Bone Mets Thread
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I got an early pathology report this afternoon, and I am officially metastatic in my L1 vertebra. There was no additional info on hormone receptor status or HER2 status. I see my MO Friday morning and hopefully she will have all of that info and a treatment plan. I knew I would end up here, but now it is official.
The doctor who did my biopsy last week said the lesion in my back is 4 cm by 2 cm. I also have a 6 mm lesion in my right hip socket. I guess that high CEA tumor marker of 31.4 was a good indicator that something was up.
Three more days until I know characteristics and will know my future
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Oh, wow, FGodmother, I'm so sorry. I kept reading the word "metastatic" in my chart and thinking, "WHAT??? ME???"
I'm glad you're here with us, though. Keep us posted as you get more information.
Carol
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FGodmother - that's not too bad as far as mets go, it really isn't. You could technically zap both bits and potentially go a long time in remission on pills. Exbrngrlex has done10 years like that after radiating one met, and there are other ladies with only a few bone mets who had them managed and have been going years with no change. All depends on the markers, but you aren't sitting in a bad spot (if you have to be sitting here at all!).
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Great news, Sunshine!
Godmother, I'm sorry that you have to join us, but we welcome you with open arms. Good luck!
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hello, bone metsters!
You may recall that I had previously posted about pain in my back, etc. Well, I guess I kind of have an answer, but no solution yet.
For almost 7 weeks, I have had increasing pain in my back. Long story short, I had MRIs of my lumbar and my thoracic spine on Sunday. Report details a number of issues with my spine, including a ridiculous number of structural issues. But there is wording in the report that does say extensive metastasis (which I think we knew about before -- so not sure if this is old or new.) I wrote about this the other day, but I didn't think this was going to go the way it did today.
Yesterday I talked with my old radiation oncologist, and she didn't think that radiation oncology had any place here. But today when I talked with the neurosurgeon, he didn't think we should do any surgery but rather we should call in the people from radiology. The neurosurgeon thinks we should radiate some of the areas and insert cement in the lumbar spine.
I'm not opposed to doing either thing -- I just want some relief. But I think I read a few people on here talk about not wanting to get cement or having problems with it. I would appreciate it if you would let me know anything about Kyphoplasty or vertoplasty. Thanks much!
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The news I have been awaiting and praying for has finally arrived. I am ER+, PR+ and HER2-. Since the big lesion is 4 cm by 2cm, will I have radiation there first? I am sure to go back on an AI, and probably Ibrance and Xgeva right away. I feel like a heavy load has been lifted. I was truly afraid I would come back triple negative. My aunt was just diagnosed triple negative. I know I can handle the treatment that is immediately ahead. And I plan to support my sisters here as best I can. Gentle hugs to you all
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Good evening,
I had a question for the more experienced members. I had a CT with contrast a week ago and the dr saw "hot spots" on several bones. Lots on the ribcage other bones as well as one kidney. Since I have had breast cancer, they are sending for a bone scan on Friday and to a urologist and back to my oncologist.
I have had strange symptoms that no one seems to be able to nail down to anything else (extreme fatigue, low back pain that gets unbearable when I sleep, etc). I have searched to see if the hot spots could be something else but i fear the worst.
Has anyone had false positive hot spots on a Ct with contrast?
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Raising this again -- posted about it yesterday.
Has anyone had "vertebral augmentation" -- the cement in the bones aka either Kyphoplasty or vertobroplasty? Any thoughts yay or nay?
Thanks for any info you can provide. I may be headed to one of these procedures.
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I thought maybe Maaki has? I know she had some vertebrae removed. She's usually over in the Xeloda threads (unless it was Verzinio?)
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BevJen, I considered as a candidate for this treatment, radiation first then treatment or biopsy-treatment (including thermal or cool and then cement infusion) as a single treatment, unfortunately my vertebrae broken and I am no longer able to get this treatment. Knowing every movement or daily activities may cause another fracture, I’d take this treatment without a doubt if I could. I hope someone with same experience pops in soon.
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Snow-drop,
So I take it your docs said you could not do it? So what do you do for the pain from the fracture(s)? Is it gone? And are these compression fractures? My MRI reports are saying "mild compression fractures."
I still have no answer from my doctors, and I'm getting anxious and irritated. This doesn't seem to be rocket science to me. I feel like I'm getting the Stage IV shuffle, if you know what I mean.
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Bev-Jen, I don't have answers for you regarding rads and cement to the spine, but my suggestion is to start a new thread, specifically asking for information on dealing with extensive spine mets and if anyone has experience, can give advice on the pros and cons of radiation and cement to the spine.
Not everyone with bone mets follows this thread, so a new thread might catch the eye of those who haven't seen your question here. It’s worth a shot.
