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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@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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New poster here.
A loved one in her late 40s has had ILC with cancer in the abdomen, discovered 4 years ago, following stage 2 in 2016. Chemo, surgery, and radiation at that time. All good until 4 years ago.
She failed an AI alone after stage 4 diagnosis, even though tumor was ER+ and was placed on Piqray which worked well for 18 months. She was then placed on Kisqali which has worked well since, however her markers keep going up and up, now close to 1,000 for the CA 15. The oncologist say that Xeloda is the next step.
This is insanely nerve-wracking for me and the rest of the family. The anxiety is almost unbearable. One oncologist said (in response to a direct question) expect 3-5 years. That was 2 1/2 years ago. He is no longer practicing. The current oncologist won't answer the question.
Can anyone tell me what what is reasonable? I know that anything is possible and that there are new therapies all the time. If we had a range of possibilities that would at least be better than nothing.
Thank you, and God bless you.
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@fox3, Between ILC and IDC, ILC tends to be the slower growing of the two subtypes. Not always, but usually. A common trait you see among the longer term survivors of metastatic breast cancer is that they have mets in the bone only, and their subtype is ILC. That isn't exclusively the case, but seems to be the trend. Others with ILC who have mets in places besides the bones appear to have a longer than average survival period amongst all MBC subtypes (average survival times of all types is around 5 years). But those statistics are just that. They aren't useful in predicting how an individual will respond to therapy or for how long if they do respond. By definition, some will survive for shorter periods and others for longer.
One of the members who recently passed, DivineMrsM, had metastatic ILC since 2010 and was on Xeloda alone for roughly 5 years before progression.
I think oncologists don't like to give people a timeline because they don't want to discourage the person, or give them false hope. More often you'll find the oncologists discussing the number of treatment options remaining, as that can sometimes be more helpful in managing expectations than trying to predict the future.
Do you know your friend's HER2 status? Even HER2 low cancer can now be treated with Enhurtu, and while not everyone has a great response to it, those who do tend to have good responses and for fairly long periods.
Also, has she looked into any clinical trials? There is an ILC specific clinical trial being conducted at MD Anderson in Houston by perhaps the preeminent expert oncologist on ILC called the REPLOT trial. It's testing an already FDA approved lung cancer drug to see if it works for ILC. Might be worth looking into if she is able.
Good luck, and please ask whatever questions you think of as you support her along this journey.
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bighubs, thanks for the reply. She is a family member. She has metastatic disease in the abdomen only (as far as is known) and it is all throughout the peritoneum, omentum, and ovaries. It caused terrible ascites until that got controlled with the meds. She has no bone mets.
She is HER2 negative per the biopsy that showed that the lesions in the abdomen were the lobular cancer. My understanding is that the HER status can change over time, though.
I'll look into the REPLOT trial. If she can go another 3 years and see her kids graduate from school that would be a blessing, the older children are when a parent passes I think it is much better for them.
Thanks again.
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I found out a few weeks ago that I have ILC mets to multiple bones (hip, pelvis, femur and thigh bone). I’ve had ILC since Aug. 2011. What is surprising, is that I had a PET/CT scan in July 2023 and there were no bone mets detected. I find it hard to believe that the bone Mets are so widespread and large (grape and blueberry size-thanks to AI interpretation). Typically ILC is much slower growing.
I’m starting Zometa infusion on Tuesday and probably Kisqali over the next few weeks if I can get someone to come stay with me. I have 4 horses, 3 dogs and an elderly husband who all rely on me 100%. Wish me luck as I’m sure I’ll need it.
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@newfmamainoregon I have ILC throughout my bones. They were never positively identified on any PET-scans (FDG or FES), or bone scan. Only CT scan showed the sclerotic lesions all over. But they don’t bother me. I am on Kisqali/Letrozole and Prolia (or Xgeva every three months). My doc is more concerned with my met to liver and abdomen.
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@fox3 - Welcome to Breastcancer.org! We're sorry for your relative's diagnosis. She’s so lucky to have you by her side. ☺️ Being a caregiver isn’t easy, especially with all the unknowns and emotions that come with it. Just so you know, we have a dedicated forum for caregivers and loved ones of someone with a Stage IV diagnosis, right here:
Also, if you ever feel like talking face-to-face, we host a virtual Zoom meet-up for partners and caregivers of those diagnosed with Stage IV. It’s a great space to connect with others in a similar position to yours.
We hope this helps, and we’re really glad you found us.
The Mods
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