Hello breasties,
So, the first treatment of MBC which was Ibrance and Letrozole stopped working after just a few short months.
My oncologist is now suggesting Faslodex only as a next treatment.
He also told me that my cancer went from being HER2 negative to HER2 positive. Has this happened to any of you?
Anyone on Faslodex only?
Thank you.
Prayers to all of you and God bless 💕🙏
Hi Annadm,
("breasties" is cute! 
)
I'm interested to see other responses about HER+ to -.
I've been aware that sometimes "hormone receptive" cancer becomes triple negative and I'm actually concerned about this for me (biopsy 10 yrs ago was 95% ER+, 75% PR+; 5 yrs ago = 45% and 0%...who knows what it is now?)...
...but it sounds like yours is still ER+...which is good, I assume?
I think I've seen numerous people here who are on Faslodex alone, hopefully they'll respond. I'm on Faslo, but in combo w/ Ibrance...
I do have one question, which I'm a bit reluctant to ask...Are you sure you gave the Ibrance + Letrozole enough time to work? I got widespread bone progression (after previously having just one tumor) about 8-9 months into Letrzole, 6 months or so after adding Ibrance to that (it had just been approved...), but stuck with it and enjoyed 3 more years on this treatment, with some real improvements a couple years in....My doc noted that it often takes a while for this type of drug to kick in...Would it be possible for you to delay a change to see what happens? Again, I don't mean to second guess, but this was one of the most notable things I learned/decisions my doc and I made...I'd feel remiss if I didn't mention...
BTW, I've found the Faslo to be even easier to tolerate than the Letrozole...I do love this drug! I hope you find the same, whether you change now or in the future...
Best,
Lynn
Hi Lynn, well my oncologist took me off it. My MET is in the liver and I started with small lesions everywhere in the liver in October 2019. A CT and PET scan showed that 2 lesions tripled in size and 2 more doubled. So, I guess he deducted that it wasn’t working anymore. And the pains in my sides have become unbearable as the diaphragm pushes against the tumours when I breathe. So I was on it for 9 months. He also wanted to put me on a clinical trial but because of one shitty enzyme that’s elevated, I’m not a candidate.
But THANK YOU SO MUCH for this insight. I never thought of that. I see him tomorrow and will definitely mention it to him. I’ll tell him your story.
Again, thanks breastie. Have a blessed day 💕🙏
What a shame about the enzyme level/trial!! And I'm so sorry about the pains, my gosh! I hope the Faslodex helps with that quickly! (fingers crossed!)
Hi, have been reading about all the extras you do. do you know where I can get K3?
I have really liked Justthrive k2-7. It stopped my body from producing a fibrin sheath over my port line which meant they couldnt draw blood from my port. Double pokes every week, 1 from my arm for blood, 1 in my port for chemo. I only take 1 a day instead of 2 and it lasts for 2 months.
Hi ChrisVict - I ordered my D3 and K2 on amazon....I know someone on this site recommends it as a spray (applied to your skin, I think?) not a pill, but I honestly don't remember why, i.e. just to avoid another pill or does it absorb better?
*spray was for K2...I think D3 comes as a pill only (well, that plus a nice sunbathing session... ).
Thank you I don’t know where I got K3 from. That simplified it I will finish my D3 and order K2 Once I finish both I love to get the pill with with both 1 less pill to swallow. In the meantime awaiting genetic blood test for 3rd line of treatment.
My oncologist also told me that hormonal treatments work very slowly but are very effective.
Also, do you think the diagnosis was wrong at the start?
I am wondering if mine has changed from er + to er - as letrozole stopped working for me and now just on xeloda and denusumab
My original breast cancer was 99 percent ER positive. My MBC is 2 percent ER positive. Maybe we should have periodic biopsies?
That's interesting, SeekersRoad...Are they treating you for "hormone receptive" at that level? Like are you in the Ibrance/LET/Falso types of treatments or something else?
