Bone Mets Thread
Comments
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I had to take a lot of opioids when I first had 3 collapsed vertebrae and ther numerous bone mets, two years ago. I took them for about 3 months and by the end I couldn't wait to quit them! Headache, itching, nausea...and they didn't even work that well for me. It seem like paracetamolo worked better for my bone pain!
And...me too I was afraid to get addicted, but really wasn't the case, actually the exact opposite.
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@malleemiss251 I am in a similar situation. I had a hip problem for a long time and then started doing reformer pilates a couple of years ago. My skeleton has never felt better except . . .I have cancer! I admit I do have some aches and pains from time to time, but since I'm in my 60s, it feels like aging rather than a deadly disease. I'll probably embrace opioids when the time has come (I did enjoy the fentanyl they gave me during my bone biopsy), but not yet, Satan, not yet.
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I took Tramadol, which is considered a "milder" opiate (classified as Schedule 4, vs oxycontin as Schedule 2) for months due to vertebral fracture pain. It was the only thing that helped, tylenol/aleve/ibuprofen did nothing. I was able to stop taking it only after spinal surgery helped to correct the fracture.
I tapered off in about two weeks, and the only withdrawal symptom experienced was one sleepless night (and I have insomnia sometimes anyway, so who knows if that was from the med). I also never felt "high" from the medication, it significantly reduced my pain and I'm so grateful it was available during that time! Would definitely take it again.
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Update on Bone Scan after Enhertu infusion #5. Previous bone scan was Nov 2023.
My Bone Scan showed mixed results. Not sure if Enhertu is working or starting to fail. Anyone else get mixed results on bone lesions, whatever your treatment? Did your oncologist order another test like MRI or Pet scan to try to confirm results?
My scan reads: "Whole-body bone scintigraphy demonstrates no definite evidence of new sites of abnormal radiotracer uptake"...."However, there are several sites of interval increased extent and level of radiotracer uptake suspicious for worsening osseous metastatic disease involving T6, L1, L4 and left pubic bone".
I asked my oncologist to either call me or comment on My Chart with her opinion of the results. She has told me in the past that she can read bone scan results as well as the radiologist. Her response to me was to "wait until next Enhertu infusion next week (June 11) when I see the PA and can discuss the results then". I'm not happy with this response.
If my bone scan had been "Stable" throughout, I had intended to stop Zometa, which I've been on for the past 4 years. At first, given my oncologist's response, I didn't know what to do about the Zometa, but have now decided to cancel the Zometa dose until my next appt with the oncologist in 6 weeks and we can talk about it further.
Update: My oncologist did finally respond via MyChart with her opinion of the bone scan. Fuller discussion at next infusion.
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Wendy - I totally understand your not being happy with her response. I wouldn't be either. At the same time, do you think maybe she's really not all that concerned about it and that she's putting it off like that because she doesn't believe it's all that worrisome? Just a thought.
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Hi , everyone. I got back from vacation. The flight was very long and my back was killing me, but on the top of this I had stomach flue…..Next day I got 2 Faslodex shots, and I have 2 times more in interval of two weeks. I have update from my bone and blood biopsy. I am still Er positive, Pr negative and Her2 negative/low. I don’t have the mutations that can determine on other medication, but some other, not well known. My doctor didn’t say, good or bad and I’ll be praying to be good. I know that Faslodex by itself is not so much effective …. I wish she could add Ibrance….
I am behind with reading the posts , but can do it tonight. Hugs. Elena
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Hi ladies. It’s me again. I was wandering if the spot for bone biopsy matters. They didn’t take samples from a new spot, but the older, larger spot. Probably the one that is easier and less risky. Is it possible for more than 6 years bone Mets not to have mutations? Actually, I have, but not well known.
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blue shine,
I’m not sure I understand your question regarding bone mets and mutations. Are you asking about a genetic mutation? That would apply to your breast cancer overall and not to metastasis. For instance, BRCA 1 is a genetic mutation that increases one’s risk for developing bc.
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Blueshine - Re the bone biopsy, I was told that the radiologists pick the spot they think they can get the best sample from. Hope this helps.
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@exbrnxgrl - blueshine might be referring to an ESR1 mutation that is caused from being on aromatase inhibitors. It is diagnosed by a blood biopsy and can even be discovered after you have been off the inhibitors for a period of time.
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going to…,
Thank you for that clarification. I admit that after 13 years at stage IV, with no progression, I am falling woefully behind on many things that have changed or been discovered since my de novo dx.
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exbrnxgrl- from what I understand, some mutations we are born with , germline mutations , like brca . There are also acquired mutations called somatic mutations . Brca can be either ! The somatic mutations are the cancer cells learning to work around cancer treatment. ESR1 and pik3ca are examples of somatic mutations I have learned about on here.
This is why it's important to have a new biopsy if possible when we have a progression .
I have learned so much from these discussion boards - I had no idea about somatic mutations until a few years ago .1 -
My oncologist told me that bones, in general, don't come out with the most accurate results, for the way bones are made…
If you don't have another spot to biopsy, you can ask if it can be useful to add a liquid biopsy maybe, especially if the metastasis they sampled whas there since the beginning...
ESR1 and Pi3ca can be seen on liquid biopsy as well.
(A while ago they made me a bone biopsy at the hospital, than I went to another hospital to ask a second opinion, and they immediately made the liquid biopsy for this reason, because bone biopsy don't always come out right...but still I have no mutations at all, and they told me it is weird!)
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Aprilgirl and exbrnxgrl- I have the somatic BRCA mutation. My germline test was negative, but the biopsy of the liver tumor showed BRCA. That enabled me to be on Lynparza to target that BRCA mutation. I have been stable for almost 3 years on Lynparza.
