Bone Mets Thread
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TLD - I agree with what threetree said. I'm also not a physician or any kind of expert in radiology either. My basic understanding of imaging modalities is that they are all similar but not the same. Because each is good for different things they often complement each other for diagnosis. In the case of bone lesions MRI is probably your gold standard. Any time a CT or bone scan has been limited I have been sent to MRI. MRIs are sensitive and specific in bone and soft tissue. CT can be less sensitive to smaller lesions in the bone and soft tissue. Nuclear bone scans, while very sensitive to bone activity, aren't specific at all in determining bone mets vs fractures or other bony processes. I think cost factors in also. MRI is much more expensive than a bone scan or CT and insurance companies sometime require a cheaper modality to be used first before approving an MRI. I have run into that issue with my insurance company which seems completely inefficient to me but so does most of American health care. I'm glad to hear that the news may not be as bad as your doctor first thought. Fingers crossed for good news from the MRI.
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Thanks, emac, for the info! My oncologist definitely said that the lesion was large and should have been visible on the scan (about an inch wide). But of course, he admitted that there is a chance that it's there and the scan missed it. Hence the pelvic mri, but I'm going to try to remain hopeful! He was really hopeful today which is a big change from 2 weeks ago!
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After reading EMac877's post I wanted to add that like she said, the tech also told me that old fractures, etc. will show up on the nuclear bone scan and they can't necessarily differentiate from old bone problems vs cancer. The scan apparently just shows that a given bone has or has had something going on with it. They actually asked me about a lifetime of "bone" related things (e.g. any previous fractures and more) just to get some idea that would help them discern things a bit better.
Tld2017 - I also wanted to add that I too have had much higher blood pressure, and heart rate, since learning of my new bone mets stage 4 diagnosis. I think it is stress and anxiety, but so far even when it's all "down" it never gets to the lower levels I used to have (I have home gadgets that use most days). I suppose it's a barometer for how far I've come or not come in putting this somewhere in my mind, in a way that I can move forward and be functional for whatever time I have left.
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Thanks, Gigil, for the info on your biopsy! My oncologist implied that he thought my biopsy would be painful because it is in the sacrum and very deep, so I don't know if that makes any difference. But honestly, I am not too worried about the discomfort of it - I have had so many painful things happen in my 56 years that I've built up quite a tolerance for it. The hardest part for me is the anxiety honestly, much more so than the side effects of chemo and rads, any pain from all the procedures, etc. So if I can get control of the fear and anxiety of all this, I feel confident that my quality of life will be better. I have a psych NP appt on the 7th of March, and hoping she can prescribe a low dose of something to help with it at least while things are still so nerve-racking. I realize after reading the comments here in the last 18 hours or so, and doing some research on my own, that it is true that the enhancing osseous lesion would show up more clearly on the MRI and maybe not on the CT scan and whole body scan with nuclear contrast. But I am going to hold out hope, simply because my oncologist offered me that hope, that maybe it is not as bad as he originally thought. I will get the pelvic MRI done and go from there. He gave me confidence yesterday that he did not give me two weeks ago, that he can help me fight this, no matter the results. I've got to fill my head with positive thoughts! He spoke of how much better cancer meds are now to fight bone mets, so much better than they even were five years ago when I was first diagnosed with cancer. If I can wish anthing for all of us here in this thread, it is that we continue to have hope! Hugs to all!
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tld2017, I have lobular, which is notoriously hard to see on scans. I am full of cancer from skull to femurs in all bone and bone marrow, seen in MRI and biopsy proven but not seen at all on CT, FDG PET scans, or bone scans. I look completely clean on those three imaging modalities. I was a missed diagnosis for six years with no treatment until it spread to my stomach. That’s when we found out what it had been all that time. Lobular is extremely hard to see because it forms stranding and not lumps a lot of the time. I had an iliac bone biopsy, and it wasn’t bad. I had a bone marrow biopsy a few years before that. That was more painful. I hope you’re able to have the biopsy.
Threetree, I hope your biopsy goes smoothly.
