How Many are doing 10 years on Aromatase Inhibitors
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Take notes. I am very interested in the responses. I wish I had been more informed on my last onc visit.
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I took Tamoxifen for 4 years and had a local recurrence in October of 2010. Now I've been on Arimidex since May of 2011 and my oncologist said I will stay on it for at least 10 years. He said he could see me on it as long as I live which I hope is a long time:)
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Okay, had my doc visit this morning. Regarding the BCI test. His opinion was that the findings they presented at the last conference were preliminary and he's not giving the test much weight until he sees more data results. Interestingly, he did claim they they could still use my tumor for the test and they would get it through the oncotype test people.
We also discussed me staying on Tamoxifen (recently had a hysterectomy due in part to an ominous ovary) instead of going on an AI. I have a couple spots of osteopenia and we both agreed since I was doing "fine" on tamox, that the very tiny benefit I may or may not get from switching to an A.I. would be worse for my bones and not worth the risk/benefit ratio.
I asked him his opinion on the 10 years of Tamox and he said he is really only recommending it for people with higher stages (than mine, which is 1a). He said since it would only give me a 1 or 2% absolute benefit, that it would be a tough call (in my case). He said he would be in agreement and totally comfortable with me if I decided not to pursue it after 5 years. I have 2 1/2 years to go and don't have to make the decision for awhile but I'm going to need some pretty heavy convincing to go past 5 years at this point.
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I would strongly advise anyone who is either starting, or continuing, aromatase inhibitors to have a bone density scan done prior to starting - or as soon as possible after starting this medication. It is important to have a baseline bone density as these drugs can cause bone loss. Staying on aromatase inhibitors for longer than the five years can be a problem for some and knowing where you are on the bone density spectrum is vital to making a decision to continue taking them.
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Special K - I agree. Because of these boards, I was informed enough to ask for a bone scan before I even started the tamoxifen 2 1/2 years ago. That is how we found the osteopenia. I had no idea and was quite surprised. I'm getting another one done this year since I hit my out of pocket maximum with my hysterectomy. It will be interesting to see how they look now since Tamoxifen can cause bone loss in PREmenopausal women (but I have also upped the exercise and supplements). Though now tamoxifen will be doing the reverse and actually help build bone now that I'm in surgical menopause.
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susansgarden - I became osteopenic due to surgical menopause when I was 45 - I was stable for the nine years between the total hyst/ooph and breast cancer diagnosis. I had a regularly scheduled bone density on the same day as my mammo/US that revealed the cancer, so I had a good pre-treatment baseline. I had another one done after chemo and having taken Femara for six months. I had loss at every measurement point - severe enough that my onc had me start Prolia. I have had four Prolia injections, six months apart, and just had another bone density done a couple of weeks ago. I am happy to say that I just looked at the report and I am no longer even osteopenic at any of the measurement points. I am hoping to stay on my AI and possibly switch to Tamoxifen after the five years, as I was 96% ER+ and don't want to abandon hormonal therapy.
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That's great news SpecialK!
I'm hoping the benefits of tamoxifen post meno will keep me stable or even add some growth.
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susansgarden - thanks! I am pretty happy! I hope you have stability or improvement on Tamoxifen as well. It is mind-boggling how much collateral damage can happen as a result of treatment!
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I have had insignificant bone loss during the first three years on AI. I am waiting for the results of my latest one to help me decide whether or not I should stay on the med. Being at a higher stage, I'm hoping I can continue.
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I convinced my doctor to order a yearly DEXA while I was on. I didn't want to wait two years & then find myself in trouble. I stayed in the normal range but had started to dip by the end of the 5 years. I am interested to see what my next one in December says (I'll have been off for over a year).
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Thanks for asking about the BCI, Susan.
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So glad to have found this thread! I used to be on these boards every day during my diagnosis and treatment phase and they helped me tremendously. I finished up tamoxifen in November 2011. I was pre-menopausal the whole time. The only side effects that I experienced were increased uterine lining and my bone density test showed me nearing osteopenia. Both have subsided and I am back in the normal range.
So....now my Onc wants me to try Arimidex. Sigh. I am now post-menopausal. He said that it is "reasonable" that I try it. I will admit, and honestly quite unlike me, I was not armed with my usual fifty questons at my last visit.
I would like preface this with the fact that I am over 7 years out and feeling really great mentally and physically. I did decide to go with my Onc's statement that it was "reasonable" that I try it...I am now three weeks in. I have a slight headache all day, a nasty metallic taste in my mouth and I am noticing strands of my hair coming out. (lol maybe the hair thing was happening before but of course now I am hyper-aware of everything.)
So a call into my Onc office....They told me to stay off it for the weekend and to report in on Monday. I have no idea if that is enough time to make an assessment, however when I do call I will have my questions ready this time. Especially after reading these boards I am wondering if the benefit for me really outweighs the risks...
