Done with Rads starting Arimidex, Aromasin, or Femara.

17 months on letrozole for me. I take it at night with arthritis formula acetaminophen, and when I get up in the morning I take celecoxib. Mild startup shuffle pain which passes quickly. Moderate osteopenia before I started it, so I took a Zometa infusion—a nightmare, since it took 5 tries to find a good vein, and I spiked a fever for a day and felt flu-y for a week. 6 mos. later I got approved for Prolia—no problems at all. My biggest problems with AIs are the rise in LDL (I am now on a statin as of last week) and the metabolic slowdown that put about 10 lbs. on me (PCP says only 9, but it feels like more) and is making it very tough to lose any weight. Back to low-carb (the only diet that ever worked and was practical for me, and is now truly necessary as my a1c is creeping up and the statin will make it worse) and exercise—strength and balance training followed by cardio 3x/wk, with walking, swimming or Silver Sneakers in between.

I have been on Arimidex since 4/5/17. Surprisingly, no weight gain - it actually seems to be suppressing my appetite. No hot flashes, which I was fearing. A few minor pains, mainly wrists if spend all day on computer at work. Overall, it has been manageable. Already on statins, which are working well, so hope the next bloodwork shows cholesterol OK.

Goincrzy8 - Did not start AI until after rads completed. Guess if they told you to go off during rads, it must be ok. Maybe someone else has experience with this.

Healing thoughts to all and hugs to all who need one.

Hi all, finished rads on Monday. My MO let me start letrozole right before radiation. I take it at bedtime and so far no extreme SEs. Of course that means I'm blaming my tiredness in the rads. So I guess a couple of weeks will tell.

It feels odd to be told not to return for doc appts for three months!

I have been on Aromasin since the day after my last chemotherapy, November 8. I started and finished radiation back in January. Aromasin was okay to start, brutal after a couple of months (bad enough that I was ready to tell my MO that I wanted to go on Tamoxifen instead), and then everything kind of eased. I take my pill in the morning, after breakfast. I'm 36 so while my MO is not super concerned with my bones, he did suggest a density scan to see where we were starting from. I'm in the middle of switching hospitals and things for money reasons so am running a bit behind on my one-year mammogram, genetic testing, the bone density scan, and CT scans. (Anyone else having imaging after treatment? I know it's not standard practice so feeling unsure about this.) I had a bone scan and CT scan of my lungs and liver when I had my mastectomy in June, repeat CT in January (liver and lungs clear), and my MO is saying every six months for a couple of years.

bravepoint, - Only 3% ER+ - that's great! If those were my percentages, not sure I would take an AI. However, I am 100% ER+.

Hello all - joining your thread. I started taking Arimidex (Teva generic 1mg) on 3/27/17. My MO had me taking one pill every other day for a month, then I was supposed to move to every day - but I had my exchange surgery on 5/12, so I stopped AI on 5/3 before surgery and just started back up on 5/22. I am still taking it just every other day for the next two weeks and then will begin every day. So far so good. I also take it at night right before I go to bed and usually wake up once a night feeling very warm - but not a real hot flash. I have always slept well and AI has not impacted my sleep. I do find in the morning when I first get out of bed my legs feel heavy, but once I'm up and about it goes away. This also happens if I sit for more than an hour (office job) so I try to get up an move every 30 minutes. I drink tons of water - so lots of trips to the bathroom keeps me moving throughout the day. I do have a few warm spells thoughout the day (keep a fan at my desk). Before I began AI I had a bone scan which was normal. My vitamin D levels were low, so MO has me taking 2000 ICU Vitamin D once a day. I also take Krill Oil, Calcium, and a multivitamin - and since I have fine thin hair to begin with, I take a hair, nail, skin supplement.Trying to walk every day since I've read that exercise really, really helps with SEs. Thinking of adding magnesium - does any one take that and if so how much? Thanks for listening. Hoping this 5 years goes well and SEs don't get me or any of us

Bravepoint, yay! Just one more to go! I'm also 100% estrogen and I'm 90% progesterone. Yuck!

My Arimidex is also a generic brand by ZyGenerics. Only 4 days so far with no SEs. I fall asleep quickly and sleep like the dead until the sun wakes me up. My MO took me off all of my supplements as I didn't need anything to boost my levels. My last blood work came back perfect in every aspect. My MO didn't mention having a bone density test done the last time I saw him. I don't see him again for another 3 months. I'm 57 going on 80 so I'm curious if he'll recommend one at some point?

I can't add any personal experiences with any supplements as I've never taken any. They don't agree with me, they come back up as soon as they hit my stomach. It's a good thing I don't need them or I'd be in big trouble.

Have a great weekend everyone! Travel safe if your traveling.

KB870 - I pick up my script for Letrozole tomorrow but won't start til the SEs from rads are better. Are you having a bone density scan?

I am just the opposite. I started femara before I started rads because I wanted to get my five years over as quick as possible!

Butterfly1234, it is good for me to hear of others without SEs. I'm not as paranoid when I hear others are well.

Hey butterfly1234,

Just saw your post, saying you will be getting the Prolia shot since you have osteopenia. How did you get your insurance to approve it? My MO said they typically don't approve Prolia until you've at least tried a couple of cheaper medications like Boniva.

I did my DEXA scan last week, before starting Arimidex. I got the results back on Wednesday. Not only do I have osteopenia in my hip and femur, but I also have osteoporosis in the lumbar region of my spine. Even with that, the MO said insurance will only approve the once a month Boniva pill. I would much prefer the Prolia since they're finding that it also protects against bone metastases. With my DX(s), I need all the protection I can get!

Maybe I'll try my PCP. She's pretty assertive, and a great advocate for her patients. She might have better luck getting the Prolia approved.

Trish

PS: I'm supposed to start my Arimidex this week, but I've chickened out so far. Can't believe I've made it through three surgical biopsies, five months of very strong chemo and ten hours of surgery, but I'm afraid of a little white pill! Go figure.

Thanks butterfly1234! Really need the encouragement right now. The funny thing is, I got through all of that treatment without any whining or sniveling. I even had a collapsed lung in the hospital after my surgery, and didn't complain once.

But I'm reduced t a quivering, sniveling mass of jello at the thought of any of the antihormonals. I think it's because with the other treatments, you knew it was for a limited time. During chemo, I kept telling myself: I just have to make it through the next 20 weeks. With surgery it was making it through the first six weeks. With Arimidex, it's the next five to ten years. Very daunting.

Anyway, enough whining for now. Too much to do.

Trish

Thanks for your response, 6cats. I also have horrible reflux issues. I really don't think I'll be able to do the pills!

I'm going to try to work things through my primary care doctor. She's young, conscientious and willing to take the fight to the insurance company. I like that in a doctor.

Trish

Good to hear, you're not having any major side effects, WenchLori. I finally bucked up and took the damn pill about an hour ago. I just hope I'm as lucky with the SEs of this as I was with chemo. That is, not fun, but doable.

Trish

I am going to throw my 2 cents in here. I didnt get Chemo, long story. MO put me on Arimidex, the tiny pill is amazing. I have had no SE to speak of. I do know I had a lymph node in my neck that was large. I started that tiny pill in Feb within 2 weeks I felt the node shrinking. Today no one can feel it, not me, not the MO, not the RO. My TM before tx was 244 after less than 60 days they were down to 61. So I know everyone is scared, and the length of time is long but for me its working and I am so happy. When I started Radiation they said for me to stop taking it for the 7 weeks, I have been off one week and I keep checking my neck. Saw MO and he said in my case which is not normal , not to stop. I am so relieved to start taking that little pill again.