Femara
 

Hi All,
I have been on Femara now for 10 years. Last visit to onc. said I could continue if I wanted to since I was doing well.

The last few weeks I had begun to have strong joint pain. Enough so that when I sit too long, when I get up from the seat or car it is painful. Knee joints are so stiff and hurt. Walking and moving helps but the pain is always there. I do have a high pain tolerance. I decided to stop the Femara last Monday. Today Sat it is an amazing difference. Almost no joint pain especially in the knees.

I am wondering if anyone took a vacation from the Femara and then decided to return to taking Femara.
If so how long were you taking it and how long did you take a break?

Thank you for sharing.
Best to all.
Jean

Re: Femara
 

Jean

Ive read some articles that pointed to high Vitamin D levels as relieving aromatase Inhibitor joint pain. In one article I found on Pub Med the level of 25-Hydroxycalciferol (the active form of Vitamin D) was 66ng/ml so you should aim for a level of 70, high but not toxic. High Vitamin D levels also seem to delay cancer spread and extend lifespan. Talk with the doctor.

Paul

Re: Femara
 

Jean I stopped at two years ago after eight years on the advice of my Onc, she recently wanted me to start again for another two years due a recent study showing ten years would be more beneficial. I must have been so used to the pain in those eight years that I didn't notice it anymore but since I started taking it again I'm in a lot of pain, mostly on waking when it hurts to just get out of bed! I'll continue for now and hope it gets easier but interested in Donocco's reply to you so may look into my Vit D intake.

Re: Femara
 

Hello Jean,

Going into my tenth year on arimidex and did stop at the nine year mark but oncologist suggested I take it again at my 10 year appt. (first year after
Treatment I took tamoxifen then had a oophorectomy). She also recommended vitamin D so I'm taking it and I do think I notice less joint/bone pain. My oncologist recommended I continue taking it as long as I can, as she said studies show triple positive tend to be at greater risk than her2 + folks after 10 years. Didn't think about it but I should have ask where to find these results, maybe it's mainly because of my lymph node involvement.

And congratulations on your 11 YEAR MARK!

Re: Femara
 

If you go to pub med and type Aromatase Inhibitor joint pain and vitamin D level click on the 2nd abstract. That is where the 66ng/ml Vitamin D level is mentioned

Paul

Re: Femara
 

Thank you Paul, I'll look into it.

Re: Femara
 

Hi Jean,

I'm in a little bit of a different situation. I was on tamoxifen for 4.5 years and Femara for 5 years. With my oncologist's blessing, I stopped Femara in January 2010. In September 2012, I developed a "new primary" in my other breast (aka the good one :-)) with the exact same pathology as the original cancer. Please note the quotes around "new...". I take the "new" terminology with a healthy dose of skepticism.

Intellectually, I know that Her2 is the reason for the new cancer but I couldn't help but think if the Femara was helping to keep things under control as well. And it was nice going off the drug.

Anyway, back on Femara for the past 3 years and I see no end in sight. I'm not sure if the joint/back/etc pain is age or AI related - probably a combination of both. I know the AI has not helped my osteopenia. I do take Vitamin D3 daily and my numbers are consistently in the high 50's which is where my docs like it. I also exercise regularly.

I have no answers for you other than to enjoy the break and see how you feel in a month or so. I was told (a long time ago) that it takes a month for AIs to get out of your system.

Best
Janis

Re: Femara
 

Paul,
Thank you for the advise. I was taking high Dose of Vit.D3 for years and just this year (for no reason) had stopped taking Vit. D3
Hence the heavy joint pain. Will begin my routine of Vit. D3 starting tomorrow.

It appears that the onc. want us to stay on the IA. Janis I am happy to know that the drug stays for a month.
I will take another week break and begin again.
In the meantime I will get back on my Vit. D3 in preparation during my break.

I have to agree that being triple positive is a higher risk.
Warmest thanks to all for your help.
Jean

Re: Femara
 

I will be on Arimidex 11 years in Sept. My onc has no problems with this and wants me to stay on. However, several months ago I went on an almost 2 week business trip and forgot them. I thought it might be a good test. As many of you know, I like my research. Arimidex and Femara have a 2 day half life so basically in a week, very little is left. Depending on your individual metabolism, it takes 3-6 weeks to get effective circulating levels back when resuming. I think this is why when women start, they don't get the joint pain (if you're going to get it) for a month or so. The short half life is why you feel better so fast when stopping.

