Clinical Trials for Reducing Endocrine Therapy Side Effects?

The harmone blocker just is so horrible

Cleveland Clinic B12 for hormone blocker joint pain. Still enrolling. Go to clinicaltrials.gov

I have been on hormone blockers for 3 years. I suggest getting with a really good Doctor or PA that really understands what your body is going through and they can RX meds that can make it a little bit easier. I have a great PA and can just text her and she gets back with me quickly with info. Chat box is a great source. You just type in symptoms and gives you info. I found out besides metastatic breast cancer I have an autoimmune disorder called CVID. So I was really tired but it because I do not make enough plasma. My Oncologist thought it was the hormone blocker but it wasn’t. I now get immune globulin therapy. So my point is have a great Doctor that is willing to go the extra mile for you.

Point is if they have to give you more drugs to be able to take one is ridiculous. Gabupentin is horrible just as bad as blockers. So you take more pills with more side effects.

What stage are you?

So my CVID (common variable immunoglobulin disorder). It is a genetic disease that showed up on an immune gene testing. So I have 2 bad chromosomes. So immunoglobulins mark cancer cells then t- cells come in to fight. Once I had the CVID diagnosis started immunoglobulin therapy. I was able to get off the ibrance. So if something doesn’t seem right with your body do what ever it takes to get someone to listen. I had to go through a lot of hoops to get the correct diagnosis and in the beginning the doctors thought I was depressed and not wanting to hear that my symptoms was all due to the Lestrozole but it wasn’t. I now am feeling so much better.

In October I’ll be able to participate in the Eli Lilly global, random phase 3 trial called Ember-4. It trials a drug called Imlunestrent, which is the oral version of Fulvestrent. The drug is an estrogen receptor degrader as opposed to aromatase inhibitors which are estrogen blockers. The trial is for early breast cancer dx who have taken an AI for a minimum of 24 mos up to 5 years, and who are at a higher risk of recurrence. My oncologist is at NYU and is also one of the investigators on the trial there. She thinks I could benefit. I was unable to take Verzenio because of my high risk of developing blood clots. I’m crossing my fingers that I can get the trial drug and I’ll have less arthralgia and pain like I have from the AI. The control group in the trial just stays on the AI for the duration. You can leave the trial at any time.

I started the ember-4 trial one month ago . The first week i had some diarrhea which resolved. I’ve not had any other issues since then.

Sharon J that’s good to know!

Ive bee. Through Ibrance and verzenio and Kisquali. Side effects were too much for my body to deal with. After zomet for 6 .months, ive bee o. Fluvestrant shots every 4 weeks! Only slight progression, but side effects again are driving me to stop treatment. Im 72 and struggle to get out of bed due to joint pain and mood. Im ready to just stop it all and let my body do what it can.

I dont have a specific trial in mind but I found my trial via this app - it took some scrolling and reading. Click on treatment at the bottom of the scene and then clinical trials

I'm having trouble understanding what the estrogen degraders do. Anyone know of a good video? Do they permanently affect your cell from receiving estrogen?

Ovarian suppression (like Lupron) shuts down your ovaries if you’re premenopausal. No more periods. Dryness, etc. Estradiol below 5. Then AI’s like anastrozole stop your body from converting fats, etc. into estrogens. I’ve been on this for 10 months and it wasn’t easy to adjust but I have to say it’s not as bad as I thought. I still feel like myself and try to just roll on. Insomnia was the worst for me. Bone and joint pain come and go and it can be very bad but I just keep moving. This is hard! I just try to be positive.

Research into managing endocrine therapy side effects is an active area, and there are ongoing studies exploring ways to help patients better tolerate these important treatments. Reaching out to your oncology team about available clinical trials in your area or consulting ClinicalTrials.gov could help you find options that might be a good fit for your specific situation and concerns.