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Thank you, tld2017. It will be ten years in August that I was told something was amiss in my spine. It’s been known in my stomach for 3.5. I’m grateful this cancer has been slow growing and that I had a top-notch gastrointestinal who took samples even though my stomach looked normal. If it weren’t for him, I would have been dead long before now. I tell him all the time how much I appreciate him.
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I need to invite you all to my pity party. It won’t be long but it’s a party I must have before I can put on my big girl panties and carry on. I’ve been on a trial drug - a CDK2 inhibitor - since Dec 1. I had high hopes and wanted to get a good 6-9 months out of it. My doctor usually asks if the SE are too much and if I want a dose reduction. I always say that I don’t want to lower my dose this early in the game. I wanted to at least wait until I got good scan results in March. This time she said she didn’t want me going lower as some drugs have a narrow range of efficacy. That made me wonder if the lower dose is seeing quick progression. This is a phase 1 trial so we don’t have much historical data to go on. Then my nurse made 2 comments to me which made me wonder about recent incoming results. Nonetheless, I put it out of my mind…until my tumor marker results were posted yesterday.
Last month my CA15-3 and CA27.29 ticked up. Not what I wanted to see but a single reading isn’t a trend so I was hoping it was just cancer cell shedding. On Thursday, they went up again. Not an all time high for me but too close for comfort. I don’t know what my oncologist’s thoughts are on this because it’s the weekend. So here’s what I’m pouting about…I took my pills as usual this morning and I’m so nauseous and my diarrhea is worse than normal and I just want to stop taking these pills. If they aren’t doing much good, why am I punishing myself? I just want to feel normal again.I’ve already got a regularly scheduled scan on March 20. It’s a CT. I’d rather have a PET but CTs are what the clinical trial order. My last scan was Jan 23rd and even though my markers had already ticked up a bit, they said I had no new bone mets and that my biggest liver lesion was reduced about 40% and the other 2 lesions were stable. I don’t know what to think about this latest increase but I don’t see me taking this trial drug much longer. I’m defeated and want to quit today. But I won’t. But I want to.
End of pity party. Thanks for listening.
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RK2020 - Thanks for inviting me to your "party". I am more than happy to attend, and I would underscore what Divine and Emac have said. No need whatsoever to feel bad about posting unpleasant news, thoughts, or feelings. I've always kind of thought that that was one of the main purposes of this board, i.e that we can share our disappointments with so many others who have first hand experience with these diagnoses. Sending lots of good thoughts and hugs your way!
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tld2017 - What a fun idea to take an impromptu trip! Enjoy, forget anbout cancer for a few dat and kiss those grands!
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rk2020, I'm sorry the trial drug is making you feel so bad. I'm hoping the rising numbers area a blip and they start trending downwards. Sending hugs your way.
tld2017, you may not see this, but I hope you have or had fun if you don't see this until you get home.
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Hi! Hope you don’t mind, I’m posting here on behalf of my friend with MBC who is worried about a new symptom (numb chin).
She is 53 years old and was diagnosed stage IV in 2015. She currently has mets to her liver and bones (mainly bones in the legs and hip). She has been on ibrance, Verzenio and Piqray.
About a month ago she started experiencing a bit of numbness in her chin. It came on randomly and has spread to her entire lip area (top and bottom). MRI of the brain was clear, she is waiting for a jaw MRI but no date yet.
We made the mistake of googling and came across numb chin syndrome, which apparently has a dire prognosis of months. She is now convinced this is what's happening and she is terrified and overwhelmed.
There is such little information online so she wanted to post here in the hopes that someone else has come across this or knows something. We're both confused and had a few questions:1) why is numb chin so dire? The few websites I found cited NCS as the first sign of a metastatic disease and that people would often die within months of diagnosis, but what does it mean for someone who already knows they have MBC?
2) If numb chin is caused by new mets in the jaw, is this bone or brain mets?
3) Can bone/skull mets turn into brain mets?
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Please see Exbrnxgrl's response to you on the other thread. I wish your friend (and you) lots of luck; it's so hard!
