How Many are doing 10 years on Aromatase Inhibitors
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oh dear, can see the news reports now....little while haired lady robs bank and makes off with millions!
Not to worry, your secret is safe with us0 -
Only if you send for us to join you!!!
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Me too, me too!!
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http://www.sciencedaily.com/releases/2013/11/131107122744.htm
A team of researchers at UT Southwestern has found that as cholesterol is metabolized, a potent stimulant of breast cancer is created -- one that fuels estrogen-receptor positive breast cancers, and that may also defeat a common treatment strategy for those cancers.0 -
Pip57 - thanks for your response! You are a great encouragement to me.
When I complete treatment, I will be on anti estrogens for 10 years.
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Sharon - interesting article. I will definitely be asking my onc about it.0 -
Interesting article - yes. cholesterol, hm...it's also interesting that, even though oncs all must have access to the same literature they can have such differing views. well I guess that can happen a lot in medicine. we just hope OUR onc has read up the latest.0 -
Peacestrength...at our stages I think the decision is a little clearer for us. It looks like you are at the beginning of this new way of living and doing whatever you think will be helpful. That is the best we can do. My onc is extremely pleased with how I am doing. And so am I.
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Ditto Lago, my left hip has osteopenia, along with back issues, and I'm 52 also.0 -
Loral I had Osteopenia before chemo. I dropped quite a bit after chemo, chemopause and 5 months on asastrozole. The following year I was stable. Now this year I dropped into osteoporosis (lumbar spine only). I'm confused why this past year I dropped so much.0 -
Hi Loral, I was 52 when diagnosed, now with almost 6 years of Femara under my belt, it is painful for me to walk, my hip joints hurt so much and my bone density has dropped dramatically. When I mentioned this to my Onc, he replied that I probably will need a double hip replacement in time. I must say I was surprised by his response and said I thought I was much too young to be looking at hip replacements, he then continued by saying "Well there is no Free Lunch with this Drug". Yeah really, in other words just suck it up princess, you are still alive. I can assure you I wasn't totally impressed with that response, however I guess compared to the ladies in the Stage 4 boards, I can't complain.
Ched0 -
For people who are stage III, I can totally understand the decision to keep taking the pill, on the chance that it still has preventative properties. But aussie, as flannel's doctor just pointed out, the research does not indicate (at this time) that it does, so at stage II, and having real issues that are having a serious negative impact on your overall health, I do not understand your doctors recommendation to stay on at all!!!!
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It's a very difficult question/answer. For those at a high risk of recurrence, who have been on an AI for 5 years, I can understand the recommendation to continue. My onc (who is heavily involved in research) expects the results of all the 10 year tests to come down heavily on the benefit and consequently recommends that (to those whose s/e aren't too debilitating, including bone loss).
I can understand those having really dreadful s/e weighing up the benefits versus side effects, but I think for the majority, the s/e can be quite severe in the early days but do even out after a few months. For those (like me), who also have a few nodes involved + high grade, the benefits (whether just perceived or real) do outweigh the dreaded alternative.
I have (rightly or wrongly) great confidence in AI's. I'm still here (not on this site too often), do have some s/e (some bone loss, aching bones, weight gain, sex life? what's that?), but am still enjoying life and have had 5 grandchildren since my dx. Who's to say that I wouldn't have still had the same without AI's? I'm not willing to take that risk.
I've seen too many of my circle of friends/acquaintances succumb to this disease to be complacent.
Mal0 -
Yes, I agree, it could quite well happen that in a few yrs time it's very clear that 10 yrs is better than 5......and I was surprised when my onc & I didn't have a big discussion.........and it's both with relief and trepidation I go off arimidex in january, wondering........and if I get a recurrence, I will be very, very angry and sad.
