It's been a bit since I've posted - but I have been keeping up with you all! I'm still holding steady on Ibrance and Letrozole. My bone mets aren't showing up on my PET scans, so I'm thankful for that. My concern is that on my most recent PET scan, another recent rib fracture was documented, with very little FDG uptake (2.8 - same as the background in my liver). My onc says that the bone is likely just weakened by the original mets, but that we'll rescan again in 3 months to see if the cancer is back.
Today, while literally doing nothing but walking through my house, I felt the rib break again - now I am in pain and also extremely frustrated. Has anyone else had a problem like this with supposedly NED bone mets? I don't know whether to be worried or just accepting that this rib is fragile.
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alana303
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Yes, I am unfortunately aware that the cancer is still there. My mets are in that rib and also my sacrum and acetabulum. The Ibrance has consistently caused the lesions to be less active - I've been on it for 2 years. But you're right - no sense in worrying. It just sucks to have this rib breaking. Nothing to do but treat the pain - is that what you do?
This is worrisome to me because I have extensive bone mets and I specifically asked if I was fragile and if I would have bones breaks ... they said “just don’t jump around or do a dismount off the high bar’ huh?
I went skiing last year before I knew about the bone spread - I golf and am fairly active... are my ribs just going to go one day without warning?
Hi to all,I am also really worried about breaking bones.
When I got the news of de novo MBC with 9 bone mets, I was so afraid of breaking, I stopped doing a lot of things.
I used to like playing golf, I've stopped. I used to be really active and now I'm really scared of moving to suddenly. I even feel I could break just turning my head when manoeuvring when I park my car...
I can hear my neck cracking. I don't know if that's to do with a bone met in C3.
I have never broken anything in my entire life. I've always felt I had really strong bones.
Do you think bones can heal and be like there were before or will they always be weak and eventually break?
My onc says she just can't say how all this will evolve.
Hi, Lucie! I too have MBC in my bones and I had never broken a bone, either, until my cancer metastasized to my ribs last summer. Since then, I have had many pathological fractures. I cannot take bisphosphonates because they gave me osteonecrosis of the jaw, so I am particularly vulnerable. I, too, like alana303, had a recent rib fracture just sitting down on my bed, and I am not sure if this happened because the bone is so weak and brittle or if it's because my new medication is not working. I won't have scans until June, but will have a CA 15-3 tumor marker drawn when I go in for my next appointment in the middle of this month, which should provide some information. I agree with you all that this is a very difficult thing to deal with.
Hi, I have Osteonecrosis also. I had a tooth extraction and the nurse gave me an injection of Denosumab 3 days later. She shouldn’t have done this as I should have been off the Denosumab for a month before the extraction and a month after. I’m going through the same problem now with a pending infection under a crown. I had three breaks in 3 ribs. Apparently when I have my scans now they don’t show so although I’m under no illusions they have healed I feel content that my bones are no weaker. I have Ibrance, Letrozole, calcium + Vit D and my monthly jab. I had to come off the Denosumab for 9 months when the Osteonecrosis set in. My Oncologist said this wasn’t a problem as it stays in the body for a long time. How is your Osteonecrosis now?Best wishes
Hi, Cheryl! Thank you for your response. I'm sorry to hear about the errors that led to your MRONJ. My MRONJ is now gone (the decayed bone was removed during a tooth extraction), but I will never be going back on Xgeva or any other bisphosphonate, so I will just have to hope for the best. I wish you well.
Thank you Dianne. Will have to see what happens. So pleased you are ok now. I saw 4 different facial/cranial consultants and they all said no more healing would happen so I have a gapping hole. Not good and I don’t want it to happen again. Sending best wishesCheryl
Lucie (and others...I replied to initial post before reading the details/responses...),
I think we each need to decide for ourselves how cautious to be. It's scary, for sure, because god forbid you fracture something. But I go back to about 3 years ago, three years into "widespread bone mets" dx., when I went to sign up for an exercise program (which I did not end up participating in...). They needed my onc's signoff and she wrote that I should not lift more than....10 pounds!!! I said "I've been hauling 60 pound suitcases onto the scales at the airport, what are you talking about?!?!". So I sort of put the warnings into perspective (for me...everyone is different...) and have just kept going ever since. I took up running last year and rather that worry about breaking a femur (I have mets there...) decided that running might strengthen my femur/bones? Again, not for everyone, every case is different.
But my point is that we should maybe examine/think/weigh risk vs. reward?
Just re-read, I sound emphatic, don't mean to be, but am rushing through a catch-up on this site, please forgive!
I don't think anyone can say what will happen or when! I still go to 4-5 fitness classes a week - yoga and barre. All I can think is that I need to live my life and try not to worry about it too much.
