Arimidex - Coping with the SE's

HI Trisha-Anne,

I am glad (given the context) that your biggest problem seems to be trigger finger. I am sure that it is painful and hope that it clears up soon! I tried accupuncture for my neck and it did help so you might give it a try to see if it helps. If you are 4 months in (sorry I misread it originally) , then we are on a similar time line, so I look forward to sharing this part of the journey with you.

Sunflowers, I am at the Beth Israel Deaconess (another major cancer center) so I suspect that many of the oncs know each other and follow similar research. I feel sure that you must be getting the best care at Dana Farber. I went to their website a lot during chemo for information on nutrition and supplements - it was very useful.

My onc surmises that the AI fight cancer recurrence well but weaken the bones and possibly the heart,etc; whereas tamoxifen has postive effects on bones and possibly heart. Hence, if that supposition is right, the fact that "overall survivial" for a combination of AI and tamoxifen over 5 years proved best in some studies could be a sign that for those of us who has certain cancer characteristics (like negative nodes at initial diagnosis, etc) , a combo regimen is the way to go. On my bad days, I take heart that this is where I am headed - 6 months out of 3 years means that I am 1/6th of the way there. Obviously, this is all a moving target as new research may change the standard of care.  Furthermore, I echo what folks say about "being scared" to go off it - it feels like a sately net. I don't know how I will feel when the time comes to stop, I just hope that I get to that point without any unpleasant surprises, etc. 

Otter, I just want to take this opportunity to say that I learned so much from your posts on the "Just Cytoxin/Taxotere" thread. I was really worried about going through chemo and read through the entire thread ( a bit crazy I know, but it was my coping mechamism to learn as much as possible about this disease!). You are always so detailed and thorough in your research - it is really great that you take the time to share what you know with the rest of us. I wondered if you had any perspective on whether you are going to stay on the AI only for 5 years or consider some sort of combination of AI  and tamoxifen. I would definitely value your point of view.

I wish you all a s/e free day! Best, Beau 

Just want to chime in here about the SE's - I have been on Arimidex for a little over a year and I have to say that some of my SE's have went away! I sure hope this continues. Up until about a month ago my hips really hurt - especially when I was sleeping and getting off a chair. It was so bad that it would wake me up at night. The weather here has really been hot so not sure if that has something to do with it or not but I'm not complaining! Or maybe it is from the amount of time that has passed on this drug.

At my last onc visit I asked for a different medication and he gave me a prescription for Aromasin. I did get it filled but have not started taking it yet. I was waiting until August to start. I'm wondering if I should just continue with my Arimidex seeing that I am feeling better or start the new one. Any thoughts?

don23 - I have just recently started experiencing hip pain again at night.  I can't sleep on either side so falling asleep is very difficult for me and I have started taking a pain med at night so that I could sleep.  I have been on Arimidex since March 1st.  Why is it taking this long to have this SE?

I am really physically active which makes me wonder how I would feel if I never did anything.

jancie

when sleeping becomes difficult for me, I try to start out sleeping on my back, with a GOOD pillow under the back of my knees to keep them slightly elevated.  If you're near a medical supply store, you'll see all the selection of illows for this purpose, they have.   THEN, I went to an Army Surplus store, borrowed a friends electric carving knife, and outside the house, cut a pillow for myself.  Covered with a pillow case - in a few nights, hips were fine.

ETA:  It's the MAGIC 3 month phase.  Honest, there's gonna be a study, I'll bet, in a few years about the different "phases" our bodies go thru on The A Team.  Betcha' really, and the 3 month point is when the sh-t really kicks in for so any of us.  THIS TOO SHALL PASS.  Really keep up doing all the good things listed on these threads - it will go away!

once again, this forum saves my sanity! i swear, i thought i had bone cancer, i've had so much achey pains these past few months. especially in my hands and feet. i thought maybe it was my generic statin, so i stopped that. now i realize, it's probably the anastrozole that my onc switched me to, after 2 yrs on tamoxifen. i stopped taking it 2 days ago and i'll discuss with my breast surgeon next week at my checkup, but all signs point to going back on tamoxifen for me. this is nuts!

anyone who's stopped A, how long does it take for the pain to diminish?

so loading up on D3!

