How long do we stay on arimedex for? live in Uk and they want to stop it!

Amanda · 02-04-2009, 03:57 PM

Please can anyone help?
Diagnosed in 2002 with Her 2 pos , grade 3 and 1 lymph node involved. Herceptin was not given then so surgery, chemo and Radio. Had my ovaries out as only 34 on arimedex ever since. My bones have stated declining, on alenedrenic acid. Was meant to be on arimedex for 5 years, begged my consultant and I am on it for an extra year! I have been hoarding it and have 7 extra boxes so might have a year extra when they stop it! What do I do? I want to stay on it. What will happen when I stop?? in England they do not give us anything. You ladys in the USA seem to be better looked after! What should I do ? so far so good .I am married and have 3 children 15, 13 and 9 and I want to be there when they get married! would love to hear from anyone in a similar situation. Many thanks love Amanda

sassy · 02-04-2009, 08:25 PM

Amanda,

My onc has said I may well be on Arimidex for life. We are making the rules as we go, since we are the first generation on AI's. I have Zometa infusions once a year for bones, which has been successful.

Is your doctor's decision a financial one, or based on current protocol?

Barbara2 · 02-04-2009, 08:51 PM

I was diagnosed the same year you were. My five years of Arimidex came up this past March.

I asked my onc what he thought we should do. He said he would suggest continuing because we need to continue to knock down the hormones. I am not thin, and excess weight also means excess hormones. I mentioned that aspect of the issue, and he agreed. He said there were studies now that were going 10 years with the Arimidex.

Good luck to you. I wish it wasn't so hard for you to get the drugs you feel you should have.

Lani · 02-04-2009, 09:48 PM

but all the data is not in so there don't seem to be formal recommendations yet.

Amanda · 02-05-2009, 02:31 AM

Thanks Ladies! I appreciate your comments which makes me think I should stay on arimedex longer! I have a check this month with my surgeon. I am going to ask to go back to the oncologist and see what they say. Here in the uk , you only see the surgeon and not the oncologist after 5 years. I think it does come down to cost! a packet cost the NHS £85! which lasts a month. Wonder why I cannot have Zometa? Its hard to think long term, I worry more about the cancer returning than osteporisis in old age. I read something on a web site about prognosis for breast cancer, a doctor said that most women will eventually succumb to their cancer! It makes you mad! Thanks again ladies! love Amanda

ElaineM · 02-05-2009, 06:17 AM

I don't think the 5 years is set in stone. Some people stay on it longer. Some stop it or change to another aromatase inhibitor like Femara before the 5 year mark.
Vegetables like broccoli, cauliflour, and cabbage can help keep the estrogen under control too. I hope you enjoy those veggies. There is a supplement called DIM that some believe can help to some extent, but it is not as strong as the aromatase inhibitors.

Lien · 02-05-2009, 07:23 AM

I'm in a similar situation, and here in the Netherlands 5 years is the norm. I talked to my surgeon about it in Sept. and he said the at the end of 2009 they expect to see the results from a trial looking at prolonged AI use. There seem to be preliminary results that show a benefit after 5 years. As you are so young, I think prolonged AI use could be beneficial.

About everybody eventually succumbing to cancer: I don't believe that for a moment. I know of several women who survived their cancers for over 20 or 30 years and died of other causes.

Why would a doctor say something like that? What good does it do? Does it make anyone feel better? Does it improve your QOL? Does it change your prognosis? Does it change your treatment choices?

Osteoporosis is a serious illness and can be lethal. Complications after a fracture can cause a chain reaction, which may lead to death. So do take it seriously. Having said that, I remember reading somewhere that many women who experience boneloss in the first two years of AI use, seem to stabilize after those two years. Indeed, my dexa scan showed no change last fall. I am not on any kind of bisphosphonate, as I have severe jaw problems already, and don't want to exacerbate them.

Now about deciding whether you should continue using an AI: perhaps you could ask your doctor to run your stats through Adjuvant, to see what your residual risk of recurrence after 5 years would be. There's a calculator for those who have been on Tamoxifen for 5 years, and s/he could use that. It's not perfect, but it could give both of you some idea of what your odds could be. If your risk is low, and your dexa scan shows significant boneloss, you may decide that the additional effect of prolonged AI use is not worth it.

I hope you find your answers soon. Let me know if I can be of help in your decision making process. I know it's scary to not do anything to keep the beast at bay!