Hi all! Bone mets are so weird. I was diagnosed with MBC in 2013 after 19 years of being "cancer free." The quotes are on purpose as I believe that the cancer was metastasizing probably from the day I stopped chemo. When I was first seen by the oncologist at the Hospital of Pennsylvania for mbc I was put into a study that looked at the amount of bone mets and predicted who would die fairly quickly (I know- gruesome and fortunately the onc never told me about this until this year!) and I was voted "most likely to die..." And every time a radiologist reads my scans, he calls my oncologists and says, "well, she must be in a lot of pain." But I'm not, not at all. Now, either I have a high tolerance, which I doubt, because I whine when I have a headache for more than 5 minutes or, as my onc. says, this is just the way my cancer is working. It may change but I'm so grateful for this. Basically, I've never opted out of anything, including physical activity, I've wanted to do for the past 8 years (and before), including ballet and pointe, which require a lot of jumps and landings and active yoga, walking, and chasing and lifting grandchildren. I just turned 70. But each doctor knows each patient's case so mine is aware of all that I do and, as she says, the goal here is to keep me as active as I am now for as long as possible with as few drug SE as possible. So far, with some ups and downs, we've done this. I wish you all well! xoxoxo Ellen
This is interesting because they treated me like I was nuts when I said I thought my hip pain was just arthritis and exercise made it better - this after I was told my hip mets were through the marrow. I exercise low impact and play golf - I’d ski again if it wasn’t for COVID. I just got a little freaked that people’s ribs are cracking randomly.
Yeah, I know what you mean. Every time I take a spill -- I just fell UP the steps yesterday, I'm sure I must have broken something. The onc. did a dexascan a little while ago, just to check, and said that my bones were strong (enough). But...a long time ago, she also gave me an rx, which I've never used, for a strong pain killer in case I fell on a weekend....??? I'm sure I'd probably go to the hospital for that. Like I said, bone mets are weird and so is cancer. Treating it it is certainly as much art as science. xoxo
Hi Alana...Not sure it's relevant, but when I was first dx'd they mentioned a few rib fractures and, in my scan a few weeks ago, the radiologist brought one up again. These, btw, are - I think - unrelated to cancer. E.g. I recall several years ago my son hugging me vigorously and it hurt like hell for two weeks. I assumed I broke a rib or two, but thought "small price to pay"!
My sis, who also has MBC, has numerous rib fractures due, she thinks, to injuries from tripping while running, which she does a lot.
I know that you're having pain, and I've had rib pain over the course of my disease, but I mention this because I've *chosen* to view a fractured rib (or two...or three) as the price of doing business, getting hugs, running/tripping? So unless you have a reason to believe that it's mets severely compromising your bones - which seems unlikely, given your status? - maybe you can push it to the back burner? "Says easy, does hard", I know...
I do hope you get it sorted out...
Take care, be well...
Lynn
I was hanging out washing when my first rib broke. Then another two broke on the other side. I felt the first one go but not the other two on my left hand side. This was a year before diagnosis of MBC. Since having scans the breaks do show up but as stable. I had thickening and thinning of my ribs from the MBC. It’s the simplest things you do that make them fracture.I hope you get good positive results. The pain is excruciating I know but you must rest.
Thank you again for your replies! Have you ever had radiation to help with the pain of your fractures? My oncologist has recommended that, and I'm wondering if that has helped.
I had to give in to radiation on my pelvis after two years from diagnosis. It has made such a difference to my pain control. I would recommend it but everyone is different.
No I haven’t seen anyone Sandra. Only my GP who said everything was ok with the ear drums and recommended white noise. Looks as though I have to live with it. My Oncologist said it wouldn’t be my treatment causing it. So, in go the hearing aids and up goes the volume on the t.v. Thanks so much for asking.
I had some bone pain one day while golfing. Didn't even make it through the 1st hole. I had to quit. After having x-rays, they found the rib fracture and some fractures that had healed. After many tests and finally a trip to an oncologist who looked at me thinking "why is she here", at last resort I had a bone marrow biopsy in my hip. It was confirmed that I had breast cancer-stage IV at that. That's how my New Year started in 2016 with the phone call from my doc just a few days earlier.
Now 5.5 years later I have had many more rib fractures. My doc has me on Xgeva monthly since I was having more fractures while on Prolia every 6 months.
The other day I tripped on the brick patio landing totally on my right side. I am sure that something should have been broken but so far so good. That was about a month ago.
Last Tues I played golf for the 1st time in over a year. Being dehydrated didn't help-bad me! I was in so much pain that I had to use a pain pill in the afternoon & at bedtime. Today I am still on the stiff side. Hopefully I can play golf again on Tues.
The good news is my CA 27-29 is just 4 points off of being in the normal zone after being on it since Sept 2020. I just hope that is not causing the pain in some of my joints.
I have had my 2 Covid-19 vaccines-Moderna. The day after my 2nd vaccine I was in bed all day. My sweetie took my temperature in the evening-103°.+ After a recommendation from the on call doc, I went to the ER. They did keep me overnight since my O2 was about 85%. No one could figure out why. Twenty four hours later the O2 was up to 95% so they sent me home. Note to self and others: stay out of the hospital if at all possible. That really wore me down.
Otherwise, like the others I am just rolling with the flow.
May everyone's treatment produce positive results and no negative consequences.
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