De Novo Stage IV
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Thanks everyone!
I just saw my onc today and I have a few spots here and there that are suspicious. But, as usual, we will have to wait and see how my next CT scan is.
I did find out that according to my Guardant testing, that I am BRCA2 positive, although it is a very low percentage. So it will be up to my daughter if she wants to pay for a test for herself. She is 42.
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Thanks for the good vibes, @harrow! This is supposed to be my worst day according to last week's pattern of Taxol side effects, and it's not at all horrible. Had a good night's sleep with the help of some lorazepam (which I like to reserve for especially stressful times and I avoid taking on consecutive nights).
@kbl, Am so the meds are finally helping you! Wishing you continued relief 🙏
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@jodyj Thank you so much. It is a relief. I can only hope it will continue. I want to give this new med a chance to work.
@denny123 Sorry, are you saying you have the BRCA2 gene or a BRCA2 mutation? I’m just trying to understand. I’m not sure if that makes a difference in whether your daughter may have it. I haven’t researched that.
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@kbl I don't know which one it is. It says that my Detected Alterations/ Biomarkers….BRCA2 D2723A.
% of DNA or Amplification is %0.6 %.
It does seem low, but I don't know anything about it. I am going to drop off my Guardant testing report with my gynie today on my way to chemo.
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dear all Happy New Year! I am looking forward to good news in 2024 for all of us.
Thank you so much for your support and kind words. here is an update: I met with my MO end of last week. despite 3 new solid lesions in the liver (I thought there were 2) and growing other lesions, and the breast tumor which is now quite large, he wants me to stay on Elacestrant, the reason is because the progression is less than 20% . I am not sure about the baseline for the 20% measurement, and it seems he doesn't consider the enlargement of the breast tumor at all. He said sometimes the slice of imaging is re-read so a few extra mm don't count as actual progression. so waiting for scan in 2 months, holding my breath and crossing fingers. The bone scan is stable, good news! and the whole spine mri showed some abnormality on the cord around neck, so a redo will be scheduled in a few months. I am nervous about continuing with Elacestrant but at the same time I am with the MO in giving the med time to start working. He also mentioned that once cancer cells change the DNA, we can only try different treatments to control it. basically what he meant was that there might be 3 more lines of treatment with this progression, liver involvement and mutation. I can't do anything right now but stay hopeful.
congratulations Denny! you are truly inspirational.
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@snow-drop Im glad you have a plan going forward, at least for a few months. I know it’s very scary to stay on something when you know it’s progressed, even if it’s just a little, according to the doc. I know this drug does take some time to kick in sometimes, so I hope it shrinks things soon. Thank you for the update, and Happy New Year.
I had to start taking Prilosec. My stomach was a mess. I also switched taking the Orserdu from lunchtime to dinner. I definitely eat more for dinner than lunch.
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@snow-drop Thanks! I have been reading about Elacestrant and it might eventually be an option for me. It's so great that we have new options!
My onc always tells me not to panic since each CT scan is read differently. Good luck!
@kbl - did you check with your onc about Prilosec? My gastro Dr suggested it, but I was told an emphatic no by my onc. I take Famotadine, which is Pepcid 40. But that is because I am on Xeloda.
I hope that you find some relief!
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@denny123 Hi! I also was told an emphatic no when I was on Xeloda as well. I only took Pepcid when I needed one for that. It’s definitely okay with elacestrant/Orserdu. There are many of us who have to take it. It can really mess with your stomach. I also took Prilosec when I was on Ibrance. I don’t know what’s different with Xeloda, but I definitely listened when they said no. 💕
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"Welp. Looks like stage IV de novo." ←—-*Please disregard
Edit to state: my MO isn't ready to give up on stage III yet unless or until the incoming scans (CT, PET) make it undeniably stage IV, so I apologize for jumping the gun over MRI results that are not necessarily the final verdict, shall I say.
I am now going to write out "I will not catastrophize" 100 times in my journal.
On a brighter note, the meeting with the MO went well. He's given me more hope, whichever way the staging goes. I've got more information now, and more direction ahead, thankfully. Less scared than earlier today.
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Hi KBL thank you so much for much-needed support. I have few people around me who do not know or better to say, do not want to know what I am going through. I am grateful for this thread and for you for understanding.
I am sorry about your stomach problem, I hope those meds will work for you. I recently watched a content from one of my old and dear friends who is now a good neuroscientist. He mentioned the positive effect of turnips on stomach and digestive system. since it is not harmful, it's worth a try, what do you think. it is smart to switch taking Elacestrant to a bigger meal. I am still having stomach spasms that lead to nausea and vomiting after taking Elacestrant, despite Zofran. I should discuss it with my MO about it.
Denny, I like it "My onc always tells me not to panic since each CT scan is read differently."
I hope everyone is doing well.
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@snow-drop I do hope you continue to feel the support. We all know what each other is dealing with. Others just don’t get it.
