How Many are doing 10 years on Aromatase Inhibitors
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Jessica ... You reminded me of a little gem of a book written by Columbia University professor, Stuart Firestein, Ignorance: How it Drives Science. He believes that once one understands what they don't know, or questions what they THINK they know or don't know, will ultimately lead to knowledge. Knowledge does not necessarily lead to facts. Knowledge leads to understanding that leads to more ignorance that leads to acquiring more knowledge.... That may or may not lead to facts. Acquiring knowledge is messy. And it requires a healthy dose of ignorance.
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Hi everyone. I'm also coming up on my 5 years on Arimidex in November. The last time I saw my oncologist at Hopkins, he said the same thing as Ruthbru's said. There is no definitive evidence that staying longer on an AI is better, but some believe it is given the study on Tamox. However, he worries about the long term side effects of the AI. He's looking at SE's and specfics of dx to decide. My SE's aren't life changing right now -- I have to take Nexium for heartburn and Reclast for osteoporosis which I didn't have before Arimidex. I exercise, try to maintain a healthy weight and try to eat well (but don't always succeed). When i last saw him, he was thinking 5 years only for me, but wants to discuss again when I see him in August. My DH is pushing for me to come off the meds, but I think I'm going to follow my Onc's advice - whichever way it goes. Thanks for this thread! It makes me feel less alone.
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voraciousreader I believe the other quote, bit simpler is "the more you know the less you know." Socrates was around before Prof. Firestein
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Lago... Yep!
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You have to keep in mind that these are, in my pharmisist's words, 'serious drugs'. Some of the potential risks of Tamoxifin are blood clots, strokes, and endometrial cancer. Aromatase inhibitors can cause more heart problems and more osteoporosis. As the chances of any of those things happening increases over time while your recurrence risk declines, I hope that doctor's will always look at each individual person's situation before making recommendations either way.
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Hi Ladies, thanks for keeping this post going. I remember reading somewhere on a number of occasions, that they are expecting the release of more data/information on the extended use of AI's or not, at the end of this year (2013). Does anyone know where the source of this information is coming from? Will it be released at that time, or take another 12 months before they will make it public infomation?
thanks Ched
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I am not familiar with new data being released shortly with respect to AIs. However, the PRELIMINARY data concerning the SOFT trial is expected some time later this year. The SOFT trial is looking at whether or not Ovarian Suppression with either an AI or Tamoxifen is an acceptable protocol. The SOFT trial met its quota of patients. The mid point of the trial is in October. The data will be crunched at that point in time and probably be released at the December 2013 San Antonio Breast Cancer Symposium.
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Pages 97-103 of the PROFESSIONAL/PHYSICIAN version of the 2013 NCCN guidelines discusses all if the endocrine therapy trials.
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Wah! I don't want to take femara for 10 years! I hope by the time I get to my 5 years, they've decided it's not necessary! (I'm only in year 3.) Keep this thread going!
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I just found this on one of BCO's main pages, Dr. W is BCO main medical consultant & is answering a question about talking Als beyond 5 years.
Brian Wojciechowski, M.D. says:
We cannot yet be sure for postmenopausal women if 10 years of an aromatase inhibitor is better than 5. Those studies are still ongoing. I think we will know by the time your 5 years are up, though. Some have suggested putting women on aromatase inhibitors for 10 years at this point anyway, but I don’t think that’s a good idea given the side effects of the drugs, most notably osteoporosis. For now, the standard of care for postmenopausal women starting hormone therapy is 5 years.
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I am coming up on one year of Aromasin and I can't promise I can do 5 years, much less 10. too much aching, stiffness, feeling like crap for at least the first hour that I am moving around, hands often feel like Ben Grimm (The Thing in the Fantastic Four.) It wanes over the day but is always there. My lower back and hips revolt if I have to pick anything up off the floor. Still doing modest exercise but grumpy about this. Note: my sister took this and had no side effects except occasional stiff hands. Sigh.
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Hello, I was on tomx for 5 years quit the drug and mets went to the lungs. I started femara and had 13 good years with it. I strongly recommend it. It was very easy to take. UnfortunatelyI had a reoccurring June 30th of this year now starting the injections. I highly recommend Femara!