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rk2020 - I am so sorry to hear you are in your current predicament. I hope whatever decision you make on your next step that it is the right one and that you can get everything back under control.
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I'm glad to hear that you are doing well and so sorry that your initial visits were so negative. My initial plans were to have the PET scan, bone scan and then biopsy (if needed) and then meet with an oncologist for the news. My test results would be posted in my patient online chart but I had planned on NOT reading them on my own and wait until my appointment when my daughter would be with me and we would be able to asks questions and get full information. Unfortunately, I had a horrible call from the nurse practitioner (I had met her once for my annual exam) to tell me the bone scan results which were not good. I remember hearing " many lesions on spine and ribs . . . " and not knowing anything I then spent hours crying because I thought I'd be dead within a few months. Who could do such a thing? She didn't even "soften" the blow to tell me there had been much advancement and successful treatments. Well, here I am a year later. Scans are ok. When I first had breast cancer in 2010 I had a wonderful oncologist and nurse. Unfortunately, after three years he moved on to an out of state clinic. I have had two different unsatisfactory oncologists assigned to me in 10 months. The first one moved. I say unsatisfactory because they come into the room unprepared (like they don't know my history) and have made errors concerning Xgeva injections or have answered questions with a flat out "I don't know." It's ok not to know, but please find out. Anyway, I've convinced myself that it's time to choose a new oncologist or transfer to another cancer treatment facility. I need to feel confident and trust my doctors. Let me add that I arranged through Pfizer Oncology to have a phone call with a mentor who is a five year survivor. She was very helpful and put my mind at ease. I am currently taking 125 mg of Ibrance, Fulvestrant injections and Xgeva. Quarterly PET scans are good. Not cured but good results!
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I'm so sorry to hear and I know that any ache, pain tingling or numbness can be very traumatic to us. I think her doctor could help. I'll add that I have occasional numbness and nerve tingling. Sometimes in my back and scalp and sometimes on my face where I had Moh's surgery for skin cancer. My doctor said that that it is a side effect of my medication. I've been taking Ibrance, Fulvestrant for 10 months and Xgeva for three months. She prescribed gabapentin for the nerve tingling. I've only taken it for a couple of weeks and it hasn't kicked in yet. I hope for the best for your friend.
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I'm so sorry to hear and I know that any ache, pain tingling or numbness can be very traumatic to us. I think her doctor could help. I'll add that I have occasional numbness and nerve tingling. Sometimes in my back and scalp and sometimes on my face where I had Moh's surgery for skin cancer. My doctor said that that it is a side effect of my medication. I've been taking Ibrance, Fulvestrant for 10 months and Xgeva for three months. She prescribed gabapentin for the nerve tingling. I've only taken it for a couple of weeks and it hasn't kicked in yet. I hope for the best for your friend.
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Threetree, thinking of you. I believe you might have had your oncology appointment yesterday to go over results. Just wanted to check in here to say you have been on my mind and I am hoping you are doing okay!
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tld2017 - Oh my gosh, I can't believe you remembered about my appointment yesterday. Thank you so much for both remembering and checking in.
I did have my appointment yesterday, and a good old childhood friend went with me, and that was a huge help. The doctor pretty much reiterated everything they told me in the ER in January, and then that same confirmation that came from the subsequent CT and bone scans. They see spots in my spine, sternum, ribs (multiple fractures), and possibly on liver (small) and now even a possible lower right lung spot (also quite small). She said that it doesn't matter how many spots a person has, because once you're stage 4, your're stage 4, and if any of the treatments work, they will shrink or hold at bay, as many spots as you have. She spoke with the radiologist about biopsy and they are saying that one of the two spots on my spine would be the better one to biopsy, so now I have to schedule that. I'm absolutely terrified of course. Radiology is supposed to call me, but so far they haven't. She said it could take over a week to get all of the results back from the biopsy, after all the various tests and staining, etc. that they have to do, and that then she can prescribe a course of treatment. It's still a waiting game in many ways.
