Its my 60th birthday today! Glad to still be here!
CT scan was stable but CA15 continues to rise on Trodelvy. CA15 is an important indicator for me. This info plus a comprehensive new Gardian DNA blood genetic test showed us some new options based on my mutations/bio markers (I am an architect so firgive me if I get this wrong) posting in case anyone needs info for themselves later:
ESR1 suggest: Elacestrant (option) and Letrozole(already had)
ATM suggest: Olaparib or Talazoparib
So, when I finish this round of Trodelvy and if insurance approves, I will start Olaparib which is a pill and take a break from IV chemo. I suspect we will give it 8 weeks and if it doesn't work, I have been pre-approved for Enhertu. I'm actually fairly excited to have the freedom of a pill so I can get up to our cabin and out of the heat for a longer period of time.
Lots of info I know but would love to know if anyone has heard of or had experience with Olaparib.
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Iwasborntodothis
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60!!! What an amazing year! I’m so happy to hear you’re going to get a break from the pokes for a bit. Praying for good results for you. And I’m also praying you’ll get to see the beauty of the world when you visit your cabin!
Welcome to the club of being 60! I think it's the new 40 (or something like that.) I just think how the hell did I get to be so old!
What form of architecture do you practice? I am architect-adjacent as I advise my brother's foundation who supports social impact design, and work as fundraising and strategy consultant to a terrific Mumbai practice working alongside disenfranchised communities to reimagine their built environments. (thus my frequent trips to India)
I haven't had experience with either drug. I was on Elascatrant for a hot minute as I have the ESRI mutation but it didn't work for me. I am now on Affintor which seems to be working. Will be interested to hear how it goes for you. I have also heard great things about Enhertu...
There are so many positive stories out there these days. None of this is fun, but at least there is hope.
I did mostly K-12 architecture and only briefly before moving to managing and building K12 buildings because honestly it paid better and I enjoyed the problem solving aspect in the field. Educators should not be managing building projects! I enjoyed helping them through the process.
Happy birthday !! I'm also born in 1964 I have not been on lymparza but have heard good things about it . I know a woman on another mbc message board who has been stable on it for a couple of years .
Happy 60th! I’ll be celebrating mine later this year too!
So I do wonder, if your scans are stable, why not take Trodelvy for a bit longer? I’m like you, my TM’a accurately track the direction of my progression/regression but my doc has always pushed to linger longer (within good reason, of course) on each drug so that you get as much mileage out of each as possible. That helps us not run through all our options too quickly.
I took Lynparza a couple of years ago. It was an easy treatment for me but ironically (even though genetically it was a strong match) it didn’t work nearly as long as I’d hoped. I think a max of a year? Certainly not longer. Whereas I’d got a good 2 1/2 yrs out of IBrance.
So personally I’d consider staying longer on Trodelvy, then try Lynparza or Elecestrant (both good options). I know it all depends on how advanced your current lesions are too. Like when my liver Mets started to become concerning obviously that was a time for a change. I’ve been on Xeloda since Feb this year.
My doc wants to change now because last year at this time, my cancer went crazy and I was in crisis with my liver. He says he'd rather change now then wait. My Ca15 has been creeping up 50-100 points per round this year. I trust him and decided I'd rather take this option after this round of Trodelvy to have a break from IV chemo
Hi!!! Just curious . I see your er/pr positive and her2 low. I think my mom is the same. What did you go to after enhertu and do you know yet …. How’s it’s working? Thanks so much!!!
I went back to a first line treatment called Kisqali plus Lextrozole. I have the Pik3ca mutation so my next line after that would be Trucap (pill for the Pik3ca) or Trodelvy. Best to your mom !!
Happy birthday. I don’t believe Letrozole is for ESR1 because ESR1 means you are resistant to AIs. I know you had said you already had Letrozole. That can actually be the cause of the ESR1 mutation. I am on Elacestrant right now, month nine, and still going. My tumor markers are also accurate for me, and mine have slowly crept up these last two draws. I’m going to try to get a year out of it if I can. I usually can’t eat and lose weight when it’s acting back up in my stomach, and I can still eat. I hope you great success with whichever you choose.
Thank you! I find my digestive system is the first to "tell" me the med is failing and this is usually reflected in my Ca15. The meds really take a toll on me but I've learned to manage the ups and downs and hold my weight fairly steady.
Happy birthday! I haven’t any experience of these treatments but just wanted to wish you luck. I am hoping I can eventually try Enhertu as I am HER2 low, but at the moment it is only approved for HER2+ in England, although there is a lot of campaigning going on. Sending love
Thank you sending love back! My nephew who just graduated from college was in England last week and is now wandering around France. He loved London and the small hostel where he stayed.
Hope you had a great birthday! Best wishes for your insurance to approve the new treatment for you and praying it works well. Hope you can get up to your cabin and enjoy some nice weather and outdoors time. Sending hugs and prayers.
