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Topic: Severe side effects from AIs

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: Oct 9, 2019 12:53PM

Melmatt wrote:

Has anyone experienced really bad joint pain from AIs? I started on Letrizole and seriously couldn’t tolerate the bone/joint/muscle pain. I can take the hot flashes and the fatigue, but not debilitating pain in my back, hips and knees. Oncologist took me off for two weeks, and side effects stopped. Started Arimidex on Sunday and here me go again—it’s just as bad. Walking helps somewhat, but I can’t walk 24 hours a day. I am at my wit’s end—I don’t want to risk recurrence but I don’t want to be miserable for 7 years.

Not sure if it’s relevant but I has stage 1 grade 2 ILC. Lumpectomy and radiation which I completed in August. Any advice is greatly appreciated

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Oct 9, 2019 01:14PM Yogatyme wrote:

Melmatt, everything about your bc is relevant. I’m not able to help re: AI side effects as I have chosen not to take them. However, many people do and may have some help they can offer. Have you done the online recurrence risk calculators? That may give you some important information. So so sorry you are having such a bad time. I hope you find answers and reliefsoon!

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 9, 2019 01:19PM mac5 wrote:

I won’t advise you but I can relate my experience...

I could not tolerate the AIs. The joint pain was literally debilitating. I kept asking myself was this really living?

I stopped taking them because I was post menopausal and my BMI was over 30. I didn’t think they would make a difference.

After 8 years of trying not to worry, it came back.

Would it have come back after 5 years of AI? I really think it would. But that’s just me. Make your own choice. You are the one living with it.

I tried to be healthy and had no hormones. But being overweight contributes. I’m not obese but bigger than I want to be. So Genetic Testing will tell me what genes are broken and what to expect next.

Hope you stay well and enjoy life


Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/25/2019, LCIS/ILC, Right, 6cm+, Grade 2, ER+/PR+, HER2- (IHC)
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Oct 9, 2019 01:22PM OCDAmy wrote:

Has your MO offered any kind of pain relief? Mine gave me prescription Naproxen and Gabapentin. I don't take it all the time but it does help with the pain. I am probably going to get a steroid injhection in my knee it hurts so bad.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/14/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 9, 2019 01:35PM Melmatt wrote:

thank you all for the replies! OCDAmy I will definitely call the navigator today and ask about a prescription for pain relief. Mac5, I really, really appreciate you sharing your experience with me, and I’m sending good vibes your way for what it’s worth. Yogatyme I will google those calculators and see what they have to say. Oncotype was 17, with 5% recurrence chance if I take the AI. If I don’t, who knows.

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Oct 9, 2019 02:21PM Yogatyme wrote:

Melmatt, that is a great oncotype score!! There is a thread on BCO about the calculators and Other factors to consider when deciding about AI’s. Beesie offers really great information so you may want to do a search of her name and read what she has to say about this issue.

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 9, 2019 02:33PM Melmatt wrote:

I will take a look—thank you!!

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Oct 9, 2019 02:47PM Spookiesmom wrote:

Me too. 4 years on Arimidex my foot hurt so bad podiatrist put me in a boot, was using a walker. Stopped it, pain went away. Then about 7 months on tamoxifen. Pain came back. Stopped that, no more pain

cancer came back. Currently on ibrance and letrozole. Pain is starting again. Not sure what I’m going to do next. Will see MO in a few weeks, hope he has suggestions.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Oct 9, 2019 02:53PM Melmatt wrote:

Seems like a no-win situation for those of us who get the side effects

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Oct 9, 2019 02:54PM Melmatt wrote:

Spookiesmom I hope he has some suggestions!

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