For Arimidex (Anastrozole) users, new, past, and ongoing

PontiacPeggy

Rosie, sometimes it seems that everything we take is bad for us one way or another. My philosophy on all these drugs are what matters right now? For me, it's the Arimidex and Prilosec. I'm taking Fosamax to help the bones. I guess I can't worry about other theoretical possibilities. My BC is real and I don't want it back. So is my GERD. Gotta do the Fosamax. Vitamin D - oh yeah. I'll spin the wheel on everything else. Maybe it's burying my head in the sand but I can only worry about so much. Obviously this philosophy isn't going to work for everyone (or anyone) but it is mine

HUGS!

Redheaded1

Sherry My onc just told me yesterday to take a two week break to see if my breast pain and leg cramps go away. I really quizzed him as I had a 30 day break in December-Jan. He said because of the 1/2 life of the drug 2 weeks is fine, but then if you go out more than 30, the estrogen spikes back up. It will start waking up after two. I felt almost normal after my 30 day break.....

sherry67

Redheaded1,

Thanks for responding. When I was on Tamoxifen I felt normal except for the Charlie horses. Arimidex I ach every where and slow to move. I also feel like 100 when I'm only 48. I just want to feel normal I don't care if I have to take something forever. I had enough side effects with my tx.

Sherry

maxdog

I was under the impression that side effects are supposed to decrease the longer you are on Arimidex. I am on .month 3 and have had enough! It started with the joint pain, but now I have debilitating bone pain. I can barely move my neck, now my right shoulder, elbow. My hips are killing me! 1 month ago I ran a 5k, and now I am so frustrated. Anyone else?

Redheaded1

Maxdog, I think ou should call your MO tell them how you feel and see if you can do a 2 wee break and t hen try Femara. My humble experience is that most of us who can't do well on Arimidex do well on Femara and those who can't do Femara tolerate Arimidex better. ( I say this from experience, my Onc tried switching me to Femara because of the cholesterol effect, and I lasted 4 days on Femara.......... so the side effects of that one did to me what you say this one is doing to you... You have everything to gain from trying the other drug.....just saying. Don't continue to suffer.

maxdog

I do have my 3 month follow up with oncology on Weds. I'm counting the days.....

sherry67

max dog,

I'm on a two week break from bone pain. I would do my walking for one day and suffer for over a week. I have to call MO in two weeks.

Sherry

doxie

Redhead ,

I too am allergic to food dyes. I've given up keeping track, and coconut and chocolate. Often I get hives and I have no idea what has caused them. Amazed I got through this whole BC treatment with only an allergic reaction to Neulasta.

---

tjh

I had terrible SE from the generic Arimidex.I switched to name brand and it is better. Tonight is a rough but I have a student on escort which means I walked 6 miles today...I think I am exhausted from that and handling other behaviors.

Redheaded1

Doxie- are you allergic to sulfa? I always had problems with swimming pool chemicals (chlorine) and my STAR PT told me people with Sulfa allergies always have issues with pool chemicals/bleach.....I get the worst hives possible from that-have to watch my laundry detergents- I use Cheer Free and Dreft baby product.

PontiacPeggy

Red, I'm allergic to sulfa and haven't ever had issues with chlorine in pools (aside from green hair). I use Purex Free. Laundry detergents are a huge issue.

HUGS!

sknitter

I had breast cancer 4 years ago and began taking tamoxifen. I had lots of joint pain but I really thought it was because I am 56 and wasn't blaming the drug. This year I I had a new recurrence of breast cancer. 4 weeks prior to my surgery (Double mastectomy) I went off of the tamoxifen as it is an anti coagulant. I am now 6 weeks post op and I have absolutely no joint or bone pain and no hot flashes. I don't need chemo or radiation, but MO would like me to do a 3-6 month test with Arimidex. I'm afraid the side effects will be the same. Has anyone else switched and found a different result

PontiacPeggy

SKnitter, Welcome! I can't speak to your question but I would ask that you fill out your profile and make it public. It helps so much to know what your BC journey has included. From what I've read here, just because you have SEs with one of the drugs doesn't mean you will with another. And Tamoxifen is different from the AIs like Arimidex. I would counsel you to give it a try. Your MO seems to be aware of the possible SEs of it since he's asking you to give it a "trial." Good luck making your decision.

HUGS!

doxie

Redhead,

I'm not allergic to sulfa drugs, chlorine, or laundry soap yet, though I have family members who are. I stay out of pools and use dye free laundry soap to be proactive. Almost never use bleach.

