Bone Mets Thread
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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!!
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Beth,
If I ever get covid (I still wear a N95 mask when out) I would follow the protocol on the FLCCC website. There are some easy measures to do at home that help reduce the viral load....like gargling with Crest Pro-Health alcohol free mouth wash several times day - the active ingredient is ceytlpyridinium. They also recommend supplements....plus more.
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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.
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thank you everyone for your covid replies I appreciate it greatlyIt sounds like most people have done okay which is wonderful to hear that I should be okay. Good to know what you took and did as well . So glad yous are all doing okay now 🥰
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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.
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Hi all, just chiming in to say that sclerotic mets are not necessarily inactive or a sign of healing. I have only ever had sclerotic mets and they have definitely been progressing. It’s the nature of my slower growing disease - the body has time to lay down new bone in response to the cancer rather than eating away the bone. However, in your case mommacamps, it sounds like there is a good chance they are inactive. Emac’s suggestion of a PET scan is a good one.
Wishing everyone good quality of life and effective treatments. I’m not posting much these days but am watching. Going through a bit of a rough patch at the moment as I wait to hear where we go next with my ever diminishing list of options. Sigh..
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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.
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EMac, thank you so much! I will be asking the NP for a PET scan on Thursday. I have not had one yet. I have had a bone scan at the start of my treatment and a couple of CTs since then but no PET. I will also ask about the CA 27- 29. Post chemo but pre surgery I had tumor markers checked but those were the CEA, CA15-3 and CA 125. Let's see what they say when I ask for the PET and new tumor marker.
As you described, the pain does not alleviate with rest, it's like nothing I do or take stops it. In fact, sometimes it's worse when I'm resting or laying down. Ugh, this is one scary, anxiety filled ride.Thank you all so much! It's nice to know there is a place where I can ask questions, vent and not feel alone. I appreciate you all so much.
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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
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Hi el_tigre,
Yes, I have had facial numbness on the right side of my jaw due to mets in the base of my skull and cervical spine. We took a watch and see approach for awhile but then about a year later I developed killer headaches so it was time to radiate. It was astonishing what a difference it made. Since then I had another lesion that ran from C7 to T3 that caused intense pain in my shoulder and numbness and tingling down my right arm. Radiation was a big help but unfortunately I’m having more trouble again although not as bad. Not sure if it’s a function of permanent damage or if I have more bone lesions on my spine. I’m waiting to see where we go next for treatment as Xeloda failed.
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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
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I was nervous about the rads to my neck and skull as the list of possible side effects was a bit daunting but I found it very tolerable. I had little pain or discomfort. The biggest issue was losing my sense of taste. It’s so crappy as I’m a “foodie” but, after about six weeks, it was back to normal. 🥳
I’ve been pretty fortunate that none of the radiation treatments have caused major symptoms. My last dance to treat the lesion in my c/t spine gave me a sore throat for a week or two but again, tolerable.
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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. Ortho said it’s very bad and he’s recommending radiation. I was told that radiation is done on the aggressiven one. Any thoughts?
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anx789, it’s sad and concerning when we hear news like this. ((Hugs)) Radiation can be used to help pain. It’s not just used for “bad” cases. I had rads to my spine. It was very scary, but it ended up not being bad at all. I hope it helps you as well
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Anx789 - I'm sorry, that kind of news is always hard to hear. I agree with Cyathea, I'm not clear what the radiologist means by "bad". Typically radiation is done for palliative pain control and I would imagine your doctor will have other treatments more specific to slowing or treating the cancer now that they know what they are dealing with.
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So Sorry Anx789- what a shock! I also had radiation to some areas and they didn't show up again.
It is so important what people say- but, important to not fracture your leg- so many more complications and misery with that-Hoping the zaps will be easy and effective-
keep us posted
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cyathea & nkb. Is radiation your first treatment on those areas?
Emac, Ortho Onc thinks it’s very aggressive because is spreads to 20 cm of bone (inside the bone). Once my main ONC receives the final pathology we can discuss treatment
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Anx789- I had 5 zaps to R hip first- all other cancer was controlled by Xeloda. About 7 months later I had several new spots on L side and they each got one zap and I was able to continue Xeloda another 8 months. actually my PET shows a continued good response in those areas, but, my TMs have gone up dramatically and I have bone marrow mets also- so we moved on to Enhertu-
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anx789, yes, I’ve only had two “zaps” to my spine. Chemo took care of the bone lesions, but my onc wanted to treat aggressively so I did radiation as well. So far, I have not had progression, so I feel very lucky. I’m hoping my bone scan next week will have good results so that maybe I can switch to annual scans instead of every 6 months
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I had a biopsy on Friday. I get results on Wednesday. I anticipate my next treatment will be IV. Radiation oncologist recommended radiation to hip, pelvis, and sacrum. I have some swelling in the area of my sternal notch and right side of my neck. I am anxious not being on any treatment right now.