I never got joint pain but have a bad back. I felt no different. I resumed when I got home and had back problems a month later. I don't know if this is coincidence. I had some back issues prior to bc. I take d3 and have over 60 level. I was 70 once.

I just wanted to set the record straight on that AIs don't stick around that long after you stop and it takes a few weeks to really start working when you do start or restart taking them.

Re: Femara
 

Ill have to check on the half life of Arimidex etc. The general pharmacy rule is that it takes 5 half lives to get a steady state blood concentration. Once you reach steady state the drug starts to work. The prototype example is the anti-seizure drug Dilantin. Its half life in adults is about 24 hours so you have to take it for about 5 days before you get a steady state concentration that will suppress siezures. Docs circumvent this by giving a loading dose of Dilantin of 1000mg the first day ie three 100mg Dilantin capsules in the morning of the first day, three capsules in the afternoon and 4 capsules at bedtime. This gives you a therapeutic blood level on the first day. All the following days, the patient will take the usual Dilantin dosage of 400mg daily often 4X100mg capsules at bedtime.

If the half life of arimidex is 2 days it should only take anout 10 days to reach an effective steady state level however its possible that the Arimidex is a prodrug that the body changes to an active drug and this active drug has a half life of maybe 5 days so it takes weeks to get a steady state level. Ill check this out.

I remember an incident that happened when I worked the night shift at a Longs drug store in Santa Monica California. It was one of those difficult days. One patient was on the diet pill Fastin and the doctor never called back about the refill request. He asked me for 3 Fastins to cover him over the weekend. I can only do this with blood pressure meds, seizure meds, anti rejection meds etc. The pharmacy law does not allow me to do this with Fastin which is a controlled amphetamine like drug. He had a temper tantrum and called me every name in the book and called for the manager who tried to push me to give him a few pills. I refused citing the law. More tantrum more insults etc.

Finally he left. About 10 minutes later the technician told me there was a woman who wanted to speak to the pharmacist. She was crying and I said to myself "My God what now?" I spoke to her. She was a breast cancer patient on Tamoxifen 10mg twice a day and missed a day. She was sure the breast cancer was going to come back because of her carelessness.

I brought her a package insert on Tamoxifen and showed her that the half life of Nor-Tamoxifen the active drug (Tamoxifen itself is an inactive prodrug) is 21 days. Missing one days dose would have no effect. I told her I hoped and prayed that the cancer would not return but it could return (she knew this) and if it did there was absolutely no way she could assume blame saying "I missed one 10mg dose of Tamoxifen." I took a 100 pound weight off of her back. Being a pharmacist dealing with the public has a few "moments of usefulness."

I'm sure many of you are aware that drugs that inhibit the enzyme Cyp2D6 shouldn't be taken with Tamoxifen. Examples of such drugs are Fluoxetine (Prozac) and Bupropion
(Wellbutrin) both antidepressants. The reason is the body uses theis Cyp2D6 enzyme to change the inactive Tamoxifen to the active Nor-Tamoxifen. There are other drugs that inhibit Cyp2D6 such as Dextromethorphan and Quinidine. Sorry this has been so long.

Paul

Re: Femara
 

I did some quick research. Becky was correct. The terminal half life of Femara is 2 days but it takes 3-6 weeks to get a steady state. According to what I learned it should only take about 10 days to reach steady state. Maybe when a drug binds to an enzyme and inhibits it, the kinetics get more complicated and you cant use the steady state= 5X half life rule. I leaned something valuable

Re: Femara
 

Thanks, Becky and Paul for the correction. I did some research as well. I can't remember who told me 30 days way back when but they probably had incomplete science

Best
Janis

Re: Femara
 

My oncologist had me stop taking Arimidex after 5 years. That was 6 years ago. Hope I am not missing something!!!

Re: Femara
 

My story is a little different, my oncologist suggested that I stay on femara for 10 yrs, well she retired and my new oncologist which I really like said that 5 yrs was enough. I asked about the studies and the 10 yrs compared to 5 and she said there isn't a significant change in outcome and the study is still being done. With the joint pain, weight gain etc she said she felt ok with me going off it, I went off of it 3 months ago and I feel pretty good, hopefully it stays that way. It's so confusing when one doctor says one thing and another says the opposite. We put so much trust and faith in our healthcare system. I'm fine with my decision, I was glad to just be done with the one last thing that still held me to a cancer diagnosis. I was able to manage the joint pain while on it so it wasn't horrible but the puffiness that came with it was annoying, since I have been off the puffiness is gone, i feel like my old self again. Time will tell. Fingers crossed.