Jacqueline

Hopeful · 02-05-2009, 07:42 AM

I discussed my AI side effects with my onc at my last visit in January. His take on the duration of treatment was a little different - he speculated on the "politics" involved. He said there was no hard and fast reason for five years of tx at baseline, that probably that number was arrived at due to lobbying by the pharmaceutical industry, which, he speculated, is now probably hitting itself in the head, saying, "we should have gone for ten years!" He says there is no magic to the number, just as there is no "magic" to the standard dose pills they give everyone - it is all a compromise they arrived at that is a generic solution. He also told me that these drugs are not without significant toxcity, and that those toxcities need to be weighed agains the benefit of remaining on treatment. I think he has a pretty balanced outlook on things. Just thought you would benefit from his viewpoint.

Hopeful

tricia keegan · 02-05-2009, 08:19 AM

Amanda, a lot of my friends who live in the States have agreed with their onc to remain on arimidex for ten years! I live in Ireland and have'nt spoken to mine about it just yet but as it seems to be working so far I'm hoping I can stay on it longer. I did have some slight bone loss the first year but my latest dexa scan showed improvement in that. I have walked regularly this year so not sure if thats whats giving me the improvement.

Laurel · 02-05-2009, 08:43 AM

Ladies, this is why we do not want universal heath care, socialized medicine, think socialism, in this country. As Amanda noted, we are better cared for, "looked after", in this country!

Amanda, do not forget DIM and Calcium D-Glucarate, supplements that bind estrogen quite effectively. I take these in conjunction with my Tamoxifen, especially since they have been shown to have a protective effect on the uterus and the incidence of endometrial cancer associated with Tamoxifen use. Google DIM for information. I order mine from Swanson Vitamins: www.SwansonVitamins.com.

I wish you all the best in your quest!

Hopeful · 02-05-2009, 08:56 AM

Tricia,

FWIW, I had osteopenia before I began the AI. My onc has me taking 400 mg vitamin D daily, and I started back walking on my treadmill 3 to 4 times a week on average. My latest DEXA showed improvement of bone density in the spine and a slowing of loss in the hip. I believe the walking has a lot to do with it.

Hopeful

tricia keegan · 02-05-2009, 12:04 PM

Thanks Hopeful, I think so too and maybe more women should be encouraged by their Dr's to make the time to do more. I also take calcium and vit d (when I remember) and although I took fosamax for a short while I stopped it due to nausea and tummy issue's.
I'm fortunate I live next to a beach so walking really does'nt seem like a chore

laurel, while I would'nt find fault with your healthcare of those of any country I beg to differ with your assumption. Healthcare can differ a lot from country to country within Europe and speaking for myself I'm told by my american friends I had the "gold standard" of care as they know it. The difference being I did'nt pay a penny for mine and still don't to this day. We've had discussions before on this here so I've no wish to bring up another but I felt you should know that some universal healthcare works extremely well.
I gave up my job when dx and hubby lost his business shortly after, I shudder to think what I'd have done if I lived anywhere else and had to pay insurance/health costs.

TSund · 02-05-2009, 03:52 PM

Ruth is also on DIM

http://74.125.113.132/search?q=cache...lnk&cd=2&gl=us

CLTann · 02-05-2009, 08:06 PM

I live in USA. My onc and I discussed the AI use after five years, which will not come up for 18 months yet. Anyway, unless there is new data, his position is to stop AI after five years. He felt the negative side effects and the small positive in AI efficacy do not have sufficient tilt in favor of AI use after 5 years. I am inclined to agree with him.

Lien · 02-06-2009, 12:40 AM

Hi Laurel,

I think your view of European healthcare is not entirely correct. Which is understandable, because American media don't really cover what's going on here. There are big differences between countries, and I believe there is no true Socialist country left here.
Most countries are trying to find a compromise between Socialism and Capitalism, to improve quality of life and to protect the weak and the sick.

I live in the Netherlands, where we have a good healthcare system with affordable insurance that's obligatory for all. We can choose our insurance company and our program, but we have to get coverage for the basics.

I have not paid one cent for all my regular therapies, and although my Zoladex & Arimidex tx were not the standard of care at the time when I was diagnosed, my insurance pays for it. My onc said it was up to me whether I wanted to do hormonal tx, but he signed the papers so I would get coverage. I also get most of my CAM therapies reimbursed by my insurance. I pay a couple of extra Euro's for coverage.

In my country it would be unthinkable that someone would be refused chemo until they payed their bills. I know of someone who had to sell her car to get treatment, in the US. I know of several people who got into deep financial trouble because their plans didn't cover all treatments.

There are advantages and disadvantages to both systems I think. Just like there are differences between breastcancer patients. Europe isn't one country with one government.

Just my two cents.

