Bone Mets Thread
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fighter, its not the case that Faslodex can't work on any ESR1 mutation, there are just a handful that it does not take out. Expect to respond, tho it may not be the best response anybody ever got- one analysis of a trial showed people going in had a series of ESR1 mutations and then when they progressed they had lost the mutations that Faslodex does degrade, but gained mutations like the Y537S that Faslodex cannot handle. And then at that time they can go on Elascestrant or something similar to get rid of the ESR1. Also consider adding Celebrex, it is a good inhibitor of PI3KCA pathway- and at the same time its an NSAID and helps with joint pain
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Congratulations @sunshine99 on improvements. Your news has started my day with a smile and happy heart.
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@sf-cakes Im thrilled to hear that you are progressing well!
@sunshine99 Hooray for Truqap! I look forward to hearing more good news in the future.
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Hi Ladies, I have so many questions. I am feeling again overwhelmed. I had my Pet scan on Friday, i meet with new oncologist this Thursday. (my regular oncologist is on disability)Here are my questions I hope you can help me with. 1)I have multiple mets in my pelvis and other places… do I bring up any pain to doctors?. Itis manageable but getting worse at night. 2) Because I was blindsided by this diagnosis, remember I had bone scan in March of 23. All scans were good i was going to switch medical plans because I was turning 65 long story and quite by accident went to ER did CT scan for something else and multiple mets seen, therefore I am worried and anxious about everything and questioning everything. I dont want to be a pain to the doctors but I have a lot of questions and I am super nervous about meeting the new doctor. what things do I bring up? Ladies please be patient with me if these questions seem silly. The reasons why I had bone scans in March I was having pain. I have degenerative disc disease. I have had it for years and was always paranoid about bone mets. My tumor markers went up in March to the abnormal range only slightly oncologist ordered bone scans. Nothing seen in March . 3 months later she rechecked markers they went down only slightly elevated all sacns good, then November when i went to ER for something unrelated. And CT scan shows multiple mets. I know that where my anxiety comes from.
3) How do I know of I have a fracture?
4) Have some of you never had fractures?
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@jen1 - imo you should bring up whatever questions you have. And yes, it is important that you mention your concerns and pain to the new onc.
I have not had any fractures so far. Although one lesion in my skull has gotten bigger and I will be having radiation on that area, my mo does not consider it to mean progression as there is no progression anywhere else. For now, she is not making any changes to my treatment.
Good luck with your appointment on Thursday.
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I would definitely mention pain. I had a CT scan that mentioned numerous healing fractures. That’s when they added Zometa. I was surprised because I hadn’t been in pain. I worry about my back which is deteriorating due to age (83).
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jen,
None of your questions are silly. You are important and so is taking care of yourself!
Please don’t see yourself as being a pain to the doctor for asking questions. It is part of their job to answer questions! Think about how much money your insurance is paying the doctor for your visit. Probably somewhere between $200 and $400. For a 15 minute appointment! Get your money’s worth! Doctors are used to patients having lots of questions, it is a normal occurrence.
Definitely tell your doctor about your pain. The person (usually a nurse) who takes my vitals at the doctors office usually asks a series of questions, one of them about pain: if I have it, where it’s at and rate it on a scale from one to 10. I will tell both the nurse and the doctor if I’m experiencing any pain.
if you’re feeling nervous and worried about meeting your new doctor, you can even mention that when you see them. I hope it is a good appointment for you!
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going2beat this/thank you
wren44/thank you
divinemrsm /thank you
Thank all of you for your quick response.
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divine wrote exactly what I was thinking. You are employing the doctor and her/his job is to answer and explain anything and everything that concerns you. You might want to write down any questions you have prior to your appointment so that all of your concerns are addressed. You can also record the appointment so you don’t forget anything that was said.
12+ years and no fractures for me but I imagine it hurts! Please bring up any persistent pain to your doctor. Take care
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Jen, bring someone with you if your nervous- they will remember everything you don’t (from experience!)
I’ve had 3 fractures and a compression fracture. For me (in hindsight) I know when it happened but I thought I just had a bad back.
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Jen - I second Marge's suggestion of taking a friend with you. I did all of my initial chemo and radiation alone. 3-4 years later, when I became metastatic someone in the ER told me that they always recommend that you take someone, so I started taking a friend of mine to all of my stage 4 appointments, and it has been a huge help. Yes, as Marge said, she remembers things I don't and is a moral support to have there too. I also think everyone is on their "better behavior" when there is someone else there - doctor, patient, and friend. My friend also has a question now and then that is always pertinent and helpful and she brings up things that I might not have though about. She's an old childhood friend from the "hood" if you will, and our families all knew each other for years, so I really trust her. It's been a much, much better experience this time around since I've been accompanied by my old friend. (If you have one, I think a husband would be fine/great, but I've been alone now for years, most everyone else is busy or moved away, etc., so my old friend was pretty much my only option.) Also, I have had fractures (spine, rib, sternum). Some hurt and I knew when they happened (especially sternum), others didn't. It is really hard to tell a fracture from a muscle strain.
