How are people with liver mets doing?
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Here’s my story with a surprise ending (and least I was surprised).
2016 stage 2 breast biopsy indicated ER 100%, PR 30% and HER2 non-amplified. 2020 MBC bone biopsy indicated ER 95, PR 90 and HER2 2+ (low). Fast forward to recently when my liver got crazy on an estrogen degrader trial drug. We immediately switched me to Enhertu and simultaneously took a liver biopsy. The liver biopsy came back ER 51-60%, PR 0 and HER2 positive! Not HER2 low, but HER2 positive.
My first infusion of Enhertu was brutal but within days it started to heal a sore on my hand that had been there for over 9 months. It must have been a small skin met and now it’s nothing but a hard to see scar. Today I received infusion #2 at a lower dose. My primary and second opinion both agreed that I needed a lower dose. Keep your fingers crossed that I can get some time out of Enhertu AND some QOL. 🤞🏻0 -
rk2020,
Hope your second and reduced-dose infusion goes better in terms of side effects and QOL. I recently asked my MO about liquid biopsy, since it is less invasive, but she said solid tumor biopsies are the gold standard.
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Nicolerod and nopink2019, you are both in my thoughts and my heart. Thank you for your honesty.
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RK, also hoping the dosage reduction of enhertu will give you back some good quality of life. Love you!
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Thats nuts RK - does that open up Herceptin for you? Best wishes for a long and easy time on Enhertu!
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@weninwi Id agree that biopsy material is the gold standard but I’ve also had a liquid biopsy. They are easier and can be helpful if the met needing a biopsy is in a difficult location.
@sondraf I’m guessing that before the world of Herceptin and like drugs is opened to me, I’d have to have a bone biopsy to see if they remain at 2+ or if they are also positive. I didn’t specifically ask that question because for once, I got the result in my doctor’s office so I had the deer in the headlights thing going on. I didn’t realize the FISH results were in. They were buried in the hospital portal and not yet posted to my MO’s patient portal.
Last Enhertu treatment didn’t start hitting me until day 3 so tomorrow may be a bit more telling. Day 4 even more telling. Until then, I’ll just sit around and watch my hair fall out. I lost a lot of hair already. Maybe 50%? It’s hard to guess but since I already had fine short hair, you can see my scalp all over.
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RK- I hope that the dose reduction is the ticket to a much better cycle this time.
Her 2 status changes a lot in breast cancer and GI cancers. It opens a lot of treatment doors for you if it stays +. And Enhertu works better in Her 2 Fish + and has a longer PFS, than Her 2 low.
Liquid biopsies are used in many other cancers - breast cancer had a harder time making it work - so much easier than a tissue biopsy so I hope it can continue to be a good choice.
I lost a great deal of hair after #1 and It continued to shed for several months- did start to grow back around # 5. I am cold capping which may make a difference in regrowth, but, the data is not here yet.
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RK2020, that is really interesting and great news that they have been able to identify a target for therapy. Its got me thinking about my wife. She hasn't had a biopsy in 6 years. Back then, her liver was riddled with cancer, so it was relatively easy to get some cancer cells. Now, with her tumor markers rising, but nothing obvious in the scarred up liver is growing, but some weird spots on her spine, I wonder how they would go about finding cancer cells to biopsy? Somethings growing, according to the tumor markers, but where?
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RK
Fingers crossed that this cycle is easier on you. I agree that QOL is important and needs to be considered more by MOs when they make treatment recommendations.
According to my MO, bone biopsies often don't provide accurate hormone status. I only have bone mets (but a lot of them) and I'm going to ask about a liquid biopsy when I see her on 7/17.
Hugs and positive thoughts for you.
Eleanora
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Nicole,
I came across this post tonight and read about your struggle . I have never posted here but wanted to wish you the best outcome offering you peace in your long journey. You have touched a lot of people in here with your wisdom and courage. Take care
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Got my CA27.29 and CA15-3 results after one cycle of Enhertu. My tumor markers have always been very accurate and rise and fall together. But then again, I’ve never had such a large liver tumor burden and I’ve never targeted HER2 before. Suffice it to say that I think I’m on the right track even though my numbers are a bit wonky. Until I see more evidence, I’m chalking up my numbers to tumor flare. I think next month’s numbers will be more telling.
CA27.29 increased from my all time high of 340 to 577. My CA15-3 went from an all time high of 1083 down to 979.
On the bright side, the numbness in my lower left jaw, chin and lower lip is improving. I’ve got almost all the sensation in my lower jaw back. Chin and lower lip still numb so I’m a bit sloppy when I eat certain foods like noodles but that’s what napkins were made for.