Love

Jacqueline

Amanda · 02-28-2009, 03:06 PM

Hi everyone thanks for your advice! Had a check up on thursday and my consultant said that new research is showing that staying on arimedex or something similar would be a good idea! He wants me to see the oncologist so I am very happy! I know Arimedex has some horrid side effects. I have Bad anger moods, dryness, joint pain, hair thinning but hey we would put up with anything! I am only 40 and have been experiencing the bloody menapause now for nearly 7 years!! I had my ovaries out at the age of 34! but I am alive. Love |Amanda

Lien · 02-28-2009, 04:01 PM

Well, ain't it good to be alive?! I went through menopause at age 45 and all my friends are going through it now. So we commiserate and share hot flashes.

I'm not sure that my bad moods weren't in part caused by my anger about having cancer. Heck, I'd already been in a carcrash and had been diagnosed with chronic fatigue syndrome. Wasn't that enough???? Or perhaps they were caused by having teenage sons, a husband who works too much, a father who had a heart attack...

In other words; some of the symptoms would have shown up anyway. Just at a different time in my life and perhaps not all at the same time. When it rains it pours!

But I AM alive! I am here to see my kids grow up. And that's the most important thing in the world to me.

Love

Jacqueline

Debbie L. · 02-28-2009, 10:05 PM

Hi, I am curious about this "DIM", which I had never heard of until I read this thread. I can find lots of sites that say "studies have shown benefit" bbb (blah, blah, blah). But worrisomely, I cannot find the studies. Not one single RCT on humans that notes decrease in incidence or recurrence of breast cancer.

Can those of you who are using DIM cite this evidence and provide links? I am especially wary of substances that claim to have hormonal effects. If they are not fully studied, how do we know with confidence that the hormonal effects are not the opposite of what is best? We don't even KNOW what is best, yet - and that's for treatments in wide use that have been scrupulously studied. Tinkering in any way with hormones and ER+ breast cancer makes me nervous, when we're lacking evidence to support the tinkering.

Debbie L., ever the skeptic - but at least I'm an equal-opportunity-skeptic. I question both allopathic and alternative therapies, when I don't see clear evidence.

Lien · 03-01-2009, 01:04 AM

I seem to remember that Johns Hopkins once prescribed broccoli sprouts to cancer patients. So they must have some evidence that it works. I'm wary of isolating one substance, though, because I think that in most cases it's the combination of several substances that is beneficial.

Ofcourse, I can't find any research on this. But it's early Sunday morning here, and the cats woke me up several times, so I'm still groggy.

Jacqueline

Becky · 03-01-2009, 09:50 AM

I will join this conversation. I have less than 18 months to hit my 5 yrs on Arimidex (I was on Tamoxifen first but had my ovaries removed to make the switch). I had this conversation with my onc a yr ago and he said he would be keeping me on for 10 yrs. At the time, I was happy about that and I am sure I will stay on. But, I take Zometa every 6 months for the bones (got a DEXA when I had the ooph and I was mildly osteopenic). The Zometa has kept this stable (has not gotten worse). Many of you know that I am an avid runner and walker. I just started to do some hand weight exercises and floor work. I take calcium and about 3000 iu of Vitamin D (April - Oct). In the summer, I take about 1300iu of D as that is what is in the calcium supplements and multi - I don't take extra then because I am outdoors everyday (walking 1.5 - 2 miles during my lunch break and then running after work). Weekends I am outdoors during that time of yr.

I want to get the AI protection longer but I am also torn about bone health and health of other things that we don't know about yet. What else is being affected that we don't know about - for example, even with a dab of Premarin cream, I still get occassional bladder infections (they were bad before that) and still have vaginal issues. I was not highly ER+ either and I am PR negative. However, I had a separate dcis that was 50% ER and 30% PR so I am sure staying on the AI would help prevent new cancers.

Another thing to consider is: after the five years on Arimidex (or whatever AI you are on), should you do the second 5 yrs with a different AI (such as Femara or Aromosin). I did mention this to my onc during that conversation last yr and he commented BOTH ways saying that switching could circumvent drug resistance BUT I wasn't having horrifying side effects from Arimidex (no joint or muscle issues and most women do get vaginal issues (even those that are purely menopausal and not on an AI)).

So, there are a lot of things to consider especially since there are no trial results to take into consideration on the decision. I suppose you go with it and if there are results that are iffy, you can stop at 7 or 8 yrs and not do the whole 10. The problem is what is it doing to you 20 yrs from now. The same could be said for taking adjuvant Herceptin - what will it do to you 25 yrs from now - no results or data on that yet!

But as Jacqueline and others have said, "We're alive and will see our children grow up" and that speaks volumes. I want to see grandchildren and see them grow up too!

Have a great Sunday. Here in NJ, it looks like we might get tomorrow off too as we are supposed to get 15 inches of snow starting at dinner time. Its exciting especially when you are at home already when it happens!