I am in my 8th cycle of an oral SERD in a clinical trial. It is amazing. I have never felt so well, at least not in the past decade, since well before I got mbc. I have to remind myself all the time that this reprieve is temporary, and I am lucky to be on something with minimal side effects. I try not to remind myself too much, because I am having a great time, and doing more. (Yesterday, I had a private 2 hour dance class, outside, with my dance teacher. Demanding but exhilarating. Sometimes there are perks from disclosing one has a terminal disease. I mostly don't disclose.) My main worry these days are that the LBBC Q and A doctor said that oral SERDs are very effective but short lived in effectiveness. I think she said they work for an average of two months. Also worrisome is that I have two very small barely detectable, spots with SUV above 3, or 4. Not good. On the other hand, tumor markers have dropped to the normal range on this medication for the first time since I was diagnosed 3 years ago.
Oral SERDs are not on the market yet, but soon, and i wanted to give the good news on possible effectiveness and lack of side effects. (I usually get every possible side effect; I rotate through them, including the less usual ones.) Just hope insurance will cover them. I don't know how much they cost: they are free in the clinical trial. Also, the regime is simple: I take a capsule once a day. That's all the treatment. Easy.
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TammyCross
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So interesting. My doctor is trying to get me on a trial for oral SERDS. It sounds like you’re having a great response
Although it’s disconcerting they don’t seem to be effective for that long? I read of a woman on another board for whom they worked for 11months and it was her 3rd or 4th line of treatment.
Out of curiosity what treatments had you had prior? And where are you doing the trial?
Ibrance and Faslodex first, for 2 years and a couple of months. Started the oral SERD beginning of June. Oh, I guess not as along as I thought -- but I am in my 8th cycle. I want more than 3 more months! ...Scan in February.
Sorry forgot the details. I am at Columbia Presbyterian, in Manhattan. Just lucky my oncologist is running the trial for this site. (The research nurses are actually, and are way more knowledgeable about the protocol. Another good thing is that I get all my testing done at the research infusion suite, so no waiting for hours for a blood draw with the masses.) The trial is Zeno Alpha: ZN=c5-001, Phase 2. I wonder if they are still recruiting for Phase 2. You should be able to find a list of hospitals serving as research sites, no?)
These are oral versions of Faslodex. There are several in development--touted as the next big thing by BIG PHARMA... But they are reputed to be somewhat more effective and bioavailable than Faslodex... And of course no shot! There are several trials in phase 2 and 3, and the first ones are slated to get FDA approval this year.
9 years is great! The oral SERD I am on, and I suppose all of them, blocks estrogen receptors. It has been extremely effective. Apparently I now have zero estrogen. (I wonder what that is doing to my mind, body, mood?).
You are very gracious to share this information. We all are helped when we learn about these developments. Wishing you all the best with this treatment!
Gave all the details in reply to pbsoup above, 18 hours ago. I will want to do another clinical trial after this, if possible, so happy to share and hope you will do the same if you find another trial.
Well, you are very lucky, then. Faslodex stopped working for me after a couple of years. I would have happily stayed on it. The oral SERD is more effective but doesn't work for as long . That is the problem with it. Short-lived effectiveness. If only that weren't so, I would be so happy.
I wonder if this is the pill that my doctor talked about that was going to replace Faslodex. She said it might come out soon. I would much rather have a pill than a shot. And avoid the long trip into Boston to get it.
Yes, not this one specifically. A couple of other pharmaceutical companies are developing this oral equivalent of Faslodex and are closer to getting it to market.
I took the Oral SERD under the Emerald clinical trial. I felt so well & wished I could have stayed on it so much longer. Unfortunately, I had liver progression after just a few cycles. I was so disappointed.
Oooh, too bad. It is great to feel so well, isn't it? Yet it doesn't mean that there is no progression, apparently, new met. Hard to believe. What are you on now, and how are you doing?
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