I was on Femara for 4 months and felt horribly old. My joints were stiff and hurt. I had hair loss. I gained weight around the middle. I couldn't remember one minute to the next. I believe it accelerated my age from 48 to 78! Is this common for this drug? I took myself off it. Is there any other drug that serves the same purpose like Femara without all the side effects?
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10/16/09 1:58pm
Hi Norma - These side effects sound very typical for an aromatase inhibitor, such as Femara. While you could try either or both of the other two AI drugs (Aromasin and Arimidex), I fear the side effects would be quite similar. You might ask your doctor about tamoxifen, which seems to promote weight gain, but doesn't come with the aches and pains, and probably results in less hair loss. While not as effective as an AI, it was the hormonal therapy drug of choice for years; and it would be better than taking nothing. Good luck - PJH
10/16/09 3:28pm
Hi Norma,Yes those are the side effects , my onc. changed me to Aromasin. Same problem but worse I asked P.J.Hamel and she gave me some good advice. I have been with my Onc. today and they have changed me to Tamoxifen. My Doc , said he would like me to be on Femara but I cannot walk with the joint pain. I stopped Aromasin 10 days ago now and the pain has still not eased have been told this could take some time. I started Tamoxifen last night. Had the same problem also with the memory loss.Good luck to you.
10/16/09 7:30pm
I have had so much joint and bone pain that I've been crying for two days now and can't even sleep. I can hardly move my fingers and my wrists, arms and feet hurt horribly. My Oncologist changed my medication today to Aromasin, but he told me to wait two weeks before starting. Is that what you did? Now, I feel even more afraid to start the Aromasin. I asked if it had the same side effects and the Oncologist said yes but the drug was a different type. I'm ready to quit everything. Even pain medication doesn't alleviate the pain.
Joy
10/17/09 5:12am
Good morning Joy, I think the more of us answer each others questions the more idea we will get of the suffering involved. I have answered DS Susan on her thread. I was advised to go straight from Femara to Aromasin. There was no change, however I have read on other forums that some say with time the joint pains have eased.
I know the pain you are in as I am in the same boat, tears fill my eyes for you as I know how you are feeling.
Please do not be afraid and at least give the Aromasin a chance you could be one of the lucky ones and find it helps. I had a long chat with my Onc. yesterday he would like me on Femara or Aromasin but for me this is not a life. I was advanced grade 4..I did not go through all that I have been through to end up in constant pain, unable to enjoy life. So for me I will stay on Tamoxifen and take my chances.
I have refused all pain killers and ant- inflam. drugs as these just made me tired. I was tired enough with the Femara. What ever you do do not quit, these drugs do make you weepy and depressed. No matter how many times go back and talk with your oncologist, there is a solution they just have to find it. Good luck Susan and try to have a good weekend. I am taking high doses of Omega 3 and find floating in a warm swimming pool helps. But most of all hang on in there.
10/22/09 9:34am
Just a note for those about to go on Femara, who might be frightened by this. Everyone's different. I've been on Femara for 8 months and have experienced some stiffness and mild joint pain which subside with daily exercise, but nothing that inhibits my activities or quality of life. No depression or other emotional changes. I guess early on I had some hot flashes and night sweats but very infrequently now. So that's all to say, it's not a given that these things will happen to you so give it a try.
10/22/09 11:01am
I am supposed to start femara next week. I am terrified of the side effects. I don't want to start. Is there anyone else out there taking it? Most people,it sounds like, have a hard time taking it. I don't want to have all these side effects. I am just starting to feel decent after surgery and radiation...I would like to hear from more people taking it to know what to watch for...is this stuff toxic????? I thought it just blocks estrogen..I am wondering why it would cause all these symptoms?????would it damage my body? What is in it that could cause people to feel so bad?
10/23/09 3:09pm
JODI; I TOO HAD HEARD OF ALL THE BAD SIDE EFFECTS OF FEMARA, BUT DECIDED THAT TAKING A DRUG THAT MAY SAVE MY LIFE WAS WORTH IT. I HAVE BEEN TAKING IT FOR OVER 6 MONTHS WITH JUST MINOR JOINT PAIN IN MY KNEES AND AN OCCASIONAL MILD HOT FLASH. ACTUALLY THE JOINT PAIN IS LESS THAN IT WAS 3 MONTHS AGO AND I HAVE LEARNED THAT GETTING OVERHEATED FROM HOT WEATHER OR EXERCISE OFTEN BRINGS ON A HOT FLASH. I FEEL VERY FORTUNATE AND WISH YOU THE VERY BEST. THINK POSITIVE, SO SO IMPORTANT.