Yet, she's also trying to spare me from other health issues down the road. Perhaps it's because I'm just stage 2 and no nodes the direction seems clear to her, or perhaps she's one who is flatly on side of we don't go there till there's a proven benefit - rigorous towing the scientific line. I have actually thought of investigating what the alternatives use - DIM & there's another name for it - and might start eating & drinking large quantities of broccosprouts (sulphoraphane?) and home-brewed Japanese green tea....I am definitely not used to doing nothing...0 -
flannelette I'm a big tumor no nodes too. I was only 30% ER+ 5% PR+ but 30% of big tumors like ours is much bigger than some lower stages. I do believe I will have this conversation with my Onc when I see her in the spring. Getting osteoporosis at age 52 because of this drug isn't good either. I don't think my bones can do 10 years0 -
Now two months on Tamoxifen, after 13 months trying all three AIs. Doing much better.Like I don't feel like I'm 110 and I can walk down the stairs in the morning without holding on to he wall and the railing.
My tumor was only .8 cm,but grade 3, my onco 38, my K167 43, so I guess mine was an aggressive little shit. Hope I can stay on this and it is doing what it needs to.0 -
Hi flannelette,
Question if you don't mind.
What prompted you to remove more lymph nodes in 7/12? I am lymph node concerned as mine was positive even though it was anticipated to be negative based on tumor size an MRI results. So thought I'd ask. I just started an AI and can't wait to be done... So congratulations to you! Hope you keep posting so we can all keep up.
Love to all you B.C. Ladies0 -
Well I just saw my onc today and am as depressed after as I was before my visit. I am 6 1/2 years on Femara - started with 4 months Tamox but bad side effects so had ooph to switch to AI. My cholesterol values have been creeping up and I am very frustrated over it. We discussed my diet and he told me to visit my nutritionist...... My concern is the link Sharon1942 posted which I am familar with as I have high HDL. GP and cardiologist like the value and how did I get it so high --- but they are not informed about oncology IMO. I mentioned this research to my Onc and he didn't comment..... It felt like a once sided dialog - - me lots of questions and him nodding. He mentioned I should stay on Femara at least 8 years as I had a positive node. However, IMO it and ooph are contributing to my cholesterol changes. No reply. I expressed concern for patients developing anti-estrogen drug resistance with long term use of Tamox and AIs - - you guessed it -- no comment. He was probably relieved when I left the office.
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I remember reading, a very long time ago, that they were considering the anti estrogen drug resistance as being the result of what they called 'non compliance'. Apparently it is a well known fact that a lot of women do not adhere to the daily dose of their AIs. Much like when people don't take their anti biotics properly and those little germ cells outsmart them. I will see if I can track down any info on this. It was an ongoing discussion here several years ago.0 -
I remember reading, a very long time ago, that they were considering the anti estrogen drug resistance as being the result of what they called 'non compliance'. Apparently it is a well known fact that a lot of women do not adhere to the daily dose of their AIs. Much like when people don't take their anti biotics properly and those little germ cells outsmart them. I will see if I can track down any info on this. It was an ongoing discussion here several years ago.0 -
Hi Gracers - the 6 nodes removed in 2012 were from my "good" side. My annual mammo showed a 1.2 cm lymph node in the axilla that had not been there the year before. 1.2 is larger than the "normal" 1 cm. So they just thought they'd better look closer. So had an US and that showed a 1.5 cm node. which led to a fine-needle biopsy, showing nothing. it then became the Hunt for Red October. They wondered if I might have a new occult (invisible) primary bc in the "good" breast. So, I can't remember all but there was a Ct scan and an MRI and a bone scan looking for metastases (in case a br c cell had made the very unusual feat of jumping from the left DCI breast over to the good right). which my surgeon said he had actually seen once or twice in his career, so it was not impossible.
Finally, the icing on the cake, 6 nodes removed from "good" side. Nada. they finally had to concede that there are many reasons why a lymph node can enlarge & go into combat mode. In my case it was probably because for close to a year I had been fighting neurodermatitis - the rash from hell, which covered my body from ankles to neck. all the drs agreed all along, yes, could be, but given I'd had br ca they had no choice but pursue it till they could rule out recurrence, a new primary, and metastasis.0 -
CP - sounds like maybe getting a consult with another onc for a second opinion might be a good idea for you. I switched oncs once chemo was done for reasons much like that - I kept asking questions that were important to me, and instead of engaging with me and answering questions, he kept edging for the door trying to get away. I found a MUCH better onc who listens to me, discusses the current research with me, and treats me with respect and like I actually have a brain.