I had scans earlier this week and haven't got the report yet nor heard from my oncologist. It's possible the results will show progression and like you, I've been dealing with extensive spine mets. So I will be interested to know how others deal with this.
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BevJen, I hope you get some good feedback soon. I do not want to scare you since my case is complicated, the Neurointerventional surgeon believes the possibility of spreading lesions into cord is greater if they pursue the procedures. The pain resolved after 10 sessions of radiation, when my bone broken I heard a crack and for several hours I couldn’t move my legs. When the vertebrae fractured lesions spread into my cord, since then I have to take mri every few months to monitor them, it is scary. I wish the tumor team started the treatment sooner so none of these wouldve happened. now have mild pain in different vertebrae, around Thoracic area, where bone Mets located, I asked to see RO since my MO is not really into this discussion, I want to do something like local therapy because I do not want that bad experience repeat.
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Snow-drop,
Thanks for that information. Wow. I didn't even know that they would avoid such procedures if there is a possibility of spread. This will be one of my questions if they ever figure out my case.
Please see the link in the post below. Both radiologists and interventional radiologists can do procedures to "kill" the tumors, if that's what you're thinking. The video I linked is with an interventional radiologist. Perhaps you should talk with one of those as well/
Thanks.
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Divine,
Thanks for the suggestion to open up a new thread. I honestly don't have the energy to do that right now -- too much pain, etc.
But I have done a lot of research and have actually gotten a few responses through PMs. Apparently these procedures can be done by either radiologists or interventional radiologists. I saw a neurosurgeon first. He was supposed to talk it over with the radiologists. And now I've emailed my interventional radiologist who did my 3 liver microwave procedures. So we'll see how this all pans out.
Here's the link -- this doc is an IR:
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BevJen, thanks for sharing the link, very informative presentation.
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Thank you for sharing this link. Two years ago, I was having awful pain in my T12, Onc sent me to Radiologist to see what he could do. This guy looked at my last three Bone scans, He then left left the room. When he returned, he said he and three of his colleges could see nothing wrong wrong with my T12 by looking at the bone scans. I was gobs mashed and said but I have pain. He ordered a MRI for the next day, The results were yes I had cancer all thrugh the area! My pain level was not h igh enough for the cememt produre. But he offered 10 does of rads to kill the cancer off. There was a bit of pain relief. But every time I had a Bone Scan after that the area sill lit up. Every time my Onc would say but didn't you have this radiated?
Since then I've bee put on the Fentyanyl Patch and Hydrocodon. In Sept I had broke my wrist, the two long bones. Guess it was set wrong, because just by looking at it you can tell its crocked. There's wicked pain in it sometimes. But I am not going to have it rebroke, plates and screws etc,
Unfortunately my level of trust has taken a nose dive
I live alone and want to continue as long as I can.
The two pain killers do help but not enough
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snooky1954 I’m sorry you are having so much pain and having to deal with all these medical decisions. Even though you live alone, I hope we bring some comfort here. ((Hugs))
Your comment about the bone scan gives me pause, but I’m hoping our situations are different. (Thanks for posting.)
My last two bone scan showed no mets, but I’ve had constant pain around T11 (where I had my mets) for the last two months The pain is sometimes mild and sometimes moderate but nothing makes it go away. My liver levels are perfect so there is no clear signal that the pain is from my gallstones.
My GI doc started me on Prilosec but that does nothing and I never had heartburn pain. I’m going back for another visit to see if they can figure this out.
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Cyathea,
I think that a lot of us wonder what good those bone scans do. My MO likes them too, but so far, I can't see that they give any clear direction as to what is going on in our bodies. I think that MRIs are actually more dependable. I don't know which one is cheaper, but I'm sure my MO does, and she know she doesn't want to spend time arguing with insurance companies.
Interesting, Snooky that the radiologist acknowledged "pain," but not enough pain to do a Kyphoplasty or a vertebroplasty with the rads and cement. That seems to me to be a distinction without a difference. What if you had walked out of that appointment where he said that and then twisted your back in some way that caused you more pain? And I hate when they use those stupid 1-10 scales. I never know how to gauge my pain -- I'm in pain, period, enough to affect my day to day life in a bad way. Isn't that sufficient for these docs?
Speaking of that, I did see an article that said that your pain has to be at least a "4" for them to think about those procedures. Remember that number, if you're interested in getting treatment for back pain. I know for a fact that when this started, my pain was less. I reported to my MO that my pain was maybe at a 2-3. I noticed in her progress notes that after that appointment, she noted "no pain." So I guess that was too low of a number for her to make a note? Huh?
