Anyone Stage lll stopping AI's at 5 yrs?

SSInUK

I can't access the link above so here's another: http://www.nejm.org/doi/full/10.1056/NEJMoa1604700

What this says is it AIs reduce cancer recurrence used for 10 years - but not overall survival . This is a little confounding - but I think most of us would take our chances with causes of death and do what we can to reduce recurrence. This is the study Outfield discusses above so elequently. There was unequivocal and widely accepted evidence that ten years of tamoxifen is better than five a year or so ago so I think this study threw everyone and cinfused the picture. If I'm lucky enough to get to five years and more I don't plan to take no for an answer....

Artista928

Mine wants me on for 10 years. She's into research as well and says I'm high risk. I'm 52. Maybe age has something to do with it as well. I'd love to go back on Tamox as the 7 months I was on it just gave me cramps. Letrozole hasn't gotten bad yet 2 weeks in but I can feel my joints changing and my fuzzy/fatigue head which I already had memory issues with. So confusing what to do. Like someone said, I'm too afraid not to follow my MO's advice esp since she's highly regarded around here. I'm 95% ER+ and 50% PR+

At least for those of us just starting, we have 4-5 years for more research to come out about this. Who knows if 5 or 10 will be the recommendation at that time.

SSInUK

our own BC.org site has an excellent update: http://www.breastcancer.org/research-news/ai-use-more-than-5-years-may-benefit-some

Artista928

Wow, thanks for the link. Great info. Seems my onc sees I had 7 cm tumour and 1 node +, in addition to being really overweight and 52 that that's why she wants 10 years for me. We'll see in 5. Maybe at that time there will be something else with less side bad effects out.

TectonicShift

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SSInUK

My friend, who was dx'd as Stage 1 then had regional recurrence, was ok for 6 more years - then progressed to stage 4 a year and a bit after stopping tamoxifen. Anecdotal, unscientific, could be coincidence, not meaning to scare anyone - But ask her husband how he feels about her stopping tamoxifen....

foobs

SSInUK, I'm so sorry about you losing your friend and certainly understand your concern about stopping Tamoxifen. I hope you don't mind my asking, if you know, was her DX triple negative, and what grade were her cells? If you read below, you'll maybe understand my asking…..

I lost my sister who was diagnosed at the same time I was. She was barely Stage I at DX! I was Stage IIIA. My sister's DX was Triple Negative with Grade 3 cells. I was ER+ with Grade 1 cells. I understood then and do now, what a gift it is to be able to take AIs and Tamoxifen to fight this! I wished fervently that she had had that weapon. I do still feel reassured having taken Aromasin and Tamoxifen for the 7 years that I did. But based on my research and understanding and with my oncologists agreement, I have done everything I can to prevent recurrence.

I notice we seldom use our T tumor and N node grading on our signatures. (I just added mine) I do understand that having a large tumor also plays into the decision of how long to take these drugs. Its a decision none of us take lightly.

My best to all of you struggling with side effects, decisions etc, in all of this---that none of us asked for or deserved!!

SSInUK

My friend was ER+, I don't know the grade. She was just so unlucky. It's a crap shoot. TN is so scary as an initial diagnosis - but if you get through the first fewyears your risk drops substantially. Whereas the HR+ women have better outcomes early on but a seemingly endless tail of risk. I comfort myself with the many tales of Stage 4 women whose observable disease shrivels away to NED on anti hormonals. Happily I have another friend in that boat. It's encouraging to all of us that our daily pill can be that effective...

wintersocks

fondak

I am 100% er and I am just about to come off Letrozole and be put on Tamoxifen. I have yet to make that appointment to start the change over, but i WILL be asking why it is I will be taken off letrozole. I have an idea that as i am Osteopenic that to stay on letrozole would be a bad idea,

I would be unhappy to not stay on anything and I agree with other who suggest a change in oncologist.

I am happy to report what is told to me and I am in the UK, so it might be interesting to see reasons given for the change in meds in comparison to the US. we also have a similar dx.

SSInUK

I am also in the UK wintersocks - I get the impression that Oncs are sometimes hamstrung by nhs protocols in a way US docs are not. Will be interested to hear reasons given to you but obviously bone thinning would be a good reason to change. Btw my hospital has just got the NHS to agree to fund bisphosphonates. As adjuvant treatment for early stage bc. Now being given with chemo. Didn't apply when you and I were treated but they're going to put me on six monthly infusions from now - another question to ask in your on

fondak

I had my appointment with the oncologist in Atlanta and he was amazing! I'm so happy to have found him. He acted like he had forever with me and also shared my concerns with going off aromasin at this time, noting that my cancer was 95% estrogen positive, in the lymph nodes and a large tumor. I feel so much better. Thank you all for sharing your thoughts on the matter. It really helped me a lot in deciding to get the second opion and with who is now my new oncologist!!!!

hopefour

Fondak thank you for keeping us posted and grateful you sought out a new oncologist!! It sounds like your care is more fitting to what you want!! If my oncologist tries to take my Als I'll be looking for a new one too!!

