Bone Mets Thread
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Ok ladies I need your thoughts about this:
I have been on treatment for 5 years. My last PET showed no uptake in my bones. Bone scans are not good for me, as I have arthritis that shows up as hot spots. My CT's either say no NEW lesions or some CT's will say NO lesions seen (I get CT's every 3 months and different radiologists read them and comments on them).
I have mets in bone and liver. So am I just liver now?
I didn't think stage 4 cancer could just go away and you are all better now. Can't the cancer be inactive on a PET... but the bones be affected/ damaged from the cancer? Do the bones go back to pre-cancer status like you never had cancer? How about the integrity of the bones that were affected?
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I have never had a CT report say no lesions were seen. Mine usually note the previous mets and read them as sclerotic with no new lesions seen. My MO won't use the term NED because he says it's not accurate to say I have no evidence of disease based on sclerotic mets. He considers me in "stable remission". My bone scan this time around read completely negative and I have questions for my MO about that because I have arthritis too and that is usually noted on my bone scans even if the mets don't show. I asked my neurosurgeon if my T8 compression fracture would ever heal and he told me that while the mets may not be active the bones are never the same because the mets had eaten away at the bone so it would always be compromised. I'm not sure if that answers your question at all. I am interested in what others know on this.
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emac - that is what I confirmed on my side that even with the bone strengtheners, the bone is never 'the same' again. Its basic chemical and structural integrity has been compromise so while the cancer may have been removed or died off, the bone isnt regenerated in a similar manner. I suppose its not like a break which is a line and things knit back together, lytic lesions are effectively holes in the bone, so how would it knit?
I also get called stable (never NED, never remission, but they are very particular on language in this country and especially my hospital for various reasons I wont go into here) and my last scan had phrasing about healed sclerotic areas where radiation had been applied (something like that, I read it over my onc's shoulder). Now my oncologist would be fine if I wanted to go horseback riding or downhill skiing, etc which always blows my mind (I do neither) so it must be ok enough bone wise to support those types of activities.
Finally, I was of the impression that CT was better for soft tissue but MRI was better for bone specificity. So Candy, you may have former bone lesions not taking up contrast for the CT but could appear on an MRI.
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I reviewed the last few CT's. They said "scattered small sclerotic lesions noted..." and that there is no change from previous scan. 1 CT said "could represent bony islands". ?? What does that mean?
I googled bone islands-- they are benign areas. I have never had a bone biopsy. They biopsied my liver-- twice in the last 5 years. Definite liver mets of breast cancer. But do I have bone mets???!!! Maybe the sclerotic lesions are not bone mets after all??!!
But if I do really have bone mets then I just wondered if the cancer is non-active/stable with the treatment, then are the bones considered cancer free? And how strong are they post cancer?
Wow, Sondra, skiing or horseback riding is ok? That seems weird. You have BONE mets. Those activities are dangerous even for a healthy person, much less for compromised bone people.
Edited to add--- Can a person have a bone biopsy after being on treatment? Would it show positive for cancer even if the cancer is stable? Maybe I should have a biopsy now. Maybe I should question my MO about my bone mets label. Maybe I don't have bone mets after all. I know I have liver mets though. But, then I look at my PET from diagnosis and it says "lytic lesion of cervical spine" and "metastasis". So they must not have gotten it wrong all those years ago at diagnosis.
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As someone with newly discovered lytic lesions in spine, ribs (multiple fractures), and sternum, I am very interested in this thread, as I know nothing about these things. I too have wondered if the treatment destroys some of the cancer, do the bones get better in any way at all? Does the pain go away? Can fractured ribs "kinda/sort" heal? Just what activities are deemed OK and not OK to do? Right now it seems like most any activity I do that requires the use of my upper body; especially both arms/hands really sets off all kinds of back and rib pain, along with causing serious fatigue and depression, and I feel like if I do anything it is only making it all worse, i.e. causing more pain and fractures, etc. Does treatment make any of this better? If so, how is it better? I have yet to start treatment for this, but probably will be taking something by the end of the month. I'd love to hear people's thoughts and experiences with all of this.
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Yes. Consider yourself lucky that they want to repair and insert rod before bone breaks from the radiation. My femur broke 3 months after SBRT for a tumor. I had forgotten that it was a complication and ignored pain in my femur, thinking it was a pulled muscle. I had rod inserted, it's 1 1/2 years later, and I am finally, with lots of PT being able to walk normally. My surgeon said, "why didn't you come in earlier when your femur area was hurting? The operation would have been so much simpler!"