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Hi Ladies. Thank you for the responds. I am still learning and my questions are not always clear 😀 Yes, Going2beatthis is right. The bone and blood biopsy showed I am still Er strong positive, Her2 low, but I don’t have ESR 1 or Pi3ca mutations or Braca. I was wandering if they took sample from the new spot, instead from the one that was from the beginning of my bone Mets, the results would be different. Just thinking,,, but not enough knowledge …. Only God know what is the right treatment, if any..
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Hi ladies . I have Mets in my spine and now I’m in a lot of back pain. Since Friday I can’t even walk. Do you think radiation gonna ease this pain?? Thanks for your answers
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fighter00-I am sorry you are in so much pain. For many of us, radiation has been very helpful in easing pain and allowing us to regain mobility. Do you have radiation scheduled? If not, call your oncologist tomorrow morning and let them know how severe things are right now.
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Hi @fighter00,
Radiation has been helpful for many experiencing bone mets. We have an article that discusses radiation for folks with MBC if you're curious:
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Hi everyone.
@fighter00 I was the same way for a week or so, and could not move. Walking and even getting out of bed was so painful on my ribs and spine I wanted to call my oncologist but I figured I was going to see him for a follow-up for my Fasoldex and Xgeva. Injections. I had gotten my scans back just prior to all the pain, which were stable, unremarkable, not too worried about progression. I saw the PA last Thursday and she said the Fasoldex and Xgeva will cause the bone pain along with all the other SE’s. I also have a lot of pain in my cervicle neck vertebrae from cervical stenosis no mets. My neurologist has been treating me for pain management injections every 6 months. I’m going for one Friday. He wants me to consider radiograph ablation the next time so I’ll discuss it with him when. I see him Friday.🩵
@weninwi ,I’m sorry your scan not the usual results and I don't blame you for worrying if your treatments are starting to fail. It makes me crazy if the Bone scan radiologist describes Uptake etc in their wording. My original scans describing all the uptake and cm , mm, sizes were all clear to me but it seems the radiologist impressions lately are so hard to read,, and interpret until I see stable unremarkable and organs are all normal, in CT. So far I would not want to consider canceling a treatment if. Everything has been stable for so many years. My onc says “if it ain’t broke why fix it” As much as I hate the SE’s I would be afraid to stop a treatment or reduce dosage.. I hope you get answers when you see your oncologist.🩵
@blueshine being diagnosed with Mets and having to learn so many things all over again is overwhelming. I notice on MY Chart the liquid biopsy terms that I am Just not sure and confused about like Pic3a mutation… Ugh ! Originally when I was first diagnosed in 2009 it’s stage IIIA I was ER + 99% PR+ 99% Her2- But now since Mets showed up in 2023 after being NED all those years, I son’s know if it’s the same as it was, bothe being 99% positive….hang in there girl we are all just wading thru this Mets mess we’re living in each day.🥹
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Does anyone have experience with pain below the knee and above the ankle ? It feels like pain in the long bone there, could also be pain radiating from my knee as I have slightly bad knees. I had my PET scan in February which was NEAD but needless to say any new pain is a concern. Hopefully it goes away soon.
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@malebreastc I think you’re talking in the front of the leg, the shin, but just in case, could it be calf pain? Is it warm to the touch? If so, I wouldn’t mess around, as it could be a blood clot. If that’s not the pain you feel, I wanted to let you know I have not had that pain.
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@malebreastc I have pain in my lower leg, especially around my ankle joint and the tendon in my lower leg. I think it might be from the meds, but my MO says that is not the cause.
Regarding your PET scan, I have been told that they do not include your knees or lower leg or your entire head. The only time my PETs have included those areas is when the onc has specified to go vertex to feet.
Hope you have informed your mo of your recent pain.
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@malebreastc yes i do get bone pain in my knees and ankles. My recent scan said there was a lot uptake where my knee replacements are but not progression according to the way it was worded by the radiologist. My ankles are sometimes mentioned on scans as normal degenerative issues, again I’m not wording it the way they do. If you continue with the pain, mention it to your oncologist.
With me so much of my bone pain is related to medication side effects and especially weather barometric changes. A few weeks ago I had servers pain and I was not even able to walk..coincidentally during the geomagnetic sun storm which caused those beautiful aurora lights across the night sky..
my onc does scans every 4 months to see if the treatment meds doing their job. 😊
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Thank you all for your responses, I will get checked and update
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Hi friends
Sorry, does any of you knows a good private health Insurance in US??? My employer’s insurance doesn’t good enough, any drug my onc order they denied it. Please help me if you have an idea. Thank you
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sunshine99/Sorry for the late response. I am on Verzenio 100 2x a day and flasodex. Thank you so much for your response.
Dulcea/ Thank you for your response
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Hi Ladies just a quick update: I have been depressed and have not been on the boards lately. I have PET scan Monday. Also i have a hard time navigating the boards on my phone. If I learn how to do it better instead of going on my laptop maybe I can be on more. I always feel better when I am here. I hope you are all doing well I will let you all know how it goes, and back with more questions lol….
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@fighter00 I’m sorry, other than the Marketplace, I don’t know of anything. I do know some insurance companies insure outside of the Marketplace, but you’d have to call.
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Still on recovery room since Friday for spinal cord decompression(T10-t12). I don’t know how it happened quickly I just had some serious back pain irradiated on my lower abdomen. Can’t pee, can’t poo, can’t walk. I don’t know how will be my quality of life after that, I’m depressed I need some good report to go ahead. Thanks
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