General Question

[Jenniferp2122]

good afternoon everyone!

I’ve written in here many times- just a recap my father was diagnosed with MBC in June of 2022 with Mets to the bone- he is currently on Ibrance, letrozole, xjeva, and lupron. He is a 64 year old and is super active playing 2-3 sports per day.

His first pet scan after starting treatment was on 9/14 and showed NED which was such a blessing. As his next PET scan comes around the corner in early January I can’t help but face a lot of anxiety. I’m an oncology nurse at Memorial Sloan Kettering, so oftentimes it becomes a little challenging being constantly submersed in cancer. To all of you who continue to battle this disease I pray for you each and every day!

My general question: I wanted to know if any of your oncologists have shared any information about the longevity of a line of treatment. Is it typically hard to achieve NED, and if it is achieved, does/ can it mean that the treatment line may work to control the disease for a while? Im not sure if there is data to support this. I know this is a very hypothetical question I’m just curious what y’all might’ve heard in your discussions with your oncologists.

thanks so much everyone

[SeattleMom]

Hi, Jennifer,

Your dad’s treatment protocol is the same as my first one in November 2017 (minus the lupron). I can tell you that this regimen was successful for me for 32 months before mild progression in bones only. My mets were all located in areas of my spine and ileac.

My second treatment was faslodex monotherapy which lasted 7 months. Since then, I’ve been on a variety of protocols, with some cancer eventually progressing to my liver. I just this week began a new therapy called enhertu which I’m hoping will not continue to fill me with the utter fatigue that is my primary side effect.

God bless both you and your dad on this journey. I hope he stays NED forever!! 🙏🏻🙏🏻💗💗

Linda

[Kerryd22]

I was on Letrazole first but it did nothing so I had six months of Abraxane. Then started Afinitor and Exemestane. Stayed on Afinitor ten months. I’m still on Exemestane 5.5 years later. The oncologist suggested I could get two years out of Exemestane but they’ve long stopped trying to make a prediction. I’m not NED nor do I ever expect to be but I’m stable and have been for seven years out of the 7.5 years since I was diagnosed de novo.

There’s no way of knowing how anyone will react to treatment and when it will cease to be effective but from the very start the doctors told me anything they said would only be a guess and they aren’t willing to do that.

I now only see an oncologist every six months to review the scans and they thinking of extending that out too. I’m not sure if I’ll go to a 9 month rota or an annual one but I never thought I’d be doing so well when I was first diagnosed. Especially as the first 12 months involved a lot of hospital visits for radiation treatments, IV chemotherapy, heart tests, MRIs, CTs - it seemed endless but now I’m here. I’m in a good place and I hope to stay here for a long while but time will tell.

[Norma1959 in reply to Kerryd22]

Hi,

I had a scan in CT tap in November and I’m stable . My Oncologist said he will never say NED for MBC . The best he said is NEAD if it makes me feel better .I’m 3.5 years on my first line of treatment . I found it interesting that you stated you would never be NED . I’m in Ireland but my oncologist trained at MSK . I’m totally confused . I had breast cancer in 2012 . Did ACT chemo and radiation . 7 years on Arimidex . A routine virtual colonoscopy found a lesion on my spine . It was mbc and it had changed to HER 2 positive . I did 2 treatments of taxotere but had to stop because of side effects . I’m on Herceptin Perjeta and zometa for my bones . I had Cyberknife on the lesion and it’s scelerotic (sp) .. stable is as good as it gets . Don’t get me wrong , once I’ve no progression and can stay on this regimen, I will be happy . Is it semantics ? Doctors differ etc ?

Sorry for the rant but I’m tired telling people “no I’m not finished my treatment nor will I ever be “

[Kerryd22 in reply to Norma1959]

if I was NED I’d prefer to say I’m in remission. Isn’t that what it means? My disease is stable but it’s not inactive. On one scan maybe the right hip is active and the next time it’s the left. Overall no new lesions are seen and so they report stable disease. It seems to be very common in the USA to report NED but I don’t know why nor does it really matter to me. I’m not in the USA after all. I was told at the start that people are living for years at stage four and while I know not everyone makes it to the five year mark, if you do, statistically you will probably make it to 10 years. I don’t think too many make it further than 20 years but I do know one lady who has just celebrated her 21st year so it can be done. I’d like to collect my pension but that’s still four years away. But there’s no indication yet that I need to change treatment so that’s a positive.

