Hello. I read often but seldom post. I was diagnosed with MBC in late January 2021. Have been in Ibrance 125 and Faslodex since February 2021.
My mets are in my liver only. I have been asymptomatic from the beginning (MBC found in scan for another issue).
I see my oncologist monthly and like her very much. I have PET scans every 3 months. Brain MRI annually. Has the last PET scan on Thursday, 4/7. Report wasn't on the portal prior to my morning appointment yesterday (Monday) morning.
Onc said I had no evidence of disease!! Yay! I am thrilled, of course. I made her say it twice to be sure!
Last night I went to the portal to read the report and look at my blood work. The report says “No FDG avid metastatic disease.” Are the statement from my onc (no evidence of disease) and the report statement the same thing ?
Many thanks for your help, and best wishes to all.
♥️♥️♥️
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1711JPD
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And, man!, good thing you "accidentally" discovered the disease!
Re: your question.....in my decidedly inexpert (but experienced?) opinion: Yes, they are saying the same thing.
The PET scans involve infusing / IV radioactive isotopes which are attached to glucose...molecules?. Since the cancer sucks up glucose, it also sucks up the isotopes in the process. So the scan measures the light produced in cancerous areas vs. the "background".
My reports have always mentioned "SUV uptake" or "FDG avidity" to describe how much it lit up in various areas. The numbers range...e.g. mine have been between <2 (which has been described to me as "not medically significant", i.e. don't count/matter, to the mid-teens.
So it sounds like your PET showed *no* areas that lit up! Fantastic!
Hi Praising - I would say that "stable" is great...while NEAD is "amazing!!". From what I understand, "stable" means whatever was seen last scan is still there, but it's not growing and there are are no new mets. Not sure how long you've been at this, but *many* of us remain "stable" for years, which...as noted!...is GREAT! So congrats on your scan results!
Hidden thanks for explaining that because I was NEAD last year but was told in Jan 2022 that I had "mild" progression on my bone but was switched to a new med. My last scan was stable and the doctor said my scans looked good. When I read the PET scan results all I read was activity still shows but no new activity. I felt discouraged but prayed about it and thank God because it could have been worse. Your post is reassuring ... thanks for sharing.
Amazing! Very happy for you! Im on that combo for only 1.5 years- so its very encouraging! Thank you! Are you still on the same dose even if you are NED? Also did you do anything else apart these 2 drugs to help it? Thank you in advance for your reply!
Thank you! My Ibrance has been 125 from the start. Faslodex is the same. I take some vitamins but not a ton. I try to eat healthy but dont always succeed (I got the chocolate gene!). I do yoga to try and stay calm (mixed results). I am generally a positive person.
I think I’ve just been blessed and lucky. I fully anticipate having “scanxiety” in 3 months before the next PET scan. I dont know how long the NED will last.
I send my very best wishes to all. Thank you for your kind comments and support!
Congratulations! That’s great news I’m very happy for you. I’m on Ibrance, Femara and Zometa combination for almost 5 months….fingers crossed I’ll get there too.Best wishes Zoe xx
"The use of the radiolabeled tracer 2-deoxy-2-[18F]fluoro-D-glucose (FDG) for oncology imaging accounts for the majority of all PET/CT imaging procedures since increased accumulation of FDG relative to normal tissue is a useful marker for many cancers."
"The use of standardized uptake values (SUVs) is now common place in clinical FDG-PET/CT oncology imaging, and has a specific role in assessing patient response to cancer therapy. Ideally, the use of SUVs removes variability introduced by differences in patient size and the amount of injected FDG."
So, if I ever read a similar statement to your wonderful message, I now know that FDG is a radiolabeled tracer used in PET/CT scans and standardized via SUVs for interpretation by the radiologist.
I don't know--I think so--but I have to say, my hat is off to you tolerating 125 mg of that stuff. I was exhausted on 125 mg, feel fine on 75 mg, and that dosage seems to be doin' the trick--but hey, six years! (Maybe I'll only get four years?) Still, quality of life and all!
That is awesome news !!! I had bone and liver, bones were healed by ibrance/letrozole. Liver still grew 2nd line started fulvestrant/letrozole. First CT today with this new meds. I am looking for NED as well !!! This cancer is tricky, what works for some doesn't work for others. Celebrate your win ❤
That's great news! Getting such a good response to treatment this quickly bodes well for you! I'm a long timer (18 years with MBC, well really 18 years since it was discovered, onc suspects it was there for at least 3 or 4 years before that) and have known alot of women who have gotten l o n g periods of stability with Faslodex. Some of us have NED and some don't but it is sure worth celebrating! I hope you continue to do well. Keep us posted--it's always wonderful to hear about those of us who are doing well.
So happy for you! I have been celebrating the same news of my NED status since my March scans. We are on the same therapies for about the same length of time. Seems like a lot of us are getting these amazing results with the Ibrance/Faslodex combo. My Mets were a small tumor and pleural effusion on my left lung. Tumor was gone in 2 mos. and the pleural effusion was totally gone in 15 mos. Enjoy your great news and wishing you many more years of remission! Lin
Thank you so much. Best wishes yo you, too!Do you use Cold Spray to num the areas prior yo Faslodex injections? I have found it to be very helpful for that pain. It is also $4 a can on Amazon.
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Has anyone asked for a change in scans?
PIQRAY update
Rising CA15.3 and 27.29 but no PET evidence of anything
NED
