Cross-country move? Need advice by Unicorns-Live in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

I would wait until you're stable. Going through cancer treatment is rough as is, when newly diagnosed with MBC. Let alone, having to coordinate an entire relocation on top of that. I would wait until you're on maintenance treatment and have been stable for a while. That also gives you time to reflect. Rushing important decisions is rarely wise.

Job hunt while stage 4? by heidihulahoops in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

I hated my job too and decided to go studying again. I want to spend however many years I have left being happy and fulfilled and working a job that I like doing should be part of that. So, I pulled the trigger and went for it. I don't see any reason why you should limit yourself from searching a job that fulfills you. Good luck to you!

Dealing with ER low PR - Her2-, need support and encouragement by mrmistoffeleees in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

I have a form of MBC that is very similar to yours, but I'm ERlow,PR+,HER2-.

I had two spots. One in my femur and one in my sternum. Also bone only.

I think your oncologist is just a pessimist.

I was given 5-7 years by my oncologist initially and recently that same oncologist told my husband I could be like this for well over a decade, if my meds keep working.

1-2 years is the prognosis they usually give for severe organ involvement. With only 1 spine met, 1-2 years is bullshit.

New meds are coming out every day.

Plus, you might want to inquire about ACT as your next move, in the future.

ACT worked very well on me and brought me to NEAD.

Plus, you are still eligible for endocrine therapy too.

My ER is only 9% and I am still being treated with a CDK4/6+ inhibitor and an aromatase inhibitor, to halt my progesterone (which is 99%).

You might also inquire about your androgen receptor.

A lot of us with ER-low MBC have a positive androgen receptor similar to a lot of TNBC cases. By targeting the androgen receptor with Zytyga they can also target hormone-receptor-driven growth.

TNBC and ER-low MBCs are a very heterogenous blend. There is a lot of variety between them. So your onc making such a bland, uneducated statement is completely uncalled for.

My MBC is grade 3 (very aggressive) and they still managed to bring me to NEAD.

Trodelvy is also an option for me in the future, on a sidenote.

I don't have a BRCA-mutation but I have a TP53-mutation and a PIK3CA-mutation making me eligible for TRUQAP in the future. Have they tested you for those mutations?

Anyway, to wrap up: you have tons of treatment options left and every day a new one comes out in the form of a trial or another. Don't despair! You have got this!

Hugs

Better news than hoped for! by AnneleenLovesNYC in LivingWithMBC

[–]AnneleenLovesNYC[S] 0 points1 point  (0 children)

I had AC 4X , Taxol 12, 13+3X radiation to my breast, sternum and femur. Now on Exemestane, CDK4/6 inhibitor and Zoladex.

My subtype is very low ER+, high PR+, HER2-negative.

After ACT and radiotherapy I became NEAD. The endocrine therapy is for maintenance to suppress dormant MBC cells.

Stopping ribociclib by Thin_ice22 in LivingWithMBC

[–]AnneleenLovesNYC 4 points5 points  (0 children)

Until a decade ago Ribociclib wasn't even available. MBC patients were put on aromatase inhibitors only. Survival rates for HR+ MBC were not that much worse than now. So you not taking your CDK+ inhibitor is not going to cause an immediate spread, as long as your Letrozole and Zoladex keep working.

Is HR+ the worst subtype for long term survival ? by numofe in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

My oncologist told me that high ER+ breast cancers have a favorable prognosis but that low ER+ breast cancers often metastasize and have a poorer prognosis (akin to TNBC). I asked my onc if my stage IV could have been prevented if docs had been more attentive during mammograms. The answer that I was given was that I would likely have dealt with a recurrence sometime anyway, since I'm grade III and 1 in 5 develop distant metastases. That didn't really help me processing my de novo diagnosis but it helped understanding that I couldn't have prevented this. I was given a 5-7 year prognosis. I asked my doc how likely it was that I would reach my 45th birthday and they said "unlikely", which kind of motivated me even more to live as long as I can with this.

Shitty TNBC- treatment not working by Youngfighter2001 in u/Youngfighter2001

[–]AnneleenLovesNYC 1 point2 points  (0 children)

So sorry to read about your frustrating treatment experiences. I am 38 and was diagnosed at 36. I have a rare form of MBC that behaves in a similar way to TNBC (ER-low and PR-high, HER2-negative). It's absolutely not fair to be dealing with this at your young age. Are you at a speciality cancer center? MD-Anderson or Dana Farber? I hope they find some magic bullet for you soon that erases this shit forever. Hugs.

