More Than 10 Years Of Hormonal Therapy

pip57

I have been taking hormonal therapy for 10 years now. Against all odds I have survived NED. Luckily, my side effects from Arimidex are minimal. I have an oncology appointment next week and I know that my doctor will want to take me off Arimidex.

I am wondering if anyone has continued treatment beyond ten years or know of any studies that suggest that it is a reasonable consideration.

I am reluctant to stop a treatment that has been successful so far. I rather enjoy be alive.

sugarplum

PIP - right there with you - my cancer was also multi-focal so they were not able to keep a sample of the tissue, which means they've been unable to run any tests that could help predict my likelihood of recurrence. I've also just passed the 10-year mark on my Arimidex and actually had to find a different oncologist to extend my prescription. I'm seeing a third one in July for a final opinion due to concerns about my osteopenia, age, etc - but so far I've been unable to let go of the AI trapeze!

I'll be very interested to know how your appointment goes, so please report back to us...

Best, Julie

pip57

Hi. I haven't been on for awhile so I'm so glad you are still doing well.

A lot will depend on my latest bone density but it's never been an issue before. I really hate to change what seems to be working. I will let you know how I make out.

Patwiley

May I ask if you gained a lot of weight with hormonal therapy? What were your side effects? I am in chemo now and then radiation and hormone pills to block estrogen. Great to know that it has been 10 years. Good for you!

pip57

I have gained weight but I don't think I can blame it on the Arimidex. I am living the good life in a retirement community so it has come about due to lifestyle.

I do have some aches and pains but I just keep moving. In my view, it is better than the alternative. I am just starting to show some bone loss. However, my bones were so good before treatment they are now considered normal. So they will be monitored every year now.

The oncologist says I am still high risk of recurrence. Look at Olivia Newton John. Unfortunately, as there are more long term survivors to study, they are finding that a lot of us are never "out of the woods".

At my last appointment, I talked the doctor in to one more year. Yeah!

Good luck with your tx Patwiley. You are at a overwhelming place in the journey right now

Racy

That's good news for you, Pip. It is possible that treatment protocols will continue to evolve. Just a couple of years ago the protocol was five years max.
I'll also be seeking to continue with some form of treatment beyond 10 years, if I get there (currently 6).

I have a lot of faith in AIs.

anneflorida

I am happy to see this post. I have been taking letrazole for 7 years and have been wondering what will happen when I reach year 10. I am also still high risk and have no side effects and my bones are still good. I would like to keep taking it and hope the protocol will change.

InGodshands

Hi ladies. Pip57 you mentioned Olivia Newton John. Do you or anyone else know what stage she was or any if her stats back when she was diagnosed in 1992? I have been trying to research it but the only articles I can find are from her most recent stuff.

pip57

I think she was stage three negative. I'll see if I can find some more info.

InGodshands

pip57 Thank you. I haven't been able to find anything. Hopefully you'll come across something. Hope your having a good evening

pip57

Articles keep referring to hormone positive cancers when discussing her.. so I am thinking that must be what it was.

InGodshands

stage 3 too

DodgersGirl

I have just started my journey. Half way thru with chemo. Reading your stories 10 years out NED is just the ray of sunshine I needed today.

Bless you all and may you stay NED!

Putz

I am also from Canada. Do you know if they are doing 10 years of hormonal every where in Canada?

pip57

I think 10 years is the norm now.