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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 Surgery 3/3/2019 Prophylactic ovary removal 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 9/5/2019, ILC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, ER+/PR+, HER2-
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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 11/15/2018 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 Surgery 3/3/2019 Prophylactic ovary removal 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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Oct 20, 2019 05:37PM Lvthview wrote:

So I would like to bring up several issues that have bothered me with this whole journey on AI’s. I had side effects on both Letrozole and Arimidex and am now trying Aromasin. I know our Dr’s like to suggest trying a different type once side effects happen, with the hopes that a different drug will have less harsh results. Here’s my conflict with that. What ALL the estrogen blockers do is deplete us of estrogen...and it is that lack of estrogen that causes these side effects. Menopause symptoms on steroids so to speak. I feel like trying a different one is almost a “distraction” from the actual problem with all of these drugs. Depletion of estrogen, which while potentially helps avoid a recurrence if we happen to still have a cancer cell lurking, is depleting is of what normally helps protect our hearts, joints, brains and bones. So, to me, there is no great choice when deciding to takes these drugs, or not. I also have a higher than ideal BMI and have been exercising, eating clean, intermittent fasting...and virtually impossible to lose weight. I have even read these drugs aren’t as effective if your BMI is higher than should be. Not sure if that is correct or not but makes sense to lower your weight to help lower estrogen from fat and yet hard to lose on these drugs. While I had a low grade, Stage 1A, 1cm tumor with no node involvement...my Oncotype score was 24. Had a double mastectomy to avoid radiation and no chemo due to score (barely making the cut-off).

This decision to stay on AI’s or not has been the hardest struggle for me of this whole journey. Thanks for listening

Dx 4/26/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 21, 2019 09:35PM Melmatt wrote:

I have had those exact same thoughts. Is it the side effects of the AI, or is it a byproduct of the estrogen depletion...feels like we are trading bad for the possibility of worse. Impossible to make a decision

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Oct 22, 2019 01:45PM - edited Oct 22, 2019 01:48PM by mac5

I got the Genetic Tests results...no Gene Mutations at all. But there was an AU on the MUYTH gene there's no answer for.

That means I have no “genetic" predisposition for Cancer but now I have BC for the second time. There is no reason I should have gotten it the first time. JS...

Had the Oncotype Testing done and waiting for the results. In my Research I've found that different chemo drugs work on different genome types within your tumor. Commonly called SERMs. This makes perfect sense to me. Why use a scattershot shotgun blast of Anastrozole to kill all the Estrogen and Progesterone in my body? Obviously my brain, heart and bones need hormones to function. My MO is only considering the Oncotype Score to determine my chances of responding to Chemo.

My MO is insisting that I take Anastrozole or Faslodex without systemic Chemo for ILC. Right now I'm fighting that. Will have a Bone Scan and Whole Body CT Scan on Friday. If the area of the chest wall shows again, I'll be kicking and screaming for a new Treatment Plan. If the chest wall is clear, I'm still waiting on the Oncotype Test to determine which of the 12 genes in my Cancer might respond to which drug.

If all else fails and my only option is Endocrine (hormone) Therapy, I'll chose Faslodex. At least it only targets the Hormone Receptors in Breast tissue.

It's been 5 months since I noticed something wrong and I still do not have a Treatment Plan. I'm getting antsy.

Just wanted to add my “slow growing” ILC has grown from a 6 to a 9 cm size in 6 weeks time..

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, ER+/PR+, HER2-
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Oct 22, 2019 04:57PM Melmatt wrote:

hi Mac5– I have ILC, and my oncotypte was 17. But I keep reading that oncotype may not be effective for lobular. Please keep me posted—I really hope your scans are good. I started on Letrozole and it was miserable. I have switched to anastrozole and I would call it “tolerable”. Just trying to decide if tolerable is something I am willing to settle for

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