Not responding to Verzenio after some months: anyone switch to Kisquali? Help please
Hi all
My tumor markers dropped for the first few months on Verzenio/Fulvestrant, and now are climbing again. Scans didn't show progress last month but I'm terrified. Did anyone have better response switching to Kisquali and if so, what was it and how were the side effects compared to Verzenio? Verzenio and I are getting along right now, but maybe that's because it isn't working.//
Claire in AZ
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Claire, if the scans didn't show any progression, I'd stay the course. It's my understanding that tumor markers are unreliable and have to be backed up by evidence from scans (and sometimes more), before the treatment is considered to not be working. What does your doctor say?
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Claire, TMs can go up months (like even 6-8 months) before progression appears on the scans, so its a good warning light to start getting information about next steps, but not a reason to panic because you have some time and might want to try some things to see if they bring down the TMs. For example, you could ask to go ahead and do a Guardant genomic test, since you'd have to wait a month or so for that info anyway, so do it before the scans show progression, saving some time to research any new mutations the test picks up. If the test picks up an ESR1 mutation(s), then you would want to try elascestrant or one of the other oral SERDs in clinical trials. A PI3KCA mutation could have developed, which is often found in resistant cancers, and there are some good targeted drugs in clinical trials plus supplements like melatonin or celebrex might help reduce TMs in that case. No progression in scans is always good news!
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Hi thanks,
Cure-they did the generic Guardant test at dx time so we can use it, thankfully.
The scans showed no progression as of end of June, and even complete resolution from the bit of ascites I had developed (which I didn't know I had) so I'm simply baffled. I have messages in my portal waiting for my MO's response as to what happens next if anything.
It's hard to read posts of people who have gotten years of first line tx. I guess I'm angry, disappointed in my body, feel singled out…like why bother, in a way…I know this is all emotionally driven. Eventually I know I"ll run out of options but I feel it's coming in months, not years, as other stories are that I read here. You guys know what I mean.
C
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claire, I’m so sorry for what you’re going thru. When will you see your oncologist? I was diagnosed with mbc (bone metastases) from the start in my early 50s (after yearly mamos since age 40). I had iv chemo and radiation and a lumpectomy. Then I had about seven years on arimidex. When it failed, I did Ibrance and aromasin for 4 months which cost $$$ and failed. Then I took Verzenio by itself for 9 months, more $$$, terrible side effects and it was the hardest treament I’d been on including iv chemo. Lots of progression but still only to the bone.
My line of treatment since 2020 (4 years) has been Xeloda, an oral chemo. It’s a tolerable treatment and manageable side effects. (Maybe a possible next line of treatment for you?). But now my CA15-3 has been slowly rising for over six months. It had been steady at about 20 but each month goes up a bit and is now 84. I’ve had ct and bone scans that show no bone progression. However, now I have two paratrachael lymph nodes (in the throat) that are enlarged and I have a PET scan scheduled this week. It is unsettling and I am sad and concerned about it, but try to keep busy with things I like doing (reading, shopping, going to the pool) till I know more.
I understand feeling disappointed in your body; I once felt that way too. But I read a book about fierce self-compassion and it’s taught me to give myself lots of tlc. I wish I’d done it much sooner in my life. Even if you have to take baby steps, do something nice for yourself every single day. Cut yourself some slack, lots of it, in fact. You’re going thru a lot. Practice self care and don’t feel guilty about it. Sending best wishes to you.
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Hi dmm, I'd be happy with feeling hopeful enough to think perhaps there is another line of tx that will work for me. I am at Mayo and being seen by a breast oncologist, so there's that, which is good care, I think. I have monthly visits with oncologist, monthly labs, 3 month scans. I reached out to my MO to get a referral to Mayo's Integrative Med Department so I can work with them holistically instead of trying to figure it out and perhaps get info on supplements :do I take curcumin? What will it help?Hurt? What about off label tx, etc.? Meanwhile, I just wait. And meditate, go to yoga, hike. My final concern on top of these rising #s is that I don't like my MO as much as I wished I did-she's somewhat clinical and removed-though she's never been overtly dismissive.
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@divinemrsm I have followed your wise comments over the years and am very sorry to hear that you are facing a possible progression. I wish you well for the PET scan. @claireinaz I value competence over compassion, but it sure is nice to have both!
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claire, how nice that you have an integrative medicine option thru Mayo; I hope you hear from them soon.
tougholdcrow, thank you for your kind words. I had the pet scan today and an onc appt on Monday to go over the results. When I was at the onc last week, they drew blood for something called Tempus xf testing. The np was in for the onc and briefly said it was a tool for helping decide the next best treatment. Not much I can do at this point but see what the pet results are at the appt and what the Tempus test says.
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Claire - I don't know if this is any help, but I just had my labs done yesterday and my tumor markers rose ever so slightly. In itself that wouldn't bother me, but this has been happening now every month for the last 3 months. The increases are very small and the levels are still well within the normal range, however the steady nature of this rise has had me concerned, so I asked my oncologist about it. ( I've been on Verzenio and Faslodex for a little over a year now and have remained stable.) My oncologist said that the slowly rising tumor markers could indicate that this cancer is starting to develop some resistance, but not enough to allow for progression. He said that as long as scans are good and indicate stability, the tumor markers are just watched and monitored.
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Claire - my favorite MO (in FL, I'm in TX now) told me once my TMs (CA 15-3) got down in the normal range, they would bounce around a little, and they did. Recently, my CA 26-27 was very slowly climbing, and I had a subtle little something showing up in my liver on a couple PET-CTs. Biopsy showed nothing, and lo and behold, my last two PET-CTs have been clear. TMs rose some more, but then dropped back into normal range. With that, I've resolved to try not get too worked up (as I was) until there's really a solid indication that something is going on.
Also, forgive me if I've mentioned this before...my TMs spiked right after I started on Verzenio and took months to come down noticeably, but in that time my tumors were really shrinking. In hindsight, I think the tumor die-off may have been affecting my TMs.
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Hi all, my TMs never got down to normal range, and I've never been NED since dx. My TMs dropped dramatically the first five months and are now coming up. It may be resistance.
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