Just diagnosed with ILC mets
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Laguna, thanks…hope others will chime in. I will be happy tumor markers aren't climbing any more, at least, and I had genetic testing done at time of dx, so there are backups from that testing that Mayo already said could be helpful if Verzenio/Faslodex isn't working for me.
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@claireinaz Some of my blood numbers go above normal and then drop the next month. I would be more concerned if there were multiple months of your ALT being above normal.
My tumor markers have never been back to normal on any of the three lines I’ve been on. If they hold my cancer steady and I have no symptoms, that’s usually how I gauge.
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RB1 is retinoblastoma gene that terminates cycle of cell division at G1 phase and stops it from going into M and S cycles. This is the main gene that if mutated the treatment of CDKs is no longer working. For ESR1 mutation there is Orsedu, for RB1 there is none. My only hope that it is local to the liver which is possible. But if not in about 4.5 months I will progress. So the only option there is chemo. As of now I know that my liver will not respond to Kisqali that I just start taking and completed my first 21 days cycle. If insurance will approve another CARIS test on my GI biopsy I will look into my options. Was thinking about liver RFA if possible.
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Well, I just checked my 15-3 tumor marker. Jumped 20 points. So it looks like Verzenio isn't working and I should prepare for a switch in meds or tx or something, or to be dead soon. I'm so disappointed. So sad. I had such hope and now I hate hope. I feel like I should prepare for death soon, actually.
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@laguna24 Thank you for the explanation. I am on Orserdu presently, but it’s starting to fail. I hope Caris okays next test.
@claireinaz I’ve been dealing with de novo mets for a really long time. I’ve come to the point where my tumor marker jumps must happen three months in a row before I think of switching meds, and even if they do but I’m not having symptoms, I will stay on med. I am at a crossroads right now because my tumor markers have risen three months in a row and I’m having symptoms. I’ve been dealing with stomach mets for six years this October, and I’ve been on three lines. Just letting you know you’re not alone.
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@claireinaz elevated liver enzymes are a known side effect of Verzenio. According to EMA guidance on managing toxicities, increase in AST and / or ALT up to 3x ULN (Upper Level of Normal) do not require dose adjustment. As a matter of fact even G2 toxicity (AST/ ALT 3 to 5x ULN) is not an ‘immediate danger zone’ as my MO puts it, as long as total bilirubin remains low.
My liver has been a verifiable mess at diagnosis, so she started me on 100 mg. We tried 150 four weeks in, but it was not a good idea, enzymes jumped up and we lowered the dose again to 100 mg. At the end of June i had an issue with liver enzymes again and had to take two weeks break from Verzenio. However, my MO and I both think that it was likely due to the fact that my liver stents were completely blocked. Stents are fixed now and I am back on 100 mg.. Blood test this week should shed some light on values dynamics.
Regarding tumor markers… is there any other possible explanation for an increase? Inflammation?0 -
Hi lacombattante, no inflammation. Other than Stage IV c, I am healthy as a horse, (dark grin). However, my MO isn't too worried by any of this. I sent a message on the portal, and her nurse said Verzenio most likely made the ALT jump, and it is really a few points over normal actually, and that they aren't too worried about the increase in markers, etc. So I guess I will (my only choice) have to trust that if I was in immediate danger, they'd be doing something about it. She is not interested in changing meds as she wants to see Oct. scans first.
kbl, dang it—weight loss is no good. I hope you get some news about how to stop it soon.
laguna, I understand the fatigue. I was dead on Saturday the day after Fulvestrant, and I couldn't figure out why till I remembered tx the day before. I find myself taking naps more, all that, and I was never a nap person.
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hi, @claireinaz
Weight loss is me, not Kris (@kbl). Started to drink protein drinks. Hopefully it will help. I am raking naps for fatigue, but my worry is mutation that is resistant to CDK4/6. Next step will be chemo, but I was only dx in May, so it’s probably shortens my time as I have less options. So as long as you see the numbers react to the treatment it’s a good sign. When they resistant they became stable at a certain above normal level and longer respond. As long as you feeling good, don’t lose hope.