I wasn't too bad at the appointment yesterday, since I could chat with my friend, and then we went to lunch, but today I am back to being a physical and mental wreck. Can't tell what's physical and what's mental. Just ache all over, have been weepy, and am very fatigued. Letrozole side effects can do this, so can cancer, and so can stress/anxiety/panic. I don't know what's what. I just know that I have not been the same since this new diagnosis a little more than a month ago.
You are so thoughtful! How are things going with you? Weren't you going to have an MRI?
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So glad you had a friend with you - I know that made a world of difference! I am relatively new to this thread so I hope that it is okay to make a suggestion that I've found helpful in just this last week. If you can, threetree, get away for a bit, away from the computer, away from Dr. Google. If you can't get away physically for a few days, then do a staycation, read books that you've been meaning to read, watch a movie, order take out, do some retail therapy or even better, some actual therapy. Whatever you need to do to get a mental break. As much as I love this forum, I even chose to stop getting the email notifications when someone posted in my favorite threads, just so that I could make sure that I'm in a good headspace whenever I read them, instead of clicking on the email to read posts when I'm already down. With what we are going through, anxiety can easily overwhelm us. As strong as we are, our situations stink, and we are rightfully feeling stressed. I went away for several days to go see my grandchildren, and it was exactly what I needed. Now that I am back, I am going to try to control the cancer fear better. I have an appt on Tuesday with a psych NP, to possibly get a low dose med to help with my anxiety. My pelvic MRI is on the 17th, the follow up appt for results of the MRI is on March 23rd. So I have got some time to build up even more anxiety and fear, and with all my strength, I'm going to try to keep it under control. One more thing, my oncologist said to me last week that there are new meds coming out, so much better than when we were first diagnosed with cancer. We have a fighting chance, we really do! My heart is with you and massive hugs being sent to you.
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tld, you give absolutely wonderful advice that I completely agree with. It's always helpful to have a change of scenery, to get away and get a break from mbc concerns. Even a short day trip can be restorative. And the staycation is a great idea, too! I remember binge-watching Orange is the New Black on Netflix when it first came out. I allowed myself to get totally immersed in the intensity of it and not think about anything else for awhile. These kinds of activities are a form of self care to practice not just once, but over and over. I've learned to add more fun and more of the things I want to be doing instead of giving into the demands of others or doing things out of obligation.
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Tld2017 - I think it is totally OK for you to make suggestions, and I appreciate all of them. I'll bet that having your little "grandchildren getaway" was wonderfully uplifting for you and a real nice way to put some of this cancer business on the back burner for awhile. I'm so glad you were able to do that.
I do find most anytime out of my apartment to be better than being in it. When I'm here, I'm always drawn to the computer and since I live alone, it's real easy for my mind to go to the negative and dwell on the bad side of things. I usually don't feel sorry for myself, but I've found that lately I can start to "go there" and I have to do something to consciously pull myself away from falling into that fatal pit. Oftentimes, just going to the store or taking a drive and stopping and getting out in a park or something can be helpful. I tried those things yesterday, but they didn't help nearly as much as usual. I usually try to watch a movie at night, and last night I think it helped a bit. Funny, because I usually like crime, drama, and murder mystery sort of things, but lately the movies I've been watching from Amazon and Netflix are more romantic comedies (that I used to think were just too inane to watch) and old "wholesome" films from decades ago, get my mind of my current troubles more than most. I watched "Flower Drum Song" last night. I remembered seeing ads for it when I was a kid, and I remember hearing lots of talk about it way back when, but I never had seen it, so decided to go for it last night, and it was a pleasant "get away" before falling asleep. I have found that I still do enjoy the crime and detective stuff if it's on the form of some old radio shows that I discovered when I was first getting chemo in 2019. Even though they are crime and detective stories, they are so cheesy, that I find them amusing and not depressing. All from the 30's, 40's, and 50;s.
Since the friend who went with me to the dr's retired, maybe I should approach her about the 2 of us taking some day car trips once in awhile. Her older sister was best friends with my old best friend who now has stage 4 lung cancer, and the older sister is trying to arrange for all of us to get together again at least one more time, since 3 of the 4 of us (my old bestie, her sister, and myself all now have stage 4 cancer), but that wouldn't exactly be getting away from cancer. It would be another location, and even that would be nice.