GG27

Sknitter, I had lots of problems with different manufacturers of Tamoxifen, found I was allergic to some of the common fillers. Once I found one that I had no problems with, I stayed on that for 5 years, then I switched to anastrozole by the same manufacturer & have had zero problems, other than a hot flash once in a while & I'm not sure I can blame the drug for that. Try it, you may have no SE's and if you do, try a different maker. Cheers, GG

radgal

I will be seeing a physician regarding having injection of testosterone-anastrozole pellets.

There are two videos on Nancy Liebowitz, MD website that discuss this at length.

For breast cancer survivors, the anastozole prevents the testosterone from being converted to estrogen and there are no side effects with anastrozole because of the testosterone.

Please go to www.drnancylebowitz.com to see her two videos, one on testosterone pellets and one for breast cancer survivors.

Redheaded1

sknitter---all you can do is try and see. I didn't have any se of t his drug to bitch about until recently--I started it June 2014 and am now starting to feel crappy with joints, depression, etc I had mild hot flashes but nothing to complain about. I am 5 days into a 14 day break and I feel more like me......aghhhhhhh

Jerseygirl927

can't complain either, but not sure if my neuropathy is any worse, hard to tell

Redheaded1

Radgal---did you see the 2010 article posted here on b.c.org about it?

sherry67

Redheaded1,

I truly know how you feel. I'm on day five today and almost feel human.. The joint pain awful!!! Some days could barley walk and I'm only 48..11 more days of no med. 😊😊

Redheaded1

GG27---just curious who makes the Tamoxifen that you tolerated the best? I am using Teva ansastrazole and it is better than some of the others at least for me.

GG27

Redhead, I am on APO, not sure if that's available in US. It's the only one I can tolerate. I've heard others say that Teva is good. GG

Molly50

I decided to journal every day for at least the first few months my journey on anastrozole so I can be clear what my SE's are. I am doing the same with rads. So far at 7 days just my bad knee hurts more in the morning and my hands hurt a little more. I am taking it at night a couple hours before bed.

PontiacPeggy

Molly, good idea. I kept a journal for most of my active treatment but not so much since I started on anastrozole. Fingers crossed that the stiffness and nasty knee improve as your body adjusts to its life without estrogen.

HUGS!

maxdog

I had my 3 month oncology follow up today. I get to start a 2 week Arimidex holiday! MD said the pain I am having is not necessarily what they see from Arimidex....so we will see. Also-ladies would you chime in on tumor markers and scans? This oncologist doesn't use either. He said by the time you see elevated markers or have a scan due to an issue, the outcome is the same.....metastatic, and so the treatment is the same. It just makes me really uneasy, but I am pretty new to this journey. Would love to hear others opinions! Thanks

Anonymous

maxdog, I started with a new MO last week due to moving to new state. Regarding tumor markers she does not like them as they are unpredictable and can be elevated for reasons unrelated to BC. She feels they cause unnecessary anxiety with patients and left it up to me to have them tested. I'm not easily stressed so chose to have them done just for the heck of it. My last MO did not do them at all. Not sure what scan you are referring to but many MO's have us do a dexa scan for bone mass baseline and then it is repeated at 2 years for comparison. I'm guessing they may be done earlier if there are joint problems earlier.

I'm sure others will chime in as well.

tjh

My oncologist is having me do a bone scan after 3 months on Arimidex and starting a bone drug...not sure which one.

Redheaded1

my MO does 27-29 tumor marker, a CBC and LFT every 3 months and because of my elevated cholesterol, we now check that as well. He said he did not see any need to do a PET SCAN, as it would just be extra radiation that he didn't feel I needed. I do a DEXA every 2 years. But, I do have to suggest a clinical breast exam. He has done 2 since I was diagnosed. He's a very good doctor and when you find one you trust and like, hang on for dear life...

Spookiesmom

My MO does tumor markers every 4 months. My PCP does in between those, and checks other non ca stuff too. I feel like a vampires pin coushion.

I did a DEXA pre arimadex, then a year later. Just a tiny decrease in my bones.

Unless I have symptoms, no further scans except for bones.

mysunshine48

My MO did the 27/29 tumor marker and the CEA when I finished chemo three months ago. 27/29 was fine, but the CEA was a few points elevated. So, she had me have 5 CT scans.......brain, bone, chest, abdomen and pelvis. Also a colonoscopy and an endoscopy. I freaked out! It was awful......drinking that barium stuff, IV's - radio active for the bone scan. I was terrified something was terribly wrong. After a week of horrible anxiety, all were clear. So, why the elevated number? Since then, I have had two more CEA marker bloodtests. They come out the same - a little elevated. They ARE very anxiety producing!

Because of starting Arimidex, I also had a dexascan.