Bone Mets Thread
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Sunnidays - thanks for shedding some light on nutrition. I think we all hear different things from our doctors so it's nice to compare notes sometimes
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so apparently these are healing mets, not active ones. If your therapy is working the bone scan done 3-6 months can show increased uptake because of isteoblastic healing. This occurs in about 20% The only way to know for sure is to see improvement on a f/u study in 3 months. I feel GREAT wi improved pain and stiffness. My largest lesion had a soft tissue mass associated with it and was both lyric and sclerotic. Now the mass is gone and the entire lesion is sclerotic- I take this as positive. Hate UNclear medicine Use a lot of judgement in interpreting these stidie
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Beth,
Will you also take Ibrance. I also have had 3 x shots of Faslodex and go on Monday for 4th. mine was so irregular with my surgery. I started then stopped then started again.
I get so little info from onc ….when I asked how many Mets she just said multiple we don’t countthem0 -
I have a question: This was in the comments section of my recent nuclear med bone scan.
FINDINGS: When compared to prior examination, once again identified are multifocal areas of increased activity involving the spine at T6, T8, T9 and L5, as well as ribs involving right posterior first rib, left third, seventh, eighth and ninth ribs, and left fourth rib anteriorly as well as L5 vertebral body to the left of midline and left hip acetabular region on keeping with bony metastatic disease. In fact when correlated with the CT exam, there is significantly more sclerotic bony metastatic lesions however these are metastatic lesions that appear to be metabolically active. There also is focal area of activity noted within the right proximal numerus also likely an additional bone metastasis. Compared with the prior examination, there likely is not significant interval change.
This report is a little confusing. "Significantly more sclerotic bony metastatic lesions...appear to be metabolically active." And the comment "Likely not a significant interval change."
Any comments on this? The call from the MO's office said scans were stable.
Carol
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This is why I hate these stupid nuclear bone scans. I've yet to read one that makes total sense.
I would be puzzled too. From my questioning of my oncologist. sclerotic means "healing." But the "metabolically active" stuff would make me think that that's not the case. As for the "likely not a significant interval change," I would guess that was a radiologist's CYA play --
I hope someone else can weigh in. As I said, I find these nuclear bone scans ridiculous.
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Bevjen, personally, I would consider that activity as part of it healing. In my experience so far, especially with bone scans, any sign of progression is documented as “suspicious” or “likely” to be active disease and is noted to be followed up. But, can you message your MO to explain that note in greater detail?
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Positive2strong - my doctor wants me to do fasolex shots with ribociclib not sure if i am spelling it right. She said it is similar to Ibrance she just preers it not sure what the difference is. Then hopefully the bone strenghthener soon as i seem to be breaking alot.
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Just to clarify, not all sclerotic mets are healing. In my case, I have only ever had sclerotic mets which have, at times, progressed. Bone scans, however, are completely useless for me as, for whatever reason, my mets don’t show up but on CT? Whoa! My theory is that it’s the nature of my slower growing cancer.
Not to say that it isn’t healing in your case Sunshine. The report does seem to indicate stable disease. Yeah!
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I guess I don't want to get the scan or go into any medical locations right now. The staff are all only wearing loose surgical masks, no one is wearing N95 or better. Delta is suppose to be easier to transmit.
Update: Feeling kind of stupid, but what I thought was bad muscle/bone issues is really (not a doctor, my guess only, and seems accurate) is very bad lactic acid build up not just in the muscle but in the body. So, extra tired and brain fog. Apparently, one's lactic acid threshold can be reduced, and not like when we were young, the recovery is a lot faster and the lactic acid build up is less noticeable. Hope this might be helpful info.
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Sunshine - I like what Mae said. So sounds like a pretty good report, and if your doc also thinks it's pretty good, then I would go with that.
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Thanks, everyone. I'll probably ask about it at my next visit, but I know if it were a big deal, she'd have called me personally.
Looks like I'm good until December 15 when I have my next set of scans. Time to get my car repainted. YAY!
