Bone Mets Thread

Hey all! I totally forgot about this forum until recently and thought maybe you all could give me some advice regarding bone mets. First let me introduce myself since this is a Mets only sub.. my name is Michelle and I'm a 34F with Inflammatory breast cancer, Er+, PR+, HER2-, which has been diagnosed as Stage IV with bone mets to my spine(previously one spot at T9). I'm BRCA2+ and I've had chemo, BMX, 13 nodes removed, radiation, on Lynparza(Olaparib) and now in menopause.

So here's my situation: I switched from a small local hospital to MSK with a team that specializes in IBC. At the first appointments they said they reviewed my scans and didn't believe the spot on my spine was mets but rather a hemangioma that caused muscle pain not bone pain. Fast forward through treatment, I continue to get back pain and hip pain. Last month, I caught covid and was sent to the ER with excruciating hip pain and high fevers and had to stop my Olaparib. I stay in the hospital for 4 days and 2 weeks after I'm due for a full hysterectomy with ovary removal so no Olaparib until after I heal from surgery a bit. While in the hospital they did a CT scan to check for a bleed and the report, that MSK reviewed said, bone sclerosis at T9, L3 and Left iliac: probable treated metastasis and now I have a fatty liver. My MO says don't worry about the sclerosis, there's no way of knowing if it is/was cancer. I don't believe that though but she is the pro so idk. For a month I was off the Olaparib and the headaches, back, and hip pain were getting so bad and persistent. Pain meds/muscle relaxers didn't really help, the headaches and pain continued getting worse by the day. I've been back on the Olaparib and while I have side effects, the headaches and pain are reducing.

Any thoughts? Did it metastasized and then get treated by the Olaparib? Is there a way to better know what's going on? A scan or test I should ask for? What would you do? I have bloodwork and a telemedicine with the oncologists NP(she usually listens) next week so I want to figure out what to ask for since no one is checking on mets.

Sorry for the long winded post! My IBC is extremely aggressive and spreads quick so I'm scared. I appreciate any feedback/advice. Thank you!!

I had covid in June and was off Lynparza for 12 days. I also took the antiviral. Honestly, I felt GREAT once the antiviral kicked in because I didn't have the usual fatigue from the Lynparza.

When I restarted Lynparza I had about two weeks of nausea and increased fatigue, like when I first started it. That tapered off after those first couple weeks.

My post covid PET CT had me at NED, so thankfully the break from meds doesn't seem to have hurt me. Praying for good news for everyone.

mommacamps - Wow, you have a lot going on. I hope your recovery is speedy and you are feeling better soon. It sounds like you had a CT (chest/abdomen/pelvis, I am assuming). What I have been told about sclerotic areas in the bone is that they are hardened areas, kind of like scars. In the case of cancer, they are likely old mets that are no longer active and your MO is right. In that case I wouldn't worry too much, they're just there but likely inactive. Have you had a PET or Bone Scan? Of the two, bone scans are probably not as helpful because they can't be specific to cancer as opposed to say arthritis or fractures. A PET scan might be of value in identifying active mets and ruling out those areas with sclerosis as being inactive. It's my own personal experience that bone pain is different than muscle pain in that bone pain remains, even at rest. Muscle pain sometimes got better with heat/ice and rest. In terms of labs I would ask about doing tumor markers (my MO does quarterly CA 27-29) and look at your calcium and alkaline phosphate levels. Specifically ask about ionized calcium. Calcium in the blood has an affinity for albumin so it will fluctuate depending on your serum protein level. An ionized calcium can correct for that fluctuation. In bone mets high CA 27-29, high serum calcium and high alkaline phosphate numbers usually correlate with higher tumor activity/burden. A basic CMP (complete metabolic profile) will have the alkaline phosphate and basic calcium values on it. The ionized calcium and CA 27-29 has to be ordered separately. I hope that is of some help to you.

Interesting discussion. My scans have been stable, and I even had an MRI of my right hip/femur which was also stable. I've still been having increasing discomfort of my right femur and hip. My upper let throbs sometimes, especially when I lay on that side. Pain in my hip is occasionally a bit sharp.

The pain in my left hip was definitely sharp before my MBC diagnosis. Has anyone else had a throbbing type of pain? MO didn't seem worried about it; I'm starting to wonder if something else is going on. Like emac said, it's not like a muscle pain.

Not to change the subject but has anyone experienced numb chin (left chin half numb) from mets or zometa infusions?

I thought it might be a mets pressing on the spine that controls the facial nerves but I had a bone scan yesterday and to my inexperienced eyes the screen results didn't show my upper spine being that messed up where the nerve might be.

I have read it could be from zometa but then a study showed it was not in a certain cases. I see my ONC this Thursday, but she tends to be 1 dimensional. I also see my dentist in a week or so.

tigre

sadiesservant - so sorry to hear about that. I hope the next line kicks it back for you. My first 2 lines of treatment failed and new this third line does not look promising. My next up is taxol to knock it back and maybe xeloda or another drug thereafter.

I was not sure if the numbness was mets or zometa since zometa has the stigma of jaw issues. Was your radiation tolerable to the head/neck area? I only have had radiation to mid spine and pelvis. I have had an ultra sound to the neck lymph nodes and the sound was crazy humming that the instrument emitted.

tigre

hello, today is not a good day. I had open bone biopsy today and unfortunately initial diagnosis is cancer involving 20 cm long of fibula. In two weeks I will know all the details and if it's a new primary or met.Ortho Onco recommended radiation. What are the different treatments available for me?