Best Of
Re: Elacestrant (ORSERDU)
Hi all,
New here…..started Orserdu about 2.5 months ago. Doing well with little side effects.
I am ESRU1 mutation, and did not tolerate Kisquali & Verzenio.
Saw by wonderful oncology team yesterday, and am so thankful everyday for such wonderful care. I told them, "I see this cancer treatment is almost like an 'art form'". What to take, when, the continual dance of it all. When to intervene and when not to.
I was initially dx in 2003. ILC (I found it). Double mastectomy ( in situ in other breast). AC & tamoxifen.
Fast forward, October 2023….in a car accident. Fractured sternum on CT scan. Went home, read COMPLETE report next day. Last sentence, Intermittent scherlotic bone metastatic cancer. NO ONE told me. If I would not have know the meaning, I would be just cruising along. I believe everyone is free to choose their beliefs, but I gotta tell you ladies the Holy Spirit was ALL OVER this one. I also developed two pulmonary embolisms after accident and drove myself to hospital. The doctor told me "I got chills when I read your file". Thank you Jesus
Kisquali & Verzenio sent liver enzymes through the roof. ESRU 1 mutation, so now on Orserdu.
Thanks for reading & listening. Hugs to all, C
cgs19
MRI Waiting
I’m 28, almost 29. I’ve had breast pain for about 5 months now. It’s spread to surrounding areas like my back, rib, shoulder, and arm. A lump showed up around 3 months ago, another one followed a couple weeks later. I had an ultrasound (they didn’t want to do a mammogram due to my age) and it showed dense breast tissue but no concerns. My doctor and ultrasound tech could feel the lumps. I have an MRI scheduled the beginning of September. I’m honestly just scared and looking for advice and support. The pain is unbearable some days. I hate to put pressure on that side, it hurts with or without a bra, and sometimes just walking or living I feel like I got punched in the side. Today, I was walking into a store and had to pause and catch my breath against my vehicle at my back/side hurt so much. I can feel the pain radiating from my breast whenever it hurts. Anyone have any similar experiences?
crgw1119
Re: Who else is starting radiation in September 2025? Let's support one another!
Just want to say that I just finished RT all the month of August. 16 full breast doses and 4 boosts at the lumpectomy site. I am surprised that I am as fatigued as I am and my boob hurt but it’s totally do-able. The staff was lovely and the hardest part was getting lined up each day. I was in the face-down position. I am told I’ll be fatigued most of next week but already I feel a little better. This is just to encourage you all. It’s worth it and you can keep moving. I’ll start aromitase inhibitors in 2 wks. 💪🏻💪🏻
Stage I Invasive pleomorphic lobular Grade 2. Er+, Her2 -
hiker21
Re: Can we have a forum for "older" people with bc?
Sadly, my thought that Bella would be going home soon was dismissed this morning when Jie reported that Phil was back in the hospital. She spends the whole day down there which is why she hasn't tried to keep Bella at her place. So our visitor will be here a little longer. Generally Ken walks them both although with this hot weather it's only early in the morning and after dark at night. They go out in the front yard briefly mid-day. When it gets a little cooler, I'm sure I'll be back as the after dinner walker. We have discovered that it's easier for one of us to take both dogs. They get the leashes even more tangled up if we both go. While he used to love it, Mutz has suddenly gotten very stubborn about riding in the car so drives to grassy areas in the neighborhood have stopped (no grass in yards here as a water saving measure.). I really dread next month's visit to the vet.
It seems as if Ken "needs" to be the dog walker and the cook. He's given up so much that he used to do that I haven't argued with him. I know his telling me that I needed to take over handling our money was hard. He still drives, but only in our senior community. I worried about that until he had his cataracts done, but he now drives well if he knows where he is going. Aging really isn't for the faint of heart!
I was so glad to see Fleetwood win the golf tournament and now look forward to watching tennis for two weeks. I knit during commercials.