I can’t remember, did you try Prilosec(omeprazole)? It has really helped me. I’m not having to take it every day now that I’m taking the pill with dinner. It’s working much better, and I’m not having the horrible chest pain and acid. I’m sorry you’re still having nausea and throwing up. I really hope you can have that settle down for you soon.
I have never tried turnip, as I’m the most extreme picky person ever. If I didn’t have it growing up, I can’t even think about trying it. I also don’t like a lot of different vegetables and foods. Thank you for putting that, though. Maybe someone else will find that very useful.
I had my doctor’s appointment today and will let everyone know how my tumor markers are doing on Orserdu. I’m almost done with bottle three.
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Wow, I think Orserdu is working. Both my tumor markers are the lowest they’ve been for the first time since diagnosis. They’re not normal but are under 100. I’ll take it.
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KBL, so glad to hear Oserdu seems to be working well for you! I know you rely on tumor markers as the best litmus test since it's about the only way to see the activity of your disease. Between that and the improvement of symptoms, sounds like goods signs. Hopefully for the long haul.
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Kbl - Huge congrats on your tumor markers being the lowest they’ve ever been! That makes me so happy to hear.
snow-drop I’m glad your MO seems to be confident in their decision to keep trying out this drug for another couple of months. I hope next scans show improvement, I’ll be thinking of you. So glad we have this place for support.
I’m so happy to say that I got a call today and my Signatera test has gone back down to 0. It had gone from 0 to 0.03 in November and I was worried my maintenance cocktail wasn’t going to work right after chemo. I added Letrozole and the trial drug (either Tucatinib or placebo) and that must have been enough to knock it back down to no circulating tumor dna detected.
Some not so great news is I believe I have Covid. Yesterday I found out my dad has it, who I saw on Sunday, and I started having symptoms last night. I’ve tested negative 3 times today (2 home tests and a rapid test at Walgreens) but my husband tested positive and also has the same symptoms. So I’ll continue to test over the next couple of days. My nurse said to keep taking my trial drugs until / if I get a positive test and if I do she’ll talk to my oncologist about if I should continue to take it. I’m mostly worried about missing my treatment on the 16th, supposed to get Phesgo and a new cycle of my trial drugs. I’m hoping if I do have to delay everything it won’t impact me too much.
Sending love and good vibes everyone’s way! ♥️
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@jobbibo Thank you.
Yay for your Signatera. What a relief, I’m sure. I’m so sorry you may have Covid. I had to test a few days in a row to have it finally come out positive. If it’s negative, could it maybe be the flu? In any case, it sucks. I hope you and your dad feel better soon.
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I am feeling sad, more sad and kind of in disbelief. I met a woman online over three years ago through a different online forum, and we became online pen pals. We were both a missed diagnosis of lobular breast cancer, with doctors not listening to us until it had spread beyond our bones and into organs. We connected in this horrible disease and wrote just about monthly to each other through that forum. I never told her I figured out who she was, as we always used our first names only, but through a different Facebook group, I related her story to her name and what we had talked about.
We talked about life and adventures, mostly hers, as she loved to travel, our children, and our disease and how we were feeling.
She had just checked in on me in November, letting me know she was feeling okay. I then wrote her in the middle of November and again in the beginning of December with no response. I wrote her again a few weeks later, also with no response.
I found out in my own way that she passed away a few weeks before Christmas. I don’t think anyone in her family knew about me.
I think one of the things that’s really gut wrenching is she talked that last time about making plans to go on another adventure. She had also finally given up working and was going on SSDI. I was always amazed at her for continuing to work throughout when I gave up working in 2020 because the fatigue we suffer was just too much for me.
I will say here rest in peace, my sweet friend. I’m sorry we never got to meet in person. You were such a support to me, and I will never forget you.
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kbl, I’m sorry for the loss of your friend. It truly is sad when we lose someone whom we’ve made a connection with online who’s shared the same kinds of struggles dealing with this disease. At least you were able to learn of her passing instead of wondering. May your friend rest in peace.
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@divinemrsm Thank you so much. Yes. My heart knew, but my mind didn’t want to believe it until I had proof. I’m grateful I knew her name so that I could see. Otherwise, I may not have had that closure.
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@kbl I am so sorry for your loss! It hurts so much. My best friend Cherl, passed away before Christmas, also. She had 5FU for her BC about 27 years ago. And she developed leukemia from it a year ago. She had a stem-cell transplant last March and was in and out of the hospital. She went back into the hospital the beginning of November for thyroid and BP problems. She had told me that the nurses weren't required to wear masks. But one of the nurses gave her Covid and she passed away.
This makes me so angry! Most of our local health systems are now requiring masks, but her hospital system announced that masks weren't required, in sptie of Covid…on the same day that Cheryl died.
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KBL,
I am so very sorry for your loss. I lost a friend, a former parent at my school, in the fall. She was initially stage II and I kept reassuring her that the odds were in her favor but that was not to be. It never gets any easier.
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