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I have no active lesions (I'm bone only), but I don't think I'm called cancer free. I think the assumption is that there's still microscopic disease. I'm still on lynparza and xgeva and getting scans every 4 months. No active lesions for over a year, based on PET-CT scans.
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star2017,
I know very little about Lynparza. Are you on this treatment because you have the inherited BRCA mutation?
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weninwi - Lynparza can be prescribed for the somatic carrier (BRCA mutation picked up along the way, but not inherited) as well. Im also on Lynparza (as is Candy) but I do believe (and correct me if Im wrong, star and candy) the three of us are all genetic carriers.
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I hope I am saying this right---- I tested negative for BRCA with genetic testing. But... with genomic testing on the liver tumor I was BRCA positive. So I am a somatic carrier, I guess. I have been on Lynparza for 19 months, and still stable, so it is working well for me so far.
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sondraf and candy,
Thank you for your clarifying responses? As of right now I'm BRCA negative both inherited and somatic, but good to know about the somatic switch that can occur.
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Concerning the topic of our bone lesions, in my case I had one lesion over 7 cm on my collarbone and two cancerous lymph nodes right by that lesion. I have been considered NEAD since July 2020. I asked him at my last appointment a few months ago about my lesion. Essentially, he said that there will always be evidence that my collarbone had damage from cancer there but that it was healed up as much as it was going to be. I think of it as that there will always be something similar to a "scar" on that bone and that the XGEVA helped to heal it as much as it is going to heal. My MO does not call me cancer free. He says I am NEAD and that I can consider myself to be in remission. He has told me that I need to continue with my XGEVA, Ibrance, and Faslodex because even though there is nothing in me that shows an active cancer and it is possible that I could even be an oligmetastatic but that I could also very well have cancer fire back up (my wording...not his because I can't remember his exact wording). He has said is that as a stage 4 "the horse is out of the barn" and even though we can get to NEAD, we are not cured and need to remain on active treatment.
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I was wondering if any on here with Bone Mets ever had to have a joint replaced. Not necessarily due to the cancer. Just needed a replacement-- hip, shoulder, knee-- due to normal old age/wear and tear. I am needing a hip replacement due to arthritis. Wondering about our bone mets and the concerns that may bring up.
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Hi Candy
I had a right hip replacement (due to arthritis) in July, 2019, 3 months before my initial DX at stage 2A. Best thing I have ever done for my body. I was in pain for over 10 years prior to surgery, but kept delaying it because I wanted to be old enough not to need a revision. I had the anterior approach - no muscles are cut, just retracted - and have only a 3" scar on the front of my thigh. I ride a stationary bike for 45 minutes every morning and take 3-4 hikes several times each week, with shorter walks on other days. I live in a 4 story townhouse and can run up the stairs, although for safety's sake do not run down the stairs
. I believe cancer was already in my breast, but the lymph nodes were clear, both on MRI and pathology, so no one went looking for mets.Currently, my mets are bone only, and my last two sets of scans are stable. I am on Kisqali and Fulvestrant. Have you asked your MO how long you would need to be off treatment for surgery?
If you have any questions about the surgery, please ask. I wish you the best of luck and hope your MO can figure out a way for you to proceed.
Eleanora
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I had both knees replaced back when my stage was 2B and they thought I was cured. Now that I'm stage 4, even though my MO calls me NEAD, he is very hesitant about surgeries. I think the concern is the risk of getting the cancer fired back up from it. I don't know how big orlittle that risk is.
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Thanks eleanora and cowgal for your responses.
I was looking for anyone with current Stage 4 bone mets that had a joint replaced.
I have not talked with my MO yet. I have seen the ortho doc and she said that I need replacement--- bone-on-bone. Steroid injections did not work, PT did not help. Next step is usually replacement. I do not know how long I would need to be off both the Lynparza (white counts) and the Xgeva. And, I too, worry about spreading the cancer cells by going in there and messing around.
Anyone out there that had it done?
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Candy, is your ortho an Onco Ortho? I wonder if an OO would have a different opinion that a general ortho. Is the joint needing replacement a site of the cancer?
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No, the ortho is not an onc ortho--- just a regular ortho locally. He does hips and knees. The big question--- "is the joint needing replacement a site of the cancer". It is my RIGHT hip. The CT from diagnosis said "sclerotic lesions of T11, L1, L2, sacrum, and LEFT pelvis". I do not think it is in this hip, but..... pelvis??? Would it be in the area of where they need to attach the socket part of the replacement???? Also,,,, This CT note is from diagnosis. I have been on treatment for 5+ years. Bone mets are "quiet" now. But.... is the bone unstable/brittle/affected by the cancer??
I have a lot of questions.
I guess I need to ask my MO if we have a onc ortho for me to consult with. And, can ANYONE really say if the bone can withstand the surgery?