PEGGY
10/23/09 3:28pm
thank you peggy.I am trying to think positive.but it is hard! maybe I will get lucky too. good luck too you and lets hope for a cure to this soon so we can really get healthy again! It is out there.I just hope it will be soon..jodi
10/23/09 3:28pm
thank you peggy.I am trying to think positive.but it is hard! maybe I will get lucky too. good luck too you and lets hope for a cure to this soon so we can really get healthy again! It is out there.I just hope it will be soon..jodi
10/24/09 8:39pm
peggy, are you still doing good on the femara? I have to start Teusday and I am really worried about starting this!!!! Will you please keep in touch? my e mail is josi2591@sbcglobal.net....Can you tell me more about your type of cancer? Can I ask what else you are taking? Did you have radiation , chemo. ? how much surgery did you have? Hope you don't mind me asking? I am trying to keep positive but I have an anxiety disordered brought on by pain from my fibromyalgia...THank goodness for my husband or I would really be a nut case! I have three grown children and seven grandchildren.I have always done everything for the holidays but this year I don't know what to plan on. It is always a stressful time for me anyway but this year, I don't even want to do anything. I am just starting to feel a little better after the radiation. Boy I dread taking this so much but I don't want to get the cancer back either....thanks for listening.....I would like to hear from anyone who has any ideas....thanks jodi
10/25/09 6:27am
Jodi, it's natural to feel anxious about starting any new medicine. But understand, many women do absolutely fine on Femara, with only minor (if any) discomfort. I've been on Arimidex 4 1/2 years; I'm stiff in the morning, but a bit of exercise takes care of that. You could take Femara, and not feel a single side effect. Of course you're going to hear from women who have had bad experiences; that's the nautre of us human beings, to talk about and share the challenging parts of our life, much more than the things that go right for us. So take heart - stay positive; and I hope things go well for you. PJH
10/25/09 11:22am
Thank yo pj! Please keep reminding me! I know I sound like a broken record. This whole thing has me in shock! I am going to try my best to take your advice. I am going to get back into my work as a reborn artist. I make collector dolls that look abosulutely like a real baby! The skin layers are painted on and the hair is microrooted one hair at a time.THis is my passion. THey can take months to make. It helps me too deal with stress. maybe this is a good time to start one so when I feel bad this can help distract me from the side effects....I love to see these babies come to life! (not really but they truly look real!) Perhaps I could send a picture? I don't know if that will work. THey truly are a comfort to me, maybe others would like to see them? I am going down to exercize soon. I use a recumbant bike and it is a godsent! It may be something I can continue..also light weights with universal pully weights...and lots of stretching and ball exercizes...I am trying to get back into the habit. I have to babysit with grandkids alot so it is hard to get into anything lately with the radiation but I have more energy now..best to start before the femara...please guys, keep writing....we can help each other through this...p j , how can I send pictures of my reborns? I would just love to share them! thaks for your re ply! jodi
10/25/09 11:27am
Hi Jodi - The dolls sound wonderful - and yes, I'd surely start one, if I were you - sounds like a good project for keeping you engaged and busy. If the photo is posted anywhere online, you can simply create a link to it using the link buttons at the top of this comment box. Look forward to seeing it! PJH
10/28/09 9:41am
I still haven't figured out how to put my reborn dolls on line! Please tell me step by step. I know little about computers..barely can get to this site..where is the link and what does it say? I would love to share these wonderful babies.....they are such a comfort to me to make them......thanks jodi
10/28/09 7:04pm
For some reason it doesn't work to try to add pictures to my page. I don't know if it is my computer or I am doing something wrong. I wanted to share pictures of my reborn babies as they are such a comfort to me and actually the distraction is good sometimes to just take a break from the cancer! jodi
11/ 1/09 8:39pm
hi PJ, I am about a three weeks from my last radiation treatment, almost a week on the femara. So far so good on the femara. I really don't feel any worst than usual. I always have fibromyalgia pain so it is hard to tell. I am not as tired as I was after the radiation. I have noticed the pinkness going out of my breast but darker in color. ALso the nipple is much darker and now and it is peeling away in patches leaving light spots. It is very tender like a sunburn too. It also looks all puckered up like an orange peel. Is this normal? I continued to use the ointment the dr. told me to use.It has helped alot but now the nipple looks awful. Also my nipple is off centered as the swelling from the cellulitis never went away. I am concerned as I don't see my onchologist until nov. the 19th. Then I will have another bone scan, cat scan, bone density and mammagram in other breast. I wonder if others have the nipples peel and look all wrinkled up...thanks jodi
11/ 1/09 8:50pm
Sounds like a pretty normal reaction, Jodi - unfortunately!And it may take awhile to heal, but eventually your breast should be looking normal again. Glad the Femara isn't kicking up any additional pain so far - we'll keep our fingers crossed, eh? Good luck - PJH
11/ 1/09 9:19pm
thank you PJ! I will try not to worry about it them..good luck to you too! jodi
10/22/09 5:36pm
I had done a lot of research on the side effects of Femara, and I was terrified of starting the drug. So many women have terrible side effects and have chosen to go off of the drug even knowing it would shorten their life.