It is good to repeat ourselves for new people who come on board and might not want to wade through 93 pages (wow!) of information. My thing that I keep repeating is MOVE, get some exercise. It will really help with the creakiness. And, also, give your body time to adjust. It has been through a lot. Some SE you may be atributing to Als, are really cumulative SEs from all your treatments mixed together.

Jo,

You should probably say "se's are easier treated than breast cancer for most people"

I fell into the category of the 27% of women whose se's (mainly palpitations from the AI's) could be life threatening.

Amen to the exercise, Ruthbru. I took your advice about that and know it is helping too. Plus I've lost 15 lbs!

Beau I was born at the Beth Israel. Not deaconess back then. Don't remember a thing.

JO you are so right about the D levels. My onc wanted to be sure my were up before I started Anastrozole because they were low prior to my diagnosis. I had been taking extra D and was tested before but she wanted to make sure. She mentioned that most women who get bad bone/joint pain (don't remember which) because they are low on D. One thing I do notice about my onc is she is all about reducing SE if possible.

My NP told me the most common SE from Anastrozole was small joint stiffness (fingers & toes) that will go away once you start moving again. I take mine in the morning. 

Ruthbru it would be nice if I lose the stiffness in my legs in a year. It's not terrible but I wouldn't be upset if I dont' have to deal with it in the future. I hope that's the case… or when I stop Herceptin (3 more tx) maybe that will help.

I never stopped moving, so can't comment on the small joints problem.  However, I do feel fab after today's 30+ mile training ride.  Was slow at the outset, as hadn't cycled since Sunday, and have a very sore ankle (from wiping out cycling a month ago!).  Was just fine once I got my groove back.

Lago.....am sure you will be just fine.  Tough road, but you are nearly there.

Shelley.....congrats on losing 15 pounds.  Way to go!!!!

Sitting here, I am noticing I am once again "sore of butt".  Wasn't this morning.  Somehow doubt this was the Arimidex. - Claire

Claire- if I rode 30 miles I would be sore of butt, too! I get sore riding 3 miles (the longest so far). I'm not an athlete so it is taking me a long time to get my endurance up. Plus we have hills that kill me! Maybe I need a different seat?

I do have stiff hands every morning and can't hold a coffee cup for about half an hour when I first get up. It wears off though.

Thanks for mentioning the tingling in your feet and hands.  It has been driving me crazy.  Especially when I'm sitting or driving in the car.   Dr. just said it's one of the SE.....yeah right, easy for them to say.

you're right, i didn't have the patience to read 93 pgs! my bad!

many thanks to the repeaters ... i'll take under consideration.

since tamoxifen was fine for me (except for the hot flashes, of course), i'm thinking my docs will be ok with me just going back on - although i fear the uterine cancer risk. then again, i really don't want to risk permanent osteoarthritis and/or fibromyalgia. i already have arthritis and back pain. i realize movement is key to preventing pain and atrophy. i'm trying to get back into daily instead of once-a-week yoga, and i know i need to start walking again. but i have a hard time working thru the pain. (which is comical, considering how much surgery i've been thru!)  but the way i feel right now, i don't need a questionable (for me) drug making it worse. i'm already on an anti-depressant: sertraline (generic zoloft). i was weaning off, after 4 yrs, but now i'm rethinking that.

as with so many cancer treatments, we have to measure the risks vs. the benefits. i gave up a healthy breast and underwent (probably unnecessary) radiation as strictly preventative measures. hormone therapy has been a no-brainer up until this switch. but now i'm back to the risk/benefit thing again. damned if you do, damned if you don't. *heavy sigh*

Thanks,Jo, I am better, I took it in the evening.  I tolerated it better, I think I will be fine on it.  Seems like with all the vitamins, multi and D and flaxseed oil, and levithyroid, so many pills.  I am spreading them out during the day.  I noticed that you have grade 3 also, can you tell me anything about that.  My doc never mentioned it, I have had to read my own path report.  What does 90% ER+ mean?

Lisa810 - I am also on zoloft and it has really helped my mood swings but not the hot flashes.  I had to get off of Zoloft when I started on Tamoxifen as those two drugs interact with one another.  I was glad to get on Arimidex and start the zoloft again.  I had tried other anti-depressants and nothing worked except for Zoloft.

I am still having muscle pain on the outside of my thigh - this is frustrating me as I had finally gotten past the pain of my fractures to my humorus (sp?) bone.  I am back on pain meds at night so that I can get to sleep as it just hurts too much to lay down.