What happens after NED?

[LouisaMay]

Hello my lovelies,

I am on my third cycle of Letrozole and first cycle of Ibrance. I am incredibly pleased to report almost nothing so far in the way of side effects, in fact if I didn't know differently I wouldn't know there was a thing wrong with me.

I am thinking ahead here and also thinking optimistically. Does anyone know what percentage of patients achieve NED (no evidence of disease)? And how long does it last on average? Also, as far as I can tell if you are in America and reach NED you will generally continue to take Ibrance & Letrozole. However, I am in UK and my onc has said that if I achieve NED, I will stop taking Ibrance but continue taking Letrozole and will not be able to re-start Ibrance even if and when disease reappears (as I understand it usually does eventually). Does anyone have any information on this? Do I need to start campaigning for better availability of Ibrance in UK?

Best wishes to everyone, have a great weekend

xxx

[Teddielottie]

Hi! Just seen this post and wanted to wish you well with your ibrance /Letrozole treatment . Whereabouts in the U.K. are you ? I’m in Yorkshire and have been on ibrance , doing well , on 17 cycles (all at 125mg) and I am continuing on it , along with Letrozole , even after becoming stable by about 9 months ( that’s when I had the ct ) . I still think it is too early days to have reliable figures on how many achieve NED and how long it lasts . So far for me (with low volume bone mets ) I’ve been stable /NED for more than 6 months . I saw my onc this week and she wants me to continue on the 125mg dose ( there is some research that a lower dose of 100mg can be just as effective ) but she said as my bloods have always been good , and it is still early days in the research , she wants me to stay on my current level for the time being . Good luck x

[LouisaMay in reply to Teddielottie]

Hi TeddieLottie,

Thanks for your reply, so pleased for you that you are stable and doing so well.

I too am in Yorkshire and attend York Hospital. It's good to know that your bloods are good after 17 cycles. And it's good to know that Ibrance should still be available if I become NED. Thanks for your good wishes and best of luck to you too. xxx

[SeattleMom]

Hello, Louisa ! I’ve not heard of any patients that were taken off Ibrance unless their immune system became severely compromised. Ibrance does not CURE MBC but holds it at bay. Can’t imagine why doc would remove a med that is clearly doing its job? I would definitely reopen this discussion with your onc. God bless you! Linda

[LouisaMay in reply to SeattleMom]

Hi Linda,

Thanks for your reply. I am still on my first cycle of Ibrance and have only seen my oncologist once. There was a lot to take in and I was not at my best so it is quite possible I have misunderstood him. I am due to see him in a couple of weeks and will definitely check this out. Best wishes xxx

[SeattleMom in reply to LouisaMay]

I can definitely appreciate that. Those first few weeks I was in a fog of anxiety and depression (and disbelief.) It does get easier as you move forward, learn more about the disease and treatments, and just accept that you’ll be taking meds until that magic CURE arrives someday. We can dream and hope and pray! Take good care! XXOO Linda

[Nmartinez15 in reply to SeattleMom]

I start Ibrance 125 mg but today I got my labs after 2 weeks of taken them and my WBC went down to 1.4, so the nurse told me to stop taken them until go up and see the doctor. Did u count went down?

[SeattleMom in reply to Nmartinez15]

Yes, seems like everyone’s WBC drops. I’ve been on the 100 dose for about a year and WBC has gradually risen again. Good luck and God bless you! ❤️🙏🏻

[klhowe]

I am in the USA. My oncologist doesn't like to use the term NED. He is pleased with no progression. But many of my tumors are gone or shrinking. He says I will stay on the I brance and Femara forever, or until the breast cancer shows progression again. In the USA, it appears that we would stay on Chemo once achieving NED.

[LouisaMay]

Thank you for your replies and your kind thoughts. Let's hope we all get to stick around long enough for a proper cure. Gene therapy, immunotherapy, DNA adjustment and something the Israelis are doing involving attacking only cancer cells from a number of angles seem to be just some of the possibilities that I have read about lately. We live in hope! xxx

[kduck]

Once I reached ned but my doc say remission, he took me off of ibrance but I still took my monthly shots of falsodex and xgeve. My wbc goes up and down. I've been in neds for 1 yr without chemo. My doc say I could be in neds for years. As long as treatment still works. Keep the faith, trust your doc.

[lynnhbtb]

Congratulations to you! I was NED for about 5 years before recurrence in late 2017. I see no reason why you won't be NED forever -- power of the mind. Visualization works. My current tumors have gone down in size and I'm working on NED (in my mind and body).

Cheers, as they say on your side of the pond.

[kduck in reply to lynnhbtb]

Where you able to go back to ibrance, my doc told me that if it return we would go back to ibrance?

[lynnhbtb in reply to kduck]

My NED was after tamoxifen. When it came back, I took Ibrance, but then I had a recurrence on Ibrance and it switched from ER/PR+ to Triple Neg.,and ended up in liver. Now it's going down with systemic chemotherapy and immunotherapy.

[Kathyquilts]

I’ve been on Ibrance and Faslodex for 18 months. My last scan showed NED. I’ve had an increasingly difficult time with the Ibrance. The last bloodwork showed neutrophils down to 660 after lowering the dose of Ibrance. So, I’m not going to continue with Ibrance until my scans show a need. I will continue with Faslodex.

[lynnhbtb]

I"m on Taxol and Keytruda. Two weeks on, one week off. Had to get special approval for Keytruda because Insurance denied. it's not indicated for Trip Neg, although FDA just approved Tecentriq for it.