ATEMPT Clinical Trial - Roll Call
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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.
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IsabelArcher
My US was normsal Except for some fat in my liver which is common esp in a 73yo.
Funny my lipid profile is awesome! Trig only 46.
Have been on arimidex for 17 mos. and I too have joint aches like you. I have always been very active so I hate that.
What are you on now
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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!
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Thanks to Tiny Dancer, Wabals, and TTFan for your replies. It's so helpful to hear other women's experiences. Given your similar experiences, I'm going to assume my current joint pain issues are indeed the anastrozole and NOT arthritis, and I hope very much they will just go away now that I've stopped the drug. My friend who had stage 2 ER+ BC had terrible joint pain from her AI (either anastrozole or the other one), but a 2-week break stopped the worst of it, so when she went back on, she felt some improvement. I can only encourage ladies coping with this to talk to your doc about taking a break or switching to Tamoxifen, which for the most part gave me no SEs and which I am now back on. We HER2 veterans are in a different category from ladies with ER+ cancer anyway--my onc was adamant that the benefits of anastrozole as compared to Tamoxifen for HER2 BC are so tiny (if any) as to be not worth the SEs.
Tiny Dancer--The joint pain is new for me but I've had the hobbling problem for a while (upon waking up in the morning and upon standing up from sitting) and assumed this was just aging (I'm 55). I never thought it was the Tamoxifen as that drug is not supposed to be associated with joint pain the way the AIs are. I also used to be unable to stand up from squatting--so forget about looking for a can of something or other in the back of a lower cabinet! After a few weeks of doing an aerobic exercise aerobic video with 2-lb weights, this problem improved a lot--my legs are stronger. Then everything went to hell again after my painting job (porch floor--scraping on my knees) and the anastrozole. It's all very confusing!
But I refuse to be slowed down, and darned if I wasn't out weeding the garden on my knees yesterday.
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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
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Isabel, I'm 53 and maybe my stiffness is from the monthly Lupron injections that I've been getting since last August. My MO wants to keep me on it for a year, so I hope when I see him again in August, I can finally stop.
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Wabals, that is amazing that 4 days off already has results!
TinyDancer--I have forgotten what you are taking Lupron for...?
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Estrogen levels were still high with the Tamoxifen, so MO added Lupron to stop the production of it
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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
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I thought I would share why I am no longer taking arimidex. I was prescribed arimidex prior to surgery. and it changed all my pathology from biopsy to treated surgical specimens. Everything was weaker hormone Ki-67, Her2 went from + to -. Not sure that pathology post arimidex is valid, though and I would prefer them to use my needle core biopsy to develop my treatment. I am not sure my oncologist is listening to me, but he eventually agreed to chemo, TC x4. I stopped the arimidex the day of chemo and been off now almost 5 weeks. My BP went from very high, on arimidex to very low, and my cholesterol when up 80 pts while on arimidex. I am now off all BP medications and I feel pretty good. I won't be going back on arimidex after chemo, we will try tamoxofin.
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My bp also went down
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Clear mammogram today
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Wabals - Congrats on the clear mammo! How is your joint pain now? Maggie
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Maggie I am still off arimidex until we figure out what is going on with my liver fx tests and antibodies. So my joints feel greaat
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congratulations on the clear mammo wabals, it's always such a relief
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Thanks Tfan it surely is
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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.
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Isabel ArcherWill pray all is well with you! Enjoy your vacation!
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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.
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Congrats on 4 years clear!!! Thanks for the insight from your visit. I have joint pain which impacts certain Yoga and Pilates moves - has been gradual but can't be ignored. My oncologist asked for an updated bone density scan. I have post menopause "osteopenia" as of 2013/14. I'll get the results when I see my GYN in a few weeks. The idea of "estrogen deprivation" fits with other "low estrogen" issues I am dealing with. I take Mg supplements. Will look into glucosamine...
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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
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I also have pain in my hips, knees and sometimes my fingers and the heels of my feet. I mentoined it to my MO last week and she said the same thing that your doctor said. She said it's becuase my body is starved (for lack of a better word) of estrogen. My cycle stopped after my first chemo treatment back in Dec 2016 and has not yet reappeard. My MO also said that it would be a lot worse if I had to take the hormonal drugs.
My pain is more stiffness and achiness after moving from a sitting or laying down position. Once I get moving along the stiffness goes away and I can walk like a normal person. My MO is not worried it is anything else since the pain is on both sides equally. She said that had I been experiencing pain on one side and not the other she would send me in for tests.
~Dee
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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.
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I had my 2 year mammo and ultrasound today and my surgeon says it was "all clear". Yay!
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Yay Tiny
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Thanks Wabals and congrats to you too!
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Congratulations Wabals, Isabel Archer, and Tiny on clear mammograms.
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Congratulations Wabals, Isabel Archer, and Tiny on clear mammograms.
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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.
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MiPat I felt exactly the same way. It will get better. Congrats
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