Question about Continuing Arimidex past 5 years

basset girl · 03-30-2011, 06:23 AM

I will soon be coming up on my 5 years on Arimidex. My onc says he will take me off then. I really want to continue it longer if possible. I have read where some of you are taking it longer. Any suggestions on how to convince him? I actually have had few side effects, just joint pain which exercise has helped. Thanks so much.

Nancy

PinkGirl · 03-30-2011, 09:48 AM

Not trying to hijack your thread but I have decided to stop taking
it and I'm wondering if you can just stop or is there some cutting back
process to go through. Anyone know?

I decided with my onc. that if there is anything definitive out of the studies then I will go back on it. Right now I haven't been able to find anything to suggest there is a benefit after 5 years. I'm also concerned about bone loss and higher cholesterol.

Jackie07 · 03-30-2011, 11:48 AM

Perhaps you can try Tamoxifen? My onco put me back on Tamoxifen last year and I found an article about the benefit of continuing Tamoxifen after 5 years.

Lien · 03-30-2011, 01:24 PM

My onc discussed this with the scientist who is doing research into prolonged use of Arimidex. There are some signs that for some groups taking it for two more years could be beneficial. The benefit would be a few percent-points. I decided to quit, because the benefit was small and there were no definitive answers.

For what it's worth... We don't have a Christal ball. It has been a bit over 7 years since my diagnosis.

Hope this helps

Jacqueline

PinkGirl · 03-30-2011, 01:27 PM

Does anyone know if you can just stop taking it ... do you have
to taper off ... any withdrawls from it???

tricia keegan · 03-30-2011, 03:26 PM

Pink- I have'nt heard anything about this but some people I know have just stopped at five years with no ill effects so I'd say go for it!

Nancy, I have severe osteopenia (dx recently) and have my first yearly zometa iv tomorrow, but really want to remain on arimidex too after my five years in June so will be interested in any replies to your question.!

Becky · 03-30-2011, 04:25 PM

You can just stop. The half life is short (I think about 27 hours).

As for taking it longer - for Bassett Girl, I am still on it. 6 years ago I started with Tamoxifen then got the ovaries removed. I have been on Arimidex since September 2005. When I went to my onc in December, he at first (a few years ago) was very pro me staying on but in December, he hesitated but gave me a 6 month prescription instead of one for a year. I see him in June and I think he won't be giving me more (although my prescription will take me through August so if he doesn't want me to take it anymore, I may tell him I will finish when the pills are gone). I will let you know then.

I was only 50% ER+ and PR negative so the benefit is probably behind me at this point. We'll see.

The study on taking the AIs longer is not complete. I suppose if there is a great benefit, any of us hormone positive ladies can just go back on.

sassy · 03-30-2011, 07:24 PM

Hey all,

As of my last appointment, my onc plans to leave me on indefinately. He told me from day one he expected more than five years. I have been on for 5 1/2 years now.

I will see him on the 13th and ask what he is seeing in the research and what his opinion is. I will e-mail him ahead of time to see if he has printed info he can give me.

As for SE's, I tried Femara for 3 months to see if I had less joint stiffness. It seems that the neuropathy in hands and especially in feet was worse on Femara. I don't remember anyone else mentioning that. Now that I have been back on Arimidex for two months, I do think stiffness was a little better with Femara. I will ask my onc about switching back to Femara for three months to compare again.

basset girl · 03-31-2011, 11:43 AM

Thank you'all so much for the replies. It sounds like there is no consensus yet in the medical field as to taking it longer. I see my onc again next month and hopefully I will have some info to give him. The Tamoxifin might be an idea to suggest to him. I guess I just really am scared of getting off of it. Will let you know what he comes back with.