Day 4 after infusion 2 and I’ve got about 20% of my hair left. At least I’ll be cool in the Florida heat!1 -
RK2020-sounds like overall good news!
My MO usually doesn't worry about the first TMs after a new drug- part of the trajectory that the TMs were heading anyway. although Enhertu is the only drug where my first TMs went up. I think the physical symptoms that are improving are a good sign that it is working.
I hope this second dose is more forgiving than the first one. Hopefully all your side effects have useful meds to intervene.
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rk, I hope you have good results with Enhertu; wishing the best for you. Btw, I don’t have issues with my jaw or lip but I am napkin city when I eat! I often joke about it with dh who might use a tiny corner of his napkin while I literally have used four entire napkins, even tho we’re eating the same thing!
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To All,
What is your experience with blood glucose levels? Does anyone know if liver mets can result in elevated blood glucose levels? My blood glucose has always been in the normal range (70-100mg/dl), but last two times my fasting glucose came back 106 mg/dl. Not a big increase, but I'm still concerned. My diet has been stable for a long time and I keep my carbs at a moderate level. No added sugar, fruit is whole berries only, no high fructose corn syrup. I have lost muscle mass, which I think can be a factor in terms of glucose utilization. Thank you for any thoughts.
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I think I figured it out my slight rise in fasting blood sugar. For past month or so I've been using Biotene gel a couple of times during the night for dry mouth (I tend to mouth breathe) when I get up to urinate. Biotene contains sorbitol and xylitol. I don't use very much (maybe large pea or kidney bean amount) and I never swallow it, I spit it out after a few seconds, but I think it is still being absorbed. So no more Biotene. Try to solve one problem create another. Hopefully my blood sugar problem is now solved. At this point, I don't think my liver mets has anything to do with my blood sugar level.
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I have started the Talzenna. For those that pray to the God of Abraham, Issac and Jacob PLEASE pray this gives me more time. I NEED to move with my husband in 4 Weeks to SC PLEASE beg the Father for more time for me. After this, I am done with treatment. Thanks, Nicole
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Prayers lifted Nicole.
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You are in my prayers. Always have been so I’m not stopping now.
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nicole, I truly do send caring thoughts your way. You have gone through so much. I realize my experience with mbc has been completely opposite of yours. I never want to burden you with anything because you have battled since day one with so many different treatments. That’s why I keep my comments heartfelt but brief. I hope you do not mind my saying, tho, that I have wept for you. I really can feel the frustratingly utter unfairness of all that you’ve gone through. The other day while driving in my car, the song “So Small” by Carrie Underwood came on the radio. Something about the tone of the song made me think of you and I just started crying. I usually don’t share these deeper feelings because this is not about me. You are the one going through it. But please know that your warrior spirit, the beautiful essence of who you are, has always shined through in your posts and what happens to you matters to us. You have made your mark on our hearts.
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Divine..you have left me speechless (which is NOT easy to do) lol … Thank you so so much for kind caring words they have uplifted my spirit today. I am believing God for this work even just for a 6 months to get me to SC with David and get all settled and even to see our son and daughter in law and grandbaby move there in Feb. It will be the 1st time in 15 years that I will have my husband and son in the same state (military)…. it has been my prayer for 15 years…I really pray the Father has mercy and allows me more time to experience it.
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Nicole, Not a prayer person and not a Christian but I hope you will accept my positive thoughts.2 -
Postive thoughts accepted :) thank you
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Thanks RK and Chicago!!!!
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I wanted to also mention… our son and daughter in law and grandbaby are moving down to SC too in FEB. about 2 and half hours away…. (david will move in with them once he retires in 3 years) …. for 15 years I prayed to be able to live in the same state with my husband and our son… and now that its about to happen… I am at the end and may not even make it to SC let alone get to have our family together in Feb….so we are really praying hard for the Father to make this treatment keep things at bay even if only for 6 months.
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@nicolerod - lifting you up in prayer.
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Nicole,
You continue to be in my prayers.
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You are in my prayers Nicole. I want this so badly for you.
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Nicole I am somewhat newer to this thread but I have read through a lot on here and I have followed your treatment story. I just wanted you to know that I just prayed for you and I will continue to. I agree, you have a warrior spirit and it shines through your posts and is a witness to others. Sending you love and prayers.
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@nicolerod - You have been and continue to be in my prayers. Sending so much love your way.
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@nicolerod you are in our thoughts as well. We are so grateful for all your heart-felt, supportive posts. You have indeed made your mark on our hearts!
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