Most recent scan showed no evidenced of disease. when i was first diagnosed my oncologist told me that MBC is not curable...am I getting bogged down with semantics here?
Why can't we stop the meds once we reach NED? I of course will discuss this with my doctor I am just genuinely curious how this works going forward.
My mets were to two ribs & I had PE, all of which have resolved. Currently taking ibrance 125 and letrozole 2.5
That was my question too… NED doesn’t mean that no cancer cell are present or growing in our body, because scans catch activity of masses from 5 millimeters.
That doesn’t mean that some people can stay NED for years, we’re all different!
I have also had clear or NED scans , for almost 3 years (3.5 years on Ibrance / fulvestrant). Silver126's comment is correct - there are still cancer cells circulating in our blood and or lymphatic system . The NEAD/ NED scans are great but scans can't pick up tiny scans so we are kept on systemic meds to keep these cells from growing . There is a recent thread of long time Ibrance users (some 7 years or more ) which gives me a lot of hope !
Great news! 😀
my neighbor is in her 23rd year of living with MBC! There is hope…
It seems to me that some cancer patients do take drug holidays. You can always restart meds if it proves necessary. I'm 77 years old, and cell changes tend to be slow so I'm planning on taking breaks from all the side effects cancer meds create.
great to hear HazelGreen! Being older with cancer is a secret plus…yes slower cell metabolism helps. If you ever think about a drug holiday, you can first consider the alternative dosing that allows you to take IBrance on 5 days and then off for two…without any interruptions . It really lightens any side effects yet you still benefit from the meds. I was very I’ll from side effects and researched this study…it has made a world of difference in my health but I’m still stable.🤞🙏.
What side effects did you suffer? Can you direct me to the study so I can show my Onc? I suffer terrible side effects
I think the alternate schedule for iBrance (pabociclib) is still being studied.
I have just gone ahead with scheduling my cancer drugs as seems best for my body. As far as I know, no results have been published for an alternate schedule for Kisqali (ribociclib). Five days on, with two days off, is not only easy to schedule, but also means a full 20 days of cancer meds in a 28-day cycle (only one day less than in the standard cycle).
My thought is that I only have one body, and it's mine to decide how it's treated. I simply don't bother telling my oncologist who doesn't read research findings at the best of times. Regards, Cindy
Betty… I had neutropenia and depression with fatigue. Just search this site for ibrance alternative fixing. You’ll find a few conversations about this.
jons-online.com/web-exclusi...
Here’s a link that evaluates and explains the efficacy of this alternative dosing…
Actually, I'm following that schedule even though I'm taking ribociclib and letrozole. I started it last October after I again had to take a second week off due to low neutrophils. It seemed to me that I was giving cancer lots of time to regrow in that second week. Now, I find my neutrophils are often in the normal range (and never below 1.00) as are my cancer markers. Cheers, Cindy
wow that was my view exactly ! I actually take more pills now in a 35 day cycle (3 weeks plus 2 weeks off) than before. So glad you’re benefitting from this dosing regimen… best to you ! Liz
I thought that everyone had cancer cells circulating but healthier people with good immune systems could clear them from their body. The suggestion is that eventually our cancer cells find a different pathway and infect an organ which is more difficult to eradicate. It’s very confusing. Maybe that’s why they now call it a chronic illness. Chris
yes, chronic illness that you have to keep in check. 😇🙏
Ibrance and Letrozole seem to be a winning combination for some people. I think carry on with the meds as long as you are NED and they can be funded.
I got confused too about the difference between NEAD and ‘stable/ not progressing’ when no new areas of interest were seen on scans and other lesions were schlerotic. Onco said cancer was def there - just not active!! I had 19/34 positive nodes (some extracapsular) so technically a high load of cancer cells floating round so I will take anything/everything on offer til it stops working!
hi there! I am NED as well for almost 17 months. MBC is not curable, at least for now. The meds are the reason we got to this status and by staying on them will help keep us this way longer. Cancer insidiously finds a way eventually to mutate and that is when progression occurs. My Onc is hopeful that I’ll have a long run on Ibrance and Fulvestrant until they stop working and there is progression. The Ibrance keeps the CDK 4&6 cells from dividing and multiplying and the Fulvestrant (like Letrozole) is an Aromatase Inhibitor that inhibits the estrogen that feeds cancer in the case of MBC. If we don’t stay the course on our meds these things will start running amuck faster and speed up progression. Hope this helps and you have a long time with NED status before having to move on to the next line of treatment.
Hi! Congrats on your status! It’s the best position to be in with MBC. I know you’d like to go back to a pre cancer life because there is “no evidence of disease”…but do consider why you are NED…the meds are keeping you that way. A short vacation from meds or …an alternative dosing that mitigates those awful side effects may work… but I would be afraid to leave the safety of the med fortress. Best wishes for a long and happy survival.🙏
You can choose to stop whenever you want you could even continue scans and then go on tratment when or if you get recurrence. It is officially incurable. Some people live long and well with it but they are statisitical outliers.
Quite simply... the cancer, at stage iv, will come back one day. So it can't be cured only managed.
Sad but true until there is a cure…
Hi - how long till PE cleared up? I've been on Ibrance and anastrazole for a year with only slight reduction in the fluid
Did you have any fluid drained before treatment? I had a PE and it was initially almost completely drained by a thurocentesis (sp) and it completely cleared in about 8 months on Ibrance and Fulvestrant. Have been NED for about 17 months now. A lot of folks have had it drained and the fluid starts to accumulate again. Hope you can get some answers and can get to NED.
no i never had it drained - I guess my onc never thought there was enough fluid to need it. My cough improved after a few months but it's not gone and I wish it was
I would revisit that and ask about the procedure. My fluid was considered a “moderate” amount and they removed 400 cc’s (however they measure). So glad I had that procedure as it really did speed up my path to NED.
I also had PE and initially had fluid drained every ten days then gradually the fluid drained decreased over the next six months. As of today I haven't had any fluid drained for three months. I am on iBrance 100 and letrozole 2.5 .
mBC dx July 2015. treatment: Ibrance, Letrozole, & quarterly Lupron started Aug 2015. still on first line of treatment and lowest doses; Letrozole switched to Anastrozole in 2015 and Lupron to Zoladex in 2020. NEAD since March 2016. the onc chooses NEAD because A= Active. in Nov 2022, i started ctDNA testing through Signatera. it can find cancer @9 months sooner than a scan or tumor marker testing. the three (of eight) blood draws for Signatera have been "0.00" there is no trace of (active) cancer in the body. soon it will be time to revisit "treatment for life" and incurable (healing). i like these books: CURED by Jeffrey Rediger, MD and Radical Remission by Kelly A. Turner, PhD.
I have asked the exact same thing of my doctor. The thing is.... you're never cancer free. They just don't see it on your scans. All you need is one cell to spread very quickly to your lungs, brain, other bones, liver. The meds keep us from that.
I just quit Letrozol and started Aromasin this week, with 100mg Ibrance. Welcome to life!!!
We can't stop the meds because if we do it will come back. The meds is managing it/holding it back.
As for the term 'NED'... no evidence of disease... if you add the words "at this moment in time" it will make more sense.
Oddly enough I raised the term NED with a very experienced physicist friend of mine. He agreed it is confusing when used in the context of metastatic disease.
Best wishes for many good years to come.
Louise x
The reason you have NED is because of the meds!!! Stage 4 cells lurk behind the scene and waits to figure out how to get through..I am thankful you are NED what a blessing!
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