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BevJen,
Good morning. Right after receiving the dreadful news of a spine met (de novo), I met with RO and IR to go over treatment modalities. Both felt they could help me, due to the severity of pain I started to have post lumpectomy. My spine met pain was exacerbated one month after the surgery. The key word was "pain" and was not being managed well on the pain medication. Surprisingly the decision was left up to me ( Kyphoplasty or SBRT). The deciding factor for me was my alignment and no compression fractures noted on the imaging. So I went with SBRT (3 sessions). In retrospect I probably should of seen Ortho to be the tiebreaker. Knock on wood so far so good. Whatever procedure you receive I hope you find relief asap...
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Tinkerbell,
Thanks for your message. If it's a tie for me between an unknown RO and the IR who I now know pretty well, it's going to be hands down for me with the IR -- there is that trust factor there for me with him. If he says go with the RO, I would listen to that as well.
The problem now is that the neurosurgeon wants to bring the case to the spine tumor board. Happy to have several people evaluating this, but also anxious to find out what exactly can be done.My MRIs of the thoracic and lumbar spines do indicate mild compression fractures at T7, T1, T 12, and L3, so it seems like kyphoplasty might be in my future to correct this.
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BevJen,
After reading the above with "mild compression fractures at T7, T1, T 12, and L3", from my understanding that is why one would proceed with kyphoplasty. If your quality of life can not be maintained, I can not see why this minimally invasive procedure will not be offered. I'm sure your IR will be in favor of this procedure at the tumor board meeting. This should be a "slam dunk", in the spirit of March Madness.
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I had a spine biopsy last Tue to the T12. A spot showed up on CT scan a few months ago and again on a bone scan but nothing significant showed on a PET scan.
Before I was told about a potential bone met I would have said I didn't have any pain but it whether it's psychosomatic or not I find I have a bit of pain more often now. Since the biopsy my back is very achy but not just in the area of T12. Sometimes higher or lower.
How long did it take any of you to get over the spine biopsy? I've no appointment to get results yet but presume they will ring at the end of next week.
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Snooky I cannot find the post where you say what the name of the best Fenynal patch is??/ What is it again?
Also have you been taking melatonin?? I am wondering if this is helping my spine met pain?? I took it last night after not have taken it for a week and this morning I didn't feel pain there yet.....I take 20mg but after this week going to increase to 30mg. Mine I had/have is Alvogen.....was that one bad?
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Nichole-- I have to look something up but will get back to you ASAP. The very worse for ratings is Apotex, which is the first one they gave me, Stay away from it,
and yes I have taken Melaton for two years years since I read it's good for cancer, one thing know that after taking it for a few months, it stops working for sleep. Pulse it.
I'll be back with answers for you.
a
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Just chiming in on the bone scan comment - completely pointless in my opinion. I just humor my MO by going along with those scans as they have never given an accurate picture of my extensive bone mets. Not sure why he likes them.
Sorry I can’t help with the spine question BevJen. So far my mets have only caused pain and nerve issues, no breaks.
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hoping you .all can provide some perspective
I was dx de,novo,with Mets to spine, ribs and pelvis 3 months ago. Been on lettrosol, verzenio and had 1 Xygeva shot
So far Mets are stable and blood work is good. Tumor markers are down after 1 month. All of which I am extremely grateful fior
it just seems to me reading these threads that fractures are inevitable- even with the drugs
Am I wrong? I guess I’m just trying to manage my expectations even knowing everyone is different.
Thanks in advance for your per
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ChathamLady- I have had bone mets for 3 1/2 years. On Letrozole, Ibrance, Xgeva. No fractures.
Bone scans- I think bone scans are not very accurate for me. I have rheumatoid arthritis. They have "lit up" everywhere. But seems to me not too accurate on the cancer. We only do them periodically, not routine. **** How do you monitor the bone mets then? ****** My CT's of chest and abdomen mention a "bone window" --- I guess an area they can see some of the spine/bone. But I am not getting scans to visualize all the bones well.
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candy-678 - thank you so much fir the quick reply. I can on,y hope I will have the same success
And that’s a key fir me - hope. I’ve always worried about things I can’t control, go to the dark side of every situation. Much easier to read the bad and ugly that the good.
I’m glad you’re doing well!
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Chatham, wow, you are very new to the diagnosis of bone metastases. I’m glad you found us.
I was diagnosed with bone mets 10 years ago. After initial treatment the first year, I had almost 8 years of stability. The past couple years have been more progression in bones, through the spine. As of yet, tho, I do not have fractures. I cannot say what my future holds, but it’s possible to go years without fractures.
I had a question to ask you all when you speak of “pain”. My bones can ache, but I would not call it pain. When I’m relaxing, I don’t usually ache, but when I’m moving about, like preparing a big Easter dinner (which I’m making today so we can just have leftovers tomorrow), I feel the ache.
So can you define the pain? Or do you mean ache? I’ve had a couple broken bones in my feet and surgery on them, so I know that kind of pain. With achy bones, I can still shuffle around tho I take lots of breaks. I was just wondering what kind of definition you’d give to your pain.
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