We are 196,465 members in 81 forums discussing 144,751 topics.

Help with Abbreviations

All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Are joint issues permanent? Are they being damaged?

Topic: Are joint issues permanent? Are they being damaged?

Forum: Hormonal Therapy - Before, During and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 16, 2017 10:54AM

Sjacobs146 wrote:

I am currently on Arimidex and am experiencing pain in my hands and knees. Does anyone know if the joint issues are permanent? If I take these AIs for 5 or 10 years, will I still have the pain when I stop? My MO say she the SEs get better over time, but I'm concerned about permanent joint damage. Starting to think increasing my odds by 3 percent might not be worth it.

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/23/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/24/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/26/2015 Breast Hormonal Therapy 4/17/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Page 1 of 1 (14 results)

Posts 1 - 14 (14 total)

Log in to post a reply

Jul 16, 2017 12:59PM - edited Jul 16, 2017 03:57PM by BarredOwl

Hi Sjacobs146:

I don't know the answer to your question. However, I have a question about your statement that re an AI only "increasing my odds by 3 percent." That strikes me as a relatively low percentage, considering your stats and the fact that absolute benefit is proportional to individual risk. Is that 3% estimate of potential absolute benefit a case-specific estimate provided to you by your Medical Oncologist or is it something you read here on the message boards?

If it is a case-specific estimate of absolute benefit provided by your MO, may I ask you to please clarify the nature of the estimate (e.g., 5-year; 10-year; distant recurrence risk; mortality; other type of estimate?).

Thanks,

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
Log in to post a reply

Jul 17, 2017 12:50AM Sjacobs146 wrote:

BarredOwl, in a different post someone referenced predict.nhs.uk. I entered my info and they calculated my 10 year survival rate to be 88.9 percent with no adjuvant treatment. Benefit of adjuvant hormonal therapy was calculated to add an additional 2.4 percent absolute.

If you have better sources of information, I would be interested in reading/learning more. I am likely to stick with the Arimidex because if I do have a recurrance, I would not be able to live with the fact that I could have done more to protect myself. I had no issues with Tamoxifen, and the joint pain with the Arimidex is bearable so far, but if it gets worse or I am permanently damaging my joints, perhaps I should go back to Tamoxifen

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/23/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/24/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/26/2015 Breast Hormonal Therapy 4/17/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 17, 2017 01:03AM - edited Jul 17, 2017 01:03AM by Artista928

Vs Tamox it is about a 3-4% additional benefit IF it works. I can't do AIs because of pre-existing arthritic knees which have gotten worse on AI so I'm back on Tamox hoping it'll be good enough.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
Log in to post a reply

Jul 17, 2017 01:37AM Meow13 wrote:

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.

Log in to post a reply

Jul 17, 2017 02:28AM - edited Jul 17, 2017 02:29AM by ShetlandPony

Sjacobs, I asked my onc whether my joints were being damaged and she said no, it is not damage, as arthritis is. When I went off the aromatase inhibitor letrozole after two years the stiffness and achiness went away.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda
Log in to post a reply

Jul 17, 2017 03:55AM - edited Jul 17, 2017 03:58AM by Falconer

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.

Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots. Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole)
Log in to post a reply

Jul 17, 2017 04:25AM Meow13 wrote:

Don't you love that they keep referring to discontinued use as non-compliance. As if you are a prisoner not listening to instructions. The fact they don't understand the underlying cause of the joint pain is very concerning.

I take extreme caution with accepting prescription drugs from doctors.

Log in to post a reply

Jul 17, 2017 05:05AM farmerlucy wrote:

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.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

Jul 17, 2017 08:18AM edwards750 wrote:

I'm with Farmer Lucy. My last day with Tamoxifen was last October. Joint issues definitely better. Still have leg cramps in one leg but that's arthritis.

Diane

Log in to post a reply

Jul 17, 2017 08:23AM dtad wrote:

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.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jul 17, 2017 10:15AM - edited Jul 17, 2017 10:18AM by Sjacobs146

Falconer, thanks so much for that article, it's extremely informative. ShetlandPony, thanks for that info, makes me feel a lot better.

I will say that the joint pain is mainly annoying to me, I'm not stopping anything that I do. Movement helps, including yoga. I just can't overdo it.

Susan

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/23/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/24/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/26/2015 Breast Hormonal Therapy 4/17/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 17, 2017 04:49PM - edited Jul 17, 2017 05:35PM by BarredOwl

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
Log in to post a reply

Jul 17, 2017 09:57PM EpicSquirrel wrote:

Where do I sign up for the BarredOwl Fan Club please. Every time a post I'm interested in has new info from BarredOwl I'm like YES and fist pump.

History of fibrocystic and dense breasts (pain, cysts, aspirations, biopsies). 1.4 cm IDC at age 49 after "benign" flare up earlier this year (2017) Healthy lifestyle, no genetic mutations. Sometimes it is just bad luck. Dx 5/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 17, 2017 10:00PM kira1234 wrote:

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

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/8/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/3/2010 Hormonal Therapy 10/5/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right

Page 1 of 1 (14 results)