It sounds like your onc is not listening to you at all, so why not find one that does? Besides, it's never a bad idea to have fresh eyes review your case from top to bottom - just to get another perspective.0 -
NatsFan - I know I was having a bad day - and need to step back at times from posting articles. This is my 2nd oncologist and he came highly recommended - I much prefer him over my first onc who always rushed our appts. It was reasonable to refer me to my nutritionist for specific diet/supplement questions. Many of us here have noted how lacking onologists and GPs are in background regarding nutrition --- all about treating with drugs. I realize I ask the tough questions (due to reading research articles) and he certainly doesn't have the answers. I think he was actually being good to listen and recognizes I am informed. (Some doctors might be offended or put off by an inquirying patient with a medical background.) Also, I told him about recent the BZA activity with Pfizer and their new drug Dualvee. News to him but he has an inside Pfizer contact and will inquire further. Sadly sometimes I need a chill pill.....
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Hello everyone
I saw my onc today and wanted to post about what is happening with my tx.
I have learnt so much about this disease by lurking on boards and I always feel the need to keep the information moving round by posting periodically!
I am due to finish Arimidex next month after five years - I don't want to. I am a single parent with a very young child. I have to do everything I can to avoid getting ill again.
I spoke to my new onc about staying on Arimidex for longer but unfortunately my bones are in a mess. An 8% drop in density in my spine - now officially osteoporotic in spine, hip and neck at the age of 48. That is what oopherectomy and AIs can do to you.
I asked her about going onto Tamoxifen for 5 years - she grimaced at first and then said "Actually - why not?" She has to take this to a meeting of oncs within the hospital to get approval. I can't see the problem myself - I continue to get endocrine therapy but it isn't actively destroying my already messed up bones.
I will know more in the New Year once meetings have been had with rheumatologists and other oncs.
I am sad that my bones are in such a mess because of this disease but I am determined not to ditch the hormone therapy yet.
Stay well.0 -
Miso at my last onc visit in April my NP told me there was a change that the studies might say 10 years. I told her I was concerned about my bones (osteopenia at the time but stable). She mentioned that going on Tamoxifen might be an option… fast forward to October, I now have osteoporosis in my lumbar spine at age 52. I will not be doing AI for 10 years because I don't want to be on those bone building drugs for that long. Not sure if they will recommend Tamoxifen by my NP said that even though I was node negative my tumor was very large. Granted only 30% ER & 5% PR but that still puts it at about 1.65cm of cancer ER+
Will see what they say in April0 -
Oh, this is all so funky and stressful. Like a board game you had NO interest in playing. Take this? Risk that? Get cancer again? How much feeling bad is bad? And to add to it all, our insurance company may not renew the contract with our medical group and I'll have to find new doctors. 16 mos out from starting AIs, and then changing to Tamox. Well, we will see how it unfolds.
Beautiful weather today in northern Cal. Fall has been gorgeous. And my older son passed the bar exam!!!!!! posted yesterday. I am so happy for him.0 -
Hi Miso,
I read your comment with interest. I have been on AI for 3 years with 2 more to go, but am wondering if I should switch to tamoxifen soon (or after 5 years). I have my next bone scan coming up soon so I will wait for that and then consult with my onc. My concern is that I have 3 herniated disks in my neck that have gotten much worse since starting the AIs, I am 54 years old, still very active, but there are times when my neck is so painful and even scary when I sort of lock up that I will need to weigh how best to balance out my need to stay on these meds and other health issues. Definitely grateful to have so many options and really appreciate all that I learn on these forums.
Happy Thanksgiving to All!
beau0 -
Beau...I also have 3 herniated disks in my neck. My onc and GP both felt that AIs were not the culprit. Of course I still wonder but it is hard to know what would have happened regardless of taking AIs.0 -
Miso, I just finished 5 years of Arimidex and my onc offered me to continue on Arimidex or take Tamoxifen. My onc is at Vanderbilt a world renown cancer center.0 -
I just had this talk with my onc last month. I just finished five years on anastrozole, and although there are no completed studies for continuing it for 10 years, there are studies for Tamoxifen. My onc said they are correlating those studies with the AIs, and as long as I'm tolerating it well, I should stay on it.
So it looks like I will be on it for another five years.0
