Bone Mets Thread
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So I have a question for the group---
The way I understand bone mets is osseous is thin bone--swiss cheese-- from the cancer. Sclerotic is thick bone from healing? with maybe the cancer underneath the thickened layer of bone??? So both ways of describing bone mets, but still kind of different. Am I thinking right???
So my latest CT of chest-- primarily looking at lungs, but saw bone in the "bone window" as it says on the CT-- describes my bone mets as "scattered stable sclerotic osseous lesions on the spine". So sclerotic and osseous???? Maybe some areas thick and some thin???
What do you all think? Does your scans describe your bone mets this way?
I already met with my MO and she didn't mention the bone mets. She concentrates on the liver mets and what is going on there.
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Candy, AFAIK the “Swiss cheese” lesions are called lytic lesions (when bone has been eaten away by the cancer)
I think “osseous” just means having to do with bone.
Google confirms: “Osseous: Having to do with bone, consisting of bone, or resembling bone.“
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candy, olma is correct.
Lytic typically refers to bone mets showing active cancer or damage that is not healed.
“Scattered stable sclerotic osseous bone lesions” would refer to various stable healed or healing bone lesions. This is a good report note.
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Thanks guys. I was wrong. Good that it is stable.
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Candy,
What they all said. Mine are also all labeled as sclerotic. My consulting doctor says that he believes that I probably had mets in my bone marrow that healed and displayed as sclerotic bone mets. My CT from last week says "multiple sclerotic metastases" and that is looks pretty much the same (my words at the end there, not the radiologists.)
And my MO also focuses more on the liver mets, as do I. My feeling is that those are the ones that are more "deadly," although I know that bone mets can also get out of control.
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Hi,
I'm still new to this website. It's been helpful and full of useful information. I have a question though.
I just finished 6 rounds of taxol. (I was diagnosed denovo August 2020 with bone mets to the spine HER2+ ER- PR-). I got my first CT scan to check the status of my cancer after chemo. I typically have back pain before my next treatment. I am just nervous for my oncologist appointment Thursday. My report pretty much says there are sclerotic lesions on every vertebrae. Some say large some say small some say it involves an endplate. What does sclerotic lesions mean? Are they active? Are they healing? How will I know?
Thanks!
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Awheeler, Yes, sclerotic means healing and I think most can typically expect a report that reflects improvement after your initial rounds of chemo. I understand being nervous, many of us are around scan time but I think you’ll do good.
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Good morning, all. I had my bone and CT scans yesterday and I'm STABLE! I know I'm only 9 months into this diagnosis but there's always that worry in the back of my mind about progression. My back and hips hurt pretty much all the time, but not enough to take anything except Tylenol PM at night.
I also had a COVID test yesterday which was negative. Apparently Scripps is requiring it before my Zometa infusion on Wednesday. Hopefully I won't have to do that every month. I'll ask my MO about the vaccination when I see her on Wednesday.
Wishing you all a peaceful day.
Carol
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Sunshine, Stable is great, congrats 🎉
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Congrats on that stable, Sunshine!
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HOORAY, Sunshine!!! And happy New Year1
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Woo hoo Sunshine! Every stable scan counts! Wishing you many, many more.
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Yay, Sunshine, for that stable news!
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Awesome news, Sunshine. Congratulations. Happy New Year.
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Congrats Sunshine! Awesome news!!!!
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Hi everyone, I’m not too active on the boards. Anyway I was reading on how we all feel the nerves at scan time. It’s scan time for me. I go for CT on Monday and soon after my full body bone scan. I keep praying and hoping that they find nothing or that my lesions have shrunk. I too have lesions everywhere, including my skull. I’m on letrezole and zoledex ,, Zometa very 3 months. My 2nd infusion is in January. I was on Ibrance for 3 weeks only but have been off since November due to major anemia that has caused 4 blood transfusion, but last labs my hemoglobin was good so no transfusion this time. So dr wants me off Ibrance for another month since I’m feeling good and so much more active ,, if I go back on Ibrance will be lower dose. All of this is just overwhelming at times. I was diagnosed with bone Mets this past July. Still trying to wrap my head around. First 4 months was bad. Practically bed ridden,,, i feel almost back to normal now. Hope to stay this way. Happy holidays everyone. Be safe.
