How are people with liver mets doing?
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JFL. Hoping and praying this works for you. I'm sure you must feel better after getting rid of ascites. Love and prayers.💞
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Saulius, thank you for the kind words. MO did think lung nodules could be an infection and previously prescribed an antibiotic that didn't make a difference. Of course, if these are a viral thing, the antibiotic would do nothing, so I'm still hoping they are a viral nothing. She wanted to see some shrinkage in my liver, and I think, that more than anything makes her feel Xeloda wasn't working for me, so she wants to go ahead and attack the PIK3. I am IHC+2 now also like JFL, but MO still thought we should treat with Herceptin. She told me Herceptin is not approved with Piqray+Faslodex because there hasn't been a study on it yet, or at least one that's not complete, so for now, I'll stop it. I hope the Piqray makes a difference early so we know we're on the right track.
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Bliss, can you go back to Xeloda at some point? Doesn't seem you had a very clear progression..just suspicion.
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And Bliss, have you and your onc talked about using a next generation Her2 drug? Have you gotten a second opinion from a major cancer center?
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SandiBeach, I thought later that I should've asked if I'll be able to go back on Xeloda, but I didn't. I'll send her a message tomorrow.
SP, what is a next-generation HER2 drug? No, I haven't consulted another major cancer center for a 2nd opinion.
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Bliss, so it sounds like we are both HER2 +2 on IHC but you are FISH positive and I am FISH negative. A shade if difference in test results makes a huge difference in treatment availability. It has never made sense to me! Since you are technically HER2 positive, that is great you have access to the full suite of HER2 treatments. I am not technically HER2 positive. I have been trying to get herceptin for 14 years to no avail. It makes sense your MO would give you herceptin and subsequently another HER2 drug before giving you Enhertu. Enhertu has been FDA approved so far only for HER2 positive who have already taken herceptin and a second HER2 drug. Since it is so expensive as a new “blockbuster” drug, it is not likely your insurance would cover it if you haven’t completed those 2 lines yet. Good news is you have it in your arsenal for later on.
I had first Enhertu yesterday and it was uneventful, which is good. Since it is so new, I was monitored more carefully by chemo nurses and even my MO made it a point to schedule my infusion when he was there and could check on me. I was told I will receive a call from the nurse today to see how I am doing. Everyone is trying to learn about the side effects.
I had to take Decadron as a premed out of precaution as well. Suddenly, me, who has been super tired for a few weeks was completely amped up and could not sleep until 4am. Decadron actually changes my personality to a more outgoing person immediately. So odd. The one good thing about the energy surge is that I was able to spend quality time with my 5 year old son yesterday afternoon and evening. When I was feeling so bad and tired recently, I didn’t get to do all the daily routine activities we do together, which makes him and me sad. He is an only child and is the center of my DH’s and my world. He loves hugging and cuddling but that was mostly too uncomfortable before paracentesis. He asks me if my belly is feeling better now. He doesn’t know what is fully going on yet but certainly notices my belly is big and I have been resting more and going to a lot of doctor’s appointments lately.
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JFL,
So happy that you were able to get the Enhertu yesterday. I hope it kicks in quickly, and that your personal clinical trial is quite successful.Thinking good thoughts for you.
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JFL, actually I am now testing Her2- on FISH, but MO continued with Herceptin anyway. I've taken Tykerb and Tucatinib in addition to Herceptin. Glad you tolerated the Enhertu well. Sorry you couldn't sleep, but nice you had the added energy to spend time with your dear son. Pulling for you and keeping you in my thoughts!
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JFL, thank you for checking in. Everything crossed that Enhertu gives you fast and superb results. I keep thinking of you cuddling your precious little boy. Sending you all love and hugs. Oh, and enjoy Steroid Friday/Saturdays!
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Oh, ok, Bliss. Yes, I was thinking of meds like lapatinib and neratinib that can be effective if herceptin stops working. I am not an expert on Her2+ but I believe they can do both FISH and CISH testing. It’s really important to get an accurate take on your Her2 status. I suppose your onc has to think about whether Her2 or PI3K is driving the cancer right now. Xeloda plus Nerlynx is a combo that is used. Are you already at an NCCN cancer center, then?
My Guardant 360 showed both PI3KCA and Her2 Mutations (not amplification), and we went with attacking the Her2 since The cancer is lobular and that mutation has shown up on other tests, too.
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SP, thanks. No, I'm not at a NCI cancer center, but one that is a rather large network. My MO is great about keeping up on latest research and they participate in trials. She is thinking the PIK3 is now driving my cancer more than Her2. I was originally dx as Her2+++ by FISH, but now negative, and I was told only PIK3 showed up on F1. I'll keep the Xeloda+Nerlynx combo in mind to ask her about. Thanks again for your insight.
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Prayers for you, your husband and little son that you get lots of hugs during your steroid high. Maybe this TX will be magic for you.💞
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Pics from my sons wedding it was amazing
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Nicole,
Terrific pictures -- your son looks so handsome, and you look absolutely beautiful. Congratulations!
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Just beautiful, Nicole!! I hope you enjoyed every minute
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Nicolerod- Gorgeous. So happy for you.
Dee
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Nicole- Great pics!!!!
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Nicole, awesome wedding pictures. Your son is handsome, you look beautiful and so happy! What a wonderful day you'll cherish.
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Pictures from a classy fashion magazine? Oh wait, that’s Nicole and her family! Seeing how happy you all look made me happy.
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Nicolerod, WOW!
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Nicole, fabulous! congratulations to bride & groom, may their love flourish & good fortune bless them
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Lovely pictures, Nicole. Congratulations to the bride and groom!
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Nicole, you look so cool and not much older than your son!:)
Bliss, we know Piqray+F is a powerful combo, so let's hope it works fast for you. I know Herceptin was not tried with these both in combination but what is your doctor's opinion on this? I know it is ~$1000 off-the-shelve here, much less for bio-similars, so maybe... It is usual to give Fulvestrant with Herceptin for HR+/HER2+, and you are used to trastuzumab, so... anyways, I just contemplate if there's any history or tries to have this triplet-combination. Also, like others mentioned, novel anti HER2 treatments might be effective for you. Wishing you all the best.
JFL, please keep us posted whenever you have power (sure, better spend time with your boy). I believe Enhertu will be good for you. I read once people saying there's a very active Enhertu FB group that is really very up-to-date about everything.
Hugs to everyone, Saulius
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Beautiful pictures! You look amazing and so very happy!
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Stunning pics of the wedding. You look beautiful, your son looks handsome and happy and the bride stole the show. I hope it was a lovely day for you.💞
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Nicole, how gorgeous you look! it's hard to believe you're the mother of a grown son and now a mother-in-law! What a stellar and beautiful day! I think we are all shedding a tear of joy on your behalf
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Wow ladies you all made me smile so huge!!!! Thank you so much for all the lovely compliments and the well wishes. I was so happy they were able to get my wig in a beautiful up do.
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Nicole- BEAUTIFUL!!! was waiting to hear. You must have been so happy and so proud!!!!
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Hey Grannax when is your next PET or MRI? I had down October.
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