Bone Mets Thread
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Hi bone mets ladies. Pain with bone mets varies for me for different reasons. @xsuzx I’m sorry for what you are going thru with the bone Mets showing up so quickly after your original breast cancer. I had gone 13 years before it showed up in my bones. Ribs ,Thoracic & lumbar spine., hip, sacrum, tailbone and last month a new lesion on my Acetabulum (where thigh bone socket attaches to hip.) that was causing me new and sharp pain when walking and pain sleeping on my side and groin pain. My Oncologist had his Radiology oncologist consult and evaluate me for Palliative 10 day Radiation for the pain. I finished the 10 day course the day before Thanksgiving,. The Pain has gone away especially in my groin, but I still limp with a little pain the first few steps after getting up from a sitting position, then once i get going I can walk painlessly. I still have not walked around the block yet because it’s been too cold and windy. Here at the Jersey shore🥶❄️. it was a good that your oncologist did a liquid biopsy on you, which probably gave him a lot of information about your type of cancer and what medication treatment cocktail will work best for you.
@threetree Hey there. 🩵🌷. Whenever I have any pain that;s new, my onc has me scanned to see if there is anything progressing in the area that;s hurting, before he decides how to treat the pain with radiation. up until now I’ve never needed anything more than Exedrin, a heating pad, or the Voltaren gel. But the radiation seems to have helped.
@norah2024 I read your update. I;m sorry you are going thru your uncertainty right now. If you don’t feel convinced by the current. diagnosis, or that your doctor is recommending the best treatment, then you should go with your gut and get an opinion from an oncologist that comes highly recommended in your area…. having stage IV metastatic cancer is not something you want to have treated by a doctor who you don’t feel confident with. Has he done a liquid biopsy from your blood lab tests to look at the cancer genome dna to know the best med treatment for your type traveling cancer cells in your blood?.
@tougholdcrow Hi there 😊🩵
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oh thank you for getting back to me. I go for my first radiation consult tomorrow morning so hopefully we can get this ball rolling. Even pain pills don’t seem to help but I meditated and it has calmed down thank goodness. I had it yesterday and today. Hopefully it will stay manageable. Thank you for sharing your sternum story.
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Shana girl, it has been 8 years since my original LCI and they did lumpectomy and Arimidex for 5 years. So it’s 8 years between. Is that soon? What is a liquid biopsy? Is that the genetic testing he did my last visit? I know I will become more familiar with all of this…..and thank you for the quick response. I’m a little nervous about tomorrow, and glad radiation helps the pain. Thank you everyone ❤️
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Thank you for your reply.Regarding changing doctors, I have thought about it and my family has advised me to do so. However, he is considered one of the best doctors here and has an excellent reputation, which makes me hesitant to leave him and start over with another doctor.
Especially since I no longer have insurance after my husband retired and we began paying out of pocket. This is something many hospitals do not like, as we carefully review every test to determine whether it is truly necessary.
I started the new medication about a week ago, and I have an appointment with the doctor in three days for blood tests to see how well my body is tolerating the treatment. I hope things go well so that I do not have to change doctors again.
As for the liquid biopsy, I did have it done while I was on Kisqali, but the process was not well organized. I never clearly knew which mutations were tested for, nor what the actual results of that biopsy were.
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Hi all, I don't know what's bone pain or what's overuse or what's just post-exercise (bad form) pain. I'd say it all mostly comes and goes, so it's probably not cancer pain. There's a point where you get old and you have all kinds of aches and pains anyway, so I'm waiting to see if something is persistent over time. My heart goes out to all of you suffering any debilitating or lingering pain and to all of you in the early days of this wretched disease.
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@shanagirl - you had 13 years before the bone mets hit, @xsuzx - you had 8 years. I only managed 3 🙁. @tougholdcrow - I agree that a lot of these pains, as in the sternum, are from all sorts of things and not necessarily mets. I get pain from exercise, inactivity, posture and ergonomic problems, and the weather. My oncologist too, suggested that the pain I have in my sternum, and in the area below it, is likely "multifactorial", so we're just keeping an eye on things. I did have a scan on Veterans Day and they saw nothing "glaring or acute" at that time. Going for routine scans again today (CT and bone with contrast), so we shall see. It's always so scary and stressful!
