Hi all of my beautiful warrior friends!!! I would like to know what you all have had as far as treatment.
I am really most interested in people like me, who have had NO mutations. I am ER+, HER2 LOW
I am about to start on Enhertu, but my doctor is hedging to the possibility that I am running out of options.
I am starting to feel so worried that I am really out of options. I’ve only been on Ibrance/Anastrozole and then Ibrance/Fulvestrant (the BEST). How can I possibly be running out of options????? My God!!!
😢😢😢
Thank you,
Jody🩷
Written by
CTGirl1962
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My mom is also her 2 low. She did ibrance for 2 years 9 months with femara
Second like treatment anfintor didn’t work
Third line treatment Xeloda present treatment shes has been on since Nov. keeping everything pretty stable and shrinking. She has overall felt great on this.
Hi Flower1513, I totally forgot I did Xeloda!!! It was so bad, I think I blocked it out of my mind!! Haha! Not funny, though. I was on it for 4-5 days and I felt like I was going to die. It was very difficult for me to handle. Thank you so much for your response!! I so appreciate it. 🩷
Ok so you have Afinitor to try, though that was the most short-lived treatment yet for me, like 5 months max. I was going to suggest Xeloda but now I see you've already had it. The question is, what dose did you take? Did you have normal expected symptoms or something worse? I ask this because perhaps you just needed a really low dose? I've been on it since Feb this year and we had to drop my dose twice (admittedly my symptoms weren't shocking but not exactly a way to live either with the hfs) and now it's good.
There's also Elecestrant, and others I think that some Her2 low are allowed to try. If you haven't had a recent blood genetic testing you should get that done. The cancers can change over time. And/or go get a second opinion! That's what I would do. Get yourself to a top-notch cancer hospital. Also do your own search on what trials are available for you, there's a federal site, I just don't have the link, sorry.
I've had Ibrance, Lynparza, Afinitor and now Xeloda so far.
Thank you so much!! I am currently at a top notch cancer center in CT. Yale University Smilow. I love my oncologist. She is very good at letting me be a huge part of my own treatment. We have been through this together already. Unfortunately, this is my second time around with breast cancer. Thank you for the suggestions of Lynparza and Afinitor, I haven’t tried those yet. 🙏🏻
I’ve been genetically tested twice after failures so I’m thinking if my next treatment fails, I will be tested again.
fyi - Lynparza is for BRCA . Check Elecestrant - though it might be for one of the other mutations, I can’t recall. I’m happy to hear you have a great oncologist who listens to you, it makes such a difference! Hope you find other options to explore
Yale is a quality center center. i contacted them for the initial dx in 2011; i grew up in CT. i was told that i was welcome there, and where i was living in CA had quality cancer centers, too.
Are you still starting the Enhertu though?? Or do they think it’s too risky because of the lymphangitic carcinamatosis? But if you had good length of time on the other meds, no reason Enhertu cannot last a long time too especially if it helps settle the lungs.
I was thinking of Xeloda too as my mother-in-law was on it as many others and it doesn’t sound like you have yet so not sure why that wouldn’t be an option?
Hi!! “Charlie”!! I was on Xeloda for 4-5 days. I felt like I was dying!!! I always forget about it or I block it out. It was really, really, bad. I’m praying hard that Enhertu lasts a VERY, LOOONG, TIME!! I think it will!! I’m having myself a little pity party today and I apologize. Things will get better!!! I know they will!! 🩷🩷🩷🩷
Absolutely this one’s going to serve you for a long time!! Put your faith in that. And this is what this forum is for to help each other chase away those fears.😉😊
Thank You!!! You are awesome!! I have so much hope!!! 🙏🏻🙏🏻🙏🏻🩷🩷🩷
My husband has the same attitude. I always think that’s so strange, that he has the best attitude for MY cancer!! I think he has a lot to do with me surviving. He’s the best!!!