However, much to my surprise after 1 year on Femara, I have been been blessed with only 1 side effect - hot flashes. I controll the hot flashes with 800 mg of Vitamin E, and it's decreased and some days even eliminated them.
I feel that taking MSM has eliminated any joint pain I might have had. I was on MSM prior to starting Femara. You can buy it in any drug store - but, I purchase mine from a pet store - it's works just as well, and you get a huge container that will last for several years. I mix it with my yogurt, and take yogurt with my pills (Vitamin C, E, D, etc.) - they go down easier.
If I were you, I would start MSM at least a month prior to starting Femara.
Good Luck,
Carolyn
10/22/09 5:54pm
thank you...... your comments make me feel much better. maybe I too can be one of the lucky ones! what is msm? did your dr. tell you to take it?why get it at a pet store? how much do you take ? how much vit. c, e d? have you ever heard of mushrooms helping this kind of cancer? There is a study going on at the city of hope in california that says that eating 4 oz. of mushrooms a day will help keep the estrogen from binding with the cancer. it doesn't work like the meds though..
10/22/09 6:15pm
I like to purchase at the pet store because it's extremely cheap there. I take 1/4 tsp or so each night.
Dr. has prescribed
* 1,500 IU of Calcium to keep my bones healthy
* 4,000 IU of D good for inflamation, antioxident, etc. (most cancer patients are very low on this)
* 800 IU of E
Vitamin D - this site (www.mercola.com is great for checking out most medical info including "D" and the proper tests to have your blood checked - the right test is: correct test is 25(OH)D, also called 25-hydroxyvitamin D:
http://articles.mercola.com/sites/articles/archive/2004/07/03/vitamin-d-levels.aspx
MSM, or methylsulfonylmethane, is a natural source of organic sulfur, which is necessary for the formation of collagen and the manufacture of many proteins in the body, including those that form hair, muscles and skin. MSM supports joints and connective tissue by providing the sulfur they need for proper function. Many MSM supplements also contain glucosamine and chondroitin, two naturally-occurring substances that promote joint health. In addition to supporting joints, MSM products may also help with seasonal or year 'round breathing health, as its believed to have anti-inflammatory effects. MSM is also known to contribute to skin health, promoting a younger look and smoother and softer feel.
You can get 3 in 1 products like below as well:
Info from Swanson vitamins:
Swanson Premium
Glucosamine, Chondroitin, & MSM
17 Reviews Write a Review Swanson $19.99
Item #: SW1081
Availability: In Stock
240 Tabs
Tabs size = S*, Pill Size Guide
- Three-in-one joint health formula
- Features the cartilage-building nutrients glucosamine and chondroitin
- Also a great source of MSM, a source of sulfur for tendons and ligaments
This three-in-one joint-health formula combines the cartilage-building nutrition of glucosamine and chondroitin with the additional support of MSM (methylsulfonylmethane), a high-bioavailability source of organic sulfur, which is an essential mineral for tendons, ligaments, and other vital joint tissues. Together, they provide a solid nutritional approach for daily joint maintenance.
