More than 5 years on Femera Ontario ladies?

[LoisLane]

Hi I just had my four year checkup with my oncologist here in Toronto
on Wednesday. I said to him that I noticed that some women have stated
that their oncologist are keeping them on Femara past the five year mark.
He said that was not something he would do as there is no literature or studies showing this is a benefit. I will have one more year of Femara so I thought I would bring the subject up. Anyway I am feeling very happy that I am now
four years out and doing well. If anyone in Ontario has any different experience with the length of time you have taken tamoxifen or femara let me know. Thanks Lois

[sarah]

There's been reports of the benefits of Tamoxifen for 10 years being better than 5 and I was wondering also if that would apply to other anti-hormonals. I was on Femara for 6 years.
I would check it out, even possibly get a second opinion. I'm very interested in this question although I've now been off Femara for a few years.
Here's the article I read: http://www.nytimes.com/2012/12/06/health/extended-use-of-breast-cancer-drug-suggested.html?_r=0

sarah

[Cathya]

Hi LoisLane;

I was treated in Ottawa and remained on arimidex for 6 years. My doctor also said that there was no proof it would help but if I chose to stay on he agreed to allow me to continue. He said that he had some patients who would throw fits if they were taken off. I was comfortable with stopping in the end and remain ok.....so far. I have read the recent results of the tamoxifen trials and wonder but they were not available at that time.

Cathy

[roz123]

hi lois lane! Ontario girl here
(we met at the chemo room where you volunteer)

seems there are a few studies coming out of SABCS on staying on an anti-hormonal for longer than 5yrs is beneficial (10yrs instead). I am going to ask my MO because i am not sure if that means the same anti-hormonal or do they do tamox for 5 then an AI for 5? instead of the 2.5 and 2.5 yrs she had originally told me. Also I am wondering if being pre-menopausal weighs more into the decision to do extended therapy. It would make sense since we may still have some estrogen circulating in our bodies until we reach the age that natural menopause would have occured.
I have also been reading about the benefits to adding zometa to decrease recurrance to an anti-hormonal, I believe this gets added to an AI because of the bone loss that may occur
I will post after i speak to my MO
tx

[LoisLane]

Thanks for your replies. Sarah that was a good article shows that the discussion
is still going on in regard to this. Cathya did your doctor just give you another year or did you ask to stay on? You are obviously doing amazing! Roz so sweet you remember me,
I have been volunteering upstairs in the new HUGE unit. Unfortunately I developed
plantar faciatis and have had a really difficult time walking so have not been able to volunteer lately. My bone density etc have been fine but I guess at my age (60) he probably is worried about bone weakness if I stay on Femara as well. Hope you all have a good weekend. I think it is amazing that one of us can reach out with questions and
feel like we have a sisterhood that can respond with care. Thanks

[Cure4Cat]

I am another Ontario girl. I have only been on Tamoxifen for a year and a half. My oncologist has talked about switching me back and forth between Tamoxifen and something else (sorry can't remember at the moment). I got the impression he wanted me to stay on some type of anti-hormonal for a long, long time. I heard about the study saying that 10 years is better than 5 but I am not convinced yet. It is just one study and I also heard that the makers of anti-estrogen meds funded this study. I have not had a chance to look into this to confirm if it is true, but I am hoping by the time I reach my 5 years that there will be more studies to give me a better idea of what to do. These medications all have their own side-effects and risks, so if I am going to stay on them, I better be sure it is worth it! I would be interested to know how it all turns out for you. Good luck! And congratulations on being 4 years out!

[Cathya]

My oncologist called my cancer metastic (although I was never officially staged by him....does that make it 4?) and considered me high risk for recurrance. I had a number of lumps (from the radiation) which he had biopsied and other little things so when my 5 years was up he agreed to keep me on the drug for another year. It was an easy discussion and I didn't insisted but was relieved to continue at that point. Then after 6 years he suggested we stop these treatments. Early on I had been put on actonel after my bone density scans showed depletion and referred to a bone specialist who continues to follow me. I think they both wanted me to have a break from these drugs. After my 7th year my oncologist referred me back to my md. I don't know what he would have done if this information about tamoxifen had been available. I know that deep in my mind I will always likely be waiting for a recurrance or some new cancer. I have this thought that at around 10 years I will ask for a total body ct scan, then again at ..... lol....