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wondering if anyone else had this
I had sore neck area and one shoulder few days then I woke up in unbelievable pain Went to emergency pain is so bad I can’t stand or stay sitting up pain is too bad
Staying in hospital lots of pain meds and going to transport me everyday for radiation on Mets in this area
I literally am bedridden at moment this is worrying me. Just wondered if anyone else had this happen
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beth, sorry you're in pain. what did ths scans show? where are your mets - in the cervical spine?
I think if the met is pressing on the nerve it can be the cause of pain. I hope the rads start working quickly!
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thanks moth
Yes I have a lot of Mets at top of spine and doctor said same thing as you about probably pressing on nerve
I am hoping I am fixable
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Hi Beth,
Sorry you are dealing with pain but I can say, from personal experience, that radiation is a god send. I have extensive bone mets and have had to have multiple zaps over the last four plus years. The last was November 2020 when I suddenly started having blinding headaches. Radiation to my c-spine and base of my skull took care of those headaches completely. I've had hip pain, sciatica - you name it. My RO is practically on speed dial. LOL.
Now I'm dealing with significant pain in my right shoulder blade with some issues in my right arm. It may be referred pain from the liver so I am waiting to see if chemo knocks it back. If not, I'll explore possible bone mets on the scapula (which I also have).
Hope you can get the pain under control soon.
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sadiesservant sounds like you have been through a lot so glad to hear rads helped so much definitely needed to hear that today
How long did it take for you to feel the relief with rads? Just wondering
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Hi friends. I just today received confirmation of a 1.5 cm bone met to my left sacrum (IDC, 95% ER+, PR-, HER2-). I visit my oncologist tomorrow and am currently making list of questions and doing mad research in advance. If you have any words of wisdom or suggestions of must-ask questions, I would be so very grateful.
I previously had 3 yrs of Zometa (2x year). Ovaries have been out since 2014 and I've been on Tamoxifen ever since (although my onc and I revisited this every year and debated switching to an AI. Now I'm regretting that I didn't.)
I'm anticipating that I'll go on some type of AI plus a CDK inhibitor and possibly have radiation. Maybe also Xgeva?
Thank you so much. Putting good energy out into the universe for every single one of us.
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LGP sorry you are joining us here in the stage IV group. That really sucks. Is your met painful? With only the one met, you are oligemetastatic and my only words of wisdom would be to read up on that and push for aggressive treatment at the outset (like SBRT for the met if you can get it), but that's just my opinion. Evidence on oligomets is still scant.
I think you're anticipating correctly and yes. they usually do want either a bisphosphonate or xgeva for bone strengthening when there are bone mets.
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Beth, my pain relief was almost immediate in most cases. It was rather miraculous really. Killed the little blighters and took pressure off of nerves. It does depend a bit on the location. In some cases there is a bit of pain from the procedure which takes a few days to resolve but overall I have had really good experiences with radiation. (I should say that in the case of the cervical mets I lost my sense of taste for about two months... that sucked... but it did come back.)
LGP, sorry you are joining us. I agree with Moth, I would push for radiation for that met to try to eliminate it. And don't beat yourself up about not switching hormone therapies. There is no way to know if it would have made any difference and you clearly threw everything at it with the chemo. Unfortunately, it's a crap shoot. I had almost 16 years between my initial stage 2 diagnosis and MBC. There is just no way to know. Wishing you good success with the bone met.
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Sadiesservant - thank you so much! Appreciate the kind words. It's hard not to replay everything all of us do/have done to prevent a recurrence and not ask 'What did I miss?' It's crazy making. But you're right, it's a crap shoot. Take good care.
