Bone Mets Thread
Comments
-
Stilllivin — doing anything for 23 years is an accomplishment; living with MBC for that long is exceptional. I have bone mets but none in skull. Family friend does with his prostate cancer. He didn't know he'd metastasized. One day he began exhibiting stroke symptoms — altered speech and behavior, headache. The mets had grown so large they were pressing on his brain. He hadn't been to a doctor in more than ten years. Surgery to remove the skull tumors and he was good as gold. No permanent brain damage. That was two years ago this summer. He takes a hormone therapy drug daily and is doing great. Best wishes as you learn about this new phase of living with cancer.
🌈
j
0 -
Cross post....
So I just signed off from my virtual MO visit. I wanted to post here how it went. Lasted about 10 minutes. MO said my scan "looks good" and no change in treatment. I told her I had not seen results yet and could she click for it to flow to patient portal. She said to give her till end of day to finish her in-box stuff. So I don't know specifics (size of liver met this time, etc). I will be looking for results so I can read them for myself- I read every word of the results and pick it to death, you all know what I mean. We discussed my upcoming dental appt and if I could have a cleaning. Yes to cleaning, but anything else would need to be off Xgeva for a period of time. No antibiotics before cleaning--doing on week off Ibrance. She did not say when I will "see" her next. So I need to verify next appt. I go to office this afternoon for blood draw, Lupron, and Port Flush.
0 -
Great news, Candy!!!
0 -
I've been having off/on SI joint pain. Can't stand up sometimes, then at times I'm ok. Did I read somewhere that tylenol was better than NSAIDs when taking Kisqali/Verzenio/Ibrance with Xgeva & Faslodex?
0 -
Hi everyone
So just got off phone w my oncologist. He says tiny bit of growth in cpl tumours BUT since I'm on immunotherapy too, he says that can be normal at first and he says in 3 more mos he feels we will see the opposite. Has anyone else been told this and sure enough, the marks shrunk on the second scan? Thanks in advance.
0 -
Sadie and Candy...great news!!!
dlittkemann...I'd say you got pretty good news today too! That's great!
I'm very happy for you all.
0 -
Sandiservsnt, Joyner and all who responded. Thanks for your input. I have a development on the ventral left frontal lobe. A few punctate foci of T2 prolongation. I had a neurology appt. Friday and was told to go to the hospital. He feared leptomenigeal metastasis. Saturday had several different MRIs and a spinal tap. Ruled out stroke and blood clots. Came home Sunday. My MO called Sunday night and said not Lepto. Lots of hugging and crying after hearing from him. Still don’t know why the tongue atrophy , slurred speech. Anxiety??? I see MO tomorrow. I start Piqray tonight.
Also, I’m not 23 years MBCer. ( I hope I’ll be! ) 15 years BC stage 2 and rest stage 4. My kids were 6 and 8. Now almost 30 and almost 32. I’ve been very lucky for sure. A new grandson 5 months ago. I want more though. Is that being too greedy?
Thank you for all your support. I read lots but don’t share much. You are all better people than me. I don’t articulate my feelings week. I wish everyone the best and years and years more of memories. ❤️
Suzy.
0 -
Great news Candy. Stilivin you are not greedy unless we all are. So glad for you too.
0 -
Question for those of you who know specifically where your bone mets are -- where do you get that info from? From a nuclear bone scan? Or from a CT scan? If you have diffuse mets, do you see any more specifics on your reports?
I ask because when diagnosed in 2019 with mets, none of my tests named specific areas of bone mets. However, in my first CT after starting Ibrance/Faslodex, the radiologist started talking about diffuse sclerotic lesions, but didn't name exactly where. I would like to know some specific spots, if those are identifiable, in order to investigate local treatments.
Also, is everyone on some kind of a bone strengthener in addition to your other meds? I've not been put on one. I haven't had a Dexascan now for two full years (no issues before that with bone and all prior dexas came back great) but when I asked my MO about getting one now, she just sort of shrug her shoulder, and then suggested I work through my primary care physician about arranging that. I thought that was weird.
Thanks!
0 -
BevJen- My baseline PET at diagnosis showed osseous bone met at C2-- that is how it was worded. My CT said "sclerotic lesions at T11, L1,L2, S1. I would think the radiologists should/can document exactly where they are seeing your mets. I am on Xgeva bone strengthener. My MO started this at the beginning with the baseline PET showing bone metastasis. I had a Dexascan with the diagnosis of the cancer and before starting the Xgeva. The MO ordered this. But my PCP had to be the one to order another Dexascan a couple of years later---because I asked for it to be rechecked.