[Laurel]

Lois,

In October I took myself off of my A.I. (Femara) and began taking Tamoxifen again. I had nearly a full bottle left over from when I switched to the A.I. from Tamoxifen 3 years ago. My left knee had swelled in May and remained swollen and painful, although with Bromelein and Tart Cherry Extract it was nearly back to normal in size, but still painful. In fact, my legs and feet were stiff and painful having been so for quite a long time. I called them my Herman Munster feet!

Anyway, I got to thinking that perhaps the knee was exacerbated by the Femara. I figured that I would see what a six week hiatus from an A.I. would do in terms of the sore knee. Knowing I'd see my Onc in early December I opted to switch back to Tamoxifen just to see if it might alleviate the knee pain.

Well, to my surprise it did. Not only the knee pain, but the feet and calf pain, too! I haven't felt this good, or been able to move this well in years, really since chemo! Oddly, I had no idea how miserable I was since this stiffness and soreness had become my baseline.

I am walking briskly for an hour daily. I can spend hours cleaning and not have to hobble to my recliner. I am delighted! I was concerned my Onc. might not be pleased, but she instantly said the pain was from the A.I. and that I had gotten my 3 years in on Femara. She would like to see me do a full 5 years of Tamoxifen therapy, which takes me to 8 years of an anti-hormonal.

My only concern with 10 years of Tamoxifen is the increased incidence of uterine & liver cancer.

[karen z]

Laurel,
A belated glad you are feeling better now message.
Take care.

[karen z]

Have been reading a lot on this topic lately and, of course, at some point in each article the authors do mention (regarding length of time on AIs)......we don't know yet. There is a nice/short overview of research on AIs called "Overview of Adjacent Trials of Aromatase Inhibitors in Early Breast Cancer" that was published in the journal "Steroids" in 2011 (Volume 76, 765-767). The author is James N. Ingle. I am happy to send along a pdf file if anyone would like to read.

[Laurel]

I would appreciate the link, Karen, and thank you for the good wishes. I continue to be surprised by my steady improving QOL since discontinuing Femara. I had no idea my pain and stiffness were caused by the A.I. To hop out of bed without hobbling is still a novelty for me. I find myself rejoicing in seemingly small things to the unenlightened but a huge cause for celebration to those of us who have been crippled by these drugs. Off the top of my head I can cite a few examples where I have had cause to stop and literally breathe a prayer of gratitude for being able to do these mundane activities without pain. For instance, I sat on the floor and wrapped presents getting up and down without a single repressed groan! The other day I dropped a package of blueberries on the floor and they rolled everywhere. My husband came around the corner to find me crawling around on my hands and knees collecting the wayward little blue rascals (they were ORGANIC blueberries hence the motivation to round them up! $$$$$). We both laughed when I said, "look at me. I'm on my knees!" To which he replied, "without crying?" For the record, I never cried by obviously I must have moan and groaned a bit (ok, quite a bit?). I am so grateful to be able to move about normally again!!!!!

As for the Tamoxifen I find it easy to tolerate. No adverse symptoms to report at present and I sure hope it stays that way. My onc. seems to feel 3 years on an A.I. is a goal to try to achieve, but that longer is questionable when further efficacy is balanced against QOL. She felt the additional 2 years were not worth the suffering and that most of the benefit with an A.I. is with 3 years. Hope she is correct!

[karen z]

Hi Laurel,
I do not have the link to the article but do have a link to the reference:
http://www.sciencedirect.com/science...39128X11000614

I was able to get a pdf of the article through my library. I can send you the pdf if you pm me with an e-mail address.
Best, K

[karen z]

This link is relevant:
http://annonc.oxfordjournals.org/con...l_9/ix27.short

[karen z]

So is this one:
http://jco.ascopubs.org/content/30/7/684.full

[caya]

Lois - another Ontario gal here my Onc discharged me this past July. I did 2.5 years of Tamoxifen and then 2.5 years of Femara. I had osteopania while on tamoxifen, had osteoporosis after just one year on the Femara.

I asked my Onc. about staying on the Femara longer, and he was very definite about me going off it. He said that for me with my stats- stage 1 no nodes- along with the osteoporosis, and the fact that there was no evidence that staying on it longer would be beneficial, that I would not continue on it.

So I took my last pill in July 2012- my energy levels have soared and I no longer have swelling in my feet and hands. I feel I have to trust my Onc. - however I continue to watch for new studies re: this issue and will not hesitate to see him again if I feel I should.

all the best
caya

[Laurel]

Great articles, Karen. No real definitive answers yet it seems. Thanks and have a wonderful Christmas! Merry Christmas to all the Ontario gals, too!