Quitting AI's & reprocussions

Vavoom10

Hello everyone:

I am currently taking Arimadex.  It gives me much body pain and aches all over and I'm getting really tired of feeling this way.  However, I come to this forum to ask if anyone here has ever done this and if so, has anyone suffered a reocurrance as a result?

Your replies are much appreciated.

jude14

Hi Vavoom....I too suffer everyday with joint and body pain from these pills.  Will be on them 2 years the first of Dec.  Everyday I say I am quitting them and each day I take it another day.  I am going to take 30 days off them come December and rest for a month.  I have no idea what to tell you and maybe someone who has stopped them will come along.  I know alot of women do not take them and go with natural alternatives.  I wish you luck and my prayers are with you and all the women on here....jude14 Let me know what you decide

kathimdgd

Your dr may be able to switch you to something else.I was put on Aromasin first and couldn't tolerate it,so he switched me to Femara,which i'm tolerating much better.

Kathi

Mellaluka

Hi Vavoom, my mum stopped Arrimedix and she had a reoccurance after 5 years BUT she has only a very weak positive to hormones, almost non existant the onc said at the time if she could tolerate it no harm in taking it, but if it gave her side effects to stop as it was highly likely not doing anything anyhow. She is HER2+ and has no regrets stopping it. I think if you can take something else similar thats a good idea too

flash

Try switching to one of the other AI's.  Eventhough they do essentially the same thing, they are slightly different for different people.  I found I could do Aromasin better than Arimidex.  My friend found she did Arimidex  better than Aromasin.  Go figure.....

The bigger question: If you go off the AI's would you enjoy life more knowing there was a statistically higher chance of recurrence.  If it wouldn't bother you than you have your answer; If it would bother you, you're better to stay on them. 

 Good luck.

Vavoom10

Thanks everyone for your imput.  I will ask my Onc to put me on something different first and try that.

Jude14:  I hear ya, I feel your pain.  I think the same thing everyday too and still take them!  As a matter of fact, as I swallowed one this morning I said to my husband "I'm taking my pain pill" now.  hee hee.   At my next check up, I will ask my Onc to let me try another AI and see what happens. 

Flash:  yes I do think about what ifs.  But, also, we are only suppose to take this for five years...what then?  I'm very worried about bone loss and high cholesteral with this drug. 

 Mellaluka:  how long was your mum taking them before she quit?  How is she now with the reocurrance?  Is she getting treatment?

Thanks all for your input.  God Bless and keep you all!

I'll keep checking back to see if anyone else replies.

jude14

Hi again Vavoom...I have tried all three of the AI's, started on arimidex went to femara then to aromasin then back to femara and I think the femara has been the best so far and it is horrible.  You can try another and maybe have better luck.  My cousin went to tamoxifen and is having better luck with that one....Good Luckk

Mouser

Hi --

There's always a trade-off...with the AIs, it's usually between side effects and a higher chance of recurrence ...

If your side effects are bad (and if you have an onc who will discuss things - not always true!) ask what your odds of recurrence are with and without the AI. Then *you* make the decision. Your life, your risk - so it's your choice.

I'm not just nattering; i'm in the same boat as you. Two yrs ago, my onc said my 20 year risks of recurrence are 17% without, 9% with, an AI. (That's by extrapolation, since they don't have 20 yrs of data on the AIs yet. I forget how he calculated it; doesn't matter since your numbers will probably be different.) Some oncs would say that this is almost "a 50% risk reduction", and that's true. But it's equally true to say that the AI reduces my risk by 8%: from 17% to 9%. From about 1 in 6 to about 1 in 11. Doesn't sound as dramatic, but still significant. Lot less scary.

So we agreed that i would try Femara, but if the side effects were bad, i would go off it. Now I'm debating doing just that, because this summer i realized that i've got chemo brain without having had chemo, and i think it's the Femara (i'm only 66 and shouldn't go gaga this soon!) I also have some aches-and-pains and am getting trigger finger ... but those i could put up with, at least at the level at which i have them now. The mental fog is another story....

Basically i need to decide if it's worth the decreased risk to go through life only half awake ... i think what i'll do is take a 2 month holiday and see if that helps my brain. If so ... i really don't know what i'll decide. (Of course, if it doesn't help, i'll go back on. And i'll be stuck with the fog in my brain...)

Candyce

Ihave been on Arimidex 5 years.  The first year I could hardly walk and honestly I have no bone aches at present.  I am glad I stuck with it as I have the BRCA2 gene mutation and have increased risk of recurrance.  Ihave had five wonderful years that may have been cut short.

cubsfan

I have been on Femara since March.  I had horrible joint pain especially in my back and hip.  It had been so concerning that I was sure it was the "disease" and not the femara.  I had an appointment with the onc in 2 weeks so I decided to take myself off of the femara until I saw her.  By the second week my joint pains had all but disappeared and had energy that i had not had in a year!!!!  I felt like my old self again.  I was happy that it was not the cancer but the femara.  I did mention to my oncologisgt what I did and she said this was OK and it is what she would have suggested.  She also informed me that sometimes when you begin them again it seems like you body just readjusts and some women do not get those pains again.  I have been fortunate.  I have since restarted and have not had any of these pains again and hope my body did indeed reset itself.   Whatever the case I Hope to be taking them still 4 years from now.  Good luck ladies.

 Nancy

Vavoom10

Hello everyone!

thanks again for your replies.  I am currently 53 years old ladies, will be 54 in February 2010.  Feeling as achy as I do I wonder what five more years of this will bring me.  How will I be in my 60's?  Ay karumba!#$%&

Jude, so changing to Femara didn't do much for you?

Mouser, I know...tradeoffs.  I really hate being in this position.  I was thinking just the same thing...about asking my Onc what my odds are at my next check up 10-15.  I will do just that, and also ask him about a game plan should I have a reocurrance someday.

Candyce:  So, you're done with it then?  no bone aches for you!  hooray!  Yes, that gene would make my decision for me too if I had it.  Best wishes for a joyful and free long long life!

Cubsfan:  I've had a little voice in my head that says that too...I've been getting such aches and pains in different spots, sometimes in the same spot on and off, like the kidney area or spine and now the bones in my lower legs recently.  I have a couple of pills left before my refill and I was thinking the same thing...stop them for a bit and see if it goes away.  It's good to know that I could have the same reaction as you once I begin them again!  that gives me a little hope!

I see my Onc on October 15.  I will definitely discuss all options with him.  I'll let you all know what happens.

Thanks again ladies!