It annoys me when people ask if I’m cured because I’m still here. I don’t feel like telling people that there’s no cure for stage four cancer and a little research on their part would be a good idea. People are frightened of cancer and they don’t know what to say to us but sometimes nothing would be better than assuming medical science has an answer for everything.

[Norma1959 in reply to Kerryd22]

Thanks for your reply . It must be an American terminology ? NED . Because my understanding is ( at the moment ) there is no cure for stage 4 cancer so it is lurking there somewhere but possibly inactive.

[Gingerann1 in reply to Norma1959]

NED just means there is no evidence detectable on scans. You are correct that it is lurking somewhere, just can’t be seen. Until there is a cure this is as good as it gets! Got there in March. Hoping my next scans in Feb shows still NED, that would be almost a year NED. Will continue on my first line treatment until it stops working and scans show it rearing it’s ugly head somewhere. Praying for a cure for all of us.

[Nocillo]

My first oncologist said he thought 10 years wasn’t impossible when I was diagnosed. It’s been almost 8 now. My first line of treatment lasted almost 6 years. My current oncologist did say that subsequent treatments tend to last for less periods of time. I’m almost 2 years on second line of treatment. Each person is so very different though. Good luck to him!

[AvidBooklover]

I am a patient at MSK. Love the MSK folks!! When they found the cancer in his bones was it de novo? Also, more than one met? I was originally diagnosed in Oct 2010, then Met in hip bone in April 2019. Been on Ibrance, faslodex and xgeva since then...and three targeted rads..and knock wood still okay. Do reach out one to one if you want to know more. I am being treated in Basking Ridge.

[jersey-jazz]

Dear Jennifer -- In my opinion, you work at the most wonderful place for treatment of cancer in all of its' manifestations. I am privileged to be patient there,, up in Montvale and in NYC. To respond to your question, There has never been any time or date set by anyone to me. Something of an exception to that is when Dr Wasserheit (MSK retired) told me back a ways that I was going to, "----- live a long time.".

[Gingerann1]

hi Jennifer- I got to NED after 15 months on Ibrance and Fulvestrant. That was 9 months ago. My MBC was diagnosed as a pleural effusion in my lower left lung. My scans were moved to every 6 months so in Feb I will see how things are going…My Oncologist said this first line combo may work “for years” for me. Of course with MBC the cancer is always lurking somewhere so until there is a cure the best we can hope for is NED and long periods of stability on our treatments until it rears its ugly head somewhere else. I am thankful for each day and wish your dad a long period of NED. For me the last 9 months have been so peaceful, allowing me to stay strong to continue to fight. The new drugs and possible cure are in the pipeline to help beat this thing. Prayers and a big warm hug for you as you continue to support your dad. Enjoy the holidays…. Lin

[troutgal]

Jennifer - Thank you for your prayers and thank you for all you do as an oncology nurse. Prayers for your father also. I was diagnosed with stage 3 BC in 2006 and underwent various chemos, surgery, more chemos, radiation followed up with 12 years of Femara/letrozole. The femara kept me NED for many years although after 10 years I started having some back pain. In the 12th year (2018) , while my mammogram was fine, and continues to be so, spots appeared in annual chest xray. More tests,scans revealed MBC bones/spine, liver, lung. Went on Ibrance (125) and Faslodex along with zometa infusion every 12 weeks. NED has not been part of any scan report nor part of our discussion, some of the scan reports do talk about reduction of "mets" along with "no progression". Also the word "stable" has not been used. But I certainly feel things are being "maintained". My oncologist and PCP have been on top of everything along the way. My journey has included a stroke, a heart valve replacement (TAVR) and kidney disease. All treated compassionately, and with care. 1921, TAVR was done in a timely fashion so I could go on my annual flyfishing trip to Michigan. Words like NED, stable, remission, etc are not part of my discussions with my docs. But all is wonderful and at 74 I feel really good. Have pain med for use when I need it...very rarely, but decided not to "tough it out", but rather address the pain as I get it. Usually with Tylenol...once or twice a month with something stronger. Just got back from a 4 day trip to Pittsburgh. Have trips to Michigan, Massachusetts and PA planned for next year. It sounds to me like your father is doing well and I love that he is still active in sports!

[mariootsi]

I think what I have learned through this MBC nightmare is that nobody can predict anything about what this damn disease can and will do . Each of us have her own individual journey and each treatment affects everyone differently!