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@threetree GoodMorning I totally agree with you about how the bone met pain varies with different circumstance's; last week when a winter snow storm blew thru I felt it in my bones where know I have stable lesions in ribs 5 & 9. stabbing pain on & off. Also where my cervicle vertabrae facets where the neurosurgeon cauterized the nerves in radio frequency ablation procedure during the summer to stop the pain for a year. i felt where the procedure was done on the back of my neck on C3 C4 C5 C6 I felt like I had a bad sunburn back there, ..it’s like barometric weather changes affect my bones everywhere ther are met lesions or osteoarthritis…. not fun. So I just pop a couple of Excedrin and a cup of tea and the pain goes away. I hope your scan’s go smoothly today keep you informed., and resolve any questions and anxiety you may have @threetree .🩵in your pocket today😉
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@tougholdcrow yes those aches and pains i was getting during PT. I knew it was because my bones and muscles were not the same as they used to be.. My Drs want me back in PT for my neck which is not bone mets but arthritis. My Rad Onc wants me in PT in a few weeks after I recover from the radiation. Now they will do PT for the new issue of my Acetabulum and groin. And my neuro guy wants me to pick up th Neck PT to keep my neck strength up.🙄
I am very obsessive about KNOWING exactly where each metastatic lesion is located so I can visually keep track of stable or progression. I made phot screenshots of diagrams of spine, ribs neck sacrum hip & coccyx tailbone and logged the size of mm or cm and then when I get new scans I can keep up with what’s new, what’s old and stable……. . the number of each spinal rib and cervical bones are identified.
Last week I did an image of the posterior acetatabulum and frayed labrum in my hip and groin and know the new lesion is 1.5 mm
Stage IV cancer sucks. these were never things I wanted to research and learn about.😕
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@shanagirl - Thank you so very much for the good wishes re my scans later this morning. It's a dreary, drippy, dark day here and I'm just bummed and dreading the whole thing. I will take your good wishes with me, and I'm sure they will help me get through this in a little better mood!☺️
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Threetree, in your pocket for your scans!! ❤️
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Thank you ladies. Apparently my pain is from Mets. Got tattoo today and starting rads as soon as they can fit me in. Never thought I’d look forward to radiation. Have a nice evening and thank you❤️
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@norah2024 Regarding Liquid biopsy, I never really could understand it in my earlier years of metastases. But I had noticed the scanned document results on MY CHART portal under test results for Liquid Biopsy. It was a pretty detailed 4 pg chart of letters and numbers identifying genomic dna of traveling tumor cells in the blood from the original breast tumor. Basically what I gleaned from it was the finding of:
GTC Liquid biopsy evidence of mutations
KMT2 ATM DNMT3A PIK3CA IGLL5 genes and the one they focused on in the evaluation was PIK3CA
So the liquid biopsy analyzes your original tumor cells in your blood to decide which type of chemo treatment works against those specific genes to keep them from mutating and progressing to other organs. I wish I outdo tell you more @norah2024 ,but it’s so deep I had to just choose not to try and understand it, and trust that my oncologist knew exactly what he was going to treat the bone mets with…which was for me Verzenio pill twice each day am & pm, Fasodex the hormone inhibitor , and XGeva a monoclonal antibody. I get these two drug s once monthly in injection ….Fasoldex in the butt one shot in each buttock cheek, and the XGeva injection in my upper arm……no infusions just those 3 monthly injections along with my daily Verzenio pills. I think a lot of my gone pain and other side effects all contribute to the daily feelings of fatigue, and body aches and stuff like that that. So I hope this helps you.
I hope your Dr is a board certified Oncologist and has direct access to the information of what he is treating you with and understands the stress on you with changing your meds because of your torn labrum. Is he affiliated with a cancer center in your area?
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