Hugs
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Mine have never been normal since dx, and are rising. They did react dramatically to Verzenio/Fulvestrant for the first five months beginning December, then started climbing. My worry is the same as yours-resistance.
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They should retest you for resistance. It will probably require another biopsy. But from what I observe they don’t pay much attention to the numbers, but mostly the progression, measured on CT, and new symptoms. And everything is very slow. I understand that we are a priority #1 to ourselves, but they have a lot of patients. For me it’s difficult to just sit and wait for progression. If it’s up to me I would go for surgery. But it’s not helpful as with the ILC it’s in the blood and will pop-up somewhere else. When I was first diagnosed back in 2008 I had few friends who were also diagnosed with ovarian, pancreatic or stomach cancers. What scares me most is that time when you can no longer control what’s going on with you. Sad
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hi @kbl
Haven’t heard from you lately. How are you? What are these new symptoms? I sometimes have some symptoms that I figure out myself on how to address. My stomach dumps the unprocessed food I eat into my guts. I am hungry, but eat normally. Apparently this is a dumping syndrome that happens to people after GI surgery. I guess since I have cancer in my stomach and liver it doesn’t absorb the nutrients and that’s why I am not gaining wait. But I found out laying down after the food intake helps to keep it in the stomach a little longer. Breast Oncs don’t always know about all the symptoms if they are in the different parts of the body.
Hope you are ok.
Hugs
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@laguna24 So sorry for the delay. I thought I responded yesterday.
I’m doing okay. I’m switching meds to Enhertu starting on August 19. I am having symptoms of the mets waking up. My symptoms start out with the golf ball feeling in my throat and nausea. I have not lost weight and can still eat, but I’m trying to get ahead of that. I’m taking a three-week break from meds.
I’m sorry you are having issues with your stomach. I don’t have liver mets as far as I know, so I have no idea what that feels like. I hope they can help you with something for that. I haven’t had the symptoms you’re describing, so I’m afraid I’m of no help.
Thank you so much for thinking of me. I will keep you posted.
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Hi ladies, new to this board. I am amazed how informed you all are about your genetics. I am not aware of any factors. Guess I need to ask more questions.
Kisqali sent my liver enzymes over the roof (1.200). switched to Verzenio 150….couldn't handle diarrhea. Then down to 100, much better, but liver enzymes are creeping up again, so told to stop yesterday. She wants to wait for liver enzymes to come down, and then try 50. Been at this trial and error stuff since October 2023, when mets in spine was discovered following a car accident. The doctor in ER did not even tell me what the radiologist found….I READ IT the following morning on the stupid take home sheet. God was watching over me. Initially dx in 2003.
I do not think the CDK's are going to work for me. What is Enhurtu?
You ladies are amazing, thx
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@laguna24 Hi. Started Enhertu on the 21st. I’m on full day two after infusion and actually doing pretty well. I had nausea yesterday afternoon, so I took an anti nausea and slept so hard. I’ve already had a nap today but am not feeling too bad. I’m hoping to be one of the rare ones who have few side effects. I hope you’re doing well.
@cgs19 I’m so sorry you’re here and having trouble with your liver enzymes. Have you happened to have a CT of your chest, abdomen, pelvis? If not, you may want to ask for one to make sure it hasn’t spread to your liver. Mine are in my bone, bone marrow, and stomach and just found out from a CT that I have wall thickening in my descending and sigmoid colon, so probably there now too. I just started Enhertu as my fourth line. I was on Ibrance first, then Xeloda and Faslodex, Orserdu, due to an ESR1 mutation, now Enhertu. It is a combination antibody drug conjugate and chemo. I’ve just had my first infusion of hopefully many. It’s every three weeks. Definitely not as convenient as pills.
If you haven’t had genetic testing, as in things that are passed down through family, I would ask for that. There is also genomic testing, which means it’s not inherited but develops in your cancer cells, you could ask for that. Believe it or not, you may not have a BRCA gene from family, but it is possible to have a mutation or other mutations in your cancer cells.I am, by no means, a doctor, but I’ve learned these things by being at it for many years.
Please keep us posted on how things are going.
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Hi Laguna, thanks so much for your help.