Part of my problems are that I am trying to wind down work altogether, and it's not easy. Right now, I still do some part time work, but since this diagnosis I cannot focus on my job nor give the people I look out for (it's social work related) the time and energy they need from me. I have responsibilities to the court regarding these people and I am not up to the job, so am needing to do a lot of paperwork, which will require a lawyer, since I'm not up to it myself, in order to wind all this work down, transfer my cases, and keep the people I'm responsible for safe and secure. (I don't want to get too detailed about my job - it's guardianship and social work related.)
I did try one of the low dose Ativan's that they gave me in the ER last week, but I'm not sure if it really helped or not. Haven't tried any more since. I also had one video visit with the cancer center social worker, although it was her last day, and I have mixed feelings about it. I found her to be sort of "all business" and not particularly "touchy feely", and I would like something in between. She kept harping on me to do an Advanced Directive, which I know I need to do, but I would prefer to do it with a lawyer, and she kept telling me I could just use a form that the hospital/cancer center has. I didn't think it was a great topic for a first meeting about all my anxiety. The new person taking over for her is supposed to get in touch in about a week, so I'll just have to see how that goes. Also, the notes from that visit got posted to MyChart and I am assuming that any of the medical personnel there who have access can see them, and I wasn't expecting that. I've got to check that out further. I don't like it if that's the case.
I forgot to mention too that when I saw the oncologist 2 days ago, she made a referral to someone she simply called a "nurse practitioner" whom she said would get in touch and could help re the anxiety and any pain issues that come up. When we left I told my friend that I would bet it was for Palliative Care, but that the onc was downplaying it and didn't want to use that term. Sure enough when I got home and looked at MyChart the person she made the referral to is part of the Palliative Care Team. I don't know if I need them or not, not totally sure just what they do, but it makes me feel like I am further down that dreaded path than I thought I was.
I'm sorry to see that you are having these long wait times between procedures and appointments like I am. It really does raise the anxiety levels terribly. I too am working on ways to control the fear better. I will make a mental note of your appointment on the 17th and make sure to send extra "positive vibes" out there for you on that day. Thanks as always, for taking the time for all my long ramblings/complaints/ventings. I can't tell you how much it helps. Hugs back.
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Divine - I absolutely agree that tld gave some great advice. Movies can be a real good get away. I think I should try to think of more things around locally that are just for "fun". I like your idea too of doing more and "not giving in to the demands of others" so much. I think if I can wind up my work responsibilities, I can focus more on the "doing" and "fun". Right now I feel guilty doing those "just for me" or "fun" things, when I am so behind with the work responsibilities. (I think that just typing all this out is helping me focus on what I need to take care of first, i.e work!)
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Just popping in quickly before I head out to my brain MRI.
threetree, the biopsy on my spine was easy. I've not had a bone marrow biopsy, so I can't compare, but I've heard those really hurt. I did have to tell both the tech and the radiologist that I was NOT there for a bone marrow biopsy, but rather a biopsy of L4, L5. They put in an IV and when I got into the CT room (it was at CT guided biopsy), I rolled over onto my stomach and put my arms sort of above my head. The nurse said, "Here's your party juice (or was it happy juice?) and that's all I remember. It was twilight sedation, but I really had no pain with it, Spent a little while in recovery, then got dressed and went home.
(((hugs)))
Carol
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Sunshine99 - Thanks so very much for telling me about your experience. It is helpful, indeed. A couple of others on here said that their bone biopsies weren't too bad either. I'm assuming mine is for bone and not marrow, although I think they did mention marrow being involved, but maybe in my sternum. This is for T2 or T8. The onc said they will do whichever one they think they can get a good sample from. I've heard bad stories too, so hearing that some are good give me a lot of hope and helps. Yours story sounds similar to what the dr described would happen. I have a friend who will escort me too (not sure she'll stay for procedure), but will at least drop off and take back home, so that is a big help.
