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How do you handle the gut deep conviction that cancer has spread/returned? Finished radiation. On 3rd AI. Felt horrible ever since. Thanks

A MyBCTeam Member asked a question 💭
Winter Haven, FL
February 16
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Answer Summary

Members rallied around someone struggling with a gut-deep fear of cancer recurrence after finishing radiation and starting their third... Read more

Members rallied around someone struggling with a gut-deep fear of cancer recurrence after finishing radiation and starting their third aromatase inhibitor, offering both emotional support and concrete action steps including requesting a PET scan and thoroughly discussing symptoms with their oncologist. Several members shared practical strategies for managing severe AI side effects, such as trying lower doses of exemestane or letrozole, switching manufacturers to avoid problematic inactive ingredients like lactose, and using supplements like melatonin for sleep, glucosamine for joint pain, and alpha-lipoic acid for neuropathy. A recurring theme was the importance of self-advocacy, writing down all symptoms before appointments, researching options like AIMSS on PubMed, and recognizing that some women ultimately need to stop AIs entirely with their doctor's support.

A MyBCTeam Member

I'm sorry, please talk to your doctor about the AI dosage, the time you take it, and possibly getting the med from a different manufacturer. Sometimes women are sensitive to the inert ingredients used to make the tablets, etc. Different manufacturers use different ingredients for that, so a different manufacturer might help. I think @A MyBCTeam Member was one who had luck with a different manufacturer! Keeping you in prayers for some relief! Hugs!

February 17
A MyBCTeam Member

@A MyBCTeam Member

Melatonin for sleep as is magnesium tablets and tart cherry tablets

All others help with both arthritis pains and bone, joint, and muscle pain from AI’s.

Neuropathy muscle weakness caused by chemo and Letrozole - accupuncture, massage, AlphaLipoic acid or R lipoic acid and B1 and B12 and
Bendotiamine.

Look up AIMSS which is caused by AI’s.
Not in everyone but in those who carry the one or two genes that kick this in.

February 17 (edited)
A MyBCTeam Member

@A MyBCTeam Member
What are your symptoms??

Call your Dr.
Write down all your symptoms and discuss taking a lower dose.
I am presuming that you have taken all 3 AI’s and can’t take tamoxifen.
****Also do research as some women are taking lower doses of the AI’s.
Go to Pub Ned site and google there.

There have been some trials where women take lower doses of Exemestane.
Some are taking lower doses of Letrozole.

What remedies are you using?
Generic Claritin. (Loratadine)
Glucosamine Chrondroitrin
Hyaluronic acid plant collagen tablets.
Collagen tablets.
Melatonin

Clear above with your Dr.

February 16
A MyBCTeam Member

Thanks. Interesting.

February 17
A MyBCTeam Member

I wish that the other manufacturer of Letrozole had helped me.
Unfortunately, I got even more side affects from it.

I had to stop Letrozole and did not go on a 3rd AI which my medical oncologist backed me on this .

There is someone on here that switched manufacturers of Anestrozole as some of the manufacturers add lactose to it.

If someone is lactose intolerant, certain manufacturers who add it cause a lot of additional problems for that person.

February 17 (edited)

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