Bone Mets Thread
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@kbl thanks hope your treatment is going well
My tumor markers went up from 45 to 69
Don’t know if this is bad or I have to change treatment.
Haven’t heard from the onc
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Always good to hear I don’t even think about going to a regular doc.
Somewhat consumed with all of this
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Positive2strong
I got the diagnosis and other codes for both Xgeva and Zometa from the cancer center where I would be getting both Faslodex and bone strengthener. I called Medicare and read the codes to them and they said they would cover both. I then called my supplemental plan (Aetna) and they said that will cover whatever Medicare covers.
I have had 10 months of Xgeva shots, all covered.
Eleanora
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@positive2strong, I’m doing okay. Thank you.
When my markers go up, I give it three months because they usually are down and up. If you have had a bump for one month, maybe see what they are for three months to see if they drop back down again.
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@kbl @eleanora
Thank you
I am calling Medicare and Blue shield Monday
Also thanks about your experience with tumor markers
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Positive2strong
You're welcome.
Kbl
My MO says exactly what you posted. She will look for a trend, not a monthly up and down (unless it's a sudden huge spike)
Eleanora
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I had bone scan today - "No new lesions suspicious for osseous metastases. 2. Stable multifocal osseous metastatic disease in the axial and appendicular skeleton as described above." I'm relieved and thankful as my CT scans on Aug 9 showed progression in the liver. I've been off Xeloda since Aug 7 and will start ORSERDU (Elacestrant), an oral SERD, tomorrow. The BCO thread for ORSERDU is not very active, so I joined a private ORSERDU Facebook group. There are ~300 woman on this FB group and they report a wide range of responses to the drug for both liver lesions and bone. The median progression free time is 3.8 months. I hope to make it at least that long, and hope liver lesions shrink.
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Weninwi
Glad to hear that the bone lesions are stable. Any chance they can zap the liver lesions or freeze them? I don't have liver lesions, but have read of others having that done.
Fingers crossed that your new regimen works and you zoom right past the median PFS!
Hugs
Eleanora
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So I told someone I was in this new healthy anti cancer and everything else diet They took the bait and I went on about all the healthy things. Then when they wanted details I told them I just made the jalapeno poppers and brownies. I am not nice, really haha.
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I've been away from this site for some years attempting to leave behind my prior stage 2 breast cancer journey in 2006 age 49. I was 100% positive ER, PR, Her2 negative with 1 positive sentinel nodes. I had lumpectomy, chemo with dose dense A/C x4, Taxol x4 and radiation treatments. I briefly tried Tamoxifen but did not tolerate it well so had oopherectomy to switch to Lextrozole (Femara) - which I took for 9 years. Dx with osteopenia allowed me to get zometa infusion and then Prolia injections - stopped 4 years ago because osteopenia considered stable.
I've been fortunate to have been seen by an oncologist (2nd onc as I switched from my first onc) - who has been seeing me twice yearly and providing the zometa and prolia treatments. I've been treated the past 10 years for hypothyroid by my PCP and had a recent negative thyroid scan in February.
I just saw my onc this past week and was graduated to a yearly appointment schedule. I was so happy that I might have moved a step forward with my depression and fears of recurrence. Then the next day I received a phone call that my CEA was elevated to 7.8 - so the repeated lab was 8.1. The January CEA lab was 1.8 and CA 27/29 is normal range. All other blood labs are normal range too. Mammogram last month clear. Cologuard screen last winter was negative and prior 2 colonoscopies were negative. I had a very bad time during A/C chemo with GI issues and now have moderate/severe diverticulitis which I carefully manage.
I've had recent minor shoulder pain which I felt was muscle strain as I am physically active. Pain resolved with some ice and Advil. I am a daily dog walker weather permitting so my physical fitness and weight is good for age 66.
I have a bone scan scheduled for later this week. All my former terrors and stress has returned because I fully know how silently cancer can recur for some survivors without symptoms. I HATE this disease!! I feel like I fooled myself with my prior aggressive treatment and healthy lifestyle trying to cope with my PTSD.
Lastly, I am overseeing my mother's care in a local nursing home (5+ years) - she is age 96 and her younger brother (my uncle) who lives nearby alone age 87. Stress has been my middle name for MANY YEARS…. I was dx in 2006 when my father went into a nursing home multiple strokes - he passed age 88.
Thank you for letting me share…..
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cp418
Hope all is well take one day at a time.
