ATEMPT Clinical Trial - Roll Call

Isabel, I am on Tamoxifen and Lupron. I have noticed that when I sit for a while, my hip joints getstiff, and I too hobble around a bit until it goes away. Sometimes when I stand up, I feel like I have to wait a minute and then start walking. If I kneel down, forget it. It takes longer for the stiffness to go away.

hi Isabel and all! I tried two different AIs for a total of a little over a year. Some of the joint pain and depression lifted within a week or two of stopping. I felt 95% better within a month or so. Happily those memories are a bit blurred now. I too thought I must have developed arthritis, I was too limited to exercise without serious pain. But the joint symptoms resolved completely and have not come back on Tamoxifen which I've been on for about 10 months now. The hot flashes are sweatier and a bit more intense on Tamoxifen, but Gabapentin helps with that. My energy levels are improved though not always what I would like. Some days I'm just tired without reason. Others I feel great - could be Tamoxifen, could just be age.

And on a brighter note, I recently put my new Scuba skills to the test with a week diving in Bonaire (near Aruba). I was thrilled that my gym work is helping and I can now stand up from the bench without helpand walk across the boat deck in full 40+ pound gear! Yay quad strength!

Wishing you all freedom from side effects and much happiness!

Isabel I am taking a break from arimidex. I will tell my onc next time I see her. After only 4 days off it my joints are so much less painful. I am going to try tennis again!

Quality of life is very important

Wabals, that is amazing that 4 days off already has results!

TinyDancer--I have forgotten what you are taking Lupron for...?

Isabel Archer on top of that I saw my hepatologist about my continuing elevated liver enzymes. Although just mildly up, it is very high for me. Liver sonogram only showed fatty liver. But additional labs showed autoimmune hepatitis. It is from arimidex I am sure. Tho rare it does happen and there is literature to prove it.

Anyone with elevated lifts do not let them tell you it is normal after chemo. Get it checked

My bp also went down

congratulations on the clear mammo wabals, it's always such a relief

Wabals--hooray! My mammo is next week. We are spending a few days on Cape Cod, then swinging by Dana-Farber in Boston for my appointment. I figure if I have cancer again, at least it won't have spoiled my vacay. ;-)

My joint pain continues, even though I've been off anastrozole/Arimidex for weeks, and it's 10 days into a 2-week break from Tamoxifen (I decided to give that a try even though Tamox isn't associated with joint pain). I'm starting to think I did injure myself scraping and painting, or that I have arthritis, or both. Look forward to discussing the still present possibility that this is drug-related with my oncologist.

Clear mammo yesterday, so I'm now four years out from the summer of stupid cancer. :-)

I had a great talk with my oncologist about my joint pain. She said it's most likely NOT a leftover SE from the Arimidex/anastrozole, as SEs clear up when you stop taking that drug. But I went straight back to Tamoxifen from the Arimidex. So she said I likely have symptoms of estrogen deprivation. My particular joint issues are consistent with that--pain and stiffness in the knuckles, pain in the elbows, and stiffness/pain upon standing up after sitting or lying down for a while. Also, when I told her Aleve didn't really help with the pain, she said joint pain from estrogen deprivation is not inflammation, so Aleve and NSAID drugs don't help. So, she recommended a 4-week break from Tamoxifen to do a "total reset." If I start to feel better after 4 weeks but not completely, I can extend the break to 6 weeks. If there is no change after that much time, then she would recommend I see a rheumatologist. But she thinks it's unlikely that I suddenly have rheumatoid arthritis or Lyme syndrome (that had occurred to me, but when I had Lyme disease I was treated immediately--Lyme syndrome happens when your disease goes untreated for a while). She also recommended glucosamine and magnesium supplements, and melatonin to help me sleep (the 5 am joint pain is not fun!). I am really happy to have at least a likely answer to this puzzle.

Great news Isabel😃As I said my joint pain stopped after going off arimidex. I did a lot of research and AIs cause inflammation.

I am 73 so I do not think estrogen deprivation is the culprit. Never had joint pain in menopause. Every MO has a different take. Very confusing

Hi Dee--yes, my achiness/stiffness is bad after not moving for a while. I had a bit of this for a couple of years (after going into menopause) but it has become much worse since going on estrogen-suppressing drugs, particularly the AI. Mine is also both sides, basically all over but worse in some joints. Interesting that your MO said your issues would be worse if you were taking hormone suppressors--that does appear to apply to a lot of us ladies on here.

Wabals--we do hear variations from our doctors, don't we? But we also are different ages with different issues etc. That's why I find it so interesting to hear everyone's stories.

MAggie--I'm going to start glucosamine today and not the magnesium for now, as magnesium-rich foods are regular part of my diet.

Yay Tiny

Congratulations Wabals, Isabel Archer, and Tiny on clear mammograms.

Yesterday I had my last Herceptin infusion and my new "normal" begins, what ever that is. It has been a stressful year and a half with what seemed like one thing after another. While I am happy that it is over, I am not "happy" I think that I am still processing the stresses of the year, both health and family. My blood work a few weeks ago still showed my bilirubin elevated, but down a little and my Alk. Phosphates elevated for the first time. They were fine before I was put on an anti-viral for shingles so they think it is drug related since nothing else is elevated. So, they are leaving the port in until they draw blood again in late September. So, it is not completely over, yet.