Nancy

tricia keegan · 03-31-2011, 01:42 PM

I'm wondering if anyone has opted to remain taking an A1 despite any bone loss???? I'm really not sure I should remain on it but far more concerned about a recurrance than bone loss at this point!

sassy · 03-31-2011, 04:52 PM

Tricia,

I have been on Zometa since one year after starting AI. It has been effective in preventing bone loss.

caya · 03-31-2011, 05:07 PM

I saw my onc. today for my regular 6 month checkup. I was on Tamoxifen for 2 1/2 years, then switched to Femara - I'm on it a little over a year. I asked him about staying on it past the 5 year total (for both Tamox. and the AI). He said no, he wants me off it, there are no benefits at this time for me to stay on it. In fact, because I now have osteoporosis, and Femara is bad for the bones, he definitely wants me off it when the 5 year total will be up, basically June 2012.
Besides the bone loss, he also told me that prolonged use of Femara can be know to cause coronary heart issues, and between family history of heart disease, plus the fact that Herceptin can cause heart issues at any time, I think I will listen to him. I told him I was scared to go off it, but he assured me that as I am approaching my 5 year mark, and with all the chemo and Herceptin I had, being stage 1, node negative, the chances of a recurrence are low.
Of course, nothing in life is guaranteed - he told me he has had one patient who went 55 years between initial diagnosis and recurrence - you read that right ... fifty-five years. I guess that would make me 103 if I followed that woman's lead... OY!!

all the best
caya

Jean · 03-31-2011, 05:47 PM

Just had my 6 month check up today. The first thing my onc. said was he wanted me to continue on Femara. We did not even discuss how long....he said for a while.
Since I am 90% Er + I was not deeply upset.

I remember a while back when studies came out about AI being used longer than 5 yrs. - does anyone remember that?

Thanks,
jean

Gerri · 03-31-2011, 07:10 PM

My five years (2 yrs Tamoxifen, 3 yrs Femara) is coming up this May. I saw my onc in February and she said that the jury is still out on this one. However, she said I should continue on Femara for now since I am tolerating it okay. I have osteopenia and have been getting Zometa 2 x yr for the past 3 yrs; I am going to continue with that too.

I had a follow up with my breast surgeon today and he recommended that I stop Femara immediately due to my upcoming knee replacement surgery. He said that AIs carry a very slight risk of causing blood clots - the number one complication with knee replacement. Even though the risk is very small, he said it would be best to be off it for about a month after surgery.

tricia keegan · 04-01-2011, 05:23 AM

Thanks Rhonda and everyone , I'll only be getting zometa once a year so hoping it'll help the bone loss, as for arimidex I'll have to wait and see what my onc's decision is when I see her in June and as the jury's still out, I'll accept her decision and hope for the best like all of you!

sassy · 04-01-2011, 06:30 PM

Tricia,

I knew you were triple positive, but had not noticed how close we are in dx--both in time and diagnosis. Were you stage II?

tricia keegan · 04-02-2011, 03:37 PM

Hi Rhonda,

Yes I was stage 11B same as you and it looks like you were dx ahead of me by a few months!

I had a zometa infusion last Thursday for the osteopenia and warned I could have flu like symptoms a few days later....today I felt like I'd been hit by a truck!!! I literally had to go to bed I felt so weak and sore, hoping it does'nt last too long but it's only once a year so can live with that!!

sassy · 04-02-2011, 05:30 PM

Tricia,

I had the same reaction my first infusion, but have not had the problem again. Just a little tired the next day. I go a week from Wednesday for my infusion. I will be switching to every six months.

tricia keegan · 04-03-2011, 10:43 AM

Thanks Rhonda, feeling much better today thankfully. I'm not sure why I'm not having it more often or even if I need to, but will read up on it some more

Cheryl E · 04-04-2011, 05:33 PM

Hi Ladies,

It's been a long time since I've posted on this site. I've been on Femara/Arimidex for 8 years! Recently switched to Arimidex when it went generic this last summer. My onc plans to keep me on for 10 years. He says studies at MD Anderson show it is safe and higher benefit for 10 years. I was almost 40 yrs, triple +, and 1 node + at dx in March 2003. I do have osteopenia, but not full blown osteoporosis yet.