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Questions about Femara and pain

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Posted 1/7/2006 11:04 PM (GMT 0)
Is anyone taking Femara? If so, what are you doing for the side effects? The bone and muscle pain. My sister is on it and nothing seems to help. Is the pain because of bone loss? Any suggestions would be appreciated.

Post Edited By Moderator (gma) : 1/7/2006 5:34:18 PM (GMT-7)

Posted 1/8/2006 2:43 AM (GMT 0)
Unfortunately, the pain is a common side effect. It isn't from bone loss. That's what my onc told me. I actually stopped it and the pain went away. I haven't yet filled my new prescription, although I know I should. The deep bone pain I felt was only in 2 spots--my left collarbone and my right arm (mid-humerus). I used tons of ibuprofen but it didn't always help. This probably wasn't much help.
Posted 1/8/2006 4:50 AM (GMT 0)
Thanks Mikki. The Femara is an excellent drug. My sister's breast cancer was in final stages, even in her one lung and yet 2 yrs later she is still here and feeling well. She didn't get sick from chemo and only side effect now is the bone pain. Wonder what it does exactly to cause it.
Posted 1/11/2006 11:10 AM (GMT 0)
I had pain on femara for about 1 1/2 years and know of 2 other women who had pain for about a year or 2 with femara. Then almost magically over night the pain disappeared for all of us, no rhyme or reason that we can think of, none of us did anything different. Not sure what caused the aches and pains to begin with but they're gone now and don't know why. Hopefully the aches and pains will just eventually go away for your sister. Femara is a wonderful drug, it really does work well.
Posted 1/11/2006 2:13 PM (GMT 0)
Thank you Happy, I will relay that to my sister. Do you know if you will have to remain on Femara forever or is there a cut off point? So glad all of you survivors are here and so positive. Certainly this horrible disease brings out the figher in all of you! Life is so worth it though!!
Posted 1/13/2006 11:57 AM (GMT 0)
Sis could stay on femara for as long as it works, could be years. There are several hormonal therapies available, my onc told me that if femara should quit working for me (knock on wood, I've been doing wonderfully on femara for almost 3 years now!) we would most likely try the other hormonal therapy options before thinking about doing chemotherapy again (lung, bone mets here). I try not to think of the 'what ifs' for now, just very thankful for wonderful drugs like femara. Good luck to sis!
Posted 1/13/2006 2:48 PM (GMT 0)
Everything I have heard is positive for this drug although the pain is a real downer for her. I can't imagine how it is. I didn't know whether mild exercise would help like it does for some arthritis or make her feel even more soreness and pain. I am just trying to be supportive. My sister is 13 yrs my senior but we have always been so close. I must get her to try using a computer, she doesn't have one. She needs a support group. She doesn't drive either and we live in a very rural area. So all of you are a boost. Have a great day and weekend Happy!
Posted 1/2/2010 11:21 AM (GMT 0)

I realize that everyone is different in their reactions to medication and in their treatment of those reactions.  I would like to share my treatment of pain and rashes in the hope that it may benefit someone out there.

After 2-1/2 years on Tamoxifen I was switched to Femara.  I initially had to deal with facial rashes (which were fairly bad at one point).  After trying many different creams - some prescription, I found that using hand disenfectant (alcohol in a gel base) and Rescue Cream by Bach - for the itching, helped to rid me of the rashes.  (I also found the source of the rashes - a hair conditioner that I used without problems in the past).

I was pretty much pain free until about a month ago when my joints started to ache and I started to get small injuries at aerobics.  I couldn't understand why, after being on Femara for 5 months, I would start to suffer pains.  I thought back at what had changed in the last month.  It had gotten considerably colder in December - maybe.  I also remembered that I had stopped drinking my daily minimum of 2 liters water.  I drank at least one 1.5 liter bottle every evening.  I had to visit the restroom quite often but I think this "flushing" of my system helped to rid me of some impurities that caused my joint pains.  Since I restarted my water regimen the pains have subsided.  I just make sure I take my Femara in the morning so it can be well absorbed into my body (I also take supplements to maintain a healthy acid/base balance.  I think this imbalance may have been the cause of my cancer - but that's another story, but please check your urine with the appropriate lithmus paper for possible imbalances).

I am not a scientist or an M.D.  I can only report what worked for me.  Since it's a fairly easy and non-drastic treatment, I'd recommend trying it.

Posted 1/11/2010 10:18 AM (GMT 0)
The pain and stiffness i had with Femara suddenly dissapeared overnight after about a year - completely side effect free now! dont get the fuzzy head like i had with tamoxifen too. Great
Posted 1/13/2010 4:56 AM (GMT 0)
I will be starting Arimidex in about 7 weeks and am wondering if it would be better if I asked for Femara instead? Side effects seem to be about the same though.