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Jen1, wow, you have so much going on right now. Your questions are not silly. How are you (or any of us) supposed to know this?
With regard to pain, YES, bring it up to your doctor. In the beginning I saw an ortho oncologist as well as my medical oncologist. I got several radiation sessions to my spine/hip/femur which really helped the pain level. If they use the word “palliative” don’t freak out like I did. It just means they’re treating the symptoms, not trying to “cure” the cancer. I assumed palliative and hospice were the same but they’re not.
My ortho onc (OO) was concerned about the stability of my femur, but so far it’s been ok and I haven’t needed a rod in the femur. I do use a cane for stability. I was embarrassed at first but got over that. I also asked my PCP if she would sign a form for me to get a disabled parking placard from the DMV. It helps when I’m in pain or don’t think I can walk very far.
I try to remember when something starts hurting so that I can tell my doctor. Sometimes, it’s hard to remember when something started. Sometimes it helps to make a list of questions or concerns. As others have said, don’t worry about being a pain or a bother to your medical team. They’re there for YOU and if you don’t mention something, they won’t know. You know your body better than anyone.
Sending you gentle hugs and hoping you get some answers from your medical team very soon.
Carol
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Hi All,
Reminding you that we offer a free caregivers meetup for partners of someone with MBC every other Tuesday.If you are a caregiver, or have a partner who you think could benefit, please share. We meet today at 4pm, ET.
People need to here to participate:
https://breastcancer-org.zoom.us/meeting/register/tZ0rcuiqqj0vH9yFHXL9FE-RcoXHzWNjuwyW♥️ Thanks for sharing,
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exbrnxgrl/Thank you. Thank you for the positive words
margesimpson/ will do that. My daughter will come. Thank you so much for your kind words.
threetree/You bring up a good point about people being on their better behavior when someone else is there. Thank you for your encouraging words.
sunshine99/Thankyou. Thats a good idea to start writing down when something starts to hurt. Thank you for your comforting and kind words. Thank you for the hugs.
Thank all of you. I hope I did not forget anyone. I will give you all an update after i meet with new doctor on Thursday. I will have results PET scan I took on last Friday. I hope there is no progression.
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hello, I just wanted to share my experience with bone-only Mets. Original diagnosis 2016 at age 39, postpartum. Metastatic diagnosis was March 2020 while on tamoxifen. I’ve been on ribociclib & letrozole, zometa and zoladex for the last 4 years, my first line. Tumor markers have been creeping up and most recent pet scan showed a couple spots that were waking up again, with increased “hot spots” on the PET/CT. So my oncologist wants to switch medications. I am moving on from Kisqali and letrozole.
My MO gave me two choices :1) Orserdu
2) try to get into clinical trial for Giredestrant, a newer SERD. But only 50% chance of getting the study med
I’m going to start the screening process for the clinical trial! I’m bone-only mets, but the research nurse said that didn’t immediately disqualify me from this trial.
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kkcita, I guess the cancer developed ESR1 mutation(s), or otherwise faslodex with Verzenio would also be an option? And if so, then the Giredestrant trial is not great because the control arm is just Faslodex?
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@cure-ious I did have the ESR1 mutation develop. The study is for giredestrant+everolimus vs physicians choice+everolimus. Link to study below. I think my doctors choice would be fulvestrant. But she wants me to be on giredestrant+everolimus
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Hi Ladies I wanted to give you all an update. I had my second PET last Friday scan since my bone mets diagnosis in November. I also met with my new oncologist until my doctor returns from leave, The good news is there is no progression and my bone lesions according to the PET scan have decreased significantly. She did not make any change to the Verzenio still on 100 twice a day. She said this dose has shown to do as well as the higher dose. I am still experiencing some lung discomfort and am still worried that my lungs as inflamed as reported on my CT scan when i went to ER a few weeks back prompting lowering the dosage of the Verzenio. The oncologist said she thinks I have a cold of some kind because the recent X rays showed nothing. And Pet scan showed nothing. Anyway, I am grateful that this protocol is working for now and will be diligent about any further discomfort lung issues. I will go back to ER if I am worried. The new oncologist answered my questions. She is ok. My next 2 monthly appointments will be with the Nurse practioners. I start Zometa in 3 weeks. My regular oncologist will return from leave sometime in the summer I am hearing.Ladies thank you all for your love and support. I hope soon to be able to give comfort to others like you all have done for me. I will keep you posted and will come back with more questions LOL.
