Just diagnosed with ILC mets

Lana,

They didn’t even read anything for my peritoneum because there is too much tracer uptake to say for sure. I would think if it doesn’t show on an MRI or CT, the one way to know for sure is a laparoscopy. I’ve never chosen to do that at this point because my treatment would be the same no matter what.

I’m on Medicare Advantage because I’m under 65. What I would do if I was you is ask for manufacturer help. My manufacturer is paying for mine so that I haven’t paid anything. If you are under a certain amount of income, they may do that for you. Please ask your doctor to check on that for you. It should only be that high the first time, and then there should be no more cost for the year. Up until this year, there was that the first month and anywhere between $600 and $800 every month after until you hit the catastrophic phase. Next year the copay will be no more than $2,000 for the whole year.

Lana,

I hope you can get the financial help. Nobody should have to pay for those.

My story is rather long. I had a car accident in 2013. I had lots of back pain from it, so I started seeing doctors for the pain. I had an MRI, and surprisingly, the report came back with many lesions seen in bone and bone marrow, so they suspected metastatic disease. They thought it was multiple myeloma, so I had many blood tests and urine tests for that. They all came back negative. They said unless it showed in my bloodwork, they could not treat it. Unfortunately, my cancer is not seen in CT, bone scan, or FDG PET, so once those all came back “negative,” they sent me on my way.

Fast forward to 2015, another MRI with the same result, suspected metastatic disease. I ignored it that time because other than back pain, I felt okay.

2016, another MRI, worsening suspected metastatic disease. More testing for multiple myeloma. Negative. All other testing negative. The cancer got to fester for six years. Then it decided to spread to my stomach. I had pretty bad symptoms of not being able to eat, losing 17 pounds, and after six months, my primary doc sent me for an endoscopy with my phenomenal gastro, who said my stomach looked totally normal, except for gastritis, but, thankfully, he took biopsies. He was floored when the tests came back that it was lobular. I then had a bone biopsy in 2020 to confirm that’s what had been in my bones all that time. Yes, it was.

As far as the Xeloda, I was starting to have trouble eating again and losing weight on the Ibrance after two years. I knew I was progressing. My doctor wanted to put me on Faslodex, and I asked to go on Xeloda as well. It was not protocol, but she put me on it. After being on it 18 months, I switched doctors because I moved. That doctor said she didn’t think the Xeloda was helping me at all and took me off, so I then was just on Faslodex another six months after that. I felt I was starting to progress on the Faslodex, some trouble eating and tumor markers creeping up. I switched doctors again closer to my home, and he tested me for the ESR1 mutation I was very surprised I had developed it. I didn’t have it in 2020.

Now on Orserdu eight months. My tumor markers had gone down to the lowest they had been since 2016. I can still eat and have not lost weight, so to me, it’s working. My tumor markers are creeping back up slowly, but until I can’t eat again, I may stay on it. It will just depend on mostly how I’m feeling.

Sadly, I mostly go on symptoms and markers. I haven’t scanned since July of last year.

I forgot to mention each time I thought I was progressing, I had an endoscopy to confirm. I had it in the beginning in three spots, then it was down to one and would go back up to two, things like that. I’ve never been no evidence of disease. We’ve just been able to keep it so-called stable.

Yours is also sad. I know of Dr. J. I’m so glad you have her. I would love to be closer to go to her. Please keep me posted on your PET and the blood tests. I didn’t have any mutations in 2020 but did develop the ESR1 from the Letrozole. I’m so glad you have a scan that can see the lesions in your bones. The tests you’re having are so great. 🤗🤗

Hi Laguna24, sorry to be so quiet. Ugh, peritoneum: every time I wind up seeing it on a report I am triggered. Apparently I have a spot in my lung and then bladder was probably the worst and what led docs to search to see why I was peeing my pants, and then they found the recurrence/s. Well, dang.

I hope the posts above helped you—they helped me. I have been on Verzenio and a monthly injection of Faslodex for about six months and other than a bit of sleepiness in the afternoon, and not always, I am doing really well.

I have the second go-round of scans next week to check on "things". I currently have tremendous scanxiety.

Claire in AZ

Hi Laguna, how are you doing? I just had my second set of scans yesterday and I'm pretty scared of what they might show. My fear is bringing in some dark down thoughts…

Claire

Hi @laguna24 I’m doing well. I am thinking the Orserdu is still working, although my tumor markers are inching up ever so slightly. I can tell it’s working on my stomach mets because I’m still able to eat, and I have not lost any weight yet. Those are my signs that a medicine is not working any longer. I’m almost done with my ninth month, and the median progression-free survival on this one is eight months, so I’ve made it past the median.

I wish you well on the Kisqali and great success. Don’t be discouraged if your neutrophils drop below what they like and you have to stay off more than the one week off that you get after 21 days. That happens to a lot of people.

I’m sending you hugs and hoping the meds make you start to feel better.

@laguna24 I also have hypothyroidism. I take my thyroid med first thing in the morning. I’m here if you need anything. I’m so glad if I can help in any way. Please keep me posted. Hugs 🤗

@laguna24 Yes, the FES PET did see the cancer in my bones, but MRIs are what definitely see it in my bones. Have you had an MRI of your lumbar, thoracic, or cervical spine?

I’m glad you figured out it was the Letrozole causing your issues.

hi laguna24, I had scans read and there is no progress but my markers went up by 100. Has anyone else had that happen and they went down again? They were really high at the beginning and dropped by hundreds when I started tx so my doc is a bit worried but also happy about no progress. Pericardial fluid, which I didn’t know was there, and the ascites, which was small but still there, is completely gone. How can markers go up and all that reduction in fluid and nothing on scans? I’m terribly depressed and trying to go to yoga and fitness classes to shake it off. I feel great, still, like the best shape of my life. I hiked 7 miles with my girl group at 8500 feet Wednesday. I live in the mountains.. but I’m still anxious and nervous about that one stupid number. Feel like the tx is failing, after only 7 months on it. Claire in Az

Hi all, thanks for your responses. I dislike being dragged into the #s game that MOs seem to focus on. I feel great, and let that keep my mind strong. Seems to me keto diet and curcumin have some benefit for someone like me, but I don't want to lose any more weight, so I'm reading the science carefully right now.

We adopted a rescue dog last week. That is a true act of faith and hope for someone with Stage IV. Her name is Juniper, and she's a mellow five year old girl.

@claireinaz What a beauty. She reminds me of my brindle I had when I was a child named Bootsy. I hope you enjoy her immensely. I’m sure she’s so grateful.