femara long term effects

I was on tamoxafin for 5 years.  I had very few side effects.  I was changed to femara.  I stayed on it for 3 years, and never knew the horrible pain and arthritis in joints was a side effect.  I have been off it for 9 months and still can't stand up straight and walk.  I have constant joint and muscle pain.  Does anyone know if this goes away?  Is there any thing that can be done for relief from these terrible side effects? 

hi

I too have been on tamo for 5 years then now 3 years on Femara. I too have achey joints and feel 80 at the age of 55! I am seeing my onc next week for my yearly checkup and asking him how much longer I have to endure this as my quality of life is very low at the moment. I have a big problem with my feet as I can hardly walk as they are so sore. when I wake up they are stiff then they loosen up and after three hours at work I can hardly stand as my legs and feet are acheing so bad. Another problem I have is my hair is thinning and it is getting worse as the months go on. I'm afraid that the onc will say " It's better than having cancer", which is supposed to be comforting to me!

I do think however, that after you stop this, things will get better as the estrogen is returning to the system.

Can I ask why you have stopped? Was it prescribed by your doctor to stop after three years?

Thanks for your time. Good luck with things.

Val

Thank you so much for your response.  It is somewhat comforting to know someone else can relate to the problems I am having. 

I stopped because my oncologist said I had to take actonol with the femara for calcium and mineral loss.   I took one a week for 3 weeks and thought I was going to die.  It felt lke I had ground glass between all my joints and nothng wouold help.  Couldn't walk and just laid in bed.  Only then did I start reaearching the side effects of both drugs.  I had thought that at 65 I had arthritis,etc.  I am considerably better now that I am off femara.  I would like to be able to walk normally again without pain.  I can not stand up straight.  I am very hunched over but MRI doesn't indicate stenosis.  I have been off femara now for 10 months.

I have tried physical therapy, acupucture, water aerobics, chiropractors, massage therapy along with various meds.  Advil (800 mg twice a day) is the only thing so far that helps a little.

I had a lumpectomy in 12/99 for invasive lobular breast cancer.  The tumor was very small and all nodes and tissue were negative.  I had radiation, but not chemotherapy.   My oncologist told me 2 years ago that I could stop femara, but I continued it because my insurance paid for it and I thought it would give me more protection.  How I wil I had listened to my oncologist.  She never mentioned side effects.  But then they seldom do.

The pain I have in hips and knees is bilateral.  I have wondered if there is natural remedy or herb that would help.  I am at a loss to know what to do next.  I have wondered if there is any safe  estrogen replacement.  I also had a hysterectomy15 months ago.  That was elective.

Again, thank you for your reply, and I hope your pain lessens too.  I would be interested to know what your oncologist recommends.   

Sarahruth

 

Nothing in my life Was not negatively impacted by aromatase inhibitors. I finally just quit. I feel so much better. I have my life back. I don't know if it will be shorter but I do know that it will be better. These drugs are new. Who knows what the long term effects are. Getting well and feeling that beat up were mutually exclusive. My entire body was inflammed. I would not be able to continue work, support myself and take those drugs. My bargain will be to get back to my ideal body weight and run everyday instead of taking aromatase inhibitors. These drugs have huge quality of life consequences. I can't do it anymore! Good luck to all of my sisters that are a part of this struggle!--quote------ On 3/12/2009 sarahruth66 wrote: Thank you so much for your response.  It is somewhat comforting to know someone else can relate to the problems I am having.  I stopped because my oncologist said I had to take actonol with the femara for calcium and mineral loss.   I took one a week for 3 weeks and thought I was going to die.  It felt lke I had ground glass between all my joints and nothng wouold help.  Couldn't walk and just laid in bed.  Only then did I start reaearching the side effects of both drugs.  I had thought that at 65 I had arthritis,etc.  I am considerably better now that I am off femara.  I would like to be able to walk normally again without pain.  I can not stand up straight.  I am very hunched over but MRI doesn't indicate stenosis.  I have been off femara now for 10 months.I have tried physical therapy, acupucture, water aerobics, chiropractors, massage therapy along with various meds.  Advil (800 mg twice a day) is the only thing so far that helps a little.I had a lumpectomy in 12/99 for invasive lobular breast cancer.  The tumor was very small and all nodes and tissue were negative.  I had radiation, but not chemotherapy.   My oncologist told me 2 years ago that I could stop femara, but I continued it because my insurance paid for it and I thought it would give me more protection.  How I wil I had listened to my oncologist.  She never mentioned side effects.  But then they seldom do. The pain I have in hips and knees is bilateral.  I have wondered if there is natural remedy or herb that would help.  I am at a loss to know what to do next.  I have wondered if there is any safe  estrogen replacement.  I also had a hysterectomy15 months ago.  That was elective.Again, thank you for your reply, and I hope your pain lessens too.  I would be interested to know what your oncologist recommends.    Sarahruth   -----end quote------