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This question about an oncology ortho is an interesting one to me. Are there such specialties? If so, when would someone see them? Do any of you others with bone mets see anyone outside your regular oncologist for treatment of the bone mets? A friend of mine asked me yesterday if I shouldn't be seeing an ortho, just because this has to do with my bones. I actually hadn't thought about it, then saw these recent posts. I'm very new to all of this, so always have many questions.
Supposed to see oncologist this Wed to review recent DEXA and bone biopsy, but so far no mention of a new treatment plan. I'm assuming she will discuss that then too. I'm really starting to wonder just how long is too long to wait for new treatment. They discovered all these mets in the ER in late January.
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Hello all,
My mum has secondary breast cancer with bone met in several areas. She is on Abemaciclib, letrozol, and xgeva, starting in September 2023. The treatment has been effective so far in reducing tumor markers and size of tumors. However, she has been developing a very bad taste in her mouth since she started the treatment. She does not enjoy eating anymore and refuses to eat… she has lost about 7 kg over the past few months and we are so worried that even though her cancer condition is improving she is weakened due to not eating well. I wonder if any of you have had similar experience with the treatments I mentioned above and do you have any recommendation? Thank you very much.
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Marbab-I suggest that you also post this question on the Verzenio thread. I'm on Ibrance, letrozole and Xgeva and have never had any kind of bad taste in my mouth so it might be due to the Verzenio (Abemaciclib). Does she drink a lot of water? When I started my medications, I was advised to drink 3 liters a day. I think that really helps with side effects. I haven't lost any weight on these drugs-to the contrary, I have such a good appetite that I have gained weight! Best wishes for you and your mother.
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Chicagoan- thank you very much for your quick reply. Good point about drinking water. I will remind her of that. I will also write on the Verzenio thread. Thanks again:)
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threetree, you definitely want to have the discussion about treatment, and when you can expect to begin it, with your oncologist on Wednesday. Please advocate for yourself. I’m sure you’re anxious to get the ball rolling for treatment to start, so convey that to your doctor.
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Marbab, I’ve had my sense of taste altered a couple times with different treatments. I agree with chicagoan about drinking lots of water. Even now I have a 24 oz travel mug i fill up several times a day. Also, I tried different foods than what I usually ate. More bland stuff like watermelon, cucumbers, rice, jello, Cheerios and toast as well as vanilla yogurt were doable. I kept drinks like Ensure in the fridge. I wasn’t overly crazy about them but they weren’t too bad and I at least knew I was getting some nutrition. I also like Gatorade zero when I feel a bit worn out.
I wish your mom all the best.
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Thanks Divine! I will definitely bring it up if she doesn't.
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threetree - At my initial diagnosis I had a large, painful lesion in my femur putting me in danger of it breaking. Because of that lesion, my medical oncologist referred me to an orthopedic oncologist. He inserted an intramedullary rod from hip to knee to keep it from breaking.
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rk2020 - Thanks very much for that information. I can see how an orthopedic oncologist could be very helpful. I'm so glad for you that there was something they could do. That sounds like a pretty scary situation you were in. Really hope it's not painful anymore.
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Divinemrsm- thank you very much for the tips. We wonder if her very low energy is due to not eating well/ verzenio/ low hemoglobin level or a combination of all. She wants to lay down most of the time during the day… I have seen that a lot of people are being prescribed lower dosage of verzenioafter getting better results. We are hopeful that this might be the case for my mum in near future, which can help with her food intake and weakness.
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marbab, I remember losing weight while on Verzenio. It wasn’t just the diarrhea; my red blood cell count gradually continued to drop over the course of the several months I was on it which definitely lowered my energy level. It wasn’t an easy treatment for me and it also didn’t work, so within six months I was taken off of it. My red blood cells didn’t come back up on their own and I had to get a blood transfusion. Perhaps a dosage adjustment can help your mom get her energy levels back up.
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marbab,
I developed a Vit B12 deficiency while on Verzenio and Letrozole. The elderly can also be more vulnerable to this deficiency because of changes in digestion. The symptoms can be physical, neurological, or psychological. Please look up the details. I had only psychological (crying all the time). I didn't suspect low B12 since I ate meat and my level had never been low before. I asked my Primary doctor for the test and it came back well below normal. The deficiency was corrected with a sublingual B12 supplement that I got from Amazon - not expensive and easy to take. I was told not to bother with an oral supplement. There is also an injected replacement if the level is really low. I encourage you to ask for this blood test for your mother to rule out low B12 as a possible contributor to her symptoms. I think a test for folate is often included with the B12 test as they work together.
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