Anyone else out there have such a big gap of time in between hormonal therapies?
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I'm so glad that I checked in on this thread today. I have an appointmrnt with my MO next month and I definitely plan to ask him about the BCI test. I think his intent is to keep me on an AI for more then 5 years. I developed osteopenia after 18 months on the AI and have the daily joint pain that can be associated with it. I know that the lab that has my tumor speciman keeps it for 7 years. Ruthbru, you joked you would have kept your in the fridge but I already told my MO that I want it released to me rather the destroyed after 7 years! I have a few more years to figure out how I'm going to store it.
Aggiefan - I have not had your experience but I do know that with the 1/2 life of AI's it takes 5 days it takes 5 days for them to be eliminated from your system. I'm not sure that you will see much of a difference just discontinuing the Femera for 2-3 days. I hope that you do see improvement in your side effects.
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had my almost 5 year visit yesterday--at Dana Farber. They are not using the BCI right now--- using oncotype and oncomap.... I saw the NP not my onc and she is very knowledgable--- had not heard of using the BCI--I did ask about the sample--mine is stored away at MGH and she said it is unlikely that they would pull it out to test it right now, but clearly if the research goes in a certain direction, that could happen---of course this will become an insurance question as well...
So, no clear answer--but I suspect, like the oncotype, perhaps the BCI will be researched well enough to become part of the diagnostic process. I had friends who had been dx five years before me and they had never heard of the oncotype---- so now, after my 5 years, I am not surprised that there will be some new tools that continue to drill down more.
Staying on femara until May, which will then be 5 years on the drug--then getting off-- unless something dramatic comes up at the December conference in San Antonio related to AI's--even if it does, I am getting of, at least for a while to see if I can shake these minor side effects such as vaginal dryness, etc.
MRI done, results on Monday-- I have no reason to think it is not fine..... all in all a good day at the almost 5 year mark.
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Hi everyone, thanks to all who have continued to keep this thread going. At the time when I started it, I had many questions that my specialists could not answer regarding extended treatment, and it would appear that there are a lot of other women in the same position as my self as to finding evidence on which to base our decisions on extending aromatase inhibitors past the 5 years.
Aggie, I find it interesting that your onc now wants you to try Arimidex, particularly when your diagnosis was 7 years ago, and that you didn't have any positive glands. It appears that every onc seems to have differing opinions on treatments which I find a little unsettling. Also I can't see how going off it for the weekend would be enough time to make a determination on the affects of the drug. A few years back I developed vertigo, and I felt Femara was the culprit, and the onc finally agreed for me to stop the drug to see. It took approximately 7 weeks off the drug before I saw any benefit, and the vertigo then started to settle, so it took quite a while for it to get out of my system.
The hair loss is definitely linked to the aromatase inhibitor
Ched
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Aggie, with a stage I, no nodes, and seven years out.....they would have to have more evidence than they have right now to convince me of the benefit of going back on....... unless you have a strong family history or genetic stuff added into the mix?
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Thank you so much for your quick responses! @Ched I completely agree, especially after reading this thread, that there are a lot of varying opinions among the oncs out there and it IS quite unsettling and frustrating...
@Ruth My mother had breast cancer- triple negative so very different from mine. She was diagnosed in 1978 at 42 and died at 43. (She previously had Hodgkins at age 37 and along with a radical mastectomy and chemo she was also blasted with cobalt radiation in the chest area to get to the lymph node in her neck. She did go into remission from that) I always thought that my odds were better because of her circumstances. I was 45 when I was diagnosed. I had genetic testing and I am negative for the BRACA gene. Is there another gene they don't know about?...is it environment? Is it what we eat/drink, what we don't eat/drink Who knows....it's a crap shoot for sure. I will tell you my D levels were LOW when I was diagnosed and I supplement now to keep them very high. Another story for another thread....:)
This is what I do know....I was feeling great! Now..three weeks into this drug I am already feeling the side effects. I don't have vertigo but I definitely feel "slower" if that makes sense. I have a headache all of the time and the occasional hot flash. I am also vain enough to dread having my hair thin out....being bald once in my life was enough and I really like having my hair
. I don't have the joint aches yet and I can tell you that scares me to death because I am very active and dedicated to my strength training and running regimen.My onc did tell me my odds of recurring are "low" and I am 7 years out.... So...I am thinking like you Ruth that I need a lot more evidence to show me the benefits of this.
It is comforting to talk with other women that are having to face these huge decisions with out a lot of clear facts. Thank you Ched for starting this thread!
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for those of you with vertigo, I am sure you have googled it and know that it can be caused by many things.
