Just diagnosed with ILC mets
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Hi, Kris
We discussed the dose reduction with my MO. I am on my week off and starting next Friday will keep an eye on it. If allergy comes back, I will switch to 400 mg. Just read an article that it doesn’t change the OS. FDA just approved Kisqali for the early high risk BC stages II/III with lymph-nodes involvement or high grade and Onco score. Other people here on different threads report SE from other CDK meds.
How are you doing? Last time we spoke you mentioned your throat. Have you had any scans/tests done recently? What is working for you now? Are you still on Enhertu?0 -
@laguna24 I hope that works for your rash. I believe that’s what the other person I know did, and she’s still doing well.
I was on the lowest dose of Ibrance for two years, so I think a lower dose is a good option.
I did have a CT scan before Enhertu started that mentioned thickening of my descending and sigmoid colon, so I’m assuming it’s there now. I’ve had two doses of Enhertu, and I’m not going to lie, it’s awful. I lowered the second dose to 80%, and I don’t feel any different. Lots of nausea and constipation. It’s so hard to eat. I will be talking to my doc on the 3rd of October. My tumor markers went up quite a bit after the first dose, but I’m thinking it could have been tumor flare. Thank you for asking.0 -
So sorry you feel so awful. Have you checked for any trials recently?
https://breastcancernow.org/about-us/research-news/potential-new-drug-combination-for-er-positive-breast-cancer/#:~:text=Scientists%20funded%20by%20us%20have,resistance%20and%20improved%20their%20effectiveness.My doc reserves Abemaciclib as it works even on pre-treated ILC with mutations. That’s why she is trying by all means to keep me on anything, but abemaciclib (Verzenio). She reserves it for after chemo when I will exhaust all my other options. Does it make any sense for you to try it?
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@laguna24 Thank you, and thank you for the article. I probably would not be a candidate for Verzenio, as I have a resistance to AIs now with the ESR1 mutation, so they won’t work for me any longer. The doctor I am going to while here in North Carolina is so awesome, but we haven’t talked about any other treatment options yet.
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@laguna24 Hi. Thank you for asking. I have a long car ride tomorrow back to my home in Florida, and I’m trying to prepare myself. I’m struggling a bit at the moment. I’m having pain in my ovary/colon, can’t tell which, that’s getting a bit worse as the days go on, some back pain, and the biggest is my swallowing is getting worse. I have a doctor appt a week from today and will have a serious discussion about hospice vs palliative. I’m going to need to start taking something to help. I kind of feel like I’m choking. It’s pretty uncomfortable.
How are you doing?
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Chris,
I am so sorry to hear it. Have you tried this ELAIN3 trial? Is your doctor back in Florida? Ask him about it. I’ve heard very good feedback from participants.
I am stable for now. Still on my Kisqali/Letrozole regiment. Plus everything to control allergic reaction. Have some gasses in my lower abdomen (I guess due to the small met on the tip of my appendix). They are kind of moving between left and right hips creating some discomfort or dull pain, sometimes radiate into my ovary and back to kidney. But numbers and scans are all normal(some shrinkage in liver/appendix or stable status in my bones), and my doc doesn’t go by numbers. She is more concerned about the symptoms. She examined me yesterday, but did not feel any nodules. So I guess this is something I have to get used to for now. I have another CT and MRI scheduled for February.
Please, try this new combination. My doc believes Verzenio has a great potential as I told you before. She reserves it for me for the later days where all other options are exhausted. Don’t disappear. Keep in touch.Hugs.
https://ascopubs.org/doi/10.1200/JCO.2024.42.16_suppl.TPS1127
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One more thing: I am planning to schedule colonoscopy with my GI and ask him to check for any narrowing in my lower abdomen and biopsy of the tissue. Why don’t you do the same? You can do endoscopy and/or colonoscopy to check for the same.
I hope you are home safely.Hugs
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@laguna24 I did make it home. It was a long day, and I drove most of it in the rain.
I’m glad you’ve gotten to stay on your regiment, although you have the allergies. That has to be hard. I’m so glad you’re stable, but it doesn’t help when you’re having pain or issues and don’t know why. I hope you can figure it out soon.I’m really sorry, I thought I had told you, I have made the decision to stop all treatment. The Enhertu made me feel so horrible, and I couldn’t function on it, so after two treatments, I came off. I had even lowered the dosage. I really gave it a lot of thought, months of thought, and with the support of my family, I have decided I want quality over quantity at this point. I am not on hospice yet, as I don’t feel I’m close to needing it at this point, but I will be discussing it with my oncologist this Wednesday.
I’ve had many endoscopies, and that’s what found the mets to my stomach in 2019. I won’t be doing anymore testing since I’ve made my decision. I’ve been off treatment since September 13th, nine weeks today.
Please keep me posted on what you find out, and I will keep you posted on how I’m doing as time goes on. Thank you for thinking of me.
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Chris, you did tell me, but I though you are open to try new meds like Verzenio in this new combo. It may work for you unless you are done with all treatments psychologically. I hoped for other options if you cannot handle Enhertu. But it’s your life and your decision. It makes me sad as I don’t know how much time palliative care gives you. I am yet to figure it out on my own when time comes. In a meantime enjoy your life around your family. And stay strong.
Hugs
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@laguna24 No, I don’t want to try anything else. I’ve had a decent quality of life up until now, and I’m not willing to go on any lines I’ve already been on, meaning an CDK4/6, and I definitely do not want chemo. I appreciate you giving me things to read, but my mind is made up. I’m hoping to get quite a long time with no meds. When I was unaware I had cancer, I got six years to live without meds before it spread to my stomach. I know I won’t live another six years, but a year would be nice free of any meds.
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Chris,
I appreciate your strong will and support any decision you made for yourself. Please keep in touch.
I wish you a good life for the remaining year or hopefully more.
But it makes me very sad. It has been a long journey for you and I understand that suffering should not be a part of life. You are amazingly strong and I am learning from you.Hugs and kisses
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@laguna24 Thank you so much. I have had a friend who did everything she could to survive, including suffering miserably through treatment. I am so sad for her, and it made me truly reflect on what I want. I am so appreciative because I have far surpassed how long I should have lived with my diagnosis. I will definitely stay in touch, and please let me know how your endoscopy and colonoscopy go.
Hugs and kisses back atcha.
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