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So it's been awhile since I've actually been on these boards and I'm not sure why. I'm coming up on the five year mark in November (my oncologist counts it from the time you finish chemo/radiation and start the estrogen blockers). So our plan is to stop taking the armoasin 3 months before my November appointment. This way we will know if the side effects are worth going for another 5 years. I was on tamoxifin the first 2 and then switched to a Aromatase inhibitor. The last 3 years have been difficult - depression, sore joints, muscels, mood swings, hot flashes that steam up my glasses - not sure I can do it another 5 more. I have scoliosis and a bad right hip and the estrogen blockers have just made that worse. I think that is where the depression comes in - the ongoing constant pain really wears you down. My oncologist is on the fence about what the protocol should be. I have two younger kids (9 and 14) so it's not an easy decision.
Will be interesting to see how I feel after taking a break.
The thing I find most difficult is other people who just don't get it and do not give you any leeway.
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With her premission, I am copying a recent post by Natsfan. She posted this on the '5 Years & Done' thread.
"Had my visit with my MO yesterday and we discussed the 10 AI year issue. She said it's being studied, but none of those studies has finished, so there's no change in the 5 year recommendation at this point. She said that during these studies, they do a check at about the midpoint and if there's a clear benefit shown to the tested therapy, they end the study right then and there and start giving the therapy to everyone in the study, so as not to deny the control group the proven benefits. She went on to say that some of the 10-year AI studies are beyond their midpoint and have done this check, and since the studies have continued, the results thus far aren't showing a clear definitive benefit yet to a 10-year plan. She said once the studies are finished and published and if they indicate a benefit to 10 years, then we'd discuss going back on Femara at that time. But for now, she said consider yourself free and clear from Femara. Woohoo!"
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I am about to switch to Femara, after 3 months in Arimedex and 8 months on Aromasin. Hope I have a bit lighter SEs. Wish me luck.
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Luck!!!! (And I am also knocking on wood for you while typing one handed)
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Hi ladies- I am just joining in on this thread. I finished 8 rounds of chemo yesterday and spoke with my onc about starting hormone therapy. I was diagnosed in January and had a bilateral mastectomy with reconstruction as well as an oophorectomy at the same time since I also tested brca2 +. So I am post menopausal at 41 and now need to decide with therapy to be on. My onc said that given the new results of the studies on tamoxifen for 10 years that this could be a good option for me. Her first option was to put me on arimidex but as you all know there are know studies comparing 10 years of tamoxifen v 5 years or even 10 years if airimidex. So my question is which to Start with. My onc and I are leaning toward the arimidex since I am post menopausal and barely osteopenia. She said we can always switch things around if it doesnt go well or new studies come out but it doesnt seem like they have eveb started to study what 10 years of aromatase ibhibitors do for us? Also my mother in law took tamoxifen for five years and died of metastatic bc 8 years into it so I'm about scared of tamoxifen. Any input as to what your onc might be saying or anyone who may be starting now like me and what recommendations they are getting would be appreciated. I Am thinking of getting a second opinion as she said I have 4 weeks to decide!
Thanks
Jsrose
Also is there a better place to pose this question to the forum?0 -
Hi Jsrose, here is a good way to get lots of information about anti-hormonals:
1. go to the home page of BCO
2. on the top of the page there are topics in the pink bar,fo to "Treatments & Side Effect' scroll down and click on 'more Topics'
3. When it brings you to the next screen, look down the left hand side of the page for 'Hormonal Therapy' click on it
4. It will get you to a spot with lots of good information including a 'Hormonal Therapy Side Effects Comparison Chart'
Hope this helps!
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Hi
I passed my 5 years on letrozole in June. In some ways I was looking forward to 'feeling normal' again (whatever that is.....I've forgotten), but in other ways I was fearful of coming off those little pills. I'm still here & whether or not I would have had a recurrence without those pills, I will never know. But I do have great faith in them.
I am under a major Cancer Hospital in the UK and my onc is heavily involved in research (I have every confidence in her). At my 5 year check-up, she asked about my side effects, and then said that she expects the current AI research to show the same benefit to staying on letrozole for anotther 5 years, as the tam research showed.
She has put me on the pills for another 5 years, as I had positive nodes, providing my dexa scans are OK.
I'm happy (well not happy but comfortable) with that.