Wishing you all the luck in the world with your MRI today!!!!
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Threetree- I do think your get togethers with friends will be a great distraction. I have a friend who has MBC and we do talk about cancer a lot- which is fine I think. I have friends who know, but, don't have cancer- it is usually just a 5 minute what are you doing now? and most people that are in my life since the diagnosis in 2011 or I wasn't close to back then don't know. sometimes I have to catch myself, but, mostly I love that the conversation can never be about my cancer.
As far as movies go, I find I am more sensitive than in the past about tense movies. I do like more comedy and light movies, and bale on many serial shows. The British Baking show is my speed.
Living alone makes it harder, and having your work issues also. You seem to be processing all this and making good decisions.
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Nkb - I think you're so right about the get together. We've all known each other since late grade school, and lived around the corner from each other, so we have all sorts of other things to talk about; the old neighborhood, our deceased parents, all the old, "whatever happened to" stuff, plus re-hashing a lot of our old teenage escapades. I saw my old best (who now lives in another state) about a year ago and we had a real nice time together, and like you say, we did talk some about cancer, but so much more about fun old memories.
Yes, I think that living alone does make this much harder. Over the years of reading on this board, I have come to the conclusion that the people who do best are the ones with the great spouses, and who are still in the family home, with all their old neighbors and friends still around. My husband bailed about 20 years ago, and I never have met anyone else. I also believe that if I was still with my former husband, he wouldn't be that much of a help. I was shocked at how little he seemed to care or get involved when his mother was dying. He left most all the work to his sister.
I've never watched the British Baking Show, but I've read about it. Maybe I should check it out.
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threetree, for me it's definitely been an ongoing process letting go of being overly responsible and tied down with obligations. At some point during the first few years of mbc, I started allowing myself to want more out of life. I began doing less of the things I did out of habit or were boring or drained my energy, whether this was certain activities or interactions with certain people. Instead of doing things because I felt I had to so I didn't hurt someone else's feelings, I checked in with myself and considered my own feelings and what I wanted. Even if I was just going to waste time, I wanted to waste it the way I wanted to, and not adhere to someone else's agenda!
l like taking the big trips, but I also started checking out local activities which have been fun and interesting. Among other things, I finally got around to visiting a massive display of tulips in bloom at a local park, checked out the art at a local gallery and toured a restored railroad depot museum. Dh and I now get a season pass in the summer to the pool which is two minutes away.
Something my son taught me that he learned in a college class was to do one new thing every week. It's called an Artist's Date. It could be anything big or small. Make a new recipe, shop in a store you've never been to before, listen to new music, take a day trip to a place you haven't yet visited. The ideas are endless.
One way to approach your work obligations is to chunk the work down into smaller parts, and each time you complete a small part, reward yourself with something you want to do.
These are simply ideas I'm tossing out that you might find helpful or help spark your own ideas.
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Divine - I simply love the ideas you've put out there and all of what you've had to say is helpful.
I think I do need to kind of switch gears here with this stage 4 diagnosis and reexamine and reprioritize just what is important and what I'd like to focus on the most. So much of life does just become habit and "reactivity" to other things going on around you, without a lot of real thought. Big trips wouldn't be all that easy for me to do, but I definitely think the idea of exploring more local activities is possible. There are a lot of things that go on in my city, and when I was younger, married, and raising children, I often went to a lot of different things, but since I've been divorced and alone for so many years, I realize I've really pulled back on things like the museums, festivals, and concerts, etc. With spring and summer coming, I should try to think more about those things. Up in another county, we too have a big tulip festival every year. Maybe I can rope my old friend into doing a day trip up there later this year. (I hate having to look for bathrooms now everywhere though. Ever since Letrozole I've had to go every time I turn around, and I just hate it. It makes going out a bit more difficult than it used to be.)
I bought a book years ago about how to approach life to get yourself out of a rut, and I remember one of the things the author suggested among many, was just taking a walk in a different direction than you usually do (if you are a walker). That was so basic and simple to do, and I think it can actually stimulate your brain to change your overall perspective a bit. I do try to change my walks out from time to time, just to get a different "look" at everything. Love the idea from your son about simply just trying to do one new thing every week. That's a real basic and easy one to do too. You just have to make a mental note to do it.