Re: Femara
 

Here is a link to a timely abstract in the NEJM http://www.nejm.org/doi/full/10.1056...4700?query=TOC Unfortunately, the full article is not available for free. The conclusion, though is interesting - extended AI therapy resulted in longer disease free survival, but they were unable to demonstrate an increase in overall survival. The extended therapy also was effective in preventing additional bc in the unaffected breast.

Hopeful

Re: Femara
 

The trial results my Onc referred to were just released in June this year at ASCO, she always attends so had the stats ready for me in her office. I'm not sure if this is the exact study she mentioned but it looks similar https://www.asco.org/about-asco/pres...cer-recurrence

Re: Femara
 

Tricia, the NEJM article was about a Canadian trial, and your link is to an article about a Canadian trial as well. I believe you are correct, it is the same one.

Hopeful

Re: Femara
 

Hi, I am 11 years post diagnosis :-) I am wondering if anyone has taken tamoxifen after 10 years of arimidex?

I was diagnosed aged 45 in June 2005, I chose to have bilateral mastectomy and then had chemo, radiotherapy and year of herceptin. I started arimidex in Feb 2006 and have been on it ever since. I had an appointment yesterday at the breast clinic and was advised that I shouldn't be on arimidex any longer, I said I was worried and really wanted to keep taking it but doc said that after 10 years my body would have got used to it so really wouldn't be getting the protection...he then said I could have 5 years on tamoxifen.

I had heard of cross talk between Her2 and tamoxifen but didn't look into it as had hysterectomy aged 42 so didn't apply to me as I could take arimidex. I have had a google now but to be honest haven't a clue :-( Any advice would be very much appreciated.
I will also post this as a new topic.

Thanks
Morgan

Re: Femara
 

Thanks Hopeful, great minds!:)

Morgan I just replied on your other thread.

Re: Femara
 

The two links above seem to be from the same article (attached).

Re: Femara
 

Hi - I'm 2 1/2 yrs post surgery and taking generic Femara. I have a lot of bone/joint pain, and my hands are the worst. I can't make a fist with my left hand in the morning, and that makes getting anything difficult. I've been recently diagnosed with peripheral artery disease and have to wear industrial strength knee-high support hose. Getting those things on and off is a chore. I need another set of hands, or at least one pair that work.

Since there are a large number of you who have been on this drug for ten or more years, I'm interested in knowing if the bone/joint pain gets better, or is this the way it will be. What do you do for pain? I take arthritis strength acetaminophen and use topical ointments as well.

Thanks,
Lynne

Re: Femara
 

Lynne

You could try Vitamin D supplementation. This has to be done with the doctor even though you can get Vitamin /d over the counter, as what counts is the blood level. In one experiment, patients taking Aromatase Inhibitors who achieved a Vitamin D level (I believe its the 25 hydroxyl form of the vitamin) of 66 ng/ml had significant relief of Aromatase Inhibitor joint pain. Its worth a try and to have a high vitamin D level is very beneficial as far as breast cancer in general in terms of survival. Many doctors are used to thinking a Vitamin D level of 30ng/ml is excellent and might think a level of 66 is too high. Vitamin D does not become toxic until the level is 150ng/ml or more. To have a level of 70ng/ml might benefit the joint pain and is likely to slow the breast cancer progression. Speak with your oncologist.

Paul

Re: Femara
 

Hi Lynne!

I have been on Arimidex since April 2014, my onc has me on 5,000 IU of Vitamin D3 a day in gel capsules ... and except for some morning stiffness in my fingers, I have not had any joint pain at all. Something I am extremely grateful for!

Carol Ann

Re: Femara
 

Thanks Paul and Carol Ann. I have been on 50,000 IU vitamin D once a week for years - way before I had cancer. It was prescribed by my rheumatologist to help with osteoporosis. One of the oncologists I've seen since my move gave me an infusion of Zometa for ostoporosis. I hope one or both of these measures will help, but neither has stopped the bone/joint pain.

I guess there's nothing more to be done.