Yes, and I apologize, my name is Sharon. They are treating with ibrance and faslodex. I also did two years on anastrozole as this cancer was growing. It was first visualized in July 2018 but my doctors did not manage to diagnose it until May of this year when a new doctor finally did an MRI and biopsy. But I don't think it is helping. I am having my three month scan at the end of September, but I can feel it and I think it is spreading. My oncologist said that they say you should treat as ER+ if there is any positivity at all. It does concern me.
Sharon
This happened to me also. Went from neg to positive. I think it changes treatment options. I am on aromasin and affinitor now which I don’t believe are working because my markers just keep going up.
Hi Annadm,
I’m wondering why you’re not being prescribed herceptin and perjeta. These 2 drugs work well against her2+. There are several of us in the group on this treatment. I know one lady has been on it for 4 years. I’ve been on it for 19 months.
Yes. I went from her2- to her2+. I was on ibrance for about 3 months before having a second biopsy.
Sending you my best.
Stacy
Hi ladies how do you know if your cancer changes? My oncologist doesn’t seem very interested in doing any tests or biopsies she’s just moved (on autopilot) to the next chemo drug.
So are digestive issues part of the condition? I've seen a few mentions. I had really bad problems together with back and leg pain before diagnosis. But as my cancer levels decreased it improved and I've gradually dropped omeprazole and just trying to be careful with diet and eating habits......most of the time. I know someone else who had similar symptoms and same diagnosis. I know they identified lung problems initually so I assumed it was aggravated by pressure around the stomach. When I have mentioned to medical people they don't think so.
By the way I love your term breasties!
Hello...also loving g breasties! Anyway in regard to digestive issues, I'm curious too. Before my diagnosis I was going to the doctor because I was vomiting bile daily. They thought I had digestive issues and then found my cancer had spread. I was a horrible patient five years ago and my stage 1 spread. Anyway...the gastro Dr says no issues whatsoever. So I assume it is all from the cancer. I have heartburn frequently when I didn't before. I have to be careful what I eat. Anyone else have digestive issues along with MBC?
I have terrible heartburn and getting to the point I can only eat once a day. The everolimus has caused swelling so I've been given lasix. I woke one morning with a horrible looking subconjunctival hemorrhage. After doing my own research, I learned you shouldn't combine lasix with prilosec. Ugh. I have an ache under my rib cage almost constantly. I assume it is from the liver lesions. Scans in a few hours. I'm scared to death.
I hope you find some relief to your gastric distress. It's certainly no fun.
Andi
Hi - I have been on Faslodex only since 3/2019. I have difficulty swallowing pills (I know people just don't understand why I can't swallow pills) so my onc agreed to try Faslodex only. I have an MRI every 3-4 months and I have been stable. I have a tumor in my liver. My alkaline phosphatase has returned to the normal range and my tumor markers have always been normal. I don't mind the shots and have few side effects. Sometimes I have itching for a few days, a bruise at the injection sites and a hard area under the skin. I find walking after the shots helps and the heated seats in my car help after the shots. I have two nurses give me the shots at the same time. I lean on the counter in the exam room and try to relax my bum. Good luck with your shots.
I am on Faslodex and Afinitor....I’ve only done the Faslodex twice so far, but found the shots almost painless, and the soreness very mild the first time and not even noticeable the second! As to digestive issues....I’ve had a lot of them just because of the Afinitor, but my doctor said it sometimes causes lactose intolerance, so I’ve eliminated milk products (except butter and cream, which I use in really small amounts) and found that I’m much more comfortable.
It is really distressing how the cancer changes....my doctor thought I was HER2NEU+ so I did the perjeta and herceptin for 9 months, but then it was determined that what had been a very week positive became a negative so now I’m off them. But they had very few side effects for me. Good luck!
I agree with Staysha. There are effective treatments for HER2+. Your doctor should put you in them.
HER2 low treatment
No benefit of chemo for ER+HER2- invasive lobular beyond estrogen therapy
Seeking second opinion for Her2+ Er+Pr- MBC?
Overall Survival With Palbociclib and Fulvestrant in Women With HR+/HER2− Advanced Breast Cancer
Good News for HER2 Positive MBC Patients!