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Hi Hopfull
You’re not alone on the anemia with Ibrance. I was only able to stay on it for a few months before my MO said stop! I didn’t get to the point of transfusions but came very close. I’ve been on Verzenio for over a year with no anemia issues. Perhaps suggest a change
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Sunshine - that is fantastic news! Congrats!
I just had another CT on my back because I've been having increased nerve "zaps" in my feet and legs, particularly at night. My neurologist was suspicious that the tumor at T12 that had caused a compression fracture was worse. Fortunately the CT was good in that it didn't show any new tumors and the tumors there are actually a bit smaller. The report doesn't even mention a compression fracture. I am taking that as "no news is good news". I had a dip in my ANC and WBCs again though so we are watching that.
Question, have any of you been able to get the vaccine for Covid or talked to your oncologists about it? I can sign up to get it but am conflicted, especially with the drop in my counts. I typically don't work with Covid patients, I work with everyone else or am the runner for those in "the hot zone." Due to severe short staffing have had to work the Covid zone the last few weeks and I'm really scared, even with full PPE. I am going to ask my MO about it on Jan 5th when I see her and am also going to ask for a medical exception from the Covid zone if I can get one. I have had several of my coworkers get the vaccine (all are healthy individuals) and had only one get really sick from it. Just wondering if anyone here had any insight to it or personal experience with it as I know several of you have strong science backgrounds. Thanks.
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Hi Emac,
The issue of access to the vaccine is very much top of mind for me. I’m in Canada and, while they initially flagged cancer patients as high on the priority list, there is currently no indication of where we are in the queue. In fact, our provincial health officer indicated that the Pfizer vaccine was not appropriate for cancer patients (so far only that and the Moderna vaccine are available). However, the cancer agency website seems to imply that it is a good option particularly given that mRNA technology was developed as a potential cancer treatment.
I will definitely have my arm out if and when it is available as I deal with enough potential risks. I don’t want to have to continue to add COVID to this list.
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Sunshine...great news!
Hopfull2...good luck on your scans. Keep us posted.
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Hi All,
I am hoping to hear about others experiences with radiation for skull mets. Just to give a bit of background - I have cancer inside my skull and all over my dura (although my actual brain is looking okay right now), with some bigger lesions that are starting to cause problems.
My doctors are are offering radiation, but I am honestly wondering if radiation will really make me feel better, or if it is just trading one set of problems for another. At the same time, I think if I go on like this things will inevitably only get worse. Has anyone done radiation treatments for skull mets? Did it help? What were your side effects? Also, what happened to your hair??? I know that should be the least of my worries right now, but I was really enjoying feeling like myself again.
I had hoped Xeloda would at least keep the skull/dura mets stable and I wouldn't need radiation, but based on my latest MRI results it's looking like that's a no. :-( Thanks everyone!
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Hi Buttonsmachine,
I just recently completed five rounds of radiation to my skull mets and cervical spine. I found out that I had mets at the base of my skull (area around the clivus) over a year ago and had some numbness but nothing bad enough to justify the potential risks. My MO and RO were perfectly comfortable with watchful waiting.
Fast forward a year later and I started experiencing worsening headaches that got to the point that they were blinding by 11:00 AM every day. While my scans came back as stable there seemed to be something brewing and my MO indicated that even a millimetre could cause issues with the nerves. Are you having symptoms?
I would say that I found the treatments harsh, partly because they were radiating the area where my spine meets my skull. It was a bit painful and, not surprisingly, I had headaches after each treatment - they zapped me, literally as I was pretty fatigued. I was fortunate in that I did not get the extremely sore throat that I was warned about but for a couple of months post treatment I woke with a scratchy sore throat each morning and had dry mouth. All of this led to significant impacts to my sense of taste. At the beginning it was horrendous in that nothing, absolutely nothing was palatable. Eating protein was like eating sawdust and really only chicken noodle soup was close to normal. I forced myself to keep eating and very gradually things improved thank goodness! Now, about three months after treatment I’m pretty much back to normal which apparently is sooner than most. I do have some ongoing fatigue but was also lucky in that I did not experience any sinus issues. Finally, in terms of my hair, I did lose my hair at the nape of my neck but my RO indicated it will grow back.
Did it help? Yes!!! The response was very fast. Within a few days of completing treatment the headaches were significantly less. I still have some low grade headaches but was quickly able to work at my computer for long hours (a requirement of my job) with no issues. It made a huge difference, a clear indication that my mets were definitely the issue.