0 -
BevJen - I was diagnosed in September 2019. They did a CT scan that showed the mass and it said on the report where it was located. They used that CT to do a CT guided biopsy to confirm it was cancer. The PET scan that I had following chemo also told where the mass was located. Do you have access to a Patient Portal so that you can read where they are located. For some reason, my scans themselves do not show up in the Patient Portal.
I thought that everyone with cancer that had spread to the bone was put on a bone strengthener. I asked my MO when I started XGEVA if I would need a dexascan and he said no because I was on a bone strengthener.
0 -
Thanks, Candy and Cowgal,
I have not had osseous bone mets identified at all. The only thing they see is sclerotic lesions. I read my reports like a hawk, both on my patient portal and I usually also pick up a copy of the report even before it shows up on the patient portal.
This whole bone mets thing with me has been weird. When I had a consult last week via Telehealth with Dr. Cristofanilli at Northwestern, his comment was that I may have had bone marrow mets prior to starting Ibrance/Faslodex and the sclerotic lesions that have shown up since that start may be a manifestation of the healing of the bone marrow mets. My MO has not offered such an opinion -- and my last nuclear bone scan prior to switching to Hopkins said "no osseous mets" and did not refer to even sclerotic lesions. So Dr. C may be on to something -- who knows?
Anyway, the info about bone strengtheners is interesting. Not that I want to add any more meds to my life (this is a personal thing because my mother took some ridiculous number of pills from 65 on) but if I should be on something, I want to raise it with my doc.
0 -
Hi BevJen,
I have had various bone mets identified in various CT scan reports. It's a bit hit and miss.. depends on the radiologist what they comment on. Bone scans are somewhat useless in my case - they lesions don't show up but CT scans show extensive sclerotic mets. They've mentioned the entire spine, hips, sternum, scapula, ribs, and even the base of my skull. Additional detail was provided when I had scans of specific areas prior to receiving radiation treatment to deal with pain. I am not clear why you are looking at local treatment? Do you have pain somewhere?
With regards to your question about bone strengthener, I am not currently on one. We hit pause as I was having some issues with elevated creatinine as a result of the Verzenio I'm on. The bisphosphonate I was getting can be hard on the kidneys so my MO decided we would stop for awhile (the drug stays in your system for a long time). My MO did not put me on the bone strengthener until about 9 months after my stage IV diagnosis, after the bone mets became very widespread. There are impacts and risks with those drugs (particularly necrosis of the jaw) so they don't like to use them unless there is a clear need.
I have not had a bone density test for years - I had one prior to going on hormone treatment as an adjuvant therapy as AIs are known to cause some bone loss. The point is moot however once you are diagnosed with stage IV as your bones can be weakened by the cancer if you don't receive the hormone therapies so I'm not surprised that your MO is not concerned about running the test at this point.
I wanted to comment on your note that you don't have osseous mets. There continues to be a lot of confusion about this. There are two kinds of bone mets, sclerotic and lytic. Lytic eats into the bone (which is more worrisome from a bone strength perspective) and sclerotic mets are bone growth - the body responds to the cancer by laying down more bone. Both are cancerous and sclerotic mets can also lead to areas of weakness. I believe it is associated with the aggressiveness of the cancer. Slower growing cancer lends itself to sclerotic mets as the body has time to mount a defense. It can however make it tricky for the oncologist to know what is going on as, sclerotic areas can be a result of healing of the bone. In my case, my oncologist did not immediately react when the CT scan showed progression in the bone. The thought was that it could be healing from the Ibrance/Arimidex combo working. However, when the next scan came back showing extensive sclerotic lesions, in addition to some thickening around the capsule of my liver, it was clear that this was progression and not healing. Time to switch to another treatment... And as I indicated above, the type of scan can play a role. I haven't had a PET but suspect it would also underestimate the burden of my disease as my cancer is slow growing... likely won't light up on a PET. So CT or MRI are the gold standards for me!
Sorry to be so long winded. Hope this is helpful.
0 -
Thanks Sadiesservant for that clarification on bone mets bc I thought they were either sclerotic or lytic, but all considered osseous meaning bone.
BevJen, mine were sclerotic and found on PET during initial dx and continue showing stable on CT and nuclear bone scans. I started on Zometa for two yrs then MO moved me to Xgeva which I've been on for two yrs. I had a dexascan before Zometa then one my MO ordered two yrs later at my request. She doesn't seem to think I need another one when I asked a few months back saying "that's what the Xgeva's for."
0 -
Hi BevJen
PET/CT reports always identify the specific areas of my “diffuse, sclerotic" lesions. I agree with Candy that the radiologist should provide a more detailed report with the location of your mets. How can you compare progression between scans without more specifics? Can you request a formal read of your previous imaging from the Northwestern radiologists?
I've not had a dexascan but do get monthly Xgeva since diagnosis.
