Had it with arimidex

Totally understand! This is so difficult. I am hoping when my 5 years are up there will be some guidelines, thanks to pioneers like you. Thank you!

pam 

Thank you, Jo!  I AI's are better than cancer.  I have been taking it for 1 month and 5 years seems like an eternity to me.  I also know they don't know as much about AI's as Tamoxifen and feel a bit like a guinea pig.

I would also like to know if there is ANYONE who has NOT gained weight with Armidex?  Anyone??

Thanks guys

Figgy 

I have lost 23 pounds.  I take Arimidex, Effexsor, Xanax, Percecet, and monthly infusions of Aredia.  Of course, I am stage iv and don't have much choice in the matter if I want to keep on going.  I changed my diet a bit and drink more water. 

Although it is a personal choice to decide whether or not to do the hormonals - I was 10 years NED and until it came back.  If I hadn't done the hormonals after the initial dx - I often wonder if I would be here to tell you that? 

Its a crap shoot - I had a great 10 years, managed the se's quite well - these next 10 (unlikely but hopefully and maybe more) are likely not to be so pleasant but at least I am still here, still fighting and QOL is not bad.  And thinning of the hair on Arimidex?  Mine is getting thicker - I didn't lose it all with chemo 10 years ago but boy did it thin and never really came back in properly.  Effexsor fixed the night sweats, xanax took care of the anxiety and since its bone mets - the percecet takes care of most of the pain although the joints still ache a bit. 

I won't say take the damn pill - but do something to help prevent a recurrence so that we don't have to get to know you over on the stage iv forum.  The folks there are just wonderful - but the reason we are there sucks the biggest weinie ever!

Hugs to All

Low Rider

Sorry LowRider, but I didn't find your post encouraging.

Hi Figgy 652,

My side effects with arimidex began 4 months after starting. I put up with them for another 2 months and then called the doc. as I was totally couch-ridden. He told me to stop and mentioned that 30% of women have the same problem and he gave me one month off and I will begin another pill. Not sure which one yet. My friend has been on arimidex for 3 years and only has mild aches and pains, so I guess she is in the 70% group. Hope you will be in her group. Cheers.

I haven't gained weight, actually dropped a couple extra pounds, been on since August 2007. I watch the calories and exercise like crazy.

Has anyone heard any news on how Amy Michelson is doing. I don't see anything in the papers anymore. She is early stage from what I remember reading. She must have begun her 5 year pill by now.

I just have to chime in here.  I have been watching this thread for some time now but have never posted anything.  I am not on Arimidex, but I do take Aromasin.  For some reason there is not too much info on the Aromasin threads, that why I like this one.  I figure a lot of the SE's are the same for all the Al's.  My onco put me on an anti-inflammatory med called diclofenac and it has helped tremendously with the painful joints.  I still take plenty of supplements and exercise every day and I think all of this combined has helped me. Please press your docs for some help, it is out there.  I had a terrible time with joint pain and now I can see me staying on Aromasin for the full five years.  I have been on it for just over one year.  I know the importance of staying on it and hope I continue to feel this way three or four years from now.  Good luck to everyone, it is a struggle!

Hugs, Kathy

Thanks Kathy, I will check out the diclofenac.

Jo-5...I will be 6 years out Septemer 1st.

Just wanted to say thank you for your encouraging words and wish you the best of health ALWAYS

Thanks Kathy...a friend of mine who has had chronic back pain for over 20 years since a work injury indicated that the antinflamatories work for his pain (not the back specifically but the muscles supporting the back) better than the pain meds.  I imagine joints would be similar - I am going to ask about it my next visit.  I always have to ask with so many meds to make sure nothing conflicts or decreases the effectiveness of the treatments.  Oh, and it will quite the addition to the top of my fridge!

I've just about completing my two weeks off arimidex for the joint pain. I can now open and close my hands with more ease.  Hoping for the best.

Sas-schatzi -- you are not alone.  Even the stats talk about 30% of women experience severe pain and 50% stop to take AI 3 years out.  I understand it perfectly and did just that ... actually 3.5 years.  

However, I usually stay away from this topic because I don't want to influence anyone's decision about treatment.  The stakes are high and no one can make these decisions for us....they are ours alone to make.  One size does not fit all.  Unfortunately, this is the best that medicine and science can do for us at this point even though there is hopeful science coming.  We need to hold onto each other's coat tail when we fight our way through these treatments.

 My comment is not made lightly or without much effort to educate myself on the alternatives.  Quality of life matters.  I'm 61.5 years old.  This is a factor.  I'm retired.  This is a factor.  And it doesn't mean that I stop to go to my checkups or stop to have whatever diagnostic tool helps to see problems early.  And it doesn't mean that I will never take medicine or chemo again.

My decision simply means that for today I am NED (x 2).  It means that I no longer need to walk with a cane, or take NSAIDs that strain my liver, or consider carpel tunnel surgery because my hands stop to work, or take anti depressives.  The only med I take now is Levotiroxina sodica for hypo thyroid (at a decreased dosage now) and tylenol for arthritis pain.  Each of these diseases are immune deficiency diseases as is cancer.  I have family history of all.  

My decision also means that I pay attention to what I feed my body and exercise.  

I especially empathize with your frustration of people who mean well but have no idea how much pain the medication causes us 30%ers.  NO IDEA.  Thus they offer remedy that might or might not help.  For instance, I learned through this hunt for relief and from women here on the boards that certain vitamin deficiency create pain in the body.  You've probably read about vitamin D3, calcium and magnesium.  I can vouch for this remedy because it did relieve some pain. There is scientific speculation that these vitamins may do more than just relieve the pain but stave off the cancer.  Makes sense too that a vitamin deficiency would create pain in the body...a quart low of oil in a car grinds the engine to a halt. I continue to take both.  They helped to keep me on the AI for 3.5 years.  But when the day came for me to resume my dosage after this third mini vacation from it....I said "No more".  That was April 2009.

I worry every day after that decision.  My yearly check up recently--so far NED.  The fact that we had a diagnosis of cancer I think means that we'll be concerned every day of the recurrence of cancer.  That's natural and is part of the decision when I stopped the medication.  That tug of war endures.  

If you know nothing else, know this:  that you touch our hearts with your agony and you are never alone....or crazy for speaking up about your pain.  It is real.  Many of us know it.  I'm happy for those who do not.

"Never run faster than your guardian angel can fly"

Marilyn   

I guess that I am thinking on the same line as Jo. People posting here have had great difficulty with Arimidex, but I would hate to have a newcomer think that such severe SE are the norm, and  be to scared give it a try with an open mind, as Al's are an estrogen positive women's most effective weapon against reoccurence.

JO-5...Yes, I have decided to stop. I need to feel comfortable that I will still be followed up by my medical and surgical oncologists. Could be my imagination...but it seems like I feel better????