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I am trying to find a way to get my xgeva shot paid for. I do not have part D Medicare I have blue shield and they said ny co pay is 25% which is 560.00 My center charges 6,000 for the shot there are some foundations I am calling tomorrow to see if 5hey will pay. I only have Medicare part A $ B and blue shield I am eligible in Oct to get part D
Anyone else hav3 5his problem
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Hi positive2strong
My Xgeva shots are covered by the part B of my Aetna supplemental plan, not by Part D. I would think blue shield is a supplement comparable to Aetna. When I was first researching it like you are, I read that Medicare is more likely to cover it if it is administered in a hospital like setting rather than a DRs office, so I chose a satellite location of my cancer institute to get the shot (along with Fulvestrant). It was that location that gave me the codes to submit to Medicare. There was an "ordering code" and a "diagnostic code". Once Medicare approves something, the supplemental plan should as well.
By comparison, Kisqali is "covered" by Part D and costs me over $10,000/year. Cannot wait until 2025 when there will be a cap on all drugs for Medicare patients of $2000/year. That's total, not per drug. Thank you Joe Biden!
Feel free to ask any questions if I can be helpful.
Eleanora
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Cp418
That's alot of stress and anxiety. Lots of similarities with my life too. Physically I usually feel quite well. Arthritis has picked up due to cancer meds. I've been told also that the depression is likely to stay as it's a result of treatments effect on estrogen, the best way to keep our cancer away. Your dog walking will help that. I'm using antidepressant that isn't working the best. I must add walking. So good to help bones, heart, head mood and more.
On a good note cancer has been stable 6 yrs (on faslodex alone for 4 yrs).
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Thanks I copied what you wrote and I will take it to my health center.
I did call Blue Shield and they said if Medicare approves it they would so I am on the line now with Medicare.
Thanks and hope you are doing well.
I haven’t taken any vitamins or vitamin D since my diagnosis. I haven’t exercised either as it is a struggle with rod surgery hip to knee. I also need to probably go to the dentist also. I guess I am thinkinking why. Will any of that help. I love to see the people that are NED and that is some hope. Just say a guy doing a charity swim and he is stage 4. Not sure I have that energy. I feel good if I make it to my events and half way look good. I still get tired if I walk too far. But all of you keep me from really falling deeper into a black hole of depression. I don’t take pain pills or anti depressants. Before I go to something I do take an ibuprofen.
I just want to travel it keeps my mind off all of this but my husband is so engrained in his business and just doesn’t get it all what is going on.
love to all making calls to get this xgeva paid for brings me to face this reality and crappy cancer3 -
It is so good you are 6 years on Faslodex
I also get that injection since 2021.
I didn’t understand the 4 yrs so are you 10 years?
knowing people are surviving helps me get through the day.I go from thinkinking I need to get rid of all my things and also get all my arraignments done to doing nothing
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Positive to strong.
It's me, Gailmary that is 6 yrs on faslodex.
It's 4 yrs of just faslodex. No ibrance or other targeted therapy.
From diagnosis 6 yrs ago MO put me on faslodex with letrezole with ibrance with xgeva. But I dropped all the other except faslodex the last 4 yrs. He thinks I could go another 6. Estrogen receptor positive 95%. and grade 1. I think both are important factors.
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positive2strong, are you eligible for the copay assistance program for xgeva?
All, you may recall that two months ago I had some new activity near my old met site. Well, I just had another PET and the numbers have gone down, so hopefully the ortho onc is right that the uptake is due to arthritis arising from radiation. The problem is that there was a new site with an SUV of 16.1! There is nothing on the CT, but that's a worrying number for the PET. The radiologist who read the report was not concerned and assumed it was just the ovary (it's near my uterus). NEWSFLASH! I haven't had ovaries since 2018! Anyway, this was Friday afternoon, so I have not heard back from doctors. I'm not sure if the holiday will mean I won't hear till Tuesday. Does anyone know if a pap smear can cause irritation that may light up on a PET? I had a pap smear three weeks before my PET. No idea if the anatomy even makes sense, but I am so worried about what caused this uptake.
