HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)

- her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)

- - Femara (https://her2support.org/vbulletin/showthread.php?t=65119)

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

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

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.

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!

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

Thank you Paul, I'll look into it.

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

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

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.

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

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

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

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

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.

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

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

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

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

Thanks Hopeful, great minds!:)

Morgan I just replied on your other thread.

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