Have just finished an afghan for the last of seven great-nieces' high school graduations and have ordered yarn for one for Ella. Just hate the Joanne's went out of business as it is really hard to visualize the true color from a small picture on line. I'm already returning one variegated skein I ordered as it wasn't the right shades for the solid.
Mission BBQ was good. Six sauces to choose from so everyone was happy and we all liked the sides we choose. On the noisy side but it seems most places are these days.
Have a good week everyone. Pace yourself, Sandy.
1946taco
Re: AC or CMF?
@rosiesu, welcome to our community, although we're sorry you had to find us!
Until other members post with their own experiences and support, here are a couple of links to articles on our site that might help:
Wishing you the best in your decision-making process. We're all here to support you.
Sincerely,
The Mods
Re: Are you currently (or have you been) in a Clinical Trial?
perky: Did you have it with fulvestrant? What were the side effects? I’m hoping that trial will come to the cancer center I’m at. I’m trying to stay off elacestrant so I’d be eligible for the oral SERD arm.
luce
Re: Are you currently (or have you been) in a Clinical Trial?
Hi guys, rolling off of the Pfizer Kat6 trial. It was a good 18 months! Fairly easy SEs. Bones are still stable but one of my liver mets grew too much and they won't allow sbrt or histotripsy so on the Orserdeu.
Thank you for all the research and sharing on this site!!
Re: Are you currently (or have you been) in a Clinical Trial?
Hi @eleanora and @cure-ious
Thank you for all the kind words. It's been a sh*tshow lately for sure, but I'm lucky to have an open-minded doctor so I can bring other combinations to him and won't be thrown out of the office like I would've been with my old oncologist.
He said Orserdu and Verzenio was one combo he could get approved, so I guess some insurance (I have Medicare) companies are allowing it.
I will ask about the JAVELIN trial when I see him and bring him some data, but I have a feeling he's holding on to immunotherapy as a Hail Mary. We shall see.
Thanks again ladies for the support and information. I'm on it!
CBL
Re: Are you currently (or have you been) in a Clinical Trial?
Hi everyone,
Update from Friday's appointment…
Well, when last we left the soap opera, As the Cancer Turns, the doctor thought I might have pseudo-progression because my liver numbers went down even though the scan showed progression. However, yesterday when I was due for round 4, my liver numbers had skyrocketed, like by 300-600 points. Yipes! So he ordered a stat CT to see if I had progressed again, and if so, we'd start Talzenna asap. He put a hold on the Datroway infusion.
My blood pressure was 86/60 so they gave me fluids and then did the scan. I received the results last night and yes, I did progress. Not by much since the scans were only 3 weeks apart, but still progression. So I anticipate a phone call on Monday and probably start Talzenna on Tuesday. I don't know much about Talzenna, but I'll do a little research today.
I'm super bummed that the Datroway didn't work, especially since there was evidence to show BRCA mutations did well with it (like 80% response). It wasn't the easiest drug—the fatigue/stamina issues were pretty bad—but I would've gladly put up with it had it worked.
I don't mind saying things are getting a little scary. The cancer hasn't stopped growing in a year and nothing we've tried (two trials, Orserdu, and Datroway) has even come close to stopping it. I sure the hell hope Talzenna works. I think my next option would be Orserdu plus Verzenio, but maybe he has something else up his sleeve.
Anyway, that's it for this report.
Health and happiness to all,
CBL
Re: Brain Mets Sisters
The head RO called on Friday and advised that they had a second, deeper look at the scans with a radiologist, the neurosurgeon and the RO and confirmed that the area is a “really good candidate” for gamma knife. They believe it is localized and has defined edges, which makes the treatment planning easier. So, I’m booked in this week. They said it will take about 1hr 20min this time but I should still be able to use the mask. I really hope it works and responds really well like the previous ones with no notable swelling or necrosis. Hopefully the higher res MRI before the treatment doesn’t show anything else, but if it does, I guess they can treat whatever they find. It was just this one oblong shape on the regular MRI 3 weeks ago…
harrow