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@kbl and others
Got a call today from onc wants me to get my scans it has been a year plus my try stage test is 1 it was at 0
And tumor markers went up. From 45 to 69 now 66
So I’m needing all of yo that have gone thru this for help and support.
in June I missed my Faslodex injection because I was out of state because my husband slipped and fell and had a hip replacement I asked my onc to refer me to an onc but she said she didn’t have license I’m Mi also was off my Ibrance for 10 daysI asked her if this could affect my numbers
Yes I am having more soreness in my neck where I have a met
I am just over 2 years on Falodex I am dreading my scans and also being neurotic about medicine not working
Someone just talk to me can feel depression
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@positive2strong Hi sweet lady. I'm here and hear your fear. I have read that faslodex stays in the system for more then an month. If I recall after a year, most MO's drop the med to once every 3 months because of that. Off Ibrance 10 days shouldn't make a difference. I was off for an ongoing UTI, and I still had a good pet scan. I'll be honest with you my MO does not do cancer markers. I'm actually glad as I'm sure I'd worry. Please keep believing your tests will be good. Here to support you and sending you lots of hugs.
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@irishlove
Thanks, You are just newly DX with mbc
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@positive2strong, I also hear the fear in your voice. I’m really sorry. I was off Faslodex for an extra month in March because I did a scan in a clinical trial, and it didn’t cause any issues. It does stay in your body for a while. I’m also off it this month because I’m taking a treatment break. My tumor markers have not dropped below 100. I usually take the tumor markers in three-month chunks. If they go up three months in a row, it’s time for a change. I may change treatment now because I’ve been having issues since March where something is going on that they can’t find the cause. I feel very off kilter and my eyes feel weird. I don’t think it has to do with the cancer because brain MRIs are clear.
I was off Ibrance multiple times for an extra week because of my ANC.
I hope this makes you feel like it’s okay to be off a little longer.
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Has anyone on this thread experienced anything like spinal stenosis, due to their bone mets, spinal tumors, fractures, etc? If so, what were your symptoms and how did it get treated?
I've been having limb (all 4) tingling and muscle weakness off and on for months and have been concerned that it could be my spine, but all dr's consulted seemed to think not. I also thought it might be peripheral neuropathy from faslodex/Verzenio. Recently went to urgent care and ER for same symptoms and they thought low electrolytes initially and gave me sodium IV. Symptoms did not go away, so returned to ER and told them again that I thought it might be my spine. They did MRI in ER and got concerned and referred me to spinal neurosurgeon who I will see next Monday. Now this morning I woke up to a request from my PCP that I get more MRI imaging fairly soon (cervical and lumbar spine with and without contrast). The spine surgeon visit had been scheduled for the 25th, but now after viewing the scans, the surgeon moved my appt up to next Monday the 18th. They all seem to be getting concerned about my spine now and it's scaring the daylights out of me. Terrified of things like paralysis and loss of bladder and bowel control, etc. Can't do much of anything but wait and be anxious.
I was diagnosed stage 4 in January with mets to ribs, spine, and sternum. Subsequent scans all showed continuing spread, and vertebral fractures. I didn't start Faslodex/Verzenio until late April and May. Scans done in July showed a lot of improvement, but onc wanted to stop Faslodex/Verzenio and move to IV chemo due to two new looking spots. I protested as I had read that it can take 3-6 months sometimes to see benefit from the drug combo. She said 2 months was enough but reluctantly agreed to another month. Just had new scan in early Sept and that bone scan says I'm now stable, so I am super glad I advocated for myself and stayed on the drugs longer. Onc is now on maternity leave so I am dealing with other staff at this time. Even though scan looks much better and shows stability with bone mets, I seem to be having more tingling and weakness, etc.
Has anyone else had any experience with anything like this with their bone mets? Any thoughts or suggestions? I would really appreciate any feedback that anyone could offer. Thanks much. (Also, typing like this, or doing anything repetitive with my hands/arms really sets this off (back pain, tingles, and more) so I've had to type this very slowly while taking breaks.
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Hi @threetree my mets are spine, shoulder, hip and a rib, dx last summer following dislocation of my shoulder in an accident with a tin of tomatoes some months earlier (pathological fracture of the coracoid). I’m so sorry that you’re so worried and I do understand. This is not the same thing but over the last 18 months I sometimes have spells of 3-4 minutes in which I lose all control of my hands and arms - dropping keys, for instance, and being unable to pick them up because of the sort of flapping motion that sets in, sometimes with some dizziness as a side order. When I raised this with the oncologist, they sent me for a brain scan but, ho ho, found nothing there. There wasn’t any suggestion that it could be directly related to the spine mets. On holiday last week, my thigh bones were burning, which I will mention when I see them this week, but I suspect that had more to do with walking further and longer than usual. Hope you get some decent feedback and reassurance soon.