Swanson Ultra Hyal-Joint is the perfect partner of glucosamine since it provides hyaluronic acid for replenishing synovial fluid that lubricates joints and reduces friction during movement.
Swanson's vitamins is a great place to purchase vitamins - good quality and prices. Their site is: http://www.swansonvitamins.com/Search?doSearch=true&ntt=&n=0&ntk=Level1&keyword=msm
Also, Puritan Pride is another one to check out.
10/22/09 8:13pm
Carolyn, thank you so much! If I bought the msm at a health food store or drug store, what would the dosage be then? I don't feel comfortable using what is designed for pets as they may not be regulated as well as for people...and pets are so much smaller? I will certainly get some though ! The d is going to be harder for us to get now with winter coming.we can't even get out in the sun..thanks again......jodi
10/22/09 9:35pm
Jodi, just a reminder that while you're still undergoing cancer treatment (drug therapy), it's a good idea to check with your oncologist before taking anything that may interfere. Even if you don't take the Femara, please check with your doctor about this, OK? PJH
10/22/09 10:12pm
thanks pj. yes I will check with my onch dr. I have an appt. with him on nov. 19th.....jodi
10/22/09 9:53pm
Thanks for the info Carolyn. I will go and purchase some. I would rather do something more natural to combat the side effects. I don't know if I will go back on Femara, but it is something to consider if indeed these other supplements help ease the side effects. Want to check with the oncologist too, just curious to see if he pushes only the aromatase inhibitor and nothing else.
Norma
10/23/09 12:43am
Good Luck!
10/23/09 1:00am
Hi Norma,
I was surprised when my onc. told me that the reason for my joint and back pain was because of becoming older (ok just turned 52 - not 102) and he told me NOT to bother with diet or too much exercise - just relax, take the arimidex and be grateful that you are cured from cancer...
Like many many women who have opted out of subjecting themselves to this horrendous pain - (look up the UK Breast Cancer Society blog sites) I decided to do some research. There are surprisingly many main stream doctors who are suggesting various natural ways of inhibiting the estrogen hormone - such as Dr. John Schriber and another book that you might want to read is by Dr. John R. Lee on "What your doctor may not tell you ... about breast cancer" I got this book through Virgin Book stores. Anyway just a thought. Take care and best of luck for whatever your decision is.
10/26/09 10:02pm
Hi ~ So sorry to hear about your pain.. because I can definitely relate to this.
I've been on Tamoxifen for the last 3 months and after much research, now understand why some of us struggle so much and/or are in so much damn pain.
I also carry a diagnosis of Fibromyalgia which was pretty much under control until all this hormone therapy began. I know now it wouldn't matter what drug I take, and certainly now would never agree to an alternative because the results would still be the same. These drugs only serve to incite those very symptoms you describe with Fibromyalgia.
I would seriously suggest being tested ... but of course, first DO YOUR RESEARCH.
Women who are in menopausal states tend to be more inclined for this condition, and taking a estrogen inhibitor has been proven to manifest the Condition.
I take Cymbalta for the pain - nerves, joints, aches, etc. and has helped tremendously. It doesn't take it all away, but it certainly makes it more managable so I can function and not feel like I'm an 80 y.o. woman trapped in a young at 50 body !
Good luck to you ~ yvonne
10/28/09 9:32am
Hi, I have to start femara today! I am really scared of the side effects. Did you get on something else? How are you doing? jodi
10/28/09 11:43am
Jodi, please don't pre-judge Femara. LOTS of women take it without a problem. I take Arimidex with only very minor aches in the morning, easily remedied by a good, brisk walk. So, NO FEAR - right? You can do this. Good luck - PJH
10/28/09 1:47pm
P J yes, you are right. I am just dwelling on it too much. I have an appointment to see a counsellor tomarow. I think it will do me some good. I just have too much going on right now. I need to give this stuff a chance. It might save my life! I don't want the cancer to come back! Thanks for the encouragement...jodi
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I was on tamoxifen for 5 years when my oncologist changed me to Femara. I never had the side effects with Tamoxifen that I do with Femara. I know that stopping everything is probably not a good choice, but when you are in such pain and can barely move you do what seems right to you. I know my doctor will not be happy with me, but I would rather take a chance with Tamoxifen and have few sides effects that I can live with.
Thanks for you reply. Norma