I have had CT & PET scans, liver biopsy and bone biopsy. My understanding is that lobular is very sneaky to detect. So far, I am clear of anything in liver, but I totally understand that this disease is a "crap shoot". I am going to ask my Onc more questions regarding genetics. I am doing CT and PET about every 3-4 months.I feel very fortunate to have a doctor that calls me at 7:00 in morning or 8:00 at night. She is the same oncologist I had 21 years ago. Thanks so much, and let's enjoy the day!
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@cgs19 that was me who wrote you. CT and FDG PET scan have never worked for me. I just wanted to let you know that. I’m glad it wasn’t found in your liver. Meds can be so weird in what they cause. Please keep us posted, and I hope you can get on something that doesn’t cause the high numbers.
KBL(Kris)
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I am glad to hear your liver is clear. It’s a great news. From other threads I see that people with bone involvement only live for years and maintain a normal lifestyle. For bone mets they use radiation if lesion is big enough and/or cause any discomfort.
as for CDK4/6 if you cannot handle it maybe AI is a better option for you. Glad that you have such a good MO. As for PET scan lobular detected only by FES PET scan and not good to detect it in liver. I had controversial results between FDG PET, FES PET, bone scan and CT scan. CT showed the most, even tiny lesions on my bones, so my MO decided to go with CT from now on.I hope this chemo will keep you PFS for a long time. I’ve heard good stories from HER2 low treatment that addresses the entire picture for HR+/ HER2 low. Mine is also low. Genetic test came back and I am ok with only inconclusive mutation in PMS2. But this gene points to colorectal cancer. Maybe that’s why it progressed to my GI. Genomic shows BRCA2 and RB1 deletion. Will have my CT done on 28th. In a meantime I am still on Kisqali/Letrozole and trying to work on my diet as with my mets to GI I have acid reflux that drives me nuts sometimes. I can feel these gasses inside of my guts. And I had a dumping syndrome where food goes right into my intestines without staying long enough in my stomach. That’s why I cannot get any weight back. But at least it’s not going down anymore. Was recommended the book by dr. Aviv who developed hi pH diet to address acid reflux. Will see if it works for me.
Hugshttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC9943960/#:~:text=For%20patients%20with%20HR%2Dnegative,lines%20of%20single%2Dagent%20chemotherapy.
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omeprazole is known to increase colon cancer if taken on a daily basis. My GI prescribed it to me, but my MO asked for it to be changed to Famotidine.
Some studies suggest that omeprazole (Prilosec) and other proton pump inhibitors (PPIs) may increase the risk of gastric cancer. PPIs are used to treat acid reflux, gastroesophageal reflux disease (GERD), and Helicobacter pylori (H. pylori) infection by suppressing stomach acid production. However, the body may respond by producing more gastrin, which can promote the growth of gastrointestinal tumors. Other potential side effects of long-term PPI use include: Stomach lining inflammation, Bacterial overgrowth, and Elevated gastrin levels.
According to a 2022 World Cancer Congress abstract, researchers found a significant association between omeprazole use and cancer risk, with a hazard ratio (HR) of 1.51 (95% CI, 1.06-2.14). Another study found that the risk of gastric cancer increased with the duration of PPI use, and that the risk was more likely for people taking PPIs for more than three years. However, other studies have contradicted these findings.
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@laguna24 Holy cow. Thank you for this. I am admitting I had not heard this. I believe the reason would be that I was given the Omeprazole in 2019, and this wasn’t out yet. I knew not to take it when I was on a certain cancer drug, but this is something I did not know. I will switch back to Pepcid. Thank you. Kind of defeats the purpose if I’m on Enhertu trying to help my GI tract. I haven’t ever taken Omeprazole long-term, usually only one month, but I won’t even do that now. Thank you for showing me this. I’ve maybe taken it on and off four times for a month over those years, and I definitely know it’s not what caused it to spread to my stomach, as I was never on it before then.
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kisqali/letrozole cycle 3 cleared some of my mets, but caused rash that I cannot control. Heavy antihistamines make me sleepy most of the next day, light - don’t work. Any ideas?
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