Mal
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Again, so glad there is discussion concerning this subject. My onc is encouraging me to research and think about staying on Arimidex or Tamoxifen for another 5 years. My side effects are not bad, only vaginal dryness so I am trying to go for 10 years. I am very estrogen positive and had slow growing IDC (Oncotype 11).
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If I have to take Aromasin for 10 years, you may as well kill me now. Not kidding. It hurts that much with every single movement. No quality of life.
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This article is an older one. http://www.sciencedaily.com/releases/2011/09/110925125157.htm
I recall there is an ongoing study for letrozole beyond 5 years with 2 patient groups. One group takes medication year round compared to other patient group takes a 3 month vacation off drug --> so 9 months ON and 3 months OFF to help patients with side effect and bone health issues. I know it is being conducted in Europe and only one investigator site in USA in MA. I just can't recall study name......
My onc encouraged me to stay minimum 7 years on AI and I hope I can make it to 10 years. It is very hard but being dx at a younger age I am trying to get protection for as long as I can. (Stage 2 with 1 positive node and FLAMING hormones 100%!!)
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I was a healthy 70 yr old female in Jan of 2012 and then had a diagnosis of breast cancer. Up to that point I had not seen doctors for 30-35 plus yrs for anything except checkups and a sinus infection (3 in all those yrs). I took no meds (prescriptions) , had no problems with joints, movements, pain, etc. My eyesight had been getting better every 2 years when I had my eyes tested. (Had been near sighted since I was 25 yrs old. My glasses in 2012 were down to only a slight correction due to my astigmatism. Otherwise doctors said I wouldn’t need glasses which they said was remarkable for my age.
Two weeks after my physical on Jan 2 of 2012, I had my mammogram and was told I needed to go for biopsies. Diagnosis: Ductal carcinoma in right breast. Also had 3 tiny tumors in left. These were 2 entirely different kinds of cancer. Right side larger tumor but not aggressive, left side tiny tumors but the aggressive kind.
April 11 of 2012 I had total double mastectomy and removal of 3 lymph nodes on each side, with skin and nipple saving, and started on reconstruction at that time. I chose not to have chemo, (my personal choice) even though it was recommended. My doctor did start me on anastrozole in June of 2012.
Dec 24 of 2012, I woke with pain in my left leg. I could barely walk that day. It subsided after a few days and all was better. It seemed to re-occur occasionally until May of 2013 when it came and has stayed with a vengeance. I went on a 10 day vacation with my daughter in June and forgot the estrogen blocker, my leg was very painful. A few days after returning home I had a couple, three good days but had started on the meds again and then the pain took hold again. It was to the point where I can not walk without a bad limp. My left leg won’t extend fully. The back of the leg from mid calf to mid thigh is tight and painful when I try to extend it fully. PCP has given me a cortisone injection in the knee that did nothing. She sent me to an orthopedic doctor that said he can’t see anything and the x-ray showed I have a good looking knee for my age, no bones rubbing together, all padding or cartilage looks good, so may have an MRI. It is not sore to touch, just when I try to stand and walk, or to extend it fully. Physical Therapy was next and still nothing. They worked on it and did some acupuncture and next day I could not walk at all. So much pain. I saw a chiropractor and he worked on my hips as I am getting them out of place due to the extreme limp I have now.
I have decided to go off the anastrozole. I know some of the side effects are arthritis, osteoporosis, tendon and muscle pain. I have researched this and read where a lot of BC patients have had same problems and also lots of wrist and finger problems. I have decided to follow my own heart and quit the meds. Any ideas.
I wrote this 3 weeks ago. I can now say my knee is much, much better. I can walk now with just a slight limp. I don’t have the pain in my calf and thigh now, just in the back of the knee yet. Some of my other aches and pains are dissipating now also. I will not go back on this. I see my oncologist the beginning of September and will discuss with him, but I will not start it again. I prefer a life where I can do things and move around and travel, etc. not be tied to home unable to walk.
Has anyone experienced this very debilitating pain on this medicine (anastrozole) ?
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No I didn't have problems and am sorry that you did. There are other Als and especially since you didn't do the recommended chemo, you really should give the others a shot before you decide to drop the whole thing. Often, people who have a hard time on one drug will do fine on another. Best of luck to you in your decisions.
