Stage IV NED crew : lets support each other
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As for so many here, my wife's markers have also always been in tact: CA15.3 average is ~20 (norm is <32), CEA average is 0.9 (norm is <5). Our MO said that in her practice ~50 % of patients have markers that are always normal in metastatic setting and do not change in case of progression/regression. Olma had a good point for consideration: can tumor mutations (TMB) correlate with markers, i.e. if TMB is not detectable in liquid biopsies or blood, then logically why would markers change? Have to "research" more about it… :)
Saulius
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I feel like I can't catch a break. 2.5 weeks ago my husband suddenly went deaf in his right ear. A week and a half ago i got a call that my oncologist had a medical issue and was not returning to the cancer facility and I would see the PA and decided on a new Dr. Now today my sister -in-law called and my brother has early stage cancer surgery. My dad had cancer 35 years ago and my brother is a wreck. He was not ready to talk to me. I remember what my dad went through and it was rough. But things have changed so much since then and even seems like it changes daily any more. Thanks for listening.
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Oh @brutersmom, we're so sorry to hear this. We're keeping your brother in our thoughts!
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@brutersmom , I am so sorry - that is a lot to worry about. Sometimes , when it rains it pours . I hope your brother's cancer dx at early stage is treatable and your husband's hearing loss is , too.
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On my last visit to the oncologist I decided on a new oncologist. I see him at the end of this month. I want to have knee replacement surgery because me knee hurts constantly and interferes with sleep and doing thing I enjoy like walking. I ask the PA if I would need any scans before surgery. I am coming up on my one year anniversary of stage 4 cancer. I was told that because my ca27.29 dropped to the normal range and my last scan showed no cancer I would only get a scan if my CA 27.29 went up or I had a new pain. Now my question is if it is normal for people who are NED to not have scans and only rely on tumor markers.
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Brutersmom, I don't think normal. I would be comfortable with once a year though. I've been stable/NEAD since first being treated summer 2017. Spacing of my scans varies. I think I went a year once. Currently watching tiny lung nodules at 6 month intervals. My tumor markers have always been pretty low. I could always get scans sooner if I complained long of pain. You certainly don't want too much exposure and set yourself up for another cancer.
You are highly er+. That's a good thing. I know nothing of micropapillary cancer. What grade is your cancer? Mine is a slow grade 1. First in 2008 then a met in 2017.I think that makes a difference and my dr keeps that in mind. Is yours slow if first in 2015 then mets in 2023?
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Gailmary. I am a grade 3 and high ki67 which is proliferation rate. It grows fast. I was to in 2015 it has a high rate of recurrence usually 2-3 years. I was 7.5 years and a distant recurrence.
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happy to post on this thread to say I am NED
Diagnosed in 2018, put on Kisqali/letrozole combo and PET last week shows no sign of cancer.
will start monthly blood checks, and scans if my Onc thinks I need them, otherwise every 6 months.Was on a 3 weeks on 1 week off regime with the kisqali and now on 2 weeks on 2 weeks off. Continuing with the daily letrozole.
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Kanga_roo, great news !
Thanks for sharing - it's important to celebrate these victories :)
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Thank you for sharing such wonderful news! Delighted for you and thank you for giving the rest of us hope.
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Kangra_roo. Congratulations on the great news.
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