AI- more than 10 years

I would love the research as well......I did 9 mos. of tamox and like you had a hyst/ooph so I could go on Femara......have not stopped it yet. I just finished year 11 last September. My face is one big wrinkle but other than that I have not had any other issues with the drug.

Jacqueline

Hey Carol - I'm right where you are...my onc just refused to renew my Arimidex after 10 years so I'm counting down my last month's supply of pills as if they were diamonds, and am absolutely terrified of flying without a net. I asked if he would switch me to Tamox & he said that wouldn't do me any good either - the latest study suggests that 10 years is the max benefit no matter what you're on. What I want to know is....how come there are so many women on the boards whose doctors allow them to stay on for life? And more importantly, how can I get in touch with them?!

Best to all - Julie

I admire you gals who stayed on AIs for 10 years. After 3 1/2 years I said enough is enough. My QOL was too compromised. I stopped in 2010, 7 years ago this month!

Carol....sometimes I wish there was a "like button" like Facebook........I love your comment about going off an AI and going onto Xanax;) So true;)

I was told by my MO that I would be on arimidex with zoladex shots every three months for the rest of my life

I guess the alternative is worse!

I have been told today (I am in the UK) that I am now to come off Letrozole following my 5 years done. This is partly because I have osteopenia and that I cannot stay on it any longer. Also, I was told that as yet there is no clear research to date that staying on AI's longer than the 5 years is beneficial; and that some oncologists want their patients on it and some that don't. But the benefits of 5 years + have not been shown as yet.

I can go on Tamoxifen 'If I want' it's up to me. This is because there is yet enough data to decide whether it's beneficial to go on it following Letrozole. This was said to me today.

So as from today I can finish Letrozole and not to be on anything at all!!! - So now I am really anxious! - fortunately, I have another month's supply just ordered before the call came in.

I don't know where I am up to with it all and think I need to ask for a 2nd opinion.

Any thoughts please ladies.

Sorry to jump in on a Stage III thread (but will do so, anyway...). The topic's of interest to me as I was originally told probably 10 years on Femara, maybe longer. Now my MO is saying 'let's see what the research shows when we get to the five year mark...' Like most of you, I'd be scared to death to go without any endocrine therapy; I'm skittish even about stepping down to tamoxifen, much less going cold turkey!

Wintersocks, in your shoes I'd absolutely get a 2nd opinion. I'd also point out that you haven't even done the full 5 years on AI yet, since per your signature, you started in Sept. '12. Thus, I'd at least argue that you should be allowed to take it through September. If you can get them to prescribe tamoxifen after that, it might be a good compromise - it could help your osteopenia and give you some continuing coverage. And maybe by the time you finish that five years there will be another approach to try! Good luck with it.

I have no side effects to speak of regarding Letrozole-other than survival.   I was so highly ER+ when diagnosed 11 years ago so the thought of going off Letrozole completely freaks me out!  I was on Tamoxifen for a short time prior to Letrozole.  I will be seeing my radiation oncologist in a few weeks so I will run it by him too.  I just feel like I have been doing well so far so why change things???  My medical oncologist took me by surprised when she mentioned that she would be taking me off soon since there is no research saying that more than 10 years is beneficial-but I don't think there have been any long term studies past 5 years so I am really nervous about going off.

Thanks to all who have commented on this.  I am hoping some others will chime in too!!

Thanks, Peace.  That might help me.  I'll take a look.

wintersocks- I could not tolerate letrozole off the bat and was in utter misery at 5 wks so I stopped and went back on Tamox. I can handle Tamox and will stay on it for the 10 years MO says. I am 95% ER+ and considered high risk even though I had bmx, chemo and rads. AIs IF they work give about 3% added protection v Tamox so it's not a big diff. I'm having lower abdominal discomfort and pcp thinks most likely it's from Tamox irritating/growing my 4 uterine fibroids (2 are 3 cm each). I'll find out first week of may when I do the pelvic u/s. If this is what it is then I will go for hysterectomy. At 52, take it all I don't care. IMO it's better to be on something than nothing and 10 years total seems to be the latest thing to do esp if you are high ER like I am. Hopefully in the meanwhile they will come up with more tolerable meds and for shorter term.

Could it be that it's the NHS and not so much studies? I suppose some of it depends on age too, but can't imagine there's not enough evidence for MOs in the US who rx beyond 5 years of hormone therapy. My MO called me high risk and said stick with something is better chance for preventing recurrence. Of course no guarantees and no way to tell if it works or not. Best wishes in getting answers hopefully to your satisfaction.

I just saw my onc last week for my now yearly check up. Everything is going well. I am now in year 14 and my onc wants me to remain on Femara indefinitely. I get a DEXA scan once a year to check on my bone health and I told him I will keep taking the Femara as long as my bones hold up. So far, so good. My onc told me new studies are showing added benefit for those of us with a really sucky diagnosis when we stay on the AI's past 10 years.

SSInuk

That would be really useful if you could pass the details onto me as I thought to have someone in mind when I see the GP next week. If they are in London I used to live there many years ago, so I know it well (ish).

I will pm you.

I'm surprised the MO discharges you from the practice while taking AI or Tamox. Wow. My pcp doesn't know as much so any questions I have or concerns I'm told to bring it up with my MO. Makes sense. She's rx'ing it to me, and for years.

Hi All,

Little update here. My GP is requesting a second opinion on my continuing to take Letrozole beyond 5 years. She thought it a perfectly reasonable that I should ask for this. So I am waiting for that now.

I was surprised to get a text from the chemist today advising me my prescription was ready for collection as I was not waiting - aa far as I recall for anything. Anyway, when I asked it was a rx for a further supply of Letrozole! So my GP seems to be pi happy to continue prescribing it.

I am not sure whether it really is a good thing or not! - but will wait for this second opinion to decide or them to decide for me.