I've also tried to tune out the rest of the world on Sunday mornings and just use them to relax and do some different personal interest things. My father always called Sunday "family day", and I kind of like to think of it that way too. He never went to church (my mother did), and I'm not really a churchgoer either, but Sunday does seem like a good time to just "shut down" the routine weekly work and shopping, and outside responsibilities and just "be". In keeping with my father's "family day" idea, I like to wake up on Sunday mornings and have my coffee in my slippers and all, and work on genealogy stuff. Since I've been doing that since probably the late 1980's in one way or another, I've got my own family pretty well covered, so have switched to looking up the family histories of a couple of old childhood friends. When I think about it, it's actually one of those "new and different" things that I'm doing that I really do much more for myself than even my friends. Neither of them are genealogy buffs, but I find things and occasionally send them stuff that is of particular note or interest, and they do appreciate it, although it hasn't given them the "genealogy bug" (wink). I also like to switch things out and listen to the classical music station during these Sunday mornings too, as I usually listen to pop/rock/oldies, etc. I wind the morning up with a good long walk in a nearby residential area (I'm in an apartment in a business district), so I can see plants, houses, yards, and hear a lot of different birds than just the ones here. Again, it just kind of lets me switch gears, change things out a bit, and get some new perspective.
I used to not read this board on Sundays as part of my "taking time off" from most of life's business, but since the stage 4 diagnosis, I have found myself checking this board again several times a day. Don't know if that's particularly a good thing - but at least it let me see you post from this morning (smile). Thank you for the real nice perspective.
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Hello,
This is my first post but I have read the boards many times before and just started going to the zoom meetings. I was originally diagnosed 9/2014 Stage 3C and did chemo/radiation and hormonal therapy. In 2019 I was finished with treatment and I had a clear bone scan in 2020 prior to covid. Last September I wound up going to the ER for left shoulder blade pain that hurt when I took a breath. They did heart tests and ruled out any heart issues but then did a CT and found mets throughout my spine, skull, pelvis, hilar lymph nodes, a single small spot on my liver, and what looked like scattered little nodules in my lungs. The lung nodules were never confirmed but a biopsy of my hilar lymph nodes confirmed breast cancer recurrence. I had to have a second biopsy because they did not get enough of a sample the first time. I am ER+, PR-, Her2 low. I started on faslodex and then IBrance in November. I had to decrease the Ibrance to 100 after 2 cycles because I got a uti and then covid and so I had to hold the 3rd week both of the first 2 cycles. I just finished my 4th cycle and had my PET scan on Thursday. My neck and back pain was so much better so I was convinced I would be getting a good result. However, my oncologist called me Friday and said the results were mixed. She was so disappointed because the skull mets, cervical spine and upper thoracic spine looked improved and she said my lungs looked beautiful and lymph nodes were improved as well. But I had a small new spot on my liver and one new met on my lower t spine. So it was a mixed response. Has anyone had any experience with this? We are going to biopsy the liver met and radiate the T11 new lesion. In the meantime I am continuing iBrance. I was really hoping to get a little time from a CDK 4/6 inhibitor so I'm pretty devastated. But there is a chance that I could continue if we take care of these two new mets. She is taking my case to the tumor board. Has anyone radiated their spine? Or liver? I am super nervous about it. We are doing the T11 this week. After the biopsy we will decide on the liver. Has anyone had experience with a liver biopsy? Was it painful? Any side effects? Thank you for any advice. Blessings to you all.
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mommacj,
My liver biopsy - done with ultrasound guidance, twilight sedation, no pain. It took 4-5 pokes for the doctor to find the right spot and get enough tissue (tumor was ~1.0 cm I think). Procedure didn't take very long. Home with small bandage. Slight bruise afterwards, but otherwise no problems. Tissue was sent for genomic testing (STRATA). Results from the genomic testing (mutations) determined my next treatment.
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