Yes, getting in some golf would be great, too! Our courses are actually pretty empty now that the snowbirds have gone back home. Fairly easy to get a tee time even with one course closed each week for maintenance. I play as much as I can as early as possible as it has been pretty hot in Florida. Hugs
Happy Birthday!!! 60 is a great age!!! I’m so happy to hear you’re taking a break from IV treatment. I’m actually starting on Enhertu in a couple of weeks. My first round of anything IV this time around. I would be so interested in your journey with Olaparib. Something I can put in my notes for my doctor. I wish you a very happy year of being 60 and your journey with this crazy disease!!
Thank you - IV isn't that bad. They give be a big dose of benedryl so I put on my noise cancelling headphones and music and sleep through most of it. There have been ladies in the center who sing along to their music with their headphones on and it is hilarious.
Happy Birthday! From my understanding CA15 measures more of inflammation and through that the speculation was rising cancer cells. On the flip side I have read that CA15 level will also rise when cancer stem cells are killed and no longer a live.
Yes I think there are many reasons and this varies for all of us. For me after almost five years of treatment, it has been a very accurate indicator of a failing response to meds or a cancer spread. The CEA and the other one we used briefly have not been helpful.
oh good for you in getting away to th cabin! Thr freedom of restarting oral chemo sounds so hopeful to me as after 4 years of oral I just had to start IV chemo. I didn’t like it as it brought back all the N&V that I remembered from 20 years ago in early breast cancer days. Enjoy the freedom of the orals and hope you get a long run on it!
Like my doc said yesterday, we are so fortunate to have so many more options then even 4 years ago (when he lost his wife to breast cancer). He mentioned that beyond Lymparza and Enhertu, we could also explore Gemcitibine (sp) and Everlimus (sp) so I feel grateful to be 5 yrs in, burned thru so many meds, and still have options.
I am 4 years and 4 drugs in so far… feel like I am going through them quickly but I expect by the time I am through a longer list that I will be tired and ready to go. Not dishing it to go by fast but that is how I stay positive and sleep well. Thst and cycling swimming etc every day that I can! Today was incline Compton RI
That makes me happy! And I agree with your outlook. Every day is a blessing and perhaps we appreciate it more than most. I just saw my lab results from this week (doc was right Trodelvy wasn't working anymore) so I needed your response to kick me out of the freak out. Have a great day!
Hi Allison, I thought you already had everolimus, brand afinitor with exemestane as an estrogen blocker. Indeed we are fortunate. I just saw information on TV here in Spain about a new injection to treat some types of cancer. Will have to review that information.
Insurance denied Lymparza so I will start Enhertu on the 8th. Somewhat disappointed but I know how hard my team worked to try and get it approved - they fought for me to no avail. My insurance will only approved for BRACA mutation. I have ATM mutation (like I know what that means). My doc says there is a trial right now for this drug with ATM but he doesn't want me in a trial yet so I am thinking at some point I will be approved for Lymparza but not until we try Enhertu.
I am biting my tongue not to make an ATM mutation dad joke--like does it come with extra cash?
Per Enhertu--I spoke too soon about Afinitor still working. My CA 15-3 also rose so it's time for a scan, mutation test and likely a med change. What I did on my summer vacation...
I was adamant about not wanting Enhertu due to the scary side effects, but after stalking the Enhertu FB boards and reading many positive stories--including quite a few who are living fairly normal lives, are NED etc., my fear is waning. You might want to check it out if you haven't already. There are some horror stories for sure, but then women chime in to offer ways to mitigate side effects so it's mostly reassuring.
The other drug he is thinking about for me, if I have the right mutations, is Truqap. It is fairly new, but is a pill and has had promising results. There are 3 or 4 mutations that make a person eligible so maybe look at that too.
Thanks for the smile and the reassurance. I think we all see the scary stuff first but as more of us take the med and post about it, we can see the "up" side too. I am glad there will be several of us on this journey together.
Well, surprise! Just got a call that my insurance overturned the Lymparza denial so I guess I will start this on the 8th instead of Enhertu. My head is spinning. They used the "compassionate use" argument since I only have limited options remaining. So, a pill and $0 co-pay is what I'm hearing today.
I started yesterday - doc wanted to see me in person before start and it took awhile to get it all set up with Specialty Pharmacy/delivery etc.
I am starting slowly. Full dose is 2 pills (150mg) twice a day. I am doing 1 pill a day for 3 days, then 2 for 3 days, then 3 for 3 days then full dose. He also wants labs (not full labs with CA15) every week starting in 2 weeks.
I can't get a read on him about this drug and I've known him for years (he treated my sister) - I think he is worried that if it doesn't work, I will get sick quickly like I did with Carboplatin but he also wants to try this while I'm relatively stable (except for rising CA15). Finally, he is all for postponing Enhertu for as long as possible due to cumulative "toxicity" because I have already been on 2 IV chemo treatments.
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I have not been on lymparza but have heard good things about it . I know a woman on another mbc message board who has been stable on it for a couple of years . 
Low Ca15/3 and metastatic breast cancer
Striving to walk again, more progression, radiation and Trodelvy advice and prayers most welcome. 
Trodelvy and low white blood cell count 
