Athletes - Joint/Muscle pain on Tamoxifen & resolution

Have you told your oncologist? The pain may not be tamoxifen

Curlykat, I thought I had hurt my back working in the yard. I do all my gardening and yard work. It came on slowly but really bothered me standing at the sink. I thought I had a hairline fracture. Did X-rays, physical therapy ,the whole nine yards. It started July of last year and by Christmas I could barely get around. Keep me in the loop . Jo

I have muscle pain too...well, hard to tell if it's muscles or tendons (possibly both), but I get "hurt" very easily. Like opening a door with one arm (instead of balanced perfectly between the two arms) can cause my arm or wrist to hurt for days. Playing the piano hurts my hands so much I barely do it anymore. I hate blaming things on the medicine, but I can't imagine I have deteriorated so much in the last couple of months that lifting something under 10 pounds causes lasting pain. I really do think it's my tamoxifen. Not old enough to have age related arthritis or anything...

VL22---thank you for sharing! Yes, I'm only 40, diagnosed when I was 38. And was extremely active before then (I used to teach aerobics but quit when I got my diagnosis). I could barely trick or treat with my child last night because of ankle pain going up hills...that is NOT normal.

I see my MO in January again and will probably mention it, but I don't expect much more than her general sympathy. Not sure there's much she can do for me though.

VL22--definitely let us know if taking the break helps!!!

Just wanted to give a Tamoxifen vacation update. Today was day 12 without the pill. Yesterday was the day when I got out of bed and was like “wow! So this is how normal feels!”

My energy level is definitely up - much more stamina running and hiking. Not sucking for air or feeling like my bones will shatter. Cleaned my house in a way I haven’t in months.

My joint pain is almost completely gone.

I didn’t realize how much of a fog my mind was in. I knew I couldn’t concentrate, but I feel much more present.

I had serious dry skin issues - elbows, around eyes and lady parts - all are cleared up.

The only thing that I still have are the hot flashes, although not as frequently. I am still not sleeping through the night and have trouble falling asleep.

I’m just so much happier. I didn’t realize I was so down.

I meet with my MO at the end of the month. I want some hard numbers of recurrence risks, not the generalizations. Also, my joint pains have gone, but can this medication do permanent damage?

I can’t go back to the body pains. However, I will be willing to try tamoxifen again if the I’m not comfortable with the numbers and if a plan is in place to combat SEs.

Thanks Jo - I’m definitely open to keep trying tamoxifen. I’ve learned that I should have reported SE’s earlier and been more “demanding “ about the side effects being acknowledged. Won’t make the same mistakes again

Ah, girls I feel your pain. I've been awake for an hour now- it's 4AM- thanks to an awful muscle cramp in my foot. I'm also active, a runner and yogini, and achy nonstop. VL- agree on the down feeling too- just low energy. Before all this happened my kids nickname for me was Rocket bc I was always on the go. But what choice do we have? Thanks Jo for sharing your experience. How are you doing now?

Hi all, I am in the same boat. I have been a runner, hiker, climber and very active. I started on a Lupron and anastrazole a year ago after my second bout of cancer. The first time with cancer I did tamoxifen but it gave me bad headaches so with only a 3% chance of reoccurrence I stopped taking it. Nine years later I get cancer in both breasts. The joint and tendon pain I started awful, I told my oncologist I wanted to quit he said I would be looking at stage 4.. it is hard. I’m staying active but in so much pain

So over this. I still can't stop getting "hurt" even from minor things. I pulled a muscle in my arm wringing out a washcloth this morning (who does that), now the entire arm hurts, and the other side (cancer side) too because the scar tissue is aching pretty badly. It hurts to even hold my phone...knee is still acting up so I am extremely inactive today. I don't like sitting around.

:-(. Just feeling down. Don't want to stop the meds but this really wears on you.

My arm and elbow ached for 2 days after....shopping on Black Friday! I guess the bags were heavy? It’s just hard when you have been active and within 6 months I feel 10 years older! I’m thinking of you VL22 and gb2115, it’s tough but we are tougher. I mean mud runs, obstacle courses back country skiing we can do that’s we can do this

Yes, the radiating pain! My whole upper body hurt yesterday. I almost took Tylenol for it, but gutted it out. It was better when I woke up this morning, but the one arm is still a bit tender. Trying to be easy on it today.

:-)