a significant reduction in the size of the node in my 'other' armpit.
Thanks for the collective help. It is just a godsend.
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Hi Mary, your 'other armpit' has just made me very happy! Sometimes all I think is 'Poison! Poison! Poison!', and I have to remind myself that oh yeah, this is about saving me from a premature death! I've read your posts before and they are always so encouraging or funny..I can understand your worry about hand pain, too. Thanks for the info about the bowel/glucosamine relationship. I WAS wondering.....I actually take double the recommended dose..can't find any info about that being harmful. I might ease off a little if my pain reduction continues. Don't be too worried about the SEs of femara until you really have to! My onc said the symptoms do settle down and I am MUCH more confident than I was even around Christmas time when I was ready to quit! I wish my cuz would hurry up with the tablet-splitting info..I could finally relax about this drug... 0
