Bone Mets Thread
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thank you so much......i needed that info........
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You're very welcome. Please keep us posted and come back and ask all the questions you need to. We are all in this together here. Sending prayers for you.
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Atal: I had a bone biopsy, L2 area. I was offered a choice re pain medication. My anxiety was high the way it was being newlydiagnosed back in August 2019. So I chose anesthesia and don't regret doing the same. Perhaps it was overkill but my MH needed it back then. Good luck with your decision.
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Atall, I've had two bone biopsies, somewhere in my lower spine or pelvis area, as I have bone mets. The idea of it is hideous, and I was terrified, but the procedure itself was nothing. I remember their asking me to roll over on the table and then I was waking up. I think they use one of those "twilight" drugs, perhaps like they do for a colonoscopy.
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yes, my anxiety is over the top,they've put me on xanax, I got the news Thursday, ct on Monday showed the mets, had bone scan Friday, don't know results yet, I really want to be put out, I had pancreatic cancer 7 years ago and had whipple surgery, been thru too many of these procedures, anxiety can't take any more. Thanks........
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really? Like what they give you for endoscopy and colonoscopy? That Michael Jackson drug? I can do that because that does knock me out, thank you, that makes me feel better, how long have you had the bone mets, how is your quality of life???? Thanks much...
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Atall, I was originally diagnosed in 1991, and 26 years later, BC reappeared in my bones (only so far) in Feb of 2017. My personal side effects have been very manageable. Ibrance and Faslodex were a piece of cake, except for some fatigue. I progressed on that combo after 23 mo. I've been on Xeloda since January of 2019, and the SE for me have been fatigue, particularly in the late afternoons (and I was, at 71, an explosion of energy before Stage IV) and Hand and Foot Syndrome. I would say that considering the situation, my quality of life is excellent.
I wish that I could tell you exactly what they used for sedation during the two bone biopsies, but I do recall my doctor saying just before the procedure that I might feel some pressure at the site when they took the sample for the biopsy (I did NOT) and that it was not full anesthesia. Again, they asked me to roll over, I remember putting my head on the pillow thing when face down and thinking that it was an awkward position, and then I was waking up in recovery. I don't recall a thing, and the pain was mental rather than physical for me. You can do this, and we have your back. Sending group hugs....
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Atall...I also don't know exactly what they gave me but it made me sleepy and relaxed and I didn't feel any pain. Everyone in the room was so nice too which helped tremendously.
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thank you Lynn, this is encouraging........l
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thank you Jack5IE, this encouraging.......
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I had a bone biopsy, they gave me IV Fentanyl and I didn't feel a thing. I told the nurse that was the first time I wasn't in pain in six months.
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Atall - I had a biopsy of S1 and felt very little. Nothing more than some pressure. Of the procedures I've had the last few years that one was probably the easiest.
I have a question for those of us with mets to the spine. I recently have had increased sensitivity in the area around my abdomen. It's like the skin itself hurts, so much so that my T-shirt moving on it feels like little pin pricks. It seems to concentrate to the right upper quadrant but sometimes around to the back. My first thought was liver or gallbladder issues but my labs are great and I have no other symptoms of liver or gallbladder dysfunction, it seems to be just this skin hypersensitivity. Even hot and cold water hurt! Am I just losing my mind here or have others experienced this? I get a little bit of relief from putting some aloe with lidocaine on it. One of my mets is at T7 and T8 and I have a compression fracture there that encroaches on the spinal cord so my theory is that this may be related but I'm not 100% sure. I have an MRI on April 8th so hopefully that will provide some answers. I have these nagging fears of a progression.
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emac877–. I have mets in my spine. Most active was T8 area. Before rads I had pain not only on my back but it radiated to my left front. I had to keep an ice pack just under ribs to calm down the pain. Doctors said it was from the tumor near on nerve bundle in thoracic spine.
After 10 rad sessions that pain is mostly gone.
Hope you get relief soon.
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I'm wondering. I noticed that there is no place in our profile to list if we are on any bone strengthening drugs like Xgeva. It seems an important part of therapy to me. When MO wanted to put me on Xgeva I read up on it. I was impressed with its benefits and gladly agreed. I've been assuming everyone is taking something for their bones.
Are you taking a bone strengthener. Why or why not? Which one?
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hello to all, wish I would've thought to share this sooner but there are still 6 episodes still remaining of the FREE online docuseries, Radical Remission. A new segment can be viewed each day and is available for 24 hrs. Based on the book by Kelly A. Turner, PhD. Below is the link to register. https://www.discover.hayhouse.com/radicalremission/
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Thanks, belll!
Gailmary, Zgeva for me, for 3 yrs.
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Gailmary,
I am not on any bone strengthener. However, there has been some question about whether or not I have bone mets all along. I was supposed to have a follow up nuclear bone scan this coming week (my two prior ones both said I had arthritis but CT scans have been equivocal) but my bone scan has been bumped due to all that's going on. However, I am going to write myself a note to ask about this, because if it's standard of care, I want to know why they aren't suggesting it. So thanks....