Re: Femara
 

Red

What was your last Vitamin D blood level? This is what is important, as the 25-Hydroxycalciferol level should be close to 70 ng/ml. Four people could take 50,000 units of Vitamin D weekly (its a very pretty dark emerald green caplet) but each person may have steady state Vit D blood levels. Don't worry too much about Vitamin D toxicity. Doses of one million units daily Vitamin D have been given to patients with Rickets, a Vitamin D deficiency. Toxic levels of Vitamin D are 150ng/ml plus. To get joint pain relief with Vitamin D the levels in one study averaged 66ng/ml. This is why I suggest 70mg/ml

Paul

Re: Femara
 

I meant to say 4 people (for that matter 100 people) could take 50,000 units of Vitamin D orally weekly and there would be a large range of steady state blood levels. Do you know the latest one?

Paul

Re: Femara
 

Paul - I don't know my D level, but I assume it's OK with this supplement or someone would have told me to stop taking it. I take the one you describe - dark green gel cap. However, that's not quite right; it's entirely possible that no one has paid any attention to my blood work. My oncologist left last fall, and the hospital has resorted to using traveling doctors. I've had four in the past year. Every time I go in, I see someone else. I don't think this is a good thing.

We - the cancer patients - are hoping we'll get a permanent doctor soon. No one likes the current situation.

Lynne

Re: Femara
 

Lynne

You cant assume because absorption of a drug or vitamin is so individual. Yes your Vitamin D level is probably OK meaning its 30ng/ml or above. But optimal in your case might be 70ng/ml. You owe this to yourself.

I know medicine has changed with the takeover by insurance. It isn't even medicine anymore. Medicine used to be controlled by the doctor. The doctor is subservient to the insurance company. Its beyond sad.

Its possible there are lab services on the internet that measure Vitamin D levels. Ill search around. Its terrible that things have come to this. Sometimes I believe real medicine doesn't exist anymore. I'm sorry if I come on too strong. I used to think of myself as a very shy introvert. My motives are not selfish.

There was quite a turmoil when Vicodin was made a class 2 narcotic by the DEA.
While there are very legitimite uses for these drugs but they are abused. As a working pharmacist I was delighted not to be filling so much Vicodin anymore. Maybe I'm being hard hearted but the DEA would come down on us when we weren't the ones prescribing it.

Anyway I'm getting off on a tangent. There were a lot of messages on the Aol board about the Vicodin story. Most were very critical of the DEA. But one message stuck in my mind and I had to laugh. This "wit" who claimed to have a back problem and it may well have been true, stated "Things have gotten so ridiculous that a Chinese peasant 2000 years ago could get pain relief with his bowl of smoked opium much easier than a pain patient in 2016. There may be some truth to this.

Paul

Re: Femara
 

Hi Jean

I was on Femara for 2 1/2 years until last year (Taken off because bone met found).
For last 6 months on Femara I was getting really stiff. Oncologist suggested a change of AI to see if that helped or a break. Never got this far but have read that some other ladies have changed AI until side effects bad again and then changed back.
Within a short time of stopping Femara stiffness went.

Juls

Re: Femara
 

Hi, Juls,

Sorry to be exposing my ignorance in so public a forum, but I am not familiar with "AI" except as a short for autoimmune. Please explain.

Thanks,
Lynne

Re: Femara
 

Hi Lynne

It is short for Aromatase inhibitor.

Regards
Julie

Re: Femara
 

Lynne,

No worries, I don't speak anagram, either. :). "AI" stands for aromatase inhibitor, which is the class of drug Femara is. It acts to prevent the body from converting the hormone androgen into estrogen. Hope this helps.

Hopeful

Re: Femara
 

Hi Lynne

I'm just learning all these things as well!!
Julie

Re: Femara
 

Even though Androgens are male hormones and Estrogens are female hormones chemically they are very similar and apparently both males and females make one from the other. In women there is a weak androgen called Androstenedione which is converted to a weak estrogen called Estrone. The enzyme that catylizes this conversion is called Aromatase and drugs like Femara and Arimidex inhibit this aromatase enzyme. The body changes Estrone (a weak estrogen) into more active estrogens like Estradiol.

Paul

Re: Femara
 

I had lots of ferocious leg cramps on Femara, the Charley Horse kind that you can barely walk til they pass.

Re: Femara
 

I'm very familiar with the leg cramps - as well as the bone and joint pain. I guess we can expect to look like raisins, too, since this stuff sucks every drop of estrogen out of our bodies. However, looking like a raisin won't bother me as long as I feel pretty decent! I've earned my wrinkles and wear them with attitude. ;-D