So, my advice is, if you are having limiting symptoms I would definitely consider radiation treatments but, and it’s a big but, I would not take it lightly. I definitely found the treatments challenging. I would do it again if I was faced with such debilitating impacts but am glad I held off until I felt it was justified.
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buttons machine,
Hi. I too had 5 radiation treatment to my skull this past September, it was done after endoscopic surgery (through my nose) to debulk a lesion in my skull, that was already pressing on my nerves causing severe double vision 24/7 where I had to wear an eyepatch n couldn’t drive , so I was referred to neurologist to have the surgery followed my radiation, all doctors said that even after all of this I might not get my vision back and might continue to have double vision. My surgery was in August, radiation in September, by end of October, my double vision was gone. Radiation did take a toll on me. I was extremely fatigued, lost a lot of weight, I couldn’t hold any food down or I’d throw up , my potassium was bad and hemoglobin. But could be because I had surgery too prior to radiation. but now im over that ugly hump im glad I did the surgery and radiation. I’m driving again. My hair she’s a lot Good luck.
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Sadiesservant and Hopfull2, thank you so much for sharing your stories. I am glad to hear that radiation seemed to help both of you, although it certainly sounds like it was not an easy road.
I completely agree that radiation to the skull and brain is not something to do lightly. When my symptoms were relatively mild I was less inclined to to radiation, but unfortunately things have gotten progressively worse through Ibrance and now Xeloda too, and now I feel like I have to at least consider it. The largest lesion is around 4cm I think, and it is pressing on one of the muscles that controls my eyes so I am having more frequent double vision, not to mention intensifying headaches.
My RO mentioned maybe doing 10 treatments to the most problematic spot as a place to start. I wish there were a better way.
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I’m sorry you are having worsening symptoms Buttonsmachine. It sounds like we have been on a similar path in that we held off when symptoms were relatively mild. I can add that when my symptoms first appeared my MO was very quick to refer me to the RO. It was clear that this is not something to mess around with and, while some skull mets never cause problems, things can escalate.
It can definitely be challenging (not that any of this stage IV stuff is a walk in the park!) but the results were very positive. Wishing you much relief from your sysoon.
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My bone mets in the spine seem to be progressively get worse and the pain in my upper back and lower back has been increasing. My scans show extensive bone mets from C7 to L-5 (almost every vertebrae). I was on Piqray and now I am on Doxil chemotherapy.
I was referred to a 'Physiatrist' who referred me to physical therapy. Yesterday I had my first consult with the physical therapist, who basically assessed by gait, muscle strength, walking ability, etc. I have no problems with any of these activities. It is just the PAIN that is bothering me and I don't know if these physical therapy sessions are going to help me with that. I consider myself semi-active, though my job involves sitting at my computer for long periods of time. [Yes, that's one thing I'll have to keep an eye on!]
Has anyone gone through PT for managing pain in the spine? Has it helped you? I am on pain medications which help for a few hours. I cannot tolerate any opiods which is a big challenge in pain management. I will be seeing the RO next week to check if radiation is an option for my pain.
Please let me know your experience regarding physical therapy and if it has helped you.
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S3K5,
Prior to my May 2019 second diagnosis of stage IV, in fact the summer before that (2018), I was having increasing pain in my back and hips. I told my internist about it, and she referred me to PT. I did PT for maybe 3-4 months, and I have to say, it definitely improved my pain in my spine and hips. Of course, it's likely that I already had the mets in my spine by that time, so I'd say that PT worked for me to relieve pain. Of course, they gave me specific exercises to do at home as well, but over time, I haven't kept up with them.
I think it's probably worth a try for your pain. I truly was amazed by how much relief I got -- I was able to stop taking Ibuprofen pills after a few sessions.
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BevJen, thank you for your response. It is very encouraging.
I am in so much pain all the time, I am willing to try anything (except opiods, which I don't tolerate). My PT is amazing, She works only with cancer patients at MSKCC, so she has seen a lot of patients like me.
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I just started Palliative Care. I have chronic pain. All I use is Tylenol. The Palliative Care doc suggested Cymbalta. For chronic pain and some depression. Have any of you used Cymbalta for your pain?
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Candy,
I've been taking Duloxotine, a generic for Cymbalta, for chronic osteoarthritis pain for several years. No SEs that I can tell.
Go for it.
Tina
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