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kkcita- yes, the Giredestrant/Everolimus arm of that trial is one of just a couple regimens that would take care of both ESR1 and PI3KCA mutations. I tried for LOXO-783/Imlunestrant but the trial had not yet opened that arm. ARV-471/Everolimus is another option- hope you get the trial arm you want and it goes smoothly, so these drugs can move along the path to the FDA!
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Jen, That sounds so much better!
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hi everyone, I was asking if people knew when they had progression because I suspected that I had and my scans confirmed it. My bones and liver are active again. My MO rang me because I’m not booked to see her again until after the school holidays. My biggest worries are my hips and neck. I use them a lot! They’ve been giving me a fair bit of pain (but it’s never constant). I was just wondering what you guys use to treat your pain. She mentioned radiation - I’ve had some on my hips and lower back but I think she said C5 was a tricky spot- I may have imagined that but I guess it might be tricky because of the throat?
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jen, the news of your PET scan sounds great: no progression and bone lesions decreasing significantly. How are you feeling about the results? I hope the issue with your lungs resolves itself but it’s smart of you to monitor it and get to the er if necessary.
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marge, I have a fair amount of arthritis and cannot differentiate between it and the bone mets as to what might be causing any bone soreness or ache. So I cannot predict progression due to that. I use arthritis strength Tylenol for any aches and pain as I am allergic to ibuprofen and Aleve. I also sometimes switch between using a heating pad or a cold gel pack. Once in a while, I also use a lidocaine patch.
Is your oncologist going to have you consult a radiologist about the C5? They might be able to offer better insight about the trickiness of radiation to that area.
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thanks divine, I hadn’t considered a heat pack and I have a prescription for the arthritis strength tablets that I didn’t fill so I’ll give them both a try. If the heat pack helps that would be great.
I was picking the kids up when I was talking to her and I was gesturing to the kids that was on the phone so didn’t have 100% focus. She said she had contacted radiation and they would make an appointment, I only half heard the comment about C5.
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Hello ladies. It has been awhile. I have been reading back some. I have some questions maybe some of you have experienced. My latest PET scan in February showed no real progression, but my CA15-3 keeps rising. I have been on Faslodex and Ibrance for about 2 years. If my doctor decides to do a biopsy looking for a mutation, how prevalent is a blood biopsy? One oncologist I see in Florida says you can’t get much information from bone. Also, any ideas on the next step if my current oncologist decides to change my medication? Is that blood marker going to drive the decision in light of a relatively unchanged PET scan? Any input would be greatly appreciated.
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Im still bone only and when I was due to move to my third line we had to do a blood biopsy as it was the only option. You get a load of information from one that is far better snapshot of what is going on in a broader view of your body than a single bone biopsy would. I ended up on Xeloda as my biopsy didn't show anything really actionable at the time.
I cant imagine your doctor will move you until there is a scan-reason to move, hell want to get every last drop out of your current line. So while the biopsy will give him directional information and give some time to get paperwork done and determine some options (some may not be your preferred for whatever reason) you may still have another clean PET or two before the cancer finally shows itself.
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@gigil a blood biopsy can determine if you have any targetable mutations. I did not have any a year after I started Ibrance and Letrozole, but my new onc did one in August of ‘23, and I had developed the ESR1 mutation and am now on Orserdu. I would definitely have one to see if you have any mutations.
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Thank you both so much for your insights and experience. I find it difficult to find anything to read about progression of disease and meds. I sent my onc a list of questions. Hopefully she will get back to me. I just got back from an eye exam after four years of Covid fear. They tell me I have very good eye health, which is always good to hear. I have been getting optical migraines after my Faslodex shots, so I FINALLY got up the nerve to get things checked. Nice to hear a positive report. Thank you again. I live in northern Minnesota and we are just seeing the beginnings of spring, ❤️
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@gigil I’m so glad your eye exam went well. I have a question. Are your tumor markers going up a lot each time, a few points each time, ticking up and then dropping? Also, if your tumor markers are accurate, sometimes they start to increase before imaging picks any progression up. For myself, imaging doesn’t work for me, so I rely heavily on my tumor markers and how I’m feeling. If my tumor markers jump three times in a row with more than a 20-point jump or 30-point jump, I’m most likely switching meds. I have mets to my stomach as well as bone and bone marrow, so I usually also get the symptoms back that the med is not working any longer there too. I’m on Orserdu right now, and my tumor markers have dropped for five straight months. That is the first time since I started treatment that that has happened. I’m still not normal but the closest I’ve ever been. Orserdu is my third line of treatment. I’m so grateful for it. It’s only been FDA approved since January of 2023.
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kbl, interesting comment about the tumor markers. My CEA has been inching up, too. Ibrance failed and esophageal mets were found. My last blood work showed the CEA still above normal, but some of my tumors appear to have shrunk, (as shown by my most recent PET. I'm now on Truqap. MO doesn't seem overly concerned about the markers, but, of course, I am. I do like my MO but am feeling a little neglected.
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