Are joint issues permanent? Are they being damaged?

I had pretty bad joint pain, but after stoppinf everything is getting better still have some lingering pain in hip on left but so much better. I have been off over a one year now.

https://academic.oup.com/annonc/article/24/6/1443/...

"Aromatase inhibitor-induced arthralgia: a review"

The link above is to the article I posted on a different thread. I believe the author does discuss the long term effects of AI s.

I've been off Tamoxifen since April. I previously had been on Femara and Arimidex as well. The joint issues have improved a lot. I still take a daily naproxen for arthritis in my knees, but that is down from 2 per day. Improvement was not overnight but it happened.

Sjacobs....to answer your question yes, joint issues from aromatase inhibitors can sometimes be permanent. I also don't agree with your MO that its not joint damage. Its caused by the lack of estrogen. Yes it many times gets better when treatment is discontinued, but unfortunately not for all. MOs are notorious for denying the SEs caused by anti hormone therapy. Your PCP will probably be more forth coming about it. Just do your research and make informed decisions about treatments. I respect and support all individual decisions made. Good luck to all.

Hi Sjacobs146:

I note that there are two versions of the tool available (Version 1.2 and Version 2.0). Version 2.0 of the tool appears to provide information regarding 5-year and 10-year Overall Survival, which is typically a mortality assessment. Additional information at the site suggests that: "The relative risk reduction for hormone therapy is based on 5 years of tamoxifen." Both Tamoxifen and Aromatase Inhibitors ("AI") can reduce breast cancer mortality, and some head-to-head studies have shown a small advantage of AI's compared with tamoxifen, so those receiving an AI may perhaps do a tad better than indicated by the tool? Please ask your MO.

Overall survival benefit is important; however, it typically measures whether the study participants are alive or not at a specific time-point, not whether they have remained disease- or recurrence-free. Those who are alive may be living with metastatic disease, living with a loco-regional recurrence or new disease (i.e., a new primary in the same or contralateral breast), or may be disease-free.

Thus, most clinicians and many patients place value on the additional potential benefit of endocrine therapy in reducing the risk of suffering a distant (metastatic) recurrence. In fact, this is the main goal of endocrine therapy for those with invasive early stage breast cancer.

Endocrine therapy has the additional potential benefits of reducing the risks of new or recurrent same-breast disease AND of new contralateral disease, especially in those receiving lumpectomy.

Tamoxifen provides a potential relative risk reduction benefit for each of these risks by 45%, and an AI by about 50% for early stage invasive breast cancer. However, with early stage invasive breast cancer, the potential absolute risk reduction benefit of endocrine therapy is proportional to individual residual recurrence risk after all other relevant treatments (chemotherapy and/or radiation, as applicable). Thus, those at greater residual risk stand to gain a larger absolute benefit than those at lower residual risk.

If, for example, a person had a residual 10-year risk of distant metatstatic recurrence after chemotherapy of 15%, the addition of Tamoxifen can provide a potential relative risk reduction benefit of 50%, reducing this particular distant risk by an absolute benefit of 7.5% down to 7.5%.

Your MO is is the best source for case-specific estimates of distant recurrence risk either with or without endocrine therapy (after chemotherapy) (the difference between these would be your absolute benefit for that particular risk). Your MO and RO (in view of your receipt of chemo and radiation) can also provide such estimates for the risk of same in-breast recurrent or new disease, and for the risk of contralateral new disease.

As noted in the output for the tool, "for the more complete picture in your case, you should speak to your own specialist." I would strongly recommend that you confirm any overall survival estimates you obtained from such an on-line calculator with your MO, not only for independent verification of appropriate calculation and an explanation of the outputs, but also to obtain a discussion of any caveats or limitations of the estimator. Depending on individual profile, your MO may have a different view regarding estimates of overall survival in your particular case, and can provide the additional estimates described above.

Another point of discussion with your MO would be whether your node-positive Oncotype report can inform understanding of your risk profile. Assuming you received a node-positive (1-3N+) report, that report provides a "5-Year Risk of Recurrence or Mortality after 5 years of tamoxifen" (either Tam Alone or Tam plus Chemo). This is a combined 5-yr risk of recurrence or mortality, and appears to include both local and distant breast-cancer recurrences, new primary breast cancer, or death due to any cause, whichever came first. (See also, "Clinical Experience" information printed above the single graph in the node-positive report, "[t]he endpoint for this study from which the data was drawn was "disease-free survival (time to local or distant recurrence, new primary breast cancer, or death from any cause) and 5-year risks are presented.") The report does not directly address the benefit of endocrine therapy, but some MO's might use this information (if appropriate) to extrapolate an estimate of the benefit of added endocrine therapy. If this type of information is useful, then in addition to your report content, which is based on the study of Albain et al. (2010), your MO may also incorporate later findings into their advice (e.g., Dowsett (2010) re Trans-ATAC, or when they become available, perhaps the RxPONDER trial results).

Those with severe adverse effects who have exhausted their recommended available options (e.g., different manufacturer, different AI, Tamoxifen) and who have received endocrine therapy for some time may have accrued some risk reduction benefit. They may wish to request an explanation from their MO of what is known about how benefit is accrued over time, shorter durations of therapy, and an estimate of the potential additional benefit to be gained by continuing treatment.

Please confirm all information above with your team, and at a minimum, please be sure to request case-specific estimates of your 5- or 10-year distant recurrence risk with or without an AI to ensure full understanding of this important risk reduction benefit.

BarredOwl

Epic the most we can do is friend her. I'm in agreement her knowledge is so helpful