H3B-6545 Trial (Estrogen Receptor Antagonist)

mikainsb

I am taking part in the H3B-6545 (an estrogen receptor antagonist)Trial. I was wondering if there is any one else in this forum taking part in this trial. It would be nice to know if anyone is having the same experience I am. Thanks!

EV11

mikainsb-

I am not on this trial, but did look into it this fall. I am very interested in learning how you do on it. I am currently on a trail for an oral SERD, and have an ESR1 mutation; I am keeping this trial on my list of possibilities should I not have a good response from my trial. I would have to travel to CA (from Portland) and so it's to an optimal location.

Please keep us updated as you accrue time on trial, and I hope you have a durable good response! Thanks for being willing to undergo the added appointments, tests and scans that a trial require. I appreciate the bravery and good will of trial participants everywhere. This is how new treatments come into being for the general population.

I wish you well!

Elizabeth

mikainsb

I have finished the first cycle. At first I was ecstatic, cause my pain diminished. Then I was petrified, because my tumor markers skyrocketed up as I progressed on the trial. Now my markers are slightly less than their highest point.

The study itself is taking about two days a week of time, a whole day of EKGs, a whole day of multiple blood tests, etc. So much time! But as I am on it longer, the amount of time is less.

I will know more at the next scans.... December.

Fingers and toes crossed. There are virtually NO side effects. I had no idea how much I was putting up with on Xeloda. This drug is a dream. If it is working and there are virtually no side effects... how amazing will that be!!!!

likestobike

mikainsb - How did you decide on this trial? Do you have an ESR1 mutation or any specific mutations or markers that your MO thought would be beneficial for this trial?

I'll be following your progress to see if this is a potential trial for my mom. She is currently on Xeloda after having pneumonitis on the alpelisib (piqray) trial.

Have you checked out the clinical trial thread? https://community.breastcancer.org/forum/8/topics/868597?page=20#idx_587 I'm sure people will be interested in hearing about your experience.

Andrea

mikainsb

Hi LikestoBike,

I don't feel I actively decided on this trial. I failed Xeloda. Gemzar was the next logical step. But my oncologist at UCLA always does a scan of possible studies at decision points. This is what came up and was recommended. I was a very good fit for this study because I am extreme ER+, I think I measure 90% ER+. At the time of my enrollment, my genetic results were not yet available. But I am also ESFR1, which makes it also more likely this drug will be a good fit for me.

For me personally, it was a choice between Gemzar and a gamble on 6545. Given the choice between a chemo and a hormone therapy, hormone therapy definitely seemed the more comfortable choice. I super want this drug to work because it is so comfortable compared to Xeloda.

I will cross post on the clinical thread. Thank you!

likestobike

mikainsb-

How are you doing on the trial drug?

Andrea

mikainsb

Well, I have been on H3B-6545 for about 15 months. For me, it has been an extraordinary drug. My quality of life has been fantastic. The primary side-effect, bradycardia, was well managed by a really diligent exercise routine which ultimately got me in much better shape than I have been in for most of my adult life. (I hiked 32 miles last week.) My scans are still very good, but my markers are through the roof. I will probably be leaving the study soon.

I had the ESFR1 mutation which seems to have a high correlation with this drugs efficacy.

All the best to all.

Cure-ious

Mika- Congratulations! Can you also comment on the ESR1 mutation thread? thanks

https://community.breastcancer.org/forum/8/topics/...