The anti-estrogen drugs (and I do mean ALL of them, from tamoxifen to arimidex to aromasin to faslodex to femara, etc) are an especially nasty thing the pharmaceutical industry has inflicted on women.  I am sure that had these drugs been targeted at men, once the side effects became known, they never would have made it through research and development.

Whether they be estrogen-receptor blockers, or an aromatase inhibitors, these drugs for some women induce an extremely severe chemical menopause. Unfortunately, the one thing that would best help overcome the drastic side effects - administration of estrogen - is the one thing that these women can't have, if they don't want to risk recurring cancer.

The drastic side effects CAN be reversed, over time, and women can naturally maintain low estrogen levels - it takes time, patience, and perseverance to get and stay there.  Be especially careful to avoid supplements/herbs/botanicals that are recommended for treatment of menopause, as they contain very strong phytoestrogens that will act as estrogen replacers, and while rapidly easing off joint and bone pain, will also raise risk of recurring cancer.

Diet has to be the main component in regaining the ground lost after months or years of treatment with these drugs. Fortunately, the things that women most need to eat to recover are also the very things that will work against allowing recurrence of cancer. Push as much raw fruits and vegetables, organic whole foods as you absolutely can (except bananas, grapefruit, pomegranates, carrots and soy.)  Limit red meat - indeed limit all meat - two or three 3 or 4 ounce servings of meat a week is plenty.  The by-products of meat breakdown and metabolism for many women will only complicate detoxification of these drugs from the body and the rebuilding of connective and nerve tissue and bone.

Eat a lot of garlic and onions - they are extremely detoxifying and healing. Use cayenne pepper to improve circulation. Eat vinegary (pickled) foods - they provide a lot of micronutrients. Olives and olive oil are important foods, along with spinach and kale, beets, cranberries and other berries, cruciferous veggies.  Potatoes are a good choice - but not sweet potatoes or yams - they are very high in phytoestrogens. 

Supplementation is a great idea. All of the B vitamins plus choline are absolutely essential for recovery.  A good vitamin C.  Calcium, magnesium, zinc, selenium, manganese and vitamin D3.  Vitamins A and E.  More than you will get in a one-a-day multiple vitamin.  

Drink as much fresh pure water as possible - you need it for detoxification, and for building new healthy and strong tissues.  Steam distilled or reverse osmosis purified water are the best.  Drink plenty of green and/or black teas - they are powerful detoxifiers and contain lots of anti-oxidants/cancer-fighters.

A simple regular strength (325 mg) generic aspirin a day will help relieve inflammation, and will also inhibit prostaglandins necessary to produce estrogen. 

Grape seed extract and essential fatty acids (the omega's - gamma linolenic acid and conjugated linoleic acid) are vitally important for recovery.  You can get the fatty acids through several different types of oil or through roasted pumpkin or squash seeds - just be careful with flax seed oil - it contains very strong phytoestrogens that might act as estrogen replacers instead of blockers.   Much better to use a maxiumum of a tsp or two of ground flax seeds in cottage cheese or yogurt or applesauce a day.

(A tiny bit of food grade flax oil applied periodically on the nether area to offset dryness of very delicate tissues will not pose a problem as far as too much estrogen.)

