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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Hello! It’s been a while since I’ve been on this site. How’s everyone doing? I just had my 6-month PET and all clear still. Hope you all are doing well.
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Very quiet here. How's everyone doing. I October, I stopped letrozole and switched to Fulvestrant. I had change oncology center and the switch was made because I am NED and I had horrible side effects on Letrozole. I feel like I have been given my life back. My new oncologist was concerned about my quality of life or lack of it. My previous MO would only switch if I had progression. I know this is a tough time of year for many but I hope you are labeled to enjoy it.1
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Yep, quiet. I hope you have many years on fulvestrant. Re you done with the effexor now. I've had no problems with fulvestrant except a little tired. But I'm 68 everyone will say. Not for 7 years though.
I have been off it for a few months now because of a new primary breastcancer. TNBC - it requires chemo which should put my first IDC into deeper remission. But I need to restart the fulvestrant before I'm done with chemo. Maybe. Doesn't make lots of sense to me.
I had a few problems on letrezole but wonder why I can't use another aromatase inhibitor when they never really did fail me. Maybe side effects could be an issue again and i best keep my mouth shut.
Happy holidays everyone. I wish you well.
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Gailmary. I dropped to 75mg. That was a challenge. She will change it to 37 after Christmas. She didn't want to rush it through the holidays and I am glad. The 1st three weeks of the drop was hard. The next drop shouldn't be as bad. Fewer mg. Then I will decided if I want to go cold turkey or a slow drop.
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SEasons greetings one and all ...it's turned into a hot summer here in Sydney Australia…new glam swimmers for self gift to get the sand in the toes
Maybe starting Enhertu as makers have increased but lung gets still stable..9 years for me
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I wonder how everyone on this thread is doing. I was NED after just a few treatments in 2024 after first being diagnosed with MBC. I then took a treatment holiday and had slight progression, so went back on HP and had radiation in April 2025. Have been NED since. Have another PET this Friday. Hope all is still well. Even had negative Signatera in July.
My only problem is that in the past 4-6 weeks I have had lots of muscle and joint pain, and some fatigue. I did a direct switch from Anastrozole to Exemestane the end of June and felt much better until the end of September. Don’t know if this is all Exemestane-related or if the HP treatments are also contributing.
Has anyone out there switched from HP every three weeks to every four weeks? I asked my MO about that last year and she said she has a patient who is doing that. Herceptin has a 28-32 day half-life and Perjeta 18 day. That’s why they chose every 21 days to administer.
Anyway, I’m thinking that if I am still NED and have a negative Signatera test at the end of this month, I will probably ask if I can go to four weeks with the HP. Maybe that will lessen some of my side effects. Unless, of course, it’s all due to Exemestane.
Wishing everyone a fabulous fall!Hugs, Pam 💗
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livinglifenow, fingers crossed on your scans today. Everything seems to be pointing in the right direction so hang in there!
it's 18 years since I started chemo and the rest of my treatment journey, in which I got to NED after 6 cycles.
Not sure if you can still see my stats in the signature line since I haven't posted in ages on the metastatic threads. I'm ER+ PR+ and currently off any meds except for my thyroid which predated cancer. I just wanted to say that those endocrine therapies can have a ton of side effects. They managed it by switching meds, taking short breaks and eventually lowering doses. Exercise also helped me a lot.
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Hi ladies!
@livinglifenow , we're thinking of you and wishing you all the best for your PET scan today.
@heidihill , so nice to see you back on the boards! In case you want to make your stats visible again, here’s the link to add or update your diagnosis and treatment information in your signature: How to create and edit your post signature. Let us know if you need help with that.
Best wishes,
From the Mods
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@heidihill Thank you so much for the well wishes. I just woke up; can’t eat anything until after my PET, so am trying to not burn too many calories.
I would love to see your information on what all you’ve been through. It helps me to find others who are doing well.
I’m only 17 months into this MBC journey. And, as you mentioned, the AIs have some rough side effects. I also have long COVID, which started 5 years ago. I am much better than I was five years ago; however, I have to keep a rigid sleep and eating schedule. Whenever that gets off, like when I get a PET scan, it takes me days to recover. So, that doesn’t help with matters.
I agree with the exercise. I was an exercise fanatic in the past; now I try to do lots of walking and strengthening exercises.
Wishing you a wonderful weekend, and so glad you are off most of the meds!
@moderators Thank you for the kind words as well. This is a great site to share and get advice.
Best to all!
Hugs, Pam 💗
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@heidihill Well, I have returned from my PET scan, had Olive Garden take-out (I was famished), and have the results of the test. No evidence of metastatic disease!! Yay! The only thing of note was "Multifocal ground-glass pulmonary opacities with mild hypermetabolic activity, most consistent with an acute infectious or
inflammatory process." Just FYI: I did have "something" several weeks ago where I felt absolutely horrible. Lots of sinus issues and coughing. According to some online searching I've done, this is the most likely culprit and can take some time to disappear from scans. Not too concerned as I am feeling better now, but as I mentioned earlier, I take a long lime to fully recover even from mild sleep loss or eating at the wrong time. I must get back to a normal routine.Hope everyone is doing well!
Hugs, Pam 💗
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Hello Everyone! My Sandra had her last scans two weeks ago and she's still NED! 8.5 years with treatments and doing very well. Just went to Italy for a holiday with her girl-friends:) Hugs, Saulius
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@bsandra Saulius, great news on Sandra’s scans. So happy for you both! Enjoy Italy.
Hugs, Pam 💗
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