Anyone else experiencing increased migraine while on Exemestane?

Posted by roseann4z @roseann4z, 5 days ago

I have been on Exemestane for years (also Ibrance) for Stage 4. It has been working with a few small setbacks. However what started out as a migraine headache for a day every few months has increased to every 10 days to 2 weeks with days to recover. They have ruled my life in addition to all the other side effects of treatment. My oncologist says it’s not the estrogen blocker but everything else in me says it is. Anyone else have experience with headaches/migraine while on these drugs and will s change in meds help?

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I had nonstop migraines with anastrozole. My oncologist said that it wasn't the meds. I went off the meds and the headaches stopped. You know your own body.

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@roseann4z, headache has been mentioned by some members in this related discussion:
- Side effects of exemestane (Aromasin) https://connect.mayoclinic.org/discussion/side-effects-of-exemestine/

What testing did they do to rule out potential other causes?

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@colleenyoung

@roseann4z, headache has been mentioned by some members in this related discussion:
- Side effects of exemestane (Aromasin) https://connect.mayoclinic.org/discussion/side-effects-of-exemestine/

What testing did they do to rule out potential other causes?

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I have had MRI of my brain and am under the care of a neurologist. I am also going for PT to help with neck pain. MRI was clear. Have some muscle issues in my neck but no spine involvement. PET also clear.

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@3dogngt

I had nonstop migraines with anastrozole. My oncologist said that it wasn't the meds. I went off the meds and the headaches stopped. You know your own body.

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I agree. I have been told by my oncologist & also neurologist that it is not the drug but the coincidence is striking to me. That is why I am interested in other’s experiences.

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@roseann4z

I agree. I have been told by my oncologist & also neurologist that it is not the drug but the coincidence is striking to me. That is why I am interested in other’s experiences.

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I am on Exemestane. Have not experienced headaches. I did have sleeplessness and joint aches but yoga, pranayama and acupuncture has done wonders!!

And I have noticed- some oncologists tend to say.. “ it’s not the drug!” ☹️

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@celestebradham

I am on Exemestane. Have not experienced headaches. I did have sleeplessness and joint aches but yoga, pranayama and acupuncture has done wonders!!

And I have noticed- some oncologists tend to say.. “ it’s not the drug!” ☹️

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Thank you. I tried Acupuncture briefly but the practitioner was difficult for me to relate to-not a good match. I would like to try again since many have recommended it to me.

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@roseann4z

Thank you. I tried Acupuncture briefly but the practitioner was difficult for me to relate to-not a good match. I would like to try again since many have recommended it to me.

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Hello all, I too have suffered greatly from debilitating headache which appears directly related to aromatase inhibitors. I searched numerous BC sites repeatedly for reasons and fixes to help me stay on the medication. I worked with my oncologist, neurologist and nurse practioner to leave no stone uncovered. Over the next 18 months I had two CAT scans, 3 aromotase inhibitor holidays of two weeks duration each and numerous medical grade headache medications. I also kept a daily headache journal. It became evident that a strong pattern repeated itself over many 12 to 14 week periods. I tried each AI type and alternate brands of Arimedex. The headache would only resolve when I discontinued the drugs, slowly disappearing by about 20% per day over 5 or 6 days. The pattern of occurrence and then disappearance was almost exactly the same each time, repeating itself four times. My oncology team could no longer in good faith, prescribe aromatase inhibitor drugs to me, as the mechanism of action for each of them is virtually the same. At this point my oncologist suggested I try Tamoxifen. Despite being postmenopausal, and with a grade 3 IDC and extensive LVI, I agreed. It has come with its own side effects but they are tolerable. As my team reminds me, the "best drug is the one you can take as prescribed and stay on". I have now been on Tamoxifen for over 3 years. I am advised to try to get to ten years of combined drug therapy, and I now believe it will be possible.

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@eri55

Hello all, I too have suffered greatly from debilitating headache which appears directly related to aromatase inhibitors. I searched numerous BC sites repeatedly for reasons and fixes to help me stay on the medication. I worked with my oncologist, neurologist and nurse practioner to leave no stone uncovered. Over the next 18 months I had two CAT scans, 3 aromotase inhibitor holidays of two weeks duration each and numerous medical grade headache medications. I also kept a daily headache journal. It became evident that a strong pattern repeated itself over many 12 to 14 week periods. I tried each AI type and alternate brands of Arimedex. The headache would only resolve when I discontinued the drugs, slowly disappearing by about 20% per day over 5 or 6 days. The pattern of occurrence and then disappearance was almost exactly the same each time, repeating itself four times. My oncology team could no longer in good faith, prescribe aromatase inhibitor drugs to me, as the mechanism of action for each of them is virtually the same. At this point my oncologist suggested I try Tamoxifen. Despite being postmenopausal, and with a grade 3 IDC and extensive LVI, I agreed. It has come with its own side effects but they are tolerable. As my team reminds me, the "best drug is the one you can take as prescribed and stay on". I have now been on Tamoxifen for over 3 years. I am advised to try to get to ten years of combined drug therapy, and I now believe it will be possible.

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Thank you so much for sharing you experience! It is exactly the type of experience I was hoping to find. I will definitely pass on your findings with my care team. I wish you health & happiness!

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@celestebradham

I am on Exemestane. Have not experienced headaches. I did have sleeplessness and joint aches but yoga, pranayama and acupuncture has done wonders!!

And I have noticed- some oncologists tend to say.. “ it’s not the drug!” ☹️

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That’s because they can only go by what are well documented. So, “it’s not the drug” because they don’t see it in the book/literature. For me it’s similar to a science theory. They run experiment to come up with a theory. Then when they run into an exception, then they say the exception is not happening because it doesn’t follow the theory.

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@roseann4z

Thank you. I tried Acupuncture briefly but the practitioner was difficult for me to relate to-not a good match. I would like to try again since many have recommended it to me.

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My acupuncturist is incredible and interesting enough she is an oncologist too!

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