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CarolHutton even if the other AIs don't work for you Tamoxifen might be an option. Before the AIs everyone got the Tamoxifen.
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I have not been that bad, Carol, but there are days I wake up almost crying after tossing and turning to try to not lie on a joint (shoulder, hips) that hurts. I try to stay upbeat as after1-2 hours I am 85% OK, though still holding on to counter if I have to bend down. Hands hurt all day but this does not seem to limit what I can do with them. I am off Aromasin now 10 days without relief- supposed to start Femara in a few days. I am trying to be a trooper and keep remembering that this is better than surgery and chemo.
I feel bitter and mad. When others (like my sister) say the AIs were a "non-issue" for her I am so glad for her and so furious. Why don't the researchers work to improve this? If 40% of those who take if feel like crap,isn't that kind of significant?
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Carol,
In answer to your question, here is my personal story. 60 years old at diagnosis, took Arimidex for 2 and a half years with no real SE to speak of. (I consider myself very fortunate, but sometimes worry that it means the drug is not working.)
My HMO switched me to the generic anastrozole when Arimidex went generic. Bam--onset of strange new symptoms almost immediately. Pain and stiffness upon awakening, difficulty walking down stairs, knee pain, stomach upsets. After a couple months it dawned on me it might be the generic. Looked on BCO and found other women who complained of same. After 2 more months I asked my MO to prescribe Arimidex with a 'Do not substitute' on the Rx. My SE subsided very quickly.
You could try just taking the Arimidex (non-generic). Or even a different AI. (Aromasin/Femara).
The Arimidex does cost me more, but the absence of SE is worth it to me. Also I believe the drug co will provide it for $50 a month if your insurance doesn't cover it.
As an aside, I have nothing against taking generic drugs on principle; in fact, I do take others with no problems. I realize this is just one anecdotal piece of evidence and many women take Anastrozole with few problems---we are all so different and it may be the added fillers that cause the problems. Coincidentally, I met a woman in my MO's office who had the exact same experience and asked to be swithched back to the non-generic form of the drug with good results.
Best of luck to you Carol.
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Carol,
In answer to your question, here is my personal story. 60 years old at diagnosis, took Arimidex for 2 and a half years with no real SE to speak of. (I consider myself very fortunate, but sometimes worry that it means the drug is not working.)
My HMO switched me to the generic Anastrozole when Arimidex went generic. Bam--onset of strange new symptoms almost immediately. Pain and stiffness upon awakening, difficulty walking down stairs, knee and foot pain, stomach upsets. I was surprised and after a couple months it dawned on me it might be the generic. Looked on BCO and found other women who complained of same. After 2 more months I asked my MO to prescribe Arimidex with a 'Do not substitute' on the Rx. My SE's subsided very quickly and am now back to almost none.
So I would urge you to try just taking the Arimidex (non-generic), or a different AI. (Aromasin/Femara) as Ruth suggested.
The Arimidex does cost me more, but the absence of SE is worth it to me. Also I believe the drug co will provide it for $50 a month if your insurance doesn't cover it. I have seen posts to that effect on BCO.
As an aside, I have nothing against taking generic drugs on principle; in fact, I do take others with no problems. I realize this is just one anecdotal piece of evidence and many women take Anastrozole with few symptoms---we are all so different and it may be the added fillers that cause the problems. Coincidentally, I met a woman in my MO's office who had the exact same experience as I did with the generic and asked to be swithched back to the non-generic form of the drug with good results.
Best of luck to you Carol.
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I also believe that I have fewer side effects on the non-generic Arimidex. I have a lot of stomach trouble on the generic.
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I have been on the generic arimidex for nearly a year and a half and feel very fortunate to be handling it very well so far. However I will be interested to see what my next bone density scan looks like. I met with my breast surgeon and oncologist yesterday for my 4 month checkup. All is good for another 6 months. I did ask about the new talk of taking this med for 10 years instead of 5. They did confirm there is talk of it but my breast surgeon said by the time I reach the end of 5 years chances are there is going to be a lot of new discoveries and it is evolving all the time. There could be some other form of treatment by then. I hope for those being so adversely affected that something better will come along soon. Personally for me with grade 3, lvi present, 98% er positive, onco score of 24, taking this drug is a no brainer for me. So far so good. It is indeed a very personal choice we all have to make.
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