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Emiliamarty - Thanks so much for the helpful comments. I know what you mean about this not being the same, but I think it is related. They did a brain MRI on me too and it was fine. The spinal MRI showed things, but nothing that was an immediate threat, apparently, although now they are calling this "urgent" as opposed to an emergency. I've also read on here where many often feel terrible and have concerning symptoms, they go to the ER, and then their labs and scans don't show anything real bad or acute. Some of them have wondered if this situation isn't due to drug side effects, and I wonder that too sometimes. Just the sort of thing you were wondering about with your thigh bones, etc. Also glad that your brain MRI was good and that what you are experiencing doesn't seem to be real bad or serious. It's just so frustrating for all of us in theses bone met situations; well cancer altogether.
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threetree - I had spinal stenosis at L5 due to a blown disk 3 years before diagnosis. There is supposedly a chunk of disk wedged in the canal yet, but all its ever done has caused my left big toe to lose feeling/be number if I hit it. I have noticed, however, the same sort of burning thighs and more neuropathy on the sides of my shin on that side. There is a little action at L3/L4 but not enough to cause this.
I truly think it just comes down to a lot of side effects - for all the drugs we take, Im sure things interact here and there but not in a measurable way.
All I can say is that if you have saddle numbness - like where you would sit on a saddle, that is ER visit ASAP. Cauda Equina isn't super common but just something to be aware of.
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I dont know where else to put this, but has anyone heard of or had muscle mets? I had my rads initial chat today regarding my hip and we are holding another 4 weeks to wait for more information, mostly as my last MRI was showing predominately muscle inflammation and I can't actually point (like I could with my sacral met) where the pain is. I did some reading (aka googling) and it looks pretty rare for MBC and mostly shows up in the eye muscle, but there was one paper of a woman with muscle mets in the areas where Im having issues. No one has said that specifically is the case, but I was just wondering.
Its a pain to spend another 4 weeks (at least!) on this hip but I (and the docs) want to be sure what is actually going on and not shoot rads into me willy nilly.
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@threetree I had spinal cord compression from the spinal tumor at T6 thoracic spine. I had corpectomy and fusion. I had been having a back ache, muscle cramps and very constipated. I never had loss of bowel control. Them one day I was sitting at work, tilted my chin trying to stretch my neck and felt zaps down both legs and they started going numb, also felt like a cramp belt around my diaphragm area. It's good they are doing some scans on you before anything like that happens.
@sondraf I haven't heard of muscle mets but I get nerve pain and muscle cramps all the time from the spinal cord damage. I also have sore hip and knee and have discovered it is irritated IT band, weak muscles so I have been doing stretches and therapy. Sometimes it's not the cancer!
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Sondraf - Thanks very much for your thoughts. Well, it sounds like you had stenosis, but that it was taken care of, and you didn't wind up paralyzed, thank goodness. My fractures are at T2 and T8. I think something like T9 might have also fractured though, because of the instability due to T8 being fractured. Some real chain reaction stuff that goes on with this, apparently. T2 fractured after they did the bone biopsy there. I also have a sternum fracture. I will watch for the cauda equina thing, as I have read about it too. Just so frustrating to not be able to sort the drug side effects from the serious stuff (although side effects can be serious in their own right).
Sondraf - Also, I have never heard of muscle mets. You might want to make a separate thread for that. Who knows? There may be others on here who've had it or know something about it. I sure hope yours isn't serious, and that maybe that's not what it is anyway.
Mkestrel - Wow, those zaps down your legs must have been something! Yes, I'm glad I haven't had anything like that, and hope they catch whatever this is before things get any worse. Even with your compression you did not wind up with paralysis or loss of control, so that's definitely encouraging. I did see where fusion is one option sometimes, depending on just what this turns out to be. Looks like they do cementing between vertebrae too sometimes. I just hope there is something they can do that isn't too invasive or dangerous. The ER dr. wasn't sure just what they can do, if anything, in a metastatic situation.
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Hi everyone, how do you know your treatment failed? I’m on Faslodex and Kisqali 400 mg, Petscan from last week shows new lesion and progression on bones only. Lung nodules were stable, other soft tissue organ are clear. MO wants to change treatment. What are my options right now? I am scared to change treatment.
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