Just diagnosed with ILC mets
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one question about FES PT: if the uptake in peritoneum is high it means I do have something there, correct? Or you’re saying it can act like false positive?
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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.
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Kris,
I hope they will work it out. The pharmacist said he will try to get this manufacturing coupon and work with the hospital’s financial dept.
Wanted to ask you about the dates you have on your profile: 2013. How do you know you were misdiagnosed in 2013?
2021 - you started chemo. Does it mean you progressed on CDK4/6 and letrozole?And how this Orserdu working?
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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.
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sad story. Based on the status of my bone mets I can say it’s been there for a while. But on April I had a problem with my food not going down to my stomach. I asked my GI for an endoscopy and one biopsy can back positive with the same lobular cells. But it was deep in submucosa and my onc sent me on the FDG PT. That’s when my liver mets were discovered. I asked for an FES PT, but my onc didn’t know about it. So I found my new doc who is on that video I posted earlier: Rachel Jenkowitz. She specializes in metastatic lobular carcinoma. Guardant360 shows no mutations as of now. She sent me for CT that shows all my lesions in bones and perineum free fluid. Next is FES. Only one marker is up: CEA. More blood work will be done and ctDNA. Also some test on my liver biopsy called CARIS. But she decides to start me on Letrozole and Ribociclib. I asked about Abemaciclib, but she wants to save it for later after I progress as it works on PKI3CA and ESR1 mutations with Fulvestrand.
Will see how long I will respond to the first cycle. Hope is all we have.Hugs and kisses.
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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. 🤗🤗
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How do you know it’s from Letrozole? I had my original cancer in 2008 and was on Arimidex for 7 years. Also AI. I was on Reclast for 7 years, switched to Prolia for osteoporosis. Never had any symptoms of bone mets. And it’s all together
Will share with you all I know
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sorry, I shouldn’t have ask this question about letrozole. It was your first line of treatment.
I take Gas-x at night to deal with gas that keeps me up. It helps to get about 6 hours of sleep.1 -
It’s okay. From my understanding, AIs are what cause an ESR1mutation, so any of the AIs can cause a resistance. Now I know an AI won’t work for me. If you don’t have the ESR1 mutation, that’s good, you can still use an AI.
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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
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Hi, @claireinaz
Thank you for being there. I too run to the bathroom quite often, but I contribute it to the liver and pelvic mets. Will know more of the scale after 6/26 FES PET scan. From @kbl learned it shows more than FDG. Learned to take one day at the time and try to stay active. Some aches in my back, but swimming helps.
Stay in touch.
Hugs and kisses
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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
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Hi, @claireinaz
Had my FES scan done on Wednesday. Shows inconsistent results with all my other tests. Only CT says I have bone and peritoneum involvement. FDG, bone scan and FES all deny it. The only confirmed sites are liver and upper stomach. Will be discussing it with my doc on 7/2. Still waiting Kisquali to be approved.
How do you feel physically? How can you tell if meds are working for you? You probably had some bloodwork done as well. Do you see any markers going up? Like Cancer antigen 15-3, Cancer antigen 27.29 and CEA? If not you may be on the right track with your meds. I also found this new info. They will start testing it in USA this fall. There is hope.Hugs and kisses
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Hi, @Claireinaz
How are you? How are your test results?How do you feel? Any news? Any changes?
Love and hugs
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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.
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Kris,
Thank you and Happy Holiday. Looking forward with hope the med will give ne back my night sleep. So far my stomach wakes me up in the middle of a night. I have to take to take my thyroid medication on the empty stomach, wait for about 40 minutes and then go eat something. I eat every three hours or so. It’s like a cycle: at the beginning of life you have to eat often, and the same is now. This thing inside if me is constantly hungry and fills me with gasses.
Thank you for your support and positive attitude. Means a lot to me.Hugs and kisses
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Thank you, @kbl Kris
Figured out last night my insomnia and GI gasses and bloating that keep me up are actually from Letrozole. Changed time to daytime instead of before bed to see if it will be any better. I though my GI met progresses like fire, but apparently Letrozole was to blame. :)
I had my FES PET/CT and it shows no uptake in my bones. Confirms GI, but not bones. The only one test that shows skeletal involvement is abdomen CT. FDG and Bone Scan don’t see it either. You had it done as well. Was there any estradiol uptake in bones?
Hugs
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@kbl no, I had FDG, Bone scan, Abdomen and pelvic CT and FES - all, but CTs are negative for mets in bones. From the FES:
The peritoneal disease, left hepatic lobe metastasis, and widespread sclerotic osseous disease described on prior CTs are not FES avid. These findings are better anatomically characterized on prior dedicated CTs and FDG PET/CT.
But FDG doesn’t see them either. As for liver it’s a known limitation of the FES. It has been confirmed by FDG and biopsy. Strange. My onc restaging me based on CT. Desided to have a second opinion of radiologist. Not that it will change the treatment, but who knows! Today I had my CARIS report results. Maybe if my mets shrink enough I can do RFA on my liver or stomach resection.
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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
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@laguna24 I would definitely ask for a spine MRI. I would be shocked if it doesn’t pick up your bone mets.
@claireinaz I’m sorry about your tumor marker going up. I usually always wait for three straight months of upticks before thinking I’m progressing. I would keep an eye on them for now and see what next month brings. If you had some inflammation or a recent cold, that can also make them go up.
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Agree with @kbl. Tumor markers go up while in treatment when a lot of cancer cells die and released to the blood. Give it some time to settle. Maybe it’s a good sign if other tests show the regression of mets.
Stay positive and enjoy your active life
Hugs to all
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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.
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@claireinaz way to go! She is beautiful. Enjoy and keep your mind on positive things. That’s the most important and the best we can do.
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@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.
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Hi all,
I just had my monthly check up. Although my MO didn't go over my labs with me, I assumed if she was concerned about anything she'd say. I just checked them and my ALT is over the high norm of 45, to 53. The rest of the enzymes are normal. My CEA dropped by two 10ths of a point from last month. The lowest is was was 7.2 in March, 8 something, then 11.4, now 11.2. It doesn't sound like tumor shedding to me.
Would that one liver value be due to Verzenio? I also stopped taking a lipotropic liver support supplement to see what would happen, and I feel I should go back on it right away since my liver values have all been terrific till now.
If there anything good about this blood test? My CEA isn't higher? It dropped two points? The rest of my enzymes are normal? I'm so scared and confused as to why the Verzenio isn't continuing to drop everything to normal.
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Hi, @claireinaz
Looks lime the numbers are more or less stable. When was the last time you had genetic testing done? It can show if you have any mutations, specifically ESR1 and RB1, responsible for cancer spread. Yes, Verzenio can cause elevated ALT. So this elevation has an explanation. But as long as you feel ok without new symptoms don’t get upset. Enjoy your dog and stay positive.
Hugs…0