My ONCO score was 15 out of 100 and the test results were why my onc said Arimidex is what I'll be taking.
Posted 1/21/2010 8:19 PM (GMT 0)
Hi

I originally started on Arimidex and had such pain I couldn't stand it after only a month and a half. Like arthritis + fibromyalgia X 10. Actually I have both, so maybe it just makes them worse.

I have been taking Femara for about 8 months and the same pain as Arimidex has finally caused me to take a vacation from it. I've been off for 10 days and don't really feel any better. So how long does it take to feel better, or is the pain maybe not actually from the Femara at all?
Posted 1/22/2010 2:33 AM (GMT 0)
I am new to healing well.

I had a lumpectomy in June followed by chemo from Aug. to Oct. I had radiation in December and now I am to begin taking Femara. I know that I should at least try to take this medication, but I am concerned about the side effects. I am wondering if anyone has any more information, and how soon after beginning Femara did it take for the side effects begin?
Posted 1/22/2010 10:02 PM (GMT 0)
Hi 10 rings -

Just take the med and see what happens. Everyone reacts differently. Your doc prescribed it because it works and doesn't cause bad side effects in most patients.

I took my first med (Arimidex) for a month before I realized I needed to change it. I have been taking Femara about 8 months, and just now I am taking a vacation from it (2 - 3 weeks) to see if my pains are from my fibromyalgia and arthritis or the med. After 10 eays off it I can't see any difference, so I will restart it in another week and see if I feel worse.
Posted 1/23/2010 10:38 PM (GMT 0)
Thank you Alice.

Between your suggestion, and the information of the personal experience of a co-worker I will give it a try. I am going to begin Femara in the morning. I hope that I am one who is able to take the medication. I have a follow-up appointment with my oncologist in a few weeks if I am having any difficulty with Femara I will be able to talk with my doctor at that time.

I'll post how I am doing with the medication in a few days.
Posted 1/25/2010 4:01 AM (GMT 0)
10rings
From what I've read, and I've read a lot, some women feel pain within a day or two of starting Arimidex or Femara, some later and some don't have any side effects at all with the exception of hot flashes which most do experience. That I can deal with.

I'm starting radiation beginning early February, but not sure when I'll be starting Arimidex. I know if I experience the extreme side effects many have I will stop the drug and look for alternatives. I'm not telling you this to give you advice, but to tell you of my decision. Each of us must do what we think is best for ourselves. I cannot imagine living with severe deep bone pain for five years, possible Osteoporosis, broken bones, heart problems, nausea and can only wonder how some women do it. Believe it or not these are some of the common side effects.

I will say that I'm optimistic about side effects, don't expect any. I think both you and I will do well.
All we can do is try and I'm very anxious to hear how your doing on Femara and sending positive thoughts to you.

Jane
Posted 1/26/2010 12:44 AM (GMT 0)
Hello Jane,

Thank you for sharing your personal thoughts on taking these drugs. I began taking Femara on Sunday and I also began a journal. The funny thing about having to take this medication right now is I am feeling the best physically and mentally since my mammogram last April. Now I'm taking a drug that may change all that, but like you I have decided that I will stop taking Femara if I have that deep bone pain. I had both of my knees partially replaced and believe me I remember that bone pain. Not fun.

I am trying to be optimistic about the side effects also. And since I've always kept a journal it just made sense for me to add this to the pages.

I hope your radiation goes well. I was lucky and got to follow a newly adopted protocol from Canada only 16 treatments.

I will continue to post any useful information regarding the Femara.

Thanks again,
Robin
Posted 1/31/2010 7:29 PM (GMT 0)
New to this forum - indeed to forums at all, so excuse me if this question is in the incorrect place.
Does anyone know why my oncologist is having me take Femara if my blood estradiol count is zero? Treated for estrogen positive/progesterone positive breast cancer - stage 1 or 2 (two tumors, different cancers, side by side, one 1.2 cm grade 1, 1.5 cm grade 2, lumpectomy - clean margins. radiation just completed. I'm very nervous about taking the Femara because of current osteo arthritis and joint pain. I'm post menopausal, 56 yrs old, hysterectomy 16 yrs ago. Also - I often have bad reactions to prescription medications.

