Bone Mets Thread
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I was wondering does everyone with bone Mets get radatation ?
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sunnidays, I have never had radiation, but mine is because it is throughout every bone.and bone marrow. I've been offered radiation on my hips for pain but haven't taken them up on it.
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I’ve had several radiation treatments but not with curative intent. All my treatments have been to relieve pain and other symptoms. Like KBL, my bone mets are extensive.
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Cure ious
Thanks….the onc told me to stop taking and she would write a new prescription. But nothing is at my pharmacy. I just felt very weak, faint, left pain in side and back , nausea, diarrhea. And then blood like clots in my nose.I have been off Ibrance for 3 days and feel better and pain in side is almost gone. I will also have to go off Ibrance for my leg surgery. I feel I know so little and seems I am not having great communication or understanding with onc. I asked her how many Mets and she said it just says multiple
Now do I take the buttock shot tomorrow of Faslodex when I am not on Ibrance this would be my 2 week shot
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Positive2strong, I have a NEAD friend who has been on Faslodex alone for MBC since (drum roll) 2009! I ran into her the other day and she corrected me for saying it had been 10 years. So it's clear that Faslodex was doing good work before Ibrance was approved. I hope you'll take it!
Love from PatGMc (9+ years metastatic, coming up on 5 years since I started Ibrance)
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Yep, listen to Pat!!!
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Pat gmc
Cureious
Thanks, I will call tomorrow for my appointment. I so hope I can be like you all.
I have been so weak and then discouraged. You all help so much.
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Positive2strong, all of us sure have our discouraging moments in this battle and it's important to find things that bring you joy.
And never fear, those of us who listen to Cure-ious are going to live long enough for the cure as she's keeping up with all the latest research!
We're all going to dance our way to healing and live to die from nothing someday!
I pray that you have a good week!
Love from PatGMc
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Oh, Pat...it's always so good to hear your voice! Oddly enough, I was thinking very recently about how some of these folks need a good "dose of Pat"! Your wise counsel have uplifted so many of us over the years. Between you and Cure-ious, we're in good hands emotionally and medically! I hope that you and your family are doing well.
Positive, hang in there. With future clarity will come some emotional stability and strength. I hope that your meeting with your onc goes well. I'm sure that you've heard this from others, but keep a notebook for your onc questions with you at all times. Questions and thoughts will strike you at odd times, and you need a place to write them down so that you have all of your questions and concerns organized and at the ready when you meet with the onc. Questions fly away from my brain when sitting in "the chair", but when armed with my notebook and list (and a pencil to jot down responses), I can ask all of my questions during my onc meeting.
Sunni, I've had radiation twice, and I'm bones only (extensive throughout skeleton) and have been for 4 1/2 yrs. A couple of years ago there was some activity in the neck of one of my femurs, and the RO radiated just the hips (both, I think). I was told that this would strengthen this area against breakage.
I don't know whether this counts or not, but I also had SBRT (stereotactic body radiation therapy) for a slightly enlarged left periclavicular node. As I recall, it was three very short and enormously focused doses of radiation, and the treatment appears to have eliminated that problem.
Good luck to you all!
[A quick update to those of you who have followed the boat trips..we made it from VA to Troy NY (500 mi) when my husband levered himself up out of the stern lazarette in some odd fashion and ripped his left triceps muscle...we heard it! We turned tail and headed back to VA in the boat and arrived late yesterday. Surgery Wednesday. Old age (75) is not for the faint of heart!]
xox
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Lynn,
Oh, no! I just read about your husband. Hope the surgery goes well and recovery is fast.
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Thanks. Bev. He's actually doing well in his splint, but we see the surgeon tomorrow for his diagnosis and treatment. We are hoping no surgery, but that seems unlikely. Onward...
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The reason I was wondering about radiation is: My hip pain has very much reduced its nothing in comparison to when I was diagnosed but it's not gone altogether most days I have no hip pain at all, the days I have pain or sometimes its a sort of pulling sensation ( very hard to describe ) I take a mild painkiller and the pain goes away, so would radiation be any of any use to me at this stage? or should I wait to see if I need it. My oncologist seemed to be very nonplussed about me getting radiation she recommended vivmovo https://www.drugs.com/vimovo.html so now I don't know what to think.
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I begin radiation this week to T3 and C7...anyone have it there and can offer some words of wisdom/comfort?
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sunnidays, I had radiation to T11 with intent to kill that met. I had no pain or symptoms from it at all, it was found on a scan. I have an aggressive RO. If that is your only site of mets I'd strongly consider rads with curative intent. I'd want to know what dose the radiologist is proposing and consider maybe SBRT instead of traditional rads ...