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LGP, so sorry you’re here with us but welcome! The ladies here are wonderful and full of advice and understanding. I hope you get all your questions answered. Good luck at your MO tomorrow, we’ll be thinking about you
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Sadiesservant thanks so much for the reply that is amazing news even to know there is a chance I may feel relief quickly or some pain and loss of taste I can deal with if I know there is a light at the end of the tunnel where the pain goes away. I am glad to hear how well it went for you I really needed to hear this today
I am presently unable to stand or sit up for more than about 20 minutes and I am going a bit crazy lying here in the hospital I can do nothing but think cause I can’t move and have got myself all worked up with fear and frustration you taking the time to tell me this already has me in a totally different mindset good mindset feeling so much better thanks so much
❤️Bet
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I’m glad to hear you are feeling a bit more optimistic Beth. I can’t say that I have ever been as bad as you seem to be at the moment but the body is a funny thing. It kind of cascades when we have a problem in one area, mushrooming into a “whole body experience”. Your muscles will try to compensate, often not very effectively. Next thing you know…. oy vey!
Hopefully your team will get on top of the pain and find a way to deal with the cause. Hugs
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lgp
This is the best place be everyone here is helpful kind and understands what your going through
I am still pretty new to Mets DX and it is hard to get used to so sorry you are here
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Things have been very hectic so I've just been reading lately....welcome to new folks like Beth, LGP. Beth I was shocked like everyone at your awful palliative care doctor who doesn't seem to understand his own field. And sorry for all your pain, I hope they find a source and a solution soon!
I had a lovely hiking vacation during which I took 3 days off Verzenio, so thanks to all of you who encouraged that. Paying for it now by being behind at work, but totally worth it. My ANC and WBC bounced back amazingly, almost to over 1.0. But Onc wants me to stay on top dose because he thinks the cancer's interference w/ my bone marrow means anything will tank my numbers. When he laid out the alternatives of going on med regimes that seemed less likely to be effective I thought, well, I'll put up with this awhile, be as careful as I can. BUT that was when he also agreed to do a PET CT, last one was 8 months ago during diagnosis when they still were thinking Multiple Myeloma. Then the $*#* insurance company denied it, saying "Your records show that you have been treated for cancer in your breast(s)" and "Your records do not show results of recent standard picture studies that were unclear." What does this insurance company MD not understand about having MBC, and what I understand as the standard monitoring? In fact I am being treated not for cancer in my breasts but for systemically for the whole disease, which has been mainly in my bones. I have been in treatment (on and off admittedly with med changes, but still) for 6 months. Isn't this a standard time for a re-scan.? Any similar experiences and what to do would be welcome.
I'm kind of holding off as I have an appointment with MO in a week and a half and figure we can take it up then. But I'm worried that he hasn't been particularly valiant about going up against the insurance company before (when they turned down Foundation One, again allegedly because they were sure I had a firm diagnosis that was wrong). I feel this is so ridiculously misconceived it must be easy to fix....also that they obviously didn't look all that carefully into my records. Without any scans it's kind of hard to evaluate how necessary it is to keep taking meds that tank my wbc.
Sigh....anyway, in brighter news, 7 of my childhood friends that I still keep in touch with are coming to visit next week (we're renting a house a couple miles from mine). Got to get all my midterm grading done so I can just bask in their care and concern.....
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prairiesea, fwiw, I get a CT and nuclear bone scan every 3 months.
If you haven't had a scan since initial dx & starting treatment that is very concerning IMO.
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Prairiesea - I agree with Moth. I also get either a bone scan or a CT scan, sometimes both, every 4 months and meet with my MO on that same schedule. So I agree that seems concerning. Is there a nurse navigator or case manager either with your MOs office or the insurance company you could work with? I know each company is different but many of them hire case managers who are usually RNs or someone with medical background to look into your medical record and look for things that may be incorrect and help patients navigate the complexities of insurance. That might be something to investigate.
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prairiesea, I am glad you had a good time. you are not alone with insurance headaches, after 2 years stupid insurance md denied my scans, he didn't bother to review my documents, don't know in which fantasy world this dumb circulates...
I hate to see those clueless outdated male physicians -who kicked out their practices btw- made their way to insurance companies and downgrade breast cancer as non important disease, I wanted to write him what about prostat cancer duh? With all of those, I blame pink October more than ever, this movement brain washes public opinion about BC to a girlie pinkie simple thing, in another thread someone commented breast cancer isn't pretty and pink, it's ugly and black...
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