Androgen Receptor Testing & Treatment

Hope, you are a trailblazer. I hope your biopsy is easy. I can't wait to hear the results.

I was just asked yesterday by my Onc to consider a trial with Astella for a new ANdrogen Receptor drug that will be paired with herceptin. They are only taking 40 women in the U.S. For this trial. I agreed yesterday to the testing of my tissue to see if I even have the receptor. I'm very nervous about this trial since it is only paired with herceptin. I'm so curious to see how you ladies are doing on the new drug. I had scans on Thursday and had some major progression on several of my larger masses. I've been on so many chemos the last five yrs we are starting to have few options hence why she suggested this trial. I wasn't given a name for the drug so I'm wondering if it is the same drug. I'll be watching your updates to see your thoughts on the drug. My best wishes to you..I really hope this is your wonder drug. Years ago TDM1 was mine it got me out of a bad pickle and the closest I've ever been to. NED. It changed things for me greatly for 15 months. My prayers that this drug does the same for you.

Just went and looked at the trial page on clinical.gov and it is xtandi..Thank you for being a trailblazer for so many of us. I'm very anxious now to get my testing back they said roughly three weeks.

Hugs

Kimber

This is a fascinating thread, Hope. I'm impressed with the research you've done on androgen receptors and your decision to give Xtandi a try. I hope & pray you are really onto something here.

I do have one question... How important do you think it is it in most cases for us to know if our mets are IDC or ILC? My original dx was multicentric -- a mix of IDC, ILC and Tubular lesions. Since my re-dx, I've wondered if it matters whether my bone mets, which were never biopsied, are IDC or ILC or some of both again, and your situation makes me all the more curious. I'll also ask my UCLA onc about this, but I'm wondering -- excluding tx resistance situations -- does knowing if you're dealing with IDC or ILC mbc make a difference in the txs recommended for us?

Hope, it looks like fatigue and muscle weakness are both listed as possible SEs. http://chemocare.com/chemotherapy/drug-info/xtandi... I think if I were you I'd call your onc tomorrow, just to be sure what you're describing isn't concerning.

Gosh Hope I hope this is just fatigue and nothing more serious. Have you been able to stay hydrated and keep food down. I know when I get dehydrated badly I get the shakes bad just like very low blood sugar or a panic attack. Happens at leastonce a week lately for me. I have a hard time getting liquids to stay down the day after chemo. Try maybe a Popsicle or anything you like to drink to help with hydration. Just a thought and you'll be in my thoughts and prayers. I hope your onc has some ideas. Please keep us posted.

Hugs kimber

Romansma, I hope you begin to feel a bit better, and wanted to recommend coconut water (pure, not from concentrate) with fresh lime. Very hydrating and delicious as well! Try to have a protein with it, such as nuts, for balance. Hoping you'll be ready to roll soon!

Thanks for this post. I'm having surgery tomorrow and I plan to ask the Dr to order this test along with the regular ER/PR/HER2.

I hope you are feeling better. I wonder if they can give you some anxiety meds to help?

Romansma, hope you are feeling better today. I'm thinking that possibly the "off" feeling is related to the Xtandi - as was described to me by the clinical trial nurse and another nurse when I was on Xtandi. Some women did experience that as a side effect. Did you see your MO today?

Hope I'm so glad your feeling better😀 . Hopefully I'll be starting the trial next week. I got the calls today I tested positive. I'mhaving testing and meetings with the clinical trial time starting Monday. My onc called me around 4pm today thrilled that I was a good candidate for this trial. I don't know my percentage positive till Monday she was so busy explaining everything else I forgot to ask but will find out Monday. They cancelled my chemo too ..so I could be sure to meet the two week washout criteria. I'm a bit anxious but hopeful this will give us both good results. I'm starting to run out of chemos and she is hopeful this will be milder on my system. I have to do all new scans, Muga and bone too..next week will be hectic.

Kimber, I hope you have a long success on Xtandi. I am sure that you are relieved and happy to know this is another good treatment plan for you.

Hope, as far as nausea and vomitting - at my monthly MO appointments, the Xtandi trial nurse would go down a long list of possible SE's with me and check off and make comments as I answered. I remember nausea, diarrhea, constipation, etc. - the usual possible se's being on the list. But in my case, it was just the fatigue that I experienced - and it got much worse as the months went on. By the eighth month it was a severe, crushing afternoon fatigue. But reading the literature, not everyone gets that same fatigue. I know it was the Xtandi, because I was feeling less of it during the trial I was in for 4 months after the Xtandi trial and now on Ibrance/Femara - I have no fatigue whatsoever and I actually feel great with tons of energy. We are all so different with these drugs!

Wishing you both success and an easy a time as possible.