Your oncologist is just suggestng a pain reliever but what your RO can do is possible control of the met. I'd just want to know how much rads, is there chance that they can kill it etc because usually once you radiate a field, it limits your opportunity for a repeat later due to lifetime maxes of radiation to an area.
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I agree with moth, tho I really love and trust my RO. Radiation took away my pain. The only discomfort is I think the result of change in bone shape or weakness while the bone is healing.
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Thank you, Joyner, my friend! I'm so sorry about your husband's injury. Mine is struggling with his 72 year old football knees and a bum shoulder. (If we'd known we were going to be in such bad shape you and I should have gotten younger husbands!) JK, this one is too precious for words and my 71 year old self will keep him!
Re: Radiation.....I have a bit more discomfort on the left side of my sacrum and am considering radiating after scans in September. It's still not to the point where I need pain meds but has become kind of a preoccupation. I told my oncologist to research a clinical trial for me if there is something close by. I just don't want to travel because of the shape my hubby's in and my nausea which is exacerbated (sp?) by motion. We shall see!
Love from PatGMc
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Hi Pat. Wonderful to see you posting over here! I miss "seeing you" on the Ibrance thread but my dance with Palbo was short.
Joyner, sorry to hear about your hubby but age is not without its challenges! I am often trying to figure out where the mets stop and the degenerative disease begins!
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Sadie I second your whole first sentence to Pat..same for me
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I am going to ask about radiation I have an appointment on the 12th. I had a good read of my report it says I have multifocal osseous metastatic it's in a few bits of my hip There is no harm in seeing a radiologist and asking them what they think. I do have it on a rib 3 on my spine and 2 on my clavicle. The report does not mention size, I also have arthritis on one of my knees. The bond scan only showed hip and rib and no the others does anyone know why that would be?
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sunnidays, have you started treatment? Could it have shrunk the metastasis so much that it doesn't appear any longer (yay!)? Also, I think there's a difference between a radiologist (interprets MRIs and CTs etc) and a radiation oncologist (treats cancer with radiation). Wanted to make sure they know what you're asking about. This can be so overwhelming. Good luck!
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sunnidays, ILC is much trickier to see on scans. Only MRI picks mine up, not CT or PET or bone scan. That could be the reason.
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even for IDC, bone mets can be hard to visualize. I went down the rabbit hole of research on best imaging for bone mets and backed out after a few hrs, basically coming out with the sense that "it's complicated".
Partly because lesions can by lytic, sclerotic or mixed and apparently they look different. Then, after radiation or other effective treatment, they look different again.
I have both a ct and bone scan and they compare and correlate what they see on both.
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a question: what do we know about lucent lesions? and the treatment options? Bone scan showed a new lucent lesion in my femur. I see an old thread here and an article about this which were not very helpful. In the search “moth-eaten” and “due to bone marrow” come up. Has anyone heard/ experienced lucent lesions? Thanks
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Snow-drop, lucent refers to its appearance on imaging - it's less dense, more transparent. In the context of breast cancer, it's almost always a lytic lesion (which refers less to the appearance and more to the actual bone pathology process; lysis means destruction) (though radiologists have a long mnemonic for other causes of lucent bone lesions; if you goog fogmachines and lucent you get some discussions about it)
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Yes, it is a radiation oncologist I meant. I have another question what is the longes someone on here has had bone Mets for?
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sunnidays, my bone mets were found in an MRI in 2013 but was thought to be multiple myeloma, which they never found. It was six years of bone mets with no treatment until it spread. I've had it a total of eight years with two years on Ibrance and Letrozole. I don’t want to delete this post, but I do see I’ve let you know this in a different thread about ILC. Sorry for the repeat.
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Moth thank you, based on your suggestion I found many good articles, can’t stop searching-reading!
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sunnidays, I think on this board we have someone who's been alive 10 yrs+ with bone mets. There are some studies being conducted now on exceptional responders but I dont know if we know the longest... from this article we know that it matters what hormone markers are present. See Figure 3 https://bmccancer.biomedcentral.com/articles/10.11...
That study didn't look at IDC v ILC though... (& it's based on seer data which doesn't capture recurrence so it's about de novo diagnoses)
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I think I had the bone Mets at diagnosis 7 years ago but they were too small to see on scans I have no scientific evidence for this though, because I had ILC I did not have a lump so it was diagnosed when it was stage 111.
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Hi newly found all my bone mets seems i have them in my skull, spine, ribs, neck, femur, pelvic etc... pretty scared right now i am worried about how many i have its multiple mets everywhere. Go back to cancer doc in a week worried that so many will make me untreatable trying to read up on others any good threads for this ?
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