Avoid evening primrose oil (unless you are HER2 positive - studies have shown definite benefit there), black and blue cohosh, red clover flowers and any kind of soy. 

To get an idea of the kinds of things that women can do to start their bodies healing while also continuing to work to either fight or prevent cancer, take a look at the regimen I used: 

http://motherearthtreasurechest.blogspot.com/2008/09/my-pers

It's not intended as a prescription for all people - but certainly can give women good ideas of a place to start.  There are lots of other good articles on my blog - about the different types of vitamin B, about vitamin C, some recipes, etc.  Feel free to look at whatever interests you.

My best recommendation for any woman trying to recover from a prescritption anti-estrogen therapy is to find a naturopathic practitioner, and get them to work with you on the foods, supplements, herbs that you each need to best fuel your body for recovery while working to keep estrogen levels down gently and naturally. 

Sincerely,

Tre

Thank you for your reply.  I wonder how long it takes for femara to get out of the system.  I stopped last May 13th, and it has been 10 months.  I wonder if I'll ever get my life back.  After this experience, the meaning of 'quality of life' takes on a whole new definition.  Not to mention that it is only a little over 40% effective.  I guess that is high for cancer treatment, but with a new drug I wish I had all the information and side effects before taking it. I would have stopped taking it much sooner.

Thanks again and I wish you a very complete recovery.

Sarahruth

I am 47 yrs old and was diagnosed with breast caner at the age of 44. I have been taking Femara for 1 1/2 yrs. I keep telling my onc. that as time goes by my side effects are getting worse. They say in time you will get use to it. Well... guess what? You do not get use to it. It is something you just learn to deal with day in and day out. My bones hurt, Joints hurt, mood swings are horrible, trouble sleeping, energy level bad(even though I work out 4 days a week and push myself to do that), Hair thinning getting worse, bottoms of feet kill me, blah blah..... I tried getting some info from Novartis to see if this was common for side effects to get worse but they will not talk to the person (patient) that is taking the medication they want to talk with the Doctor that you see. The doc will not call them because they are too busy and I cannot get any answers. Seems like they want you to take it and oh well with you. 

I was on Tamoxifen for 3 years...was active during chemo and radiation.  After riding in 2 100 mile bike rides, I was put on Femara.  Within 3 weeks I had knee, then thigh, then shooting pain and throbbing in my legs.  I took myself off Femara and went back to Tamaoxifin.  I have the best physicians at Brigham and Womens in Bosotn who have not been able to figure out why, after almost 2 years I still have pain in my left legt and have gained 20 lbs because I can't exercise.  FINALLY 2 weeks ago I had MRIs of my hip and spine and found I have a lumbar spinal stenosis that looking online, Femara is known to cause.  Seems my nerves are being pinched.  Just to have a diagnosis after all of this is progress.  Everyone says..."The Femara can't still be in your system,"  Right...it just ruined my spine.  Not sure where I go from here.  This has been constant pain for almost 2 years with no one able to figure it out.  Well, my spine has changed...I'm sure because of the Femara. Go get MRIs of the spine!

I have been on anti-estrogen therapy for 13 years.  This is my second round with Femara.  For the last 3yrs I have been on Faslodex monthly injections along with Femara daily.  I thought my most recent side effects were related to the long term Faslodex but I'm beginning to think maybe it is the Femara.  I would love to hear from anyone else who might be on this same treatment.  I'm 43 and have lived with re-occuring breast cancer for nearly 15years. I try to walk 45 min nearly every day and push myself to stay busy and not give in to the aches. Most recent PET scan was clear. In the last few months I've noticed more and more lower back pain, joint stiffness, nerve pain shooting into my right leg, and just overall bone pain in my legs.  I have actually lost weight and the last few months have only been sleeping about 3-5 hours a night even with sleep Rx.  My doctor is great and I know she has extended my life way beyond the statistics but I'm beginning to get discouraged and she has already told me as long as this is working she has no plans of taking me off.  I have not talked with her about the recent increase in pain b/c of course there is some fear about stopping the treatment.