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that's it BevJen, is it standard of care to recrive bone strengthener? Should it be, at least if you are on an AI? I think it should be. I forget where you can see the guidelines for that.
I just realized I'm only on fadlodex and thay doesny hirtbones likefemara would. Yet he still has me on Xgeva cause of the benefits. He feels that strongly about it.
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Belll, I’ve been watching the videos from Radical Remission: Radical Hope every day. I like their format of highlighting two different people’s experiences in each episode.
In case anyone on this thread wants to check the series out—its free—I’m making the link you provided clickable:
https://www.discover.hayhouse.com/radicalremission...
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Xgeva for me.
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i am just starting xgeva. Any suggestions, SEs?
My MO wanted to wait to start me just to reduce se's as long as possible. I agreed but I do go to a NCI hospital for a second option and they thought I should be on it.
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Perky, happily, I've never had any side effects. I pray that you will be as lucky!
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perky2020– no side effects so far from XGEVA for me, either
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DivineMrsM, thanks for providing the clickable link for the Radical Remission docuseries! For those who would like the research and stories at their fingertips, I highly recommend the book, too.
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Xgeva for me, burns like fire going in unless they warm it up first (seems odd but true). Other than that, no side effects for me.
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Belll,
I started watching the Radical Remission series, and wow, it is good. I am one of those cancer patients that have been on the fence regarding whether I want to stay on chemo for the rest of my life, or stop treatment and see where things go. I feel like thetreatments make me more sick than the cancer. This series gives me a lot to think about. Thanks so much for sharing.
Laurie
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Laurie, I'm so glad you enjoyed the Radical Remission series! I found it very thought provoking, too. It was a treat to tune in and get a dose of hope and inspiration on each of the 10 days that it aired. I understand the conflicting feelings you have about continuing with chemotherapy. We patients have to constantly weigh the risks/benefits of taking these strong drugs that can make us feel so rotten. I wrestle with the same thing. After my current drug protocol, unless something new comes along, standard chemo is all that remains for me. The patients featured in RR all embraced multi-faceted approaches to treating their cancer and healing. I see the realm of holistic healing, whether used in conjunction with or instead of conventional treatments, as this huge, hopeful cornucopia of possibilities. It can only work in our favor to support our health with a highly nutritious diet, appropriate supplementation, exercise/movement, plenty of sleep, and attention to our emotional & spiritual needs. Even if we don't achieve complete remission, our efforts in these areas can be extremely empowering and uplifting. They can help us feel better on so many levels and give us some sense of control! I keep the RR book beside my favorite chair and it's the one book that never fails to lift me up. I've also pre-ordered Kelly Turner's new book, Radical Hope. If you're not already familiar with it, you might also like Life Over Cancer by Dr. I. Keith Block, MD. I visited the Block Center for Integrative Cancer Treatment this past Fall and continue to work with Dr. Block and his staff. Their holistic approach really resonates with me. I wish you all the best as you cope with the SEs of chemo and try to have a decent QOL. May you find wonderful, new natural ways to feel better physically, mentally, emotionally and spiritually!
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I have bone mets in six places: skull, spine, pelvic, ribs. No organs. I am de novo except for one round of chemo because I was misdiagnosed at first with typical breast cancer.
I asked my oncologist about taking social security next year when I am 63 years old because she had mentioned that I will have 10 good years. I wanted to know what that means, so on my next blood check visit I asked her again. She said I will live around 5-10 years. That was shocking as I am doing really well with Ibrance and Letrozole, so five years was a scary sound.
What am I to do with information like this? I am retired, the house is paid for, but it is a frightening bit of info to have. Do I live normally, focusing on making art for me? What do you suggest? Has anyone lived longer than 5 years with this diagnosis? Thanks!0 -
I'm going to PM you this minute.
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woodlands, I also saw your questions on the Ibrance thread and there you mention you are “vibrant". I love that! Allow yourself to continue to be vibrant! It is definitely in your favor.
Many of us see this as living with metastatic breast cancer, not dying from it. Not all oncologists give defining time limits like yours. She really can't say for sure. As you wrap your head around this diagnosis, over time you can learn to live the fullness of each day and not be so focused on length of years. But allow yourself all your feelings. You will get your footing in time and move forward.
Yes, you can continue living normally, yet this can also be a time of reassessing what's working in your life, what's not working, and make adjustments. Do more of what you want to do and a lot less of what you do not, and don't feel guilty about it. Step out of your comfort zone and do some of those things you put off for whatever reason. The pandemic has slowed things to a halt, but you can use the time to consider what you'd like to do later in the year. Continue making art if that is your passion.
When it comes to social security, really, it's structured so that no matter when you take it, you're going to wind up with just about the same amount of money over the years. No harm having additional money when you turn 63 but if you are good financially, see what your intuition is telling you. You know your situation best.
A concept that helps me deal with mbc is: “The opposite of uncertainty is not certainty. It is openmindedness." No one can say for sure how the future will unfold. Just look at this pandemic. Be open to life. Take it one day at a time.
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