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No Evidence of Disease!!

1711JPD profile image
43 Replies

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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43 Replies

Wow! Yay!! That's fantastic! :)

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!

Thanks for sharing your great news... :)

Lynn

1711JPD profile image
1711JPD in reply to

Thank you very much!

Praising profile image
Praising in reply to

My cat scan said stable. Is that the same as Ned? No new mestasties

in reply toPraising

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!

Suzie-Wong24 profile image
Suzie-Wong24 in reply to

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.

Tam-56 profile image
Tam-56

Congratulation on your great report! I have been on Ibrance and Letrozole nearly four years with NED status!

1711JPD profile image
1711JPD in reply toTam-56

Congrats to you, too! That is very heartening to hear!

R7777 profile image
R7777 in reply toTam-56

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!

1711JPD profile image
1711JPD in reply toR7777

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!

❤️❤️❤️

Joyce

1711JPD profile image
1711JPD in reply to1711JPD

PS. I will stay on the Ibrance 125 and monthly Faslodex injections.

R7777 profile image
R7777 in reply to1711JPD

Thank you Joyce for your reply!! I wish you all the best!!! ; )

AutumnLove profile image
AutumnLove

Excellent news!🙏🏼🙏🏼❤❤

Discocat profile image
Discocat

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

JMMK profile image
JMMK in reply toDiscocat

Me too Discocat!I'm on ibrance 125mg, letrozole 2.5mg.I have scans next month 🙏 I'll get NED/stable.Congrats 1711JPD! Wonderful news 🙂

1711JPD profile image
1711JPD in reply toJMMK

Thank you, and I will be sending positive vibes your way! ♥️

Aprilfoolz1 profile image
Aprilfoolz1

Great news! Congratulations! I agree with all above that the report and your oncologists statement are the same :)

Winner123 profile image
Winner123

Congratulations, that's what we all want to read/ hear! Well done, good luck forever. XXX ❤️

susiemarmite profile image
susiemarmite

Brilliant news very pleased to hear!!

Hazelgreen profile image
Hazelgreen

If you google this link: ncbi.nlm.nih.gov/pmc/articl... you come to an article which indicates the following:

"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.

Congratulations!

Hugs,

Cindy

U2Rocks profile image
U2Rocks

Great news!

Melpub profile image
Melpub

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!

Debbigbang profile image
Debbigbang

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 ❤

Deb 🙏

Aquamoron profile image
Aquamoron in reply toDebbigbang

Wishing you good luck with your scans today, Deb!

1711JPD profile image
1711JPD in reply toDebbigbang

Sending you my very best wishes for positive bews from your scan today! ❤️

mariootsi profile image
mariootsi in reply toDebbigbang

Good luck Deb

Phillipians4and6 profile image
Phillipians4and6

Thank you Lord!!!!!! This is fantastic news

Aquamoron profile image
Aquamoron

That is wonderful news!!!!! So very, very happy for you.

PJBinMI profile image
PJBinMI

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.

Gotskills65 profile image
Gotskills65

Thank God for miracles!!!!

mariootsi profile image
mariootsi

Welcome! That's amazing news!

Gingerann1 profile image
Gingerann1

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

1711JPD profile image
1711JPD

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.

Cold spray for numbing
1711JPD profile image
1711JPD in reply to1711JPD

Sorry for typos. Note to self: you have glasses for a reason!

RLN-overcomer profile image
RLN-overcomer

Yesss, and hooray😇 Enjoy this great news. C-E-L-E-B-R-A-T-E👍

Wintervt profile image
Wintervt

What great news, I am truly happy for you!

SabaAK profile image
SabaAK

❤️❤️🙏🙏

elle3054 profile image
elle3054

Congratulations and God Bless!!

1711JPD profile image
1711JPD

Many thanks to you and everyone for their kind remarks. ♥️♥️♥️♥️

Gibby21 profile image
Gibby21

That’s great news… and honestly I didn’t know this was a possibility! Happy for you!!

love2golfwell profile image
love2golfwell

Congratulations on your wonderful news! I hope you continue to do well on these medications. Sending hugs

Kcap430 profile image
Kcap430

Congratulations on your wonderful news!! It’s what we all aim to achieve! Hoping you have continued success with your meds for a long time.

1711JPD profile image
1711JPD

Thank you very much! Best wishes to you!

Corrina97 profile image
Corrina97

This is amazing news for you to get!! Well worth celebrating!!!🥰x

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