0 -
Leigh88,
Thanks for the info about specific areas and the PET scan. My MO insists that my insurance (Medicare + Medicare supplement) will not pay for a PET. She's wrong bc I've already had them while on Medicare, but she seems opposed to them for some reason. I am currently pushing her about this, as my consulting doc at Northwestern said I should have one and, as you probably know, some believe that they demonstrate lobular mets more clearly. I didn't know about them showing more specificity in sclerotic bone mets.
Sadiesservant,
The reason that I would like to pinpoint my bone mets more directly is that I am a believer in local treatment as well as systemic treatment. If there were some specific areas that I could have radiated, I would push for that in order to lower my overall tumor load. I used local treatment (microwave ablation) on my liver, and it zapped the hell out of my largest met and seemed to help with keeping my liver mets stable over the last year. Thus, if I could find out if there was one area, or a couple, that could possibly be radiated, I might try to do that, although I am generally not in pain without exertion. Thanks for your explanation of sclerotic mets. My doc always refers to them as "healing" mets. Maybe she is simply sugarcoating it, I don't know. Also, the wording about "osseous mets" came straight from a scan I had in May of 2019 -- that was radiologist speak at the time when we were looking for sites of mets since my tumor markers were rising but no source was found. At around the same time, my liver mets were found, but no evidence of bone mets. Bone mets started appearing as sclerotic areas starting in October 2019. My MO and consulting MO both say that these were areas of healing; consulting MO says those were possibly demonstrations of healing bone marrow mets. Who the heck knows???
0 -
Hi bevjen
Since you are interested in local treatment, I wonder if you have a local radiation oncologist you work with. My RO often orders my PET scans and then reviews if local treatment can be helpful to me. Just a thought. Good luck to you. It's so odd how different treatment is I don't have lobular cancer, but I have liver mets and extensive bone mets and my MO and RO now schedule me for PET scans every 3months.
I do hope your treatment goes well.
Peace
Mary
0 -
Thanks, Mary, for the suggestion. I am so far out from my original diagnosis and treatment (2003/2004) that I no longer see my RO. However, I did call her last summer and she gave me the name of a doc at Hopkins (where I am treated) who might be helpful in this instance, so I think I'll look him up. Thanks for the reminder.
Yes, I am always amazed at how different treatment can be from place to place (even within the US). I understand when folks in other countries, with different health care systems, have differing treatments because not all health care systems are alike. But when it comes to the US, I'm not quite sure why we hear this. I think it has to do with the individual oncologists and what they are willing to try/not try.
0 -
sadiesservant- awesome news on the scan! Love hearing good news. Breathe that in and don’t look over your shoulder too much. God bless
0 -
candy-678 - good news is worth celebrating immediately!!!!! You can pick that report apart later. I know what you mean as we all do it 😊. Enjoy the word “good” - for us good is awesome
0 -
Question for those with bone mets:
I will try to make my long story a bit shorter to get to my question.
In February while hospitalized due to severe side effects of rads to my hips, I started having left arm/shoulder pain. It was a new pain. I told everyone about the pain due to how sudden it started and how it left me unable to really use my left arm/hand (I am left handed so it was a true inconvenience).
The week after being released from the hospital, I was scheduled for my first CT scans/bone scan and MO asked to have that area looked at. Scans showed mets in my clavicle and arm same places where the pain was.
RO said he could zap it, if I wanted. But I had just started Ibrance (dx’d MBC in Dec 2019. Had rads to spine and hips first, then started Ibrance). I asked RO if I could give Ibrance a chance to go after those spots? He agreed. MO also agreed.
I took pain meds to lessen the shoulder pain and I used my left arm, hoping to make it stronger. By March, the arm pain had really improved. I had full use of left hand and pretty good ROM. In May it started to be noticeable sore again. I mentioned it to MO. I had my next set of scans in mid May. I was surprised to read that scans showed a healing collarbone fracture.
I realize bone mets can lead to fractures. That’s why I see an orthopedic surgeon who checks my hips to make sure I am not in danger of a fracture.
I saw my MO this week and that fracture note just seemed like not a big deal.
Now for my question: do other bone metsters have a laundry list of broken bones from mets? Right now I have a compression fracture of T12 (not cancer related) and the fractured collarbone
TIA for sharing your thoughts or ex
0 -
Bev-
It's a crock about Medicare not paying for PET scans. I have had one every three months like clockwork for the past 18 mo or so. Medicare (or the supplement?) pays. I probably glow in the dark.