When I posed the question to my oncologist, she just said "it's more complicated than that ..." Thought that I would find out more online, but I haven't.

thanks for reading this - I'll keep a watch on postings.
Posted 1/31/2010 8:31 PM (GMT 0)
In answer to my own question above, I have located information (from the International Strategic Cancer Alliance) that the breast produces its own estrogen and that this cannot be detected in a blood test, only from an extraction (painful and expensive) of a sample from the breast. They are working to create a better test format.
This then begs the question question - does Femara, or its sub components, get into the breast to block formation of estrogen?
Posted 2/2/2010 2:12 AM (GMT 0)
Teddie2,

You may want to check this website http://www.femara.com/patient/how-femara-works.jsp
It will be easier for you to read it than for me to try to explain the process. I realize this is a website created by the makers of Femara, but the explanation is fairly easy to understand.

My oncologist recommended that I take Femara also. I began taking Femara and started with a reaction that was not one of the "normal" ones listed in side effects. I had an appointment with my radiologist and mentioned the reaction to her and she suggested that I stop taking the drug until the reaction disappeared completely and then begin Femara again. If I had the reaction again to stop taking the medication and call my oncologist.

So I began taking Femara this morning and so far no reaction, but it took several days for that reaction to begin. I will let you know how things turn out.

Robin
Posted 2/4/2010 11:03 PM (GMT 0)
When will the pain go away? Even if I am off it, I have pain.

I was on Femara and was reading your post. I have bad bone, muscle, and nerve pain - I have been off of it for a year and still have the pain. In fact the pain got worse for me during the year that I got off of it.
Did it getter for you after a year of NOT using it? Did you do anything special?

How long did you take it for?

Your help is appreciated.
Posted 2/5/2010 3:05 AM (GMT 0)
Pica,

How long were you taking the drug? I have only been on it for a couple of weeks and have decided that I just cannot give up my quality of life for the aches and pains associated with Femara so I may have added protection from recurrence of the cancer.

My arms and legs feel like I have a tourniquet tied around my legs near my groin, and my arms around my shoulder/armpit. They are tingly and feel swollen. I am as stiff in all of my joints as if I have arthritis. I also had both of my knees partially replaced and I'm feeling like I never had them replaced.

This morning when I woke up I had to hold on to something all the way to the bathroom I walk like I'm 90 years old. I just cannot continue feeling this way. So tomorrow I won't take the next pill, and I hope I can get back to feeling like my 60 year old self and how I felt last April before the annual mammogram that started my journey.

In answer to your question, I would think that after a year some of the side-effects and pain should begin to disappear. Have you talked to the doctor who prescribed that medication?

Robin
Posted 2/12/2010 3:51 PM (GMT 0)

Alcie said...
Hi

I originally started on Arimidex and had such pain I couldn't stand it after only a month and a half. Like arthritis + fibromyalgia X 10. Actually I have both, so maybe it just makes them worse.

I have been taking Femara for about 8 months and the same pain as Arimidex has finally caused me to take a vacation from it. I've been off for 10 days and don't really feel any better. So how long does it take to feel better, or is the pain maybe not actually from the Femara at all?

Hi Alcie,
I was on Arimidex for 3 weeks when the joint pain started. Took one month off and had no differnce. I think it takes months for the effects of this awful drug to get out of our systems. I have since switched to femara and have had same issues and needed to surgeries to fix carpal tunnel and trigger finger problems and looking on another surgery asap. I think for some women it attacks our connective tissues though it feels like joints.
I read that some women have a cessation of symptoms after a while. i sure hope so.
Good Luck
Posted 2/12/2010 3:58 PM (GMT 0)
To Teddie2,
Insist that your onc explain ALL to you until you are satisfied that you inderstand. That's their job. My understanding is that we have several estrogen types floating around so the drugs try to wipe out all of them. Dr. Susan Love has a great book out that is so helpful for all of us. Highly suggest everyone get it.
Lss
Posted 2/15/2010 2:17 AM (GMT 0)
The Femara website has a coupon for $10 Femara, good for a year.
Unfortunately, if you are on Medicare or Medicaid you can't use it. There may be another assistance program for those of us on Medicare, but you have to call and then they fax some form to your oncologist. I haven't heard if I will be able to get any help yet.
This one drug will cost me $4500 out of pocket this year - even with my insurance - because I am over 65.
Since you have to be post-menopausal to take aromatase inhibitors, that means most of us who take these drugs are being hit unfairly hard.
Maybe someone else knows of another program to cut the cost? I'm seriously considering taking it every other day.
Posted 2/15/2010 2:45 AM (GMT 0)
This company does offer financial assistance for people who cannot afford their medications. You can get information on their programs at:

http://www.corporatecitizenship.novartis.com/patients/drug-pricing/assistance-programs.shtml

I don't know much about the program, but if you are having a hard time paying for the medication, I think it would be worth checking out.

BEV
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