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Oh, dutchiris, I'm sorry you're possibly facing IV chemo again.
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cyathea, nkb, sunshine, emac: thank you for your response, I haven't talk to myOnco yet to discuss treatment plan, we are still waiting for final pathology report.
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I just got the official diagnosis today of bone mets. Shoulder, hip, and spine with shoulder being largest spot. I am 1.5 years out of treatment and just shocked at how fast this happened. I will have some radiation, and then switch from arimidex to ibrance and letrazole. I think I will also enroll in a clinical trial. I am still processing this news, but look forward to connecting with others with a similar diagnosis. My MO was very encouraging with regard to treatments out there. Tears still coming and going, but I feel I will be okay
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Believe60 - Welcome to the thread. I'm sorry you find yourself here but I hope that you find it a welcoming and supportive place. I have learned a lot from those here. I think there are still a lot of reasons to hold hope for quality of life, especially with bone only mets. My cancer came back in around the same time frame yours did and I remain bone only to the hip and spine approaching my 3 year mark with MBC. Some here have been living with MBC much longer than that. There's probably not much I can say that will make this time feel better or easier but I hope you find support from those of us going through the same thing helpful. Hugs to you.
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Hi everyone,
I'm not new here, but new to the stage IV forums. I was diagnosed in May after 5.5 years in remission with mets to the liver and bones. My original cancer was ER+/PR+/Her2- but the cancer came back Triple Negative (although I do fall into the new category of Her2 low which gives me the option of a new drug that has some promise). This is obviously a big bummer of a diagnosis, but I'm doing ok overall. I'm currently on an IV chemo regime of gemcidabine and carboplatin. I've done four rounds of chemo over six weeks (I do two weeks on, one week off). I have bone and liver mets and the plan is to get a scan at the end of this month when I've been on treatment for 3 months.
I wanted to ask if anyone here has experience with bone pain flaring up on treatment. I have a handful of spots on my ribs that showed up on my bone scan in August. One spot was fairly painful before chemo but seems to be completely better which I'm taking as a good sign. But then I have a few other spots that seem to have gotten more painful. I'm also having trouble differentiating whether its bone pain or tendon/ligament pain - I can tap/put pressure on the ribs without it hurting, but it also seems like too much of a coincidence that I would have a ligament/tendon injury in exactly the same spot as my bone mets. Anyway, I'm not sure if its common for bone mets to hurt but not to the touch or for bone mets to improve in one spot but get worse in another. Any insight on this would be much appreciated!
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This morningwhen I got the bone Mets diagnosis, the met was Er+, Pr- like my original tumor. But I was HER2- the first time, and this time I need a FISH test for the HER2. What does this mean? Thanks.
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Hi everyone, I'm looking for advice. I also was just diagnosed with bone mets this week. All I know now is that they are in my femurs, pelvis, spine and skull. I am supposed to get more scans and the MO is hoping to get a biopsy if it shows up elsewhere to see if the breast cancer has changed. She said it is easier to get from tissue.
What advise would you give someone going to their first appointment after getting this diagnosis? I feel so lost as to what questions I should be asking and what to expect.
Thank you all!
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Believe and Fondak, we are all on the same boat right now. My Onco will refer me to radiology Onco, from there will decide the next step. I am also requesting a second opinion on treatment to see what other doctor would recommend.
Anyone had experience on getting a second opinion on pathology report? My pathology report is in, it is frustrating because there is no er/pr/her2 and grade info. No microscopic description at all. Under Microscopic Exam heading it says " see diagnosis above"; Diagnosis says "consistent with metastasis of known breast cancer."
After what I went through for this open bone biopsy, the least they can do is do a thorough report to me make feel they care.
I know second opinion will most likely not going tochange the outcome of the biopsy, I just want give them a hard time hopefully next time, they their job right.
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I’m sorry for those who have just joined. I hope you find this group to be very supportive in a say your questions.
Anx, if I’m not mistaken, the ER, PR, and Her2 come from an IHC, immunohystochemistry, report, not your biopsy report. It should be two different things. And sometimes they also do a FISH.
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This isn't for everyone, but I don't stress myself out trying to figure out what to ask or do with an upcoming appointment like that. If a question happens to pop up I'll write it down, but in general I like to go and just see what they have to say. Often my questions get answered without me needing to ask, or the ones I thought I was going to ask become unnecessary based on what the doctor says.
There's plenty of time to figure things out and usually decisions don't need to be made immediately. If you have follow up questions later, you can usually make a phone appointment or send a message through the online portal if you have one and the doctor uses it.
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