I had a time with vertigo last fall, lordie but they tested me for all sorts of thing and talked about some really scary stuff. But it went away on its own....I went to a neurosurgeon (actually 2 of them) and the second one said likely it was only a virus as it never came back
but I do have shitty balance so I asked mty trainer at the gym (he is PT and specializes in cancer survivors).....trainer worked with me, no more vertigo and better balance
and I continue on with my AL till the 5 year mark, try other means to help you with the nasty side effects
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I am 100% for doing the whole 5 years of anti-hormonals. It's after that point where I have problems, as the research is just not there. Right now everyone has to just weigh their risk/benefit ratio (or flip a coin....which will tell you just about as much
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I am with you Ruth, but counting my dang months till the end of the 5 years!
doc and I disagree on if I stop in Dec or Jan....got my last 90 script filled and figure it will be the end!
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I understand where you're coming from BUT I'm nearly 6 years out, past the s/e, and am doing well. Yes, I've got used to the side effects and they are just a way of living now. I would love to see how it feels without the meds, but basically I'm scared. I've been well on femara and I'm scared of finishing them. I asked if I could stay on the pills for another 5 years, and my onc was'nt keen, but she's heavily involved in research and has finally agreed.
I'm glad to have the little pills for another 5 years. It just gives me peace of mind.
xx
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my feet hurt
can hardly walk at times
hoping it improves after ending, the SE sort of snuck up on me so I never complained to doc and just toughed it out
have stayed at same job for years as afraid of loosing health insurance, took the plunge and applied for jobs
at 64, was offered a great job but....would need to be on my feet hoofing around
had to turn it down and in the past, I would have been great at the job
so yeah, stopping em
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I have been off Arimidex now for 6 days. I already feel better. Woke up on day four without my daily headache and metallic taste in my mouth. Mentally I feel like the fog has lifted. I realize I was not on this long enough to get the extreme joint pain many have and also to see if the side effects would subside.
I talked to my onc and he is completely okay with me not continuing. He gave me a choice of going back on Tamoxifen, which I tolerated for five years without many side effects. He was also okay with me discontinuing all drugs. MY choice which honestly is a bit overwhelming. I have decided that, for me, quality of life and feeling good outweighs the slight benefit this drug will give me. Bottom line we all have to be advocates for ourselves, try to discern the incredibly complex information that is out there, and then come up with the best decision for our own situation.
I do know that it is comforting to talk with other women in the same situation. If you aren't "living" this it really is difficult to explain to other people the physical and mental toll this takes on all of us.
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I am almost at the 5 year mark with Femara/Letrozole and want off this med. I can live with most of the se but the disturbed sleep is really weighing me down. During the summer I decided to "take a break, within 2 weeks the aches were gone and I even started to ge some quality sleep, but then my husband read some research from the UK and asked me to start taking the pill again. Almost immediately the side effects were back and I cannot remember the last time I had a good nights sleep. I see my onc nurse next week and I will discuss stopping the meds as I am finding I just cannot function properly, I am up and down all night, then by mid afternoon I literally cannot keep my eyes open, my hands fall away from the key board and I cannot tell you how many times I have nearly snapped my neck, I am sure one day my boss will walk in and find me slumped over the computer ..... I guess we all have to face these choices, I just hope that the nurse will support me on this one.
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Monty I'd be interested in what your onc says. My NP said I might be on Anastrole for 10 years! She said even though I had no node involvement I had a really big tumor. Granted my tumor was only 30% ER+ but 30% of a large tumor is a lot more than 30% of a small tumor. I'm not suffering like you are but I still don't want to be on this drug for 10 years. The only other drug I'm on is a small amount of diuretic… because the anastrozole make me retain fluid.
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Seems for me, to me, BCI test is irrelevant and 10 years Tamoxifen a no brainer. Note: this is my opinion as pertains to my own self.
Since diagnosis have surgical menopause - no more uterus and ovaries. My SE from T are very minimal. My bc was highly E+. Just don't see much downside to my continuing this drug for 10 yrs. I can see though that if you did incur risks from continued treatment - be it T or an AI - and your bc was low risk, the BCI (once it's more validated) might provide additional info re a difficult decision. I feel lucky that my SE are minimal, and that, in a sense, I don't have other T risks to be concerned with - blood clots notwithstanding.0 -
I had sincerely hoped that by the time I came up to my 5 years on Arimidex that they would know more about the optimum duration for these drugs. Some hope!
I am due to finish Arimidex in 2 months time but I am unwilling to quit until there is some definitive data. I am due to have a bone density scan to see what state my bones are in now and if I am not crumbling too badly I really want to carry on - at least until there is some solid evidence to base a decision on.
I was 43 at dx and my family is still young - I have to do everything possible to stave off a recurrence. I shall keep watching this thread with interest.
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Jessica and Miso, I feel the same way.
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