Elizabeth1959

My oncologist says that 5 years of AI is applicable for early stages without nodal involvement. Since I had a 16.5 cm tumor with 1 positive lymph node, he says I should plan on being on AI's indefinitely. I enjoy living so that seems like a good plan to me.

Elizabeth

Lily55

I am a bit worried about this as I have been told "protocol" is 5 years only..........and I was locally advanced with node involvement and very highly hormone positive......but there is no room for negotiation and the cost to buy it privately is excessive, would be a quarter of my monthly income.....

pupmom

foobs, patients who are triple negative don't take tamoxifen or Als. Those drugs are only for people who are estrogen positive.

fondak

Lilly55 Can you get a second opinion? My oncologist that I've been with from the beginning would not hear my concerns either. I even asked if the study she referred to involved all stages or just stage 3. She said it was a combination of all stages. I found another doctor and he said who totally felt like it would be a good for me to stay on aromasin since I too was highly estrogren positive. He went on to say that if there was cancer left behind lying dormant I wouldn't want it being fed with estrogen which the aromasin keeps away. I am so happy I switched. I hope you can get an answer that you feel good about.

Artista928

Elizabeth- You had a 16.5 cm tumor??

NancyD

Fondak, I'm really glad you found a new oncologist who will continue your AI treatment. It sounded like your previous onc was throwing you to the wolves. I think the peace of mind one gets from continuing AI treatment is worth almost all the side effects they can cause. I know I'm willing to stand a bit of arthritis because, truthfully, at almost 66 I don't know that I wouldn't have it anyway. And I'm certainly not willing to risk having my bc reoccur just to be rid of some achy hips and knees. Ibuprofen takes care of that.

For the unlucky women who do have insufferable side effects, I am truly sorry you have to lose this defensive treatment. I hope with all my heart that it has done it's job and your body has gotten all it can from it. Know that you did your best. No one should suffer indefinitely—what kind of life would that be?

Lily55

Its a public system here so I get who I am given, the system has a protocol. so human REAL people don´t matter, only the protocol does

fondak

Lily55 I'm sorry to hear that. If you can't keep taking it, have you looked at foods have an aromatase inhibiting affect? I heard Joel Furhman (I think that is his name) say that the simple button mushrooms have that and you only need 2 a day. There's a lot that I am looking at. I remember, after I finished chemo, trying to be healthier. I was having oatmeal several times a week and I would pile on the cinnamon....more than what was a pleasing taste but I thought it was for a good cause. Then, I read it's highly estrogenic! The internet can be so contradicting about things. I always try and find studies supporting what I read rather than just reading stuff. I actually went out and bought some herbs to plant today. Bee Balm was one. I think it's good in fighting estrogen but I need to do more research about it. I figured if it doesn't work out for me, the hummingbirds will be happy. I'm a little later in the game than I would like to be but I'm really trying to see what I can learn......like lavender.....it's estrogenic. It seems so far like a lot of calming herbs have estrongenic qualities. It's rather frustrating but when I find enough things that are good for my 95% estrogenic self, I hope I will do better!

I just thought, will they let you take tamoxofin? Originally, my doctor was going to switch me to that before she cut me out of everything.

fondak

NancyD, Thank you! I am really thankful to have found him. I said the same thing about my aches to the new oncologist when he asked how I am doing on aromasin. I told him I have little aches, nothing like the first 2 years and I'm not sure that I wouldn't have them I were off of aromasin but I do know that mentally, I'm much better on it.

I just notice you are going on 10 years now!!!!! That's great!

SusanGA

could you tell me the name of your amazing oncologist. I'm looking for one in Atlanta. Thank you

ElaineTherese

I have no idea how long I will be on an AI (Aromasin). I've been tolerating it well for over two years, but my dexascan from last week shows that I already have osteoporosis (not even 50 years old!) and am at a high risk for a fracture. I will be seeing my new oncologist on July 12; she may recommend Prolia for me.

fondak

SusanGA It's Dr. Perry Ballard. You can read about him. He's also very, very kind and caring. He's at Piedmont Cancer Center right at 75 on Howell Mill. They also have some pretty amazing classes there that are free to anyone who has had cancer regardless of who or where your doctor is. If you're interested in going to one let me know and if it's where I can I'll meet you there.

ElainThere I sure hope mine bones hold up too. I was told I had osteopenia (that was before 50 for me) which I didn't have before but I'm been getting zometa infusions once every 6months. They're doing great now but I don't know how long I can take zometa. I need to start doing exercises to try and help. I'm good with taking vitamin D and calcium.

libby2002

I am also very worried about eventually stopping Ais. My onc said I could probably stay on 10 years but I'm not sure about longer term. I am wondering if there are any success stories of stage 2/3/node positive people stopping and staying NED

karen1956

I stopped AIs after3 1/2 years due to side effects compromising my quality of life - and that was in 2010 - I believe in my heart that I did everything possible to treat my stage 3 ILC - bilateral mastectomy, chemo, radiation, AIs ( 3 1/2 years), oophorectomy. Thankfully as of March 2019, I'm still NED. My 13 years out from diagnosis and my oncologist still follows me every 6 months. If something new comes around I might give it a try - but I won't go back on AIs as long as I'm NED - for me the side effects were too horrific!