We are all in this together!! Let’s prove to this awful cancer that we can beat it!! XO
there are tons of IV chemo, you maybe running out of pills but not options. I have heard the one you’re about to take is quite the miracle drug. so this may be your saving Grace! Second opinions are always an option. Good luck!!
I’m still on first line treatment for mbc lobular her2 low ie palbo/letrozole/ denosumab/ calcium so cannot offer much about other meds. The nhs doesn’t even test for mutations eg pik3ca etc other then brca and currently won’t provide enhertu so treatment options very limited here. I have so many co-morbidities that I’m unlikely to qualify for a trial but might that be an option for you with all these new wonder drugs/combinations now being tested (as per asco conference etc). I have at least surpassed the ‘average’ progression time and open heart surgery which is encouraging! Best wishes that you get an effective manageable treatment.
I’m going back and reading everyone’s responses and I feel so sad that those of you being managed by government programs aren’t offered maximum help. Like testing for mutations. In order to treat certain diseases properly, a doctor needs all the information of a patient’s disease. Don’t you agree?
The uk body that validates treatments for use by nhs uses gold standards to assess quality of evidence and where something seems effective but only for a limited numbers of people it also has to be cost effective and that rules a lot of stuff out. I’m her2 low but won’t get enhertu unless it costs the nhs less. So I’m hoping by the time I do get progression, that this has been sorted. Best wishes.
Hi, er+, her+, on letrozole and palbociclib for 4 years, Palbociclib was recently reduced to 100mg from 125. I have tolerated it fairly well with just fatigue and recently low white blood cell counts. I am hoping for more time on these meds and recent scans showd no change in the tumor on my spine. So far only the one met. My understanding from my oncologist is that there are lots of options when these drugs stop working. I would get a second opinion if that is possible.
hi Jody. I am also ER+ HER2 low. So far I’ve been on Verzenio/Anastrozole, ibrance/anastrozole, everilumus/exemestine, Truqap/fulvestrant, and now have just started Enhertu infusions with anastrozole again. I can’t say my luck has been good so far. I’ve gone through all these options in a year and a half, but my oncologist doesn’t think I’m running out of options. He is just pointing me toward the best options. Good luck!
I had a rough ending with Truqap. I went off it due to shakiness and lightheadedness. Not actually a side effect of Truqap, but it worsened over time and the Truqap wasn’t working so i stopped it. Lightheaded and shakiness have subsided ( took 3 weeks) and now I’m just exhausted. No problems after my first Enhertu infusion, but the exhaustion persists. I’m not used to being so tired all the time, but I’m hoping I’ll bounce back. I’ve never experienced fatigue with a treatment before.
Hi! I’ve felt fatigued on almost everything I’ve been on. It doesn’t bother me. As long as I have my husband to drive, I don’t worry. I’m happy to hear you did well on your Enhertu treatment. Gives me hope!! 🩷 My husband is going up in the attic to retrieve my box of hats for the Enhertu. I want to be prepared. 🙏🏻
Hugs and Love right back at you, my friend!! I hope everything is going well for you. I think about you all the time and pray that all the comorbidities you’ve experienced have subsided. Take good care! 🩷🩷🩷
I don't really know if I have any mutations but have been on Ibrance (125 mg) and Letrozole for almost 4 years with NEAD and not a lot of side effects. If you need to switch medications, I hope and pray the new one works for you. Don't give up hope and if your doctor is saying you are running out of options, go somewhere for a second opinion. Sending hugs and prayers.
Dear CTGirl------Well done, you! You write so well that we understand where you are coming from. So much of it is smoke and mirrors that good communication on this forum clarifies so much of it. You will be fine. Please keep us forum users up to date and we will do the best we can to hold each other's hand.
HR+, Her2 low. mbc dx w/plueral effusion, July 2015. treatment Aug 2015: Ibrance + Anastrozole. quarterly Lupron injections. stable/NEAD since (Mar) 2016. only first line of treatment. and, less treatment as of Jan 2024. started ctDNA testing in 2022; all tests have returned as "0.00." i'm perplexed why "running out of options" is present. may you find the treatment that heals your body.
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