Dodger, I had a rib fracture noted at first diagnosis of Stage IV, but no one ever mentioned whether it had anything to do with the bone mets or just something I did some years ago from coughing too hard. Or from stupidly using my ribcage as a fulcrum (right word?) for loppers while pruning too large a branch off of a mountain laurel.....:)
0 -
Thanks, Lynn. I told her in an email that I had had them prior to starting up with her and that there was no problem getting it covered. So we'll see. I'm gonna push back on this because I think the PETs are better for lobular anyway. And the consulting doc said that he'd like to see those results.
0 -
BevJen- Did you have bone scan & MRI today? I had that down on my notes.
0 -
Hi, Candy,
I did have an MRI of my abdomen/liver and a nuclear bone scan (first in a year) yesterday. These followed a CT with contrast last week.
My MO is very into ASCO, and this is the ASCO weekend (this year virtually, of course). So I shot her a note and told her I knew she wouldn't have time to talk until next week, but could she please at least release the scan reports from yesterday to me. Be careful what you wish for, I guess. The MRI was fine -- the liver is basically unchanged, so the combo of the local microwave ablation last July plus the Ibrance/Faslodex must be working on the liver. The nuclear bone scan wasn't such a great story, in comparison to the same test a year ago (where the report said that I had widespread arthritis in my body). NOW they see the bone mets, and they are all over the damn place, including at the base of my skull, my right clavicle, some of my ribs, and along my spine. They are described as 'sclerotic mets' and the bone scan report says that they are "better appreciated" on last week's CT scan (which did not have nearly the detail as to location of this scan.) I guess "better appreciated" means that the radiologist can see them more clearly???
My MO said we will talk next week, but putting the three tests together, she said that "there is probably some growth in the bone related disease" but not in the liver. After reading the nuclear bone scan, I was pretty amazed at her wording -- I thought she would say something like "OMG, your whole body is a metastatic mess." I mean, it is, but she was pretty kind in her wording. Guess I'll hear what she has to say next week. Started this cycle of Ibrance already, so we won't change treatment until next month at the soonest, I imagine. I do worry that when we switch treatments, things could flip and I'm much more worried about the liver mets (maybe I'm an idiot about that?)
0 -
DodgersGirl —
I don't have a list of mets&fractures ... yet ... but I am early in the progression of bone metastases. You know already the specifics, but for those on this thread who don't, I'll describe my experience.
My one so far was a severe non impact fracture of my left acetabulum in September 2019. I didn't know I'd fractured myself until I went to a hip orthopedic doctor five weeks later. Yes, it was horrifically painful. Special circumstances led to my decision not to see an orthopedic doctor sooner. The then healing fracture was discovered by X-ray and an MRI the next day revealed details of the 3" x 5" metastasis through which the fracture traversed.
It was revealed by many scans and MRIs in November 2019, to be the only metastasis. It was decided crutches, fifteen sessions of Curative Radiation Therapy followed by essentially extended bed rest was the best course of treatment. Follow up scans in March 2020, provided the magnificent news the radiation followed by my body's healing efforts were successful.
Unfortunately, these scans also revealed the MBC already had spread to my lumbar spine, but no fractures. Repeated Curative Radiation Therapy in March. Again, a follow up scan revealed the treatment was successful, but already there were numerous new 1 cm mets through my left iliac and lumbar spine.
I now am receiving monoclonal antibody and chemotherapy infusions for palliative care and pain management.
Best wishes for many replies to your post. I too will benefit greatly from the input from others on this thread who have been living with bone mets for much longer than you and me
🌈
j
0 -
BevJen- I commented on your post on the Ibrance Thread. You can see it there. It does address your last sentence.
0 -
Cross-posted with liver mets:
Folks,
Living Beyond Breast Cancer is having their conference virtually, and it's FREE. There are some interesting sessions for all. The conference will be held on June 13 and 14. There are some heavy hitters talking about lots of interesting topics.
To register, go to: https://metsconf.lbbc.org/en/
There is no charge to attend.
0 -
Suzy - I don't have skull mets so unfortunately I can't give you any personal experience on that. With them not being on a joint surface I would expect them to be asymptomatic but am not sure. I do have to say though that seeing you being a 23 year survivor is very encouraging for me right now. I wish you the best and would be curious to hear what you find out.
0 -
BevJen, I'm not sure I would be patient (pun intended) enough to watch all the pertinent conference sessions so be sure to come back here and summarize for us!
As far as your recent scans, I would also be more concerned about liver disease than bone. I thought sclerotic meant the spots being evaluated are healing, particularly if they were seen to be lytic previously. Keep requesting a PET especially since your consultant physician is interested too. The more information the better is my motto...
By His Grace, and isn't that the case for lots of us, my mets were also first detected by orthopedic people. I had lumbar spine collapse - your broken hip sounds even worse. To answer Dodger's question regarding multiple fractures, just that one area of my back was destroyed by tumor although I had mets throughout my skeleton.
0
