Move beyond cancer or Arimidex for another 5 years?

cs34

I put this under "moving beyond breast cancer" forum because that's exactly what I want to do! 

I did my time. I did my surgeries. I have no breasts. I have no ovaries. I did chemo. I did radiation. I am a scarred up war zone on my upper torso.

And I did FIVE LONG damn years on Tamoxifen. 

This is the third day on Arimidex and I am not feeling well. I took off almost six weeks between the two medicines. I felt PHENOMENAL off the Tamoxifen. 

Do I "move beyond cancer" and not take the Arimidex and have a good quality of life or do I suffer through another five years? 

I'm tired of being strong. I'm tired of rising above. I'm tired of not complaining how badly I feel and that nobody around me GETS how freaking hard it was some days to get out of bed and commute into Manhattan when every muscle in my legs ached. When I would trip in the Manhattan streets because my legs felt so badly that I couldn't "lift" them off the ground high enough and pray that I didn't fall. The list is endless for how badly I felt on Tamoxifen. 

I want to feel good. Didn't I do enough to combat a reoccurrence?  

Would I be able to handle it if I did have a reoccurrence and didn't do another five years? 

turtle42

This is such a personal decision. I feel for you! One thing you might want to consider is you could take the Arimidex for a period of time and if things don't get better you could stop the meds. Don't look at it as a five year commitment. Take it one day at a time. Hope this helps.

SpecialK

cs34 - I would give this some time - a few weeks, as some have initial SE from AI drugs that dissipate.  You may also try a different manufacturer of Arimidex, or another AI.  I started on Femara by Mylan, had the usual joint aching, which I expected and figured was normal, and in six months developed a trigger thumb on my dominant hand - couldn't even hold a pen.  Switched to Arimidex (don't remember the brand) and continued with joint pain, eventually developed multiple triggers after a year and knee pain severe enough for a cortisone injection.  Ugh!Switched back to Femara by Teva, but also cut out some foods due to sensitivity and potential for inflammation, and I feel very good, no joint pain.  You are faced with a hard decision - endure the SE, or take a potential risk, with no clear cut guidance on how great the risk is.  Sorry you are facing this after all of the other treatment you have gotten through!

OneBadBoob

Have you spoken to your onc about maybe Evista?

cs34

thank you all for your replies. 

Onebadboob, what is Evista? 

I go to my Onc on Friday with my mother, sister and best friend. I am going to write down all that I have felt since starting the arimidex and discuss it all with them and my dr.

Have any of you ladies heard about this thing (formula) that your doctor can plug in all your "stats" of treatment, type of cancer, etc and be able to tell you what your possible reoccurrence may be? 

My sister just mentioned something about it and I never heard of it so I'm not sure if I should call him to have this info for Friday when we have the appointment. 

Jazzygirl

CS34- I had the OncotypeDx genetics test done that will give you a percentage of the likelihood of reoccurrence based on a genetic analysis of your tumor. The numbers provided give you a % reoccurrence and/or helps with treatment decisions with chemo and AIs. I had this test in 2012 and my results were 23, in a sort of grey zone with respect to chemo. Oncs did not feel there was enough to warrant taking AIs. 

I was told my reoccurrence was 15% based on that test, they suggested taking the AIs to reduce it in half so now my reoccurrence rate should be more like 7.5% I think the doctors know based on a lot of criteria whether you might be at higher risk vs. less. But not heard about any tests that really give you the firm % beyond the one mentioned above.

You are a long way down the pike from surgery and the tissues that would have needed to be tested to give you this score. Oncotype tests the tumor, other genetics tests usually use blood. You may have already had your apt but you need to get a sense of what your risk really is. Continue the conversation with your MO to know what your risks are so you can make an educated decision if you feel you need to stop the AIs.

I have been on anastrozole (generic Arimidex) for a year and two months and it is no picnic. I will say it was really bad the first six months, I took a month off, and went back and it is better now. I still have joint stiffness and my feet hurt a lot of the time but I can function, go to work, take care of my home, etc. I understand your pain though, it was so bad in the beginning for me too.

genuineme1968

I so agree with you and had partial mastectomy and total hysterectomy and finished my 5 years of tamoxifen and have been on femera now for about 3 years and am miserable and agree with you.  I have aches and pains everywhere and have gain almost 30 pounds and not matter what I do I take a couple off and seems like in a couple days it's right back on.  I am ready to put a stop to it and see if there is an alternative to the femara I am tired of feeling this way.

DiveCat

cs34...

This site (http://www.lifemath.net/cancer/breastcancer/therapy/index.php) lets you input your info & treatments to get mortality rates and therapy benefits (recurrence risks).  You could try doing the calculator with just the Tamoxifen, then the Tamoxin + AI. Of course, DEFINITELY discuss with your oncologist and find out if he concurs with those results, and so on, but until you see him you might be able to at least start some research. 

It is a very personal decision, but I do think you might want to see if the side effects dissipate with more time, or if you can try a different AI as well. 

DiveCat

Sorry for the delete, I posted on the wrong thread!

footprintsangel

I will be on arimidex for ten year, this is my sixth year.  It doesn't help my

 arithritis , bones hurt more. I am glad in a way cause I have a new tumor were

they left some skin. I have had other cancer and will be afraid when I go

off them.

Cowgirl13

Initially, I had really bad side effects on Arimidex.  I stuck with it for a few months and the SEs cleared up.  I will definitely do another 5 years because I don't have side effects.  One thing  I did when the SEs were bad was to give up all sugar and thend it was ok.  Good luck with you decision.