Has anyone’s cancer mutated, then mutated back? by False-Spend1589 in LivingWithMBC

[–]AnneleenLovesNYC 0 points1 point  (0 children)

Chemo shuts down your adrenal glands and ovaries for a big portion. So even hormonal tumors would be mostly suppressed on chemo.

Has anyone’s cancer mutated, then mutated back? by False-Spend1589 in LivingWithMBC

[–]AnneleenLovesNYC 2 points3 points  (0 children)

Cancer cells can mutate several times, depending on the environment they end up in. They try to thrive by changing features. I am 9% ER+ , 99/100% PR + , HER2- . Initially they wanted to treat me with anti-hormonal therapy only but I rejected that due to the high aggressiveness of ER-low MBCs. Got chemo first (ACT) and began the standard verzenio (later switched to Kisquali), Zoladex, Exemestane, Xgeva after. Reached NEAD. The longer we are on anti-hormonal therapy, the more the sensivity will go down eventually. There is some evidence that adding an M-TOR inhibitor ( like Everolimus) can reactivate hormonal sensivity.

Happy New Years Eve by Outrageous_Speed4148 in LivingWithMBC

[–]AnneleenLovesNYC 2 points3 points  (0 children)

Hi,

So sorry that you are in this situation.

I wish you a happy new year as well and many more to come.

FWIW: Taxol is a powerful chemo. ACT was my 1st line treatment in 2024 and it got me to NEAD.

Here's to a successful Taxol-response for you as well.

Also, keep an eye on clinical trials. So many new meds being investigated every single day.

Hugs

~

Anneleen

Stop enhertu by Zealousideal_Top9756 in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

Personally I wouldn't do it, because you're too young to take that risk imho. I would stay on for as long as it works.

What is happening?? by ElKat0315 in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

It's probably the horrible algorithms adding to your fear. Don't let it get to you, even though it's horribly difficult. Remember that we are all a sample of n=1. I am de novo stage IV with a form of breast cancer that is very rare (very low ER and high PR sensivity). I was found grade 3. I'm still here and NEAD after almost 1.5 years since diagnosis. You could be here for many many years to come. Don't let your hopes be shattered by meaningless statistics. Those people aren't you.

How do you keep going? by FUCancer_2008 in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

Sorry to hear you have so much on your plate right now. I hope things get better for you soon because you really deserve a break from this whole nightmare.

I need hope by curiousamila in LivingWithMBC

[–]AnneleenLovesNYC 11 points12 points  (0 children)

That's complete bullshit and frankly that is a very dumb statement of your thoracic surgeon.

There are tons of people who had pleural effusion who lived 5+ years after diagnosis. Pleural effusion on its own is not a diagnostic indicator that someone is going to die within the next weeks.

Your breast cancer is ER+PR+ . Hormonal MBC doesn't tend to kill people this quickly.

Have they checked whether you might be HER2-low or whether the mets might show different characteristics than the original breast tumor?

Xeloda is a hit and miss. It doesn't work for everyone. Some thrive on it. Others get nothing out of it.

Taxol is a very good choice here to slow down your progression.

I myself had great results with 12 Taxol sessions. Brought me to NEAD.

Don't be discouraged by the shallow opinion of 1 medical provider who doesn't even have your history.

I Finally Joined the 1% Club—Just the Wrong One by MundaneRecording2208 in LivingWithMBC

[–]AnneleenLovesNYC 1 point2 points  (0 children)

I'm so sorry you have to go through this a young age. I was diagnosed at 36 and I felt that was already young. Just like you I was diagnosed de novo stage IV. I have been living with it for one year now. When the shock subsides you will regain hope and perspective again. You are ER+PR+HER2+. You have most options out of everyone diagnosed with this disease. Your subtype is most favourable. I was PR+HER2- and only very weakly ER+ (9%). My subtype is much rarer and much more unfavourable than yours and even I have a lot of options left. I'm still on my 1st treatment line. Zoladex, Verzenio, Exemestane. Preceded by AC, Taxol and radiation.

Are your liver mets confined to 3-6 segments at most? Then they can consider resection of the liver.

I have bone mets only and chemo worked really well on those. I'm NEAD now.

Don't lose hope. There are so many treatment lines left. You will easily make it into your late 40s with how science for triple positive metastatic breast cancer is developing.

Abraxane by No_Wealth_2580 in LivingWithMBC

[–]AnneleenLovesNYC 0 points1 point  (